Vasculitis Foundation in New Mexico

YOU'RE INVITED: Meet me at Owl Cafe on Sunday January 22 at 1PM

2012-01-20T15:03:00.000-07:00

WHO: I am meeting some new members. Mary, plus her son John who is age 14 and diagnosed with
GRANULOMATOSIS WITH POLYANGIITIS (aka WEGENER'S) (aka GPA). I would love to see some of you show up as well.

WHEN: Sunday January 22, 2012 at 1300hrs (1PM)

WHERE: Owl Cafe, 800 Eubank Blvd NE, Albuquerque, NM 87123-1200‎

NOTE: Turns out Deli-Berry is Closed on Sundays.

WHAT: This will be an informal meeting to meet John and get him some information to deal with GPA.

It could also be a chance to catch up with some of you and discuss how this chapter, meaning me, can better meet your needs. I have been focused on the national level for a time, but part of that is because you have been so silent. I hope that means you are doing well.

We also have to discuss the capter meeting schedule. I am inclined to go quarterly, but you should have a say so, don't you think? Speak up! If you cant be there Sunday, talk to me by Email so I know what is going on with you.

What awareness activities would you like to help organize, and then participate in? Speak up!

Would you like me to get a doctor to come talk with you? Then I need your input to figure out the best time. I cannot invite a doctor to a meeting where nobody shows up.

Its time for you to step up and take charge of your condition. Some of you have told me you are willing to help, but it seems you are waiting for me to set something up. I cannot set something up until I know who is willing to help me make it happen. Let's get together and figure this out.

Come one come all to the Jellicle Ball, but leave your cats at home just this once.

Vasculitis Foundation YouTube page updated

2011-12-28T09:54:00.002-07:00

Hello Everybody,

We recently finished uploading DVD content from both the 2008 and 2010 symposiums. These videos include the full content from both DVD sets. You are welcome to view them online, and if you would like to purchase a set of DVDs to watch at home, there is a link to the Vasculitis Foundation order page on the YouTube channel.

We hope you all get a tremendous take away benefit from these instructional sessions, and then look forward to attending symposiums in Chicago and Atlanta in 2012, where the most recent developments in vasculitis treatment will be presented.

I was very happy to be involved in the effort to put these educational materials online. You can view the results of those efforts at the link below, and perhaps I will provide a means for show and tell at a future chapter meeting.

http://www.youtube.com/user/vasculitisfoundation/featured

www.youtube.com

UNC Kidney Center Podcast: "Being there for Your Friend with Vasculitis""

2011-12-28T09:50:00.000-07:00

UNC Kidney Center: Being There for Your Friend with Vasculitis

This podcast comes in the format of an audio interview with Dr. Ron Falk, UNC Kidney Center Director and Diane Shaw, who is both a Past President of the Vasculitis Foundation and also a vasculitis patient. The interview is conducted by Delesha Carpenter, PhD, MSPH.

It is intended for friends of patients with vasculitis to help them better understand this condition, but the overview information would be useful to a newly diagnosed patient as well.

You can also see related podcasts anytime at this web page:

http://www.unckidneycenter.org/podcast.html

Happy Holidays!

2011-12-15T18:12:00.001-07:00

I REGRET NOT BEING ABLE TO ATTEND THE DECEMBER MEETING TONIGHT

Recent work and personal commitments have me scrambling to get things done, and I am actually behind on some commitments. As I received no RSVPs for this meeting, I do not anticipate my absence will affect anyone. However, if any of you should decide to go, please let me know that you did go and what you did to make it a vasculitis event.

I am, as always, available to schedule a meeting with any vasculitis patient or caregiver who needs support or advice. You need only contact me to set up a meeting.

POSSIBLE CHANGE IN 2012 MEETING FREQUENCY

Considering the low attendance at monthly meetings, which is actually zero for some meetings, I am contemplating reducing the frequency in 2012 to quarterly meetings. I will make that decision soon and follow up with another announcement. If I do change the frequency, then the new schedule will most likely be February, April, August, and December.

REACHING OUT FOR HELP IN 2012

I would like to reach out again for ideas about what you would like to see and do at these meetings. This chapter is in a Catch-22 situation with planning events. Without more help from volunteers, and a reasonable certainty of attendees, I have been reluctant to spend the extra time and money that are needed to set up talks by doctors and other organized events that perhaps you might be interested in attending. I know some of you have expressed a willingness, but the timing never seemed to workout.

For example, with $500 for a booth fee and enough volunteers to man the booth for two days, we could participate in events like the NM Health Fair, and other events throughout the year. The key would be to get a group of people committed to help, and pick the dates and events we would like to be involved with.

Another example, some of us have talked about attending the Run for The Zoo. With a little planning, we could attend the 1K or 5K walk /run as a registered group, and wear T-Shirts, carry a banner that would most likely get noticed by the local news media. I could even arrange an interview. You may not be able to walk 1K, but what about your children? What about your niece, or your grandson? They can walk on your behalf.

The best way to ensure a good turnout would be for all of us to reach out to our friends and families. Everyone in the family, ages 1-100, could participate and help spread awareness. Awareness ultimately equals funding for seed grants, either directly through private donations to the Vasculitis Foundation, or indirectly through public funding that is connected to public awareness. As more people are made aware about vasculitis, and its impact on entire families, the patients become the immediate beneficiaries.

To become a member or make a donation now, go to these web pages:

Memberships: http://www.vasculitisfoundation.org/vision/join

Donations: https://contribute.vasculitisfoundation.org/donate/info

RECRUIT YOUR FRIENDS AND FAMILY MEMBERS AS VASCULITIS ADVOCATES

How many times have you seen that look on a loved ones face? You know they want to help, but do not know what to do. They even ask you, "How can I help?" but you know they cannot take your pain. But they can help in other ways.

First of all, by becoming a paid members, they can help keep the Vasculitis Foundation in the business of helping patients like you, to get the information needed to find better treatments and to give support.

Secondly, by donating, they can contribute to the number one private funding agency for research into new treatments and cures for vasculitis. That's right. The Vasculitis Foundation is not just a "feel good" organization, they also contribute directly to cutting edge vasculitis research.

So, when you think about your New Years Resolutions this year, consider renewing your membership, recruiting your friends and family, and ask them to participating in local events that will help spread awareness and education. If you are willing, have any of your friends or family contact me anytime for more information, or just show up at one of the meetings so we can talk about what to do next. The better your friends and family are informed about vasculitis, the better support they can provide to you, as well as help grow the organization.

IF WE BUILD IT, WILL YOU COME?

After speaking with chapter leaders from around the country, most chapters of the Vasculitis Foundation face similar challenges with "If we build it, will they actually come?"

The way I see it, any grass roots chapter organization begins with attendance at regular meetings.
Since I do not know who might show up, I usually go to the meetings prepared to either orient a new patient or else discuss ideas for awareness and education events. If you can get your families involved then we may be able to drum up the able bodied volunteers we need to make an impact.

So, what do you say? Will you help? You can start by staying in touch to let me know you are aware and that you care.

Then if you can take that next step and pass out a few brochures to people you meet, let them know about vasculitis, and spread public awareness about this condition. These are small things anyone can do to make a difference.

I am going to begin right now by arranging memberships for own my parents and siblings.

Wishing you a Happy Holidays,

Joseph Carpenter
Chapter Leader for New Mexico
Vasculitis Foundation

A better health care system now within reach | Physicians for a National Health Program

2011-11-30T03:20:00.000-07:00

A better health care system now within reach | Physicians for a National Health Program

There has been a lot of debate about health care reform since the Patient Protection and Affordable Care Act was passed in 2010, and the debate continues.

On the one hand, many people feel that the new law, and it is the law of the land, imposes too much of a burden on the corporations that make American business go. In short, they believe reform is too expensive.

On the other hand, many people, different people, believe the new law falls way short of its original intention, which was to reform the healthcare system to save money and improve services. In short, they believe failure to reform is too expensive.

To be sure, some reforms are underway, but they mostly involve relatively minor changes to the existing private insurance system compared to a true renovation of the health care system.

For nearly two decades, since about 1993 or 1994, some physicians have been calling for a single payer healthcare system that promises to eliminate the 30% overhead that we now spend on Administrative costs. The idea is we allow doctors to focus on medicine, and establish a fair payment system that is less expensive for the patient, while at the same time improving the quality of services.

As patients and caregivers, any person associated with vasculitis has a personal stake in healthcare reform. Without reforms, you can look forward to another generation of overly expensive and complicated healthcare with plenty of denied claims for medically necessary procedures.

At this point I do not advocate one proposal over another, but I am interested in learning about all of the options. The least we can do is to make ourselves aware of the facts of the issue so we can act in our own best interests as citizens. Do not rely on the mainstream media to give you the information you need to know.

If you have not yet learned about this proposal, I encourage you to start with a recent article that gives a bit of an overview. Then you can explore the rest of the PNHP site to learn more about this particular option.

A better health care system now within reach | Physicians for a National Health Program

Chapter Meeting Thursday, Nov 17th

2011-11-17T02:46:00.001-07:00

I will be at Deli-Berry, 2520 Juan Tabo Blvd NE, at 6PM tomorrow. Anyone who wants to stop by and get caught up, you are welcome.Any new patients out there? We can get you connected to resources provided by the Vasculitis Foundation. Hope to see you all there!: Joseph Carpenter

‪Biologics and Systemic Vasculitis‬‏ - YouTube

2011-08-09T18:04:00.001-06:00

Dr Philip Seo, Co-Director of the Johns Hopkins Vasculitis Center, was interviewed at the 27th Annual Congress of Clinical Rheumatology (May 12-15, 2011) in Destin, Florida. The video interview was conducted by Global Medical News Network (GMNN), a medical news wire service (formerly known as Elsevier Global Medical News). He had the following to say about biologics, and specifically about Rituximab.

‪Biologics and Systemic Vasculitis‬‏ - YouTube

Eat for Health: Books by Dr Joel Fuhrman

2011-07-30T15:07:00.000-06:00

If you are looking to eat better, so you can improve your health and your lifestyle, the books by Dr. Joel Fuhrman will give you a place to start learning how to do it right.

You can start linking to reviews from this page, and even find the book in your local library:

http://books.google.com/books/about/Eat_for_Health.html?id=44mBPgAACAAJ

http://books.google.com/books/about/Eat_for_Health.html?id=44mBPgAACAAJ

Whether your goal is to lose a few pounds, or make a dramatic change in lifestyle to life healthier, you will not waste time with these books. Look for them in a library near you.

: Joseph

Movie Review: Fat, Sick & Nearly Dead

2011-07-25T16:50:00.002-06:00

I recently stumbled across a film in Netflix that may change my life, and it also made me think of all the vasculitis patients out there who might benefit from considering a lifestyle change. Just taking meds is not enough to protect your longterm health.

I have long believed, and I tell my daughter all the time, that there are at least three areas of personal health where vasculitis patients can take action to positively affect their health. They can make choices regarding the quality of their diet, exercise, and sleep. You can list objections, but the fact remains that how you manage these three things is up to you.

One link worth special mention is the jointhereboot partners page (listed at the end of this article), where you can link to specific information by people featured in the film, including Dr Joel Fuhrman, a medical nutrition specialist. Every patient is different, but if you are trying to reduce your prednisone, your doctor may agree that eating natural foods and sticking to an exercise program is one healthy way to do it.

If you ever felt powerless regarding your condition, this film, and the ideas presented in it, can give you an action plan that will make a huge difference in your life. Watch the film, then call your doctor and talk it over. You do not know what you are really capable of, unless you try.

Now the key to success for me, is to transform intellectual understanding into daily action and transform habits on a permanent basis. That is what the Reboot Movement is all about.

I read and study every day to improve different aspects of my life. For example, when learning to be a better basketball coach, I learned that it takes at least 28 days of concerted effort for a human being to change a habit. Now, instead of challenging young players to improve their ball handling habits, I am going to challenge myself to improve my diet and exercise habits.

Going back to those with a chronic illness, the film repeats over and over how important it is to consult with your doctor and have blood levels checked when you have a condition that requires medication. As you will see, change is not easy, but you will also see how both of these men were able to reduce or eliminate their medications as a result of their own actions.

So, here is some information about the film.

Fat, Sick & Nearly Dead
1h 37m 2010

Director Joe Cross takes a journey of healing to examine and change his own life choices, and along the way meets Phil Staples.
This movie details how they both dramatically improved their lives by taking control to regain balance. Both men were obese. Both men were also diagnosed with Uticarial Vasculitis, so the odds against them even meeting one another were phenomenal.

The two success stories are a testament to what is possible when life changing awareness efforts go grass roots. They launched a movement to help other people reboot their lives. This film takes those grass roots efforts and brings them to a global audience.

Here is the official trailer on YouTube:

Another video that is also compelling is Joe Cross's interview with Cyndi Edwards on Daytime.

The statistics do not lie. According to U.S. Centers for Disease Control (CDC) figures, "About one-third of U.S. adults (33.8%) are obese. Approximately 17% (or 12.5 million) of children and adolescents aged 2—19 years are obese" (citation below). In the film, a nutritionist at Brigham & Womens Hospital named Stacy Kennedy, MPH, RD, LDN, states "the kids of today are not expected to live as long as their parents." That is very alarming, but also believable when you look at how kids eat. Put it all together, and I think everyone should watch this film.

Cited from: CDC Obesity and Overweight Trends
http://www.cdc.gov/obesity/data/trends.html

Most powerful quote from Phil Staples:
"What advice would you like to give to others considering a Reboot or a lifestyle change?
PHIL:Please stick with it the first 4 days, I promise you all the detoxing and the feelings will be over soon. On day 4, you will feel great and the rest of the Reboot will be a blast. You will feel better, lose weight, and your body chemistry will be where your doctor wants it. All the doc will be able to do is smile and shake his head at the ease of it all."
Cited from: JoinTheReboot Expert Blog article, "Phil & Bear: Where are they now?"
http://jointhereboot.com/phil-bear-where-are-they-now/

Companion website:
http://www.fatsickandnearlydead.com/
Includes more about the stories, recipes, juicing testimonials, links to YouTube and FaceBook, and to the DVD. Also links to the Reboot Movement where you can get more detailed information about how to go about planning your own personal reboot.

http://jointhereboot.com/
This website gives you all the information you need to evaluate the reboot program, and if you decide to go for it, all the information you need to make it a part of your life.

Netflix description:
"Focusing on two men whose bodies have been trashed by steroids, obesity and illness, this documentary chronicles the rigorous healing path -- including a two-month diet of fruits and vegetables -- that both attempt in a bid to rescue their health."
Note: I would suggest it might be worth trying Netflix for a month just to watch this film.

If you already have Netflix, here is the link: http://movies.netflix.com/WiSearch?oq=fat+sick&ac_posn=1&v1=Fat%2C+Sick+%26+Nearly+Dead

How many of you are willing to challenge yourself to a personal health reboot? Let me know and we can support one another.

The Silent Killer | LIVESTRONG.COM

2011-07-18T21:36:00.001-06:00

The Silent Killer | LIVESTRONG.COM

I have been using Livestrong.com, along with a related mobile app on my phone, to keep track of my diet and exercise. I know roughly how many calories go in, and I know roughly how many calories get burned, so I can intelligently keep track of these things.

As you all surely must know, the number one thing you can do to improve your health, without medications, is to improve your diet and exercise. By improving your baseline, you will see other benefits, such as a decrease in the effect of your side effects. The healthier you are, the better your overall condition is going to be.

So, one way to do this is with the free services at www.livestrong.com. They will give you the tools you need to track what you eat and how you exercise, so you can improve your bottom line. Just knowing the data will help you make more informed choices.

There are also a ton of articles about ways to stay healthy. Unlike some other sites, it is a not-for-profit effort, so you won't be asked to buy anything you don't want.

You can enter your data about food and fitness in any web browser, and if you have an Android, iPhone, or even just an iTouch device, you can also enter all this data on the go. It takes a few seconds to do, and it will make all the difference in your health, and in your life.

Join me in a healthier lifestyle. Try the tools at www.livestrong.com today.

PS: The article referenced above is all about avoiding processed sugars to reduce the risk of diabetes. it is also a good read, since every patient with vasculitis is also at high risk for diabetes. I encourage you to read the article, and perhaps look for the book, Sugar Nation, when it comes to a library near you. Highly informative stuff.

Recycle Old Electronics and Make Money for Vasculitis

2011-06-27T16:56:00.000-06:00

Here is a no brainer. One, we all have those old electronic devices we never quite know what to do with when we no long need them. Two, we should always be on the lookout for ways to make money for vasculitis research. Here is an easy way to do both...

Collect Old Wireless Cell Phones, PDA's, iPods or Digital Cameras, then send them to Recycling for Charities using the Vasculitis Foundation link shown below.

Depending on the model and condition of each item they will donate a % of market value for every item to be refurbished, and a flat donation amount for every item that is recycled.

Those who wish to make a charity phone donation can initiate the process by simply collecting any sort of unused cellular phone, PDA, Palm Pilots, digital cameras or iPods. If you know many people who would like to donate their electronic devices, take recycling a step further by organizing fundraising recycling drive or corporate event. The more people that donate old cell phones, the more the environment and local charities can benefit.

Start here:

Recycling for Charities - Vasculitis Foundation
http://www.recyclingforcharities.com/charities/vasculitis-foundation-115.html

New section on NMVascultis Education page for Syndicated Medical News

2011-06-22T19:47:00.000-06:00

I am crawling out from under the rock I found myself under and added some new resources to the Education page of the NMVasculitis website. There are some great resources there for general medical news, and the MDLinx service will deliver specific topics right to your inbox:

Syndicated Medical News
https://sites.google.com/site/nmvasculitis/Home/support/education#TOC-Syndicated-Medical-News

June Meeting tonight - agenda is ideas for the VF website

2011-06-16T15:41:00.000-06:00

The meeting tonight is again at 6PM at Deli-Berry (2520 Juan Tabo Blvd NE). You can find more details and map links on the nmvasculitis website:

http://www.nmvasculitis.org/Home/support/meetings

I hope to see some of you tonight, at Deli-Berry. I will be there at 6PM, and I will stay at least an hour. If someone joins me, we can stay as long as you like. If you cannot make a meeting, call me. I will be happy to meet for a drink sometime.

My agenda tonight is to solicit ideas about improving the Vasculitis Foundation website. I am on the committee to select the company which will redesign the website going forward, and I am very interested to hear your ideas about how things can be improved. If you cannot make it to the meeting, then please send me your thoughts in Email, or call me.

I want to take this opportunity to apologize to all of you for not posting to this blog during the past few months. I have answered phone calls and have been active in other ways, but not in ways that are apparent to most of you. Most of you never actually come to meetings, so it is an act of pure faith to keep holding them. I believe it is worthwhile for those times when someone does come. Sometimes it is a new patient with that deer in the headlights look, desperate for information on how to get started. Sometimes it is a chance to see one of my vasculitis friends, some of whom are becoming old friends. If and when you feel the need to participate in the vasculitis community, you can know that I and perhaps a few others will be there.

The flat fact is, I would love to see you. I feel that way every month at times like today, when I sit here wondering if anyone will show up and who they will be. I would love to see more patients, caregivers and friends of vasculitis come out to the meetings. Not only to share the practical knowledge about vasculitis, but also to break bread and share the day to day stories about your lives.

I would really like to get to know you better. If you have any interest in cultivating friendships with people that can actually understand what you are going through, I beg you to come out to the meetings, and get to know each other better. I beg you to respond to the Email group, and share those little things -- large and small -- that make us all who we are.

Do you sometimes consider the connection between how increased awareness about vasculitis directly impacts the available public funding for research? Then do you think about the obvious conclusion that more research would mean a greater chance that more and better treatments will be developed? Have you also considered that how you include vasculitis awareness in your day to day life is a huge part of that effort?

It is not the big things that make the most difference. Sure, we can organize some event to spread awareness. But I have learned that is very hard to do without any help. It requires a concentration of energy and money on a particular place and time for a limited effect.

The more effective approach is to wear it on your sleeve and tell everyone you meet your story. Do not hide from it, share it. When you have told your story a few times, it gets easier, and it really does make a difference. When you tell it enough, you can do it without relying on just the sad parts, or the hard parts, you can eventually related how even the challenges can bring light into your life. People will respond to those stories as they relate to you on a personal level.

Those people you touch carry your story with them, and they will tell it to others. They will remember your story when they vote on legislation that impacts health care, and they will remember your story when they have the chance to make other choices that impact chronic illness. Even if they never come directly in contact with a vasculitis patient ever again, your story will impact how they relate to other things in their lives which will ultimately spread those little ripples that will positively impact you. Put it out there in the universe, and it will come back to you in ways you cannot imagine possible.

As always, the Vasculitis Foundation is here to help you connect to each other, and to connect with more information. But you are a part of that process, and I need your help. Just talking with you helps me to help others. I will spend time this summer reconnecting with those of you who I have met, and connecting with some of our newer patients whom I have not yet met face to face.

Cheers!

March Madness in New Mexico

2011-06-16T15:13:00.000-06:00

I began this message sitting at the March 2011 meeting of the Vasculitis Foundation in New Mexico. It sat in drafts for the two months since, and I went back to it today (6/16/2011) and added some observations. If it seems a little random, well, maybe it was.

Pondering recent events, I am reminded of the difference between a 10/90 and a 90/10.

Are you a 10/90? Someone who makes a general plan for about 10% of the project, then spends the rest of the time figuring out the rest and smoothing out the kinks

Or are you a 90/10? Someone who throroughly researches and plans out every move before they initiate the action phase of any plan.

I find it amusing that most people would not disagree that it is better to do a few things very well, than to do many things poorly. In fact, we call that specialization and the world seems to be moving increasingly in that direction.

So what is possible with Vasculitis?

Who are the faces of vasculitis?
We have children, housewives, and military veterans. We have brothers, sons, and fathers. sisters, daughters and mothers. All walks of life are represented. Even though they include a subset of very rare illnesses, the vasculitides are representative of people from many walks of life. The symptoms hit people without regard to socioeconomic status or how well or poorly you have lived your life. You do not get rewarded with a cure for being good, nor do you get punished with "extra" vasculitis if you have been bad. Santa Clause will not hold vasculitis against you if you just don't feel up to participating on those down days.

For non-patients, we struggle because we care about our loved ones. We want to see them happy. We want to see them active. We want to see them well. It is challenging to stand by on a down day and remain quietly supportive when there is really not much we can do. That feeling of powerlessness rumbles inside and makes us yearn for something to change.

Patients need caregivers to be considerate of their limits. Those limits that can change day by day depending on how their various symptoms affect them. Everything from side effects to medications to the ever present chronic fatigue means that patients must make smart decisions about how they will spend the energy they have on a given day.

Looking at the other side of the coin, patients also need the encouragement of caregivers. With the daily burden of feeling unwell, the constant pressure to rest, and the wearisome mental reality of side effects (the meds keep you alive, and the meds also make you feel unwell.) Patients without caregivers have one less ally in their corner. One less cheerleader urging them to continue, day by day, putting one foot in front of the other.

In the balance, patients and caregivers are allies, but they do not always share the same goals. Some days, patients just want to let it all go, and stay in bed, whether that is the right thing to do or not. Caregivers often probe those limits, and it must drive the patients crazy to hear that constant question: How do you feel?

The inevitable answer is always, "Not as good as I would like to."

February 2011 Vasculitis meeting moved to Friday 2/18

2011-02-14T22:30:00.000-07:00

This is a one day shift to accommodate my very busy Thursday. I work all day, then coach games for one team, then coach a practice for another team.

The February meeting of the Vasculitis Foundation in New Mexico will meet on Friday, February 18th at 6:00PM. The location is at our current home away from home at Deli-Berry.

Deli-Berry
2520 Juan Tabo Blvd. NE
Albuquerque, NM
(505) 508-0487

Please update your calendars. If you plan to attend, please let me know. If you plan not to attend, look on this as your opportunity to reply and let me know how you are doing. I have not heard from some of you in a while.

If the Friday meeting day works better for you, let me know and I can consider moving all the meetings to Fridays.

Looking for value added? I will bring DVDs of the 2011 VF Symposium presentations, and we can play selections from that. You have the option to buy them, and I will keep bringing them to meetings if showing them off manages to draw more people to the meetings. You have to show up to see them, or order your own set.

Following up on the last meeting, we have a potential Golf Tournament for Vasculitis in the works, so we might get some new news about that. We should also bring our thinking caps to come up with more awareness ideas. Mine is to commission a poster/TShirt for the NM Chapter that we can wear and/or sell at events.

I will have brochures, lapel pins, and T-Shirts for anyone who attends. Be there or be square.

Take the brochures back to your "other life" and spread the word. At your doctors, at your homes, and even at the grocery store! Tell everyone you know about vasculitis.

See you all on Friday!

Baseball Coach donates kidney to player with ANCA Vasculitis

2011-02-10T13:55:00.000-07:00

Wake Forest Coach Donates Kidney To Player

by JEFF TIBERII

February 9, 2011 from WFDD

In college athletics, coaches demand a lot of their players. So, for Wake Forest's baseball coach, it was an easy decision for him to give something back to one of his players in need: The coach donated one of his kidneys.

"TIBERII: Kevin was a highly regarded baseball prospect coming out of Georgia, projected as a future major leaguer who could've made almost a million dollars from his first contract, had he skipped college and turned pro. But he didn't - committing to Wake Forest. However, Jordan got sick during his senior year of high school and doctors diagnosed him with ANCA vasculitis, a rare disorder where a person's white blood cells attack healthy tissues."

[There may be more to this story, like a more specific diagnosis, but it is a story worth sharing... -- Joseph]

The source is copyrighted. To read more go to:

http://www.npr.org/2011/02/09/133629790/Wake-Forest-Coach-Donates-Kidney-To-Player

January Meeting RSVP

2011-01-19T18:54:00.001-07:00

There is a chapter meeting scheduled for tomorrow night, Thursday January 20.

As usual the meeting will be held at Deli-Berry, Located at 2520 Juan Tabo Boulevard NE. See www.deli-berry.com for details.

Ok here is the deal...

My daughter and myself have obligations that conflict.

I can get there by 7pm, but not by 6pm.

I need a volunteer to run the meeting tomorrow. Reply when you get this call me at 505-750-3580.

If I don't have a volunteer to run the meeting tomorrow, then I will treat anyone who goes to a frozen yogurt treat - on me.

I will make arrangements with Deli-Berry IF you rsvp with me before tomorrow to get on the list. Without an RSVP, I'm afraid you're on your own.

Sorry for the late notice. I have been trying to make other arrangements. I should of reached out to you guys sooner.

I will stop by the deli tomorrow. Probably I'll be there between 630 and 7pm. So if you go, you can look for me then.

Thanks everyone. Hope you're having a great and healthy January!

Be well,

: Joseph

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January Drifts Along, next meeting in 11 days

2011-01-09T20:00:00.000-07:00

Well hello everyone,

You may or may not know that I also coach young athletes on two different basketball teams. The months between October and March, and especially January through March, tend to be very busy as I juggle my work schedule, my coaching schedule and try to keep my head above water on other projects.

The work I do for the members of the Vasculitis Foundation never stops, but during these months I am a bit less active than at other times. I beg your forgiveness for any perceived lapses, and I assure you I am available if you should need help with anything. Mostly that means if you want to talk, just reach out to me and I will make time for you personally.

I learned yesterday about another young patient. There is a boy, 13 years old in El Paso, TX, who has been diagnosed with Wegeners Granulomatotis. Even though El Paso is almost 5 hours away by car, I have invited them to participate in our chapter, which is the closest. In addition to Haley, 11, and Meaghan, 18, we have a few young adults in this chapter alone.

PS - Bonnie in Taos, no longer has the distinction of being the longest distance member of our chapter. Sorry Bonnie, but we still love you and I would love to hear how you are doing.

NEXT MEETING

I would also like to introduce a simple idea at the next meeting. What if we do one awareness event, even a simple thing, every month this year? We can think about a larger event for Awareness Week, but if we do one simple thing every month, then we will be spreading awareness. Start thinking of ideas folks, because to do this right I will need your help and the help of your family members. Nothing complicated, but I think we need to adopt a Just Do It attitude about awareness.

Our next meeting is on January 20th at 7PM. We will continue to meet at the Deli-Berry restaurant on Juan Tabo Blvd NE since that has been a comfortable place to meet and I personally love the food there. The sandwiches are great, or people can stick to coffee and tea, which are also excellent. Details about location, etc, are on the website http://www.nmvasculitis.org.

At the next meeting, in eleven days, whoever attends will plan something to do before the next meeting. Why not come join me and put your cards on the table too? Together we can think of something to do to promote awareness about vasculitis. I may introduce some suggestions in a later post, but for now, put your thinking caps on.

For example, here is one of mine... I would like to coordinate an art campaign. This chapter needs a logo, and I would like to inspire some artists to help create awareness posters with a Southwestern theme that I can then post at various businesses to help put the awareness message in front of the public eye. If you are an artist, and this appeals to you, please consider putting forward your best foot and showing us what you've got.

Everyone else, even if you do not plan to attend the meeting, send me your ideas please.

See you later alligators!

: Joseph Carpenter

Email from this blog is now "fixed"

2010-12-16T22:48:00.000-07:00

For the record, and so you see how it will look, I am also posting this message to the blog.

---------- Forwarded message ----------
From: Joseph Carpenter
Date: Thu, Dec 16, 2010 at 10:46 PM
Subject: Email from the NMVasculitis blog is now "fixed"
To: NMVasculitis

Ladies and gentlemen,

Security Change To Blogger Leaves BlogSend Email Distribution Broken

As you all know, the blogs posts were sent automatically to our Google Groups mailing list, and then you got a copy as if I had sent it to you personally. That feature was broken in mid-November. I did not notice until December, so if you missed a few announcements, please visit the blog to read them at your convenience.

The big deal is this. Instead of appearing to come from the posting author, usually all posts coming from Blogger will appear to come from Blogger <no-reply@blogger.com>, regardless of who wrote them.

I have set up the workaround, so instead of appearing to come from "Joseph Carpenter", group messages that originate from the blog will appear to come from "Blogger".

It also means that when you reply to one of those posts, instead of coming to me, you will have to send it to the group, or manually add my address back in the recipient field. It is a pain in the butt.

All the people who get the Google Group mail from NMVasculitis, must add "no-reply@blogger.com" to their whitelist of acceptable senders if they have a spam blocking tool.

I have sent messages declaring my disapproval, but you know how it is with 800 pound gorillas. They pretty much do what they like.

I will give it a month or so, then if they do not fix this in a satisfactory way, I may choose to move my blog and/or website to another platform to regain the easy management with Email notifications.

WHAT HAPPENED FOR ANYONE WHO CARES TO KNOW

Google Blogger made a change to the way they send out Email. They no longer spoof the author address, which was a good thing, but instead use no-reply@blogger.com as the reply to address. That works on paper as a temporary fix to some unidentified issue they were having, but breaks several real world functions in the way Blogger interacts with Google Groups.

If you manage a blog in Blogger that is also set to send mail to a Google Group, here is what you need to know... To workaround this error, the google group owner must add no-reply@blogger.com as a member of the mailing list. Then you have to set that new "member" to receive no Email, and set them so that all posts are moderated. Otherwise, anyone who spoofs the no-reply@blogger.com address, and it will happen, will also be able to spam your group.

Thank you,

--
--
Joseph Carpenter
Albuquerque Chapter Leader
Vasculitis Foundation in New Mexico
Parent, daughter with CSS (DX March '08)

Contact: http://www.nmvasculitis.org/Home/about-cnmvf/contact

Vasculitis Foundation in New Mexico - Albuquerque

http://www.nmvasculitis.org - http://www.vasculitisfoundation.org

Test Post 5 - Does this fix BlogSend?

2010-12-16T21:50:00.000-07:00

Ladies and gentlemen,

I noticed earlier tonight that the feature that copies blog entries to the mailing list was not working.

I believe that stopped working in November when Google Groups made a change to the way they send out Email. they no longer spoof the author address, but instead use no-reply@blogger.com as the reply to address.

This is the latest in a series of tests, and the first one I suspect will actually send to the list again.

If you get more than one of these Test Post messages, please bear with me while I work out the kinks.

Thank you,

Joseph Carpenter

Test Post 3 - Still troubleshooting No Email from blogger

2010-12-16T21:44:00.001-07:00

Test Post 3 - Still troubleshooting No Email from blogger

Test Post 2 - BlogSend is broken and I am working on it.

2010-12-16T21:41:00.001-07:00

Testing a post sent directly to me, so I can troubleshoot the reply-to address coming from Blogger.

Test Post December 16th

2010-12-16T21:28:00.000-07:00

It has come to my attention that the mailing list does not seem to be working properly.

This message is a test to help troubleshoot that issue.

If you see one or more of these "Test Post" messages come in, please just delete them and bear with me while I figure out what is going on.

December Meeting CANCELLED due to freezing roads

2010-12-16T17:37:00.000-07:00

Sorry for the very short notice folks.

I am stuck in another commitment across town. Meaghan was going to cover the meeting tonight, but the roads here are icing up early, so I told her to stay home. There are a few brochures at Deli-Berry, and I am going to arrange with the owners so anyone who shows up tonight can get a small yogurt on me for showing up.

The best advice I have for you is stay home, be safe, and try to come to the next meeting on January 20, 2011.

If you need information or support, contact me by Email through the website, or call me by clicking the Call Me button on the blog or in the website. That button will connect you with me anytime, or if I am not available that moment, you will get my voicemail so I can call you back. I can also meet you online for an online meeting if you have a webcam. Just contact me to set up a good time.

See you all in January. Call me anytime you have any questions at all, or when you get ideas for awareness events out chapter can do together.

Joseph Carpenter

Parent, daughter with CSS (DX March '08)

New Mexico Chapter Leader

Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact

Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org

Vasculitis Foundation - http://www.vasculitisfoundation.org

December Meeting

2010-12-15T20:16:00.001-07:00

Come one, come all, to the December meeting of the Vasculitis Foundation.

The meeting will take place at Deli-Berry on Juan Tabo on Thursday at 6PM. Details and a map can be viewed at www.nmvasculitis.org/home/support/meetings

Brochures will be available for you to take back to your doctors, and we can make a list of awareness ideas for the upcoming year.

We hope to see you there.

We wish you a safe and happy holiday season!

Published with Blogger-droid v1.6.5

November Meeting Wrap-Up

2010-11-20T03:11:00.001-07:00

Vasculitis Foundation in New Mexico
Albuquerque Chapter Meeting
November 18, 2010
Deli-Berry Restaurant

Present:
Joseph C. (CSS family)
Meaghan C. (CSS patient)
Dennis W. (WG patient)
Rupal P. (Family - WG suspected, mother still undiagnosed)
William C. (CSS family by telepresence in Skype)

We met at Deli-Berry. When I arrived, Dennis and Rupal had already introduced themselves and were busily sharing information. Rupal mother is still undiagnosed with a pending Wegeners diagnosis.

I initialized Skype and called William, who had indicated an interest in joining this months meeting. He remained connected throughout the meeting and as the only remote participant, he was able to use video and text chat. With multiple recipients, only voice connections are possible.

Most of the meeting was spent sharing links to sites that are already available on the Education page of www.nmvasculitis.org. We discussed the usefulness of www.uptodate.com, for those who can get access. Recent changes to that site allow for temporary memberships, so it is now affordable to most anyone. Rupal has two family members who are physicians, so she sends them the links for which she wants full text, and they send her the information.

We all shared the names of a few doctors, and a huge oversight was corrected. We learned that NM Arthritis Associates has several rheumatologists on staff who are already familiar with vasculitis. Those names will be added to the list soon. William used to be a board member for the NM Arthritis Foundation, so he and I may have more to talk about in terms of learning from that experience to advance the efforts of this chapter.

You are all encouraged to share the names of your good doctors who know about vasculitis on the Vasculitis Doctors Form. When you do, those names are made available to benefit other patients. If you do, then others will be more likely to also share and you will likewise benefit. So, sharing information is in your best interest.

Joseph discussed that it would be nice if access to full text articles was a membership benefit for paid membership to the Vasculitis Foundation. Then also placing them in an corss-indexed structured, database, like a WIKI. Imagine being able to search through articles on any topic that interested you. Just an idea at this point but leveraging the army of members to find and submit links and articles, then having it peer reviewed to validate the information. What a lofty but also worthwhile goal.

We did Skype at the meeting between about 6PM and 8PM. One person Skyped in and was able to participate more or less fully with the meeting.

I will use that technology again at the next meeting. You may also can find me in Skype from time to time. I am more often online in Google, but have access with Google, AOL, Skype, Yahoo, and even ICQ.

There were five at the meeting, including one remotely. Which was awesome.

Our next chapter meeting may be online as well as at Deli-Berry

2010-11-10T02:00:00.001-07:00

[To view this video, you have to look at this post online in a web browser. Email probably will not play the video. I have been told the microphone for this webcam (Logitech HD Pro Webcam C910) is very sensitive so if this sounds loud to you, feel free to use the volume control in the video player to adjust it according to your preferences. Also, this video is hosted in my SmugMug account, so if you have a video you would like to 'share with the class', please send it to me and I can host it for you privately.]

I am figuring out some new webcam technology, so I may either record some stuff at the meeting, and then later post it, or if I can get WiFi, the webcam, etc, all working, I may broadcast the meeting itself in Skype, Google Voice, or whatever works.

This technology exists, so it would be silly not to try and use it. At least that is how I see it.

This is great news for Bonnie in Taos, if she can tune in, and Jamie, who lives in Las Vegas, plus a few in Albuquerque who find it hard to come to the meetings in person, but might be able to participate remotely.

The next meeting is on Thursday, November 18th at 6PM. The location for Deli-Berry is 2520 Juan Tabo Blvd NE. On Juan Tabo, just north of Menaul Blvd NE, on the right hand side. You will see the Deli-Berry sign, and it is located in between a Sprint store and FedEx Office.

Most likely, I will try to braodcast the meeting in Skype, so to participate you will need a free account, and possibly a headset and/or a webcam. Once you have a Skype account, send me an Email with your Skype ID and I will send you my Skype ID in reply.

Here is some information about headsets and webcams, assuming you do not already have this equipment already installed on your computer.

If you have a newer MacBook, or pretty much any really new laptop, you may already have a webcam built in. In most cases, Skype will find it and use it automatically. But since I cannot possibly support all of the possible variables, you are going to have to sort that out. You may also find that an external webcam gives you better quality. The MacBooks are pretty good, but all others you will have to try them to find out.

Here is what I know...

For a headset only, you can do much worse than a Logitech ClearChat Comfort USB Headset (Black). Sample prices:

$31.99 on Amazon.com
$33.44 at Sears
$37.88 at Walmart
$39.99 at Target

There are other brands, like Plantronics for example, that are also dandy, but I am familiar with Logitech, so that is why I choose mention them. go to a store and compare for yourself. Try them on, and see what fits better for you.

USB connection gives you easy setup and great sound quality. Mostly, you just plug it in and it works. You may need to tell some software which microphone or headset to use, but it is pretty straighforward.

WHY NOT GO ALL THE WAY WITH A WEBCAM?

Or for practically the same money, you can go for the full boat with a web camera.

I am a big advocate for all vasculitis patients to get some kind of camera to record their stories as a way of spreading awareness. Just tell the camera the cleaned up version of what you tell your friends and family. It will go a long way towards making the public more willing to contribute time and money for this worthy cause.

But which camera?

I did a lot of research, and many cameras will work well. I personally like the Logitech cameras, because their is a nice A great compromise between quality and affordable price, plus I like how easy their software was to install.

Prices vary depending on how good you want the camera to be.

For most people I recommend the Logitech C310 HD Webcam. Again, good picture, good sound, and a good price. There are more expensive models, but this one will do the job quite nicely with very few compromises. Sample prices:

$39.99 at BestBuy
$41.99 at Amazon.com
$49.99 at Office Depot
$52.98 at Staples

Just as with the headsets, there are other brands that are also good, like Microsoft webcams are pretty good. I just choose to promote Logitech because I am familiar with them, they are easy to set up, and I like the software.

If you want to mimic my research, to see the quality differences, try starting with the webcam reviews at http://cowboyfrank.net/webcams/index.htm

He puts a number of different cameras through their paces. His most recent reviews are dated September 26, 2010, so they are not too old.

After doing the research, I like Logitech best. I chose that to give webcams to my family so we could all be on the same software as well. The Logitech Vid software is pretty nice and makes connecting a snap.

The webcam will work with any application that calls the camera and/or the microphone.

Google Voice/Video Chat
Skype
Logitech Vid software (Free to download and can be used with any webcam.)
Microsoft Live
Yahoo Messenger
etc, etc, etc, yadda yadda yadda

They all pretty much will work with most any USB webcam.

These better Logitech microphones, like on the C310, are noise cancelling, so you can use them to talk to people hands free instead of using a headset. You just turn down the volume enough to stop the feedback, then you can still hear the other party easily, and they can hear you too.

You can turn the camera part on and off as you choose. You get to turn that on and off in the software. Logitech software even has a feature to allow you to put a picture of your chooseing in place of a live camera feed. Handy for those days when you just don't want to be on camera, but still want to talk with people. Or when you want to turn the camera off for a few minutes to do something off camera, but still hear the other persons voice.

These are great tools for keeping people in touch, and at these prices, most people can afford them. In some ways, since the long distance over the Internet is free, you almost cannot afford not to take advantage of this technology to stay in touch with distant friends and relatives.

I am not trying to tell you what to do, but I will encourage you to share what you know.

Joseph Carpenter
Albuquerque Chapter Leader
Vasculitis Foundation in New Mexico

2010 Vasculitis Foundation Symposium

2010-10-12T17:06:00.000-06:00

Local women create a 'dream room' for ailing 11-year-old

2010-09-25T09:50:00.002-06:00

Local women create a 'dream room' for ailing 11-year-old

Keeping a positive outlook is a huge variable when managing a chronic illness successfully.

This "dream room" concept is a tremendous idea for boosting the morale of any patient, but young patients especially!

I will share this idea with other groups. Thanks to Jim Bornac for finding and sharing this news!

: Joseph Carpenter

On Fri, Sep 24, 2010 at 4:42 PM, wrote:

Local women create a 'dream room' for ailing 11-year-old

Cote said this year's room is being designed for Sarah Valade, an 11-year-old girl with Central Nervous System Vasculitis (CNSV), an inflammation of the the ...

http://www.timminstimes.com/ArticleDisplay.aspx?e=2772512

Attending Seminar - Advocating for Cancer Patients

2010-09-24T03:00:00.000-06:00

I will be going back to school tomorrow as I attend a day long legal seminar on Advocating for Cancer Patients.

Why does this matter?

I figure the same laws that protect cancer patients when they get their treatments, will also apply to cases where vasculitis patients are denied insurance payments for reasons like, "This medication is an investigational or experimental treatment," or "This therapy is not a standard of care." Both reasons can be invalid for denying patient care if the prescribing physician has followed the accepted practices for a vasculitis specialist. Who decides what those standards should be? Is it the insurance companies? No. In the case of orphan diseases, like vasculitis, it is more often the doctors who specialize in treating the condition that collectively determine the appropriate standard of care.

Now tomorrow, I will look to learn how to put some teeth behind that statement. Something they might have to sit up and pay attention to.

As I prepare to learn how to better advocate for my daughter's medical care, I may also pick up a few skills along the way. If you wish to know more, keep an eye on this blog, or consider coming to a monthly meeting. If I know you are coming, I can prepare a summary presentation on this topic including handouts. RSVP anyone?

Here is the low down on what is going to go down...

Advocating for Cancer Patients
UNM Cancer Center

Keynote Speaker: Melanie Royce, MD
Topic: The UNM Cancer Center: What's Happening in Cancer Research and Trials and their Impact on New Mexico Breast and other Cancer Patients.

The CLE portion is entitled:
Advocating for Cancer Patients
Presenter: Julie Neerken, Rodey Dickason Sloan Akin & Robb
Melinda Silver, Former Counsel to NM Superintendant of Insurance
Rita Seigel, Seigel Law Firm
Jane Wishner, Southwest Women's Law Center

This program combines the resources of the ABA Health Law Section/Commission on Women in the Profession Breast Cancer Advocacy Program with local resources to train attorneys to represent patients with cancer and other life threatening diseases. This CLE will include information on federal, state statutory and civil law remedies for patients denied treatment and /or insurance coverage, employment, and end of life legal counseling, including wills and guardianship. The CLE program will be followed by a tour of the UNM Cancer Center, New Mexico’s foremost cancer treatment facility.

The NMVasculitis blog got a facelift

2010-09-18T07:00:00.000-06:00

If you have not been in a while, go check out the new design:

http://nmvasculitis.blogspot.com

Whatcha think?

   Fabulous Darling?
   or
   Fuggedaboutit?

I need your stories, so I can make money for vasculitis research

2010-09-09T13:46:00.000-06:00

If you follow the news for the Central NM Chapter of the Vasculitis Foundation, then you may recall I mentioned back in August that we have a unique fundraising opportunity coming up.

http://nmvasculitis.blogspot.com/2010/08/haley-is-feeling-better-meeting-tonight.html

"AWARENESS AND FUNDRAISING EVENT COMING UP NEXT MONTH

=====================================================

In other news, on September 21st, our chapter will be represented at the kickoff picnic for a federal fundraising effort. The Combined Federal Campaign (CFC) was started in 1961 by President John F. Kennedy and is the only authorized solicitation of employees in the federal workplace for charitable organizations."

With very little commitment and time, I, and one or two of you who may volunteer to go with me, will attend the Kick Off for the 2010 Combined Federal Campaign (CFC). This will give us the chance to personally represent the face of vasculitis to hundreds, or potentially thousands of federal employees who come to the kick off to decide how they are going to allocate their charitable donations. It is a sure winner, but only if we convince them that vasculitis is a cause worthy of their support.

You can help me help you by sharing your words with me. Simply write me a letter detailing your personal vasculitis story. The same story you must have told a thousand times. Tell me how you first knew you were sick, how you were diagnosed, and include some highlights, both good and bad, about that experience.

If you feel really generous, speak to the donors in your own voice and tell them why you think they should support research into vasculitis. If you optionally choose to share a photo, then I can add that to our display to show them there are real people affected by these terrible conditions.

If you know a friend or family member who has vasculitis, you can tell your version of their story. That will be good to show how vasculitis changes more lives than people realize.

I will read your stories, and without giving away your identity at all, I can use your stories to make sure we have plenty to say about vasculitis patients in New Mexico.

Even a few paragraphs will be very helpful. Do not hesitate, share your story today!

Some of you have told me your stories at a chapter meeting, but I need it in writing so I can get in my head good. That way the stories will be ready when I am standing there asking people to support vasculitis research. I want them to contribute, so that you can someday enjoy improved treatments, and hopefully also a cure.

Please send your stories to Joseph Carpenter by Email, Fax or Postal Mail. By jet plane or slow moving mule train. I will be doing more of these events, so if you don't get to it now, please get to it eventually. I will speak as the voice for those of you who cannot speak for themselves.

--
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
New Mexico Chapter Leader

Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org

Vasculitis Research Money - Where Does It Come From?

2010-09-09T02:19:00.002-06:00

Vasculitis Research Money - Where Does It Come From?

We learned at the 2010 Vasculitis Symposium that the Vasculitis Foundation (VF) is the number one private funder of clinical research concerning vasculitis. The VF has collected and spent approximately one million dollars on research for vasculitis. That is a step in the right direction. But like any lucky coin, there are two sides. Before you count your laurels folks, lets take time to look at the flip side.

For example, where is the government funding going? Take a look for yourself:

Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)

http://report.nih.gov/rcdc/categories/default.aspx

"This table displays the annual support level for various research, condition, and disease categories based on grants, contracts, and other funding mechanisms used across the National Institutes of Health (NIH).

At the request of Congress, the NIH embarked on a process to provide better consistency and transparency in the reporting of its funded research. This new process, implemented in 2008 through the Research, Condition, and Disease Categorization (RCDC) system, uses sophisticated text data mining (categorizing and clustering using words and multiword phrases) in conjunction with NIH-wide definitions used to match projects to categories. The definitions are a list of terms and concepts selected by NIH scientific experts to define a research category. The research category levels represent the NIH’s best estimates based on the category definitions."

Look closely. You will not see "Vasculitis" listed on that table.

Crohns Disease gets 58 million. If you have gastrointestinal symptoms, maybe they will learn something that will help you down the road.

Arthritis gets 259 million dollars, and many vasculitis treatments are the so called "red-headed step children" of treatments that were discovered arthritis research. So perhaps that will yield some results that, in a decade or two, maybe, will trickle down as new treatments for vasculitis patients.

Tourette Syndrome is almost as rare as vasculitis, and they are expected to get 7 million research dollars from the NIH in 2011.

Tourette Syndrome is a great example for comparison. I do not begrudge Tourette sufferers this boon. Instead I ask why are they getting seven million dollars from the federal government? What does Tourette Syndrome have that Vasculitis does not have?

I will give you my answer. Tourette Syndrome has VISABILITY. How may funny actors have portrayed a Tourette Syndrome patient on television, just because it was easy to show the condition. It has its own built in visual aid. You do not have to wonder if someone has Tourette Syndrome, you can tell when they start yelling at you uncontrollably with random expressions.

The number of Tourette Syndrome patients in the United States is known:

"It is estimated that 200,000 Americans have the most severe form of TS, and as many as one in 100 exhibit milder and less complex symptoms such as chronic motor or vocal tics or transient tics of childhood." (NIH: http://www.ninds.nih.gov/disorders/tourette/detail_tourette.htm)

The best source of information about Vasculitis statistics is the Vasculitis Foundation, and they can only say that vasculitis is rare:

"All of the vasculitides are classified as rare diseases. A rare disease (also called an orphan disease) is a disease or condition affecting fewer than 200,000 persons in the United States. An estimated 25 million people in the United States have a rare disease. Statistics are not available for many of the diseases." (http://www.vasculitisfoundation.org/node/50)

It is rare, and people are not standing up to be counted. So, there are no numbers to report. When a vasculitis researcher gets an idea for potentially significant vasculitis research, they go to the VF Research Program for a grant, because the NIH does not even have vasculitis on its radar. And yet, the Vasculitis Foundation does:

“For the past 15years, patients living with vasculitis, their families, and their friends have been walking, running, hiking, climbing, golfing, scrapbooking, fishing, writing books, and organizing dinner events and countless other activities to raise more than $1 million for vasculitis research. ...making it the world’s largest private funder of research on vasculitis.” (Vasculitis Foundation Research Funding Report, 2010.)

To paint this with some color, at the Vasculitis Foundation the mission includes research so it is in full color painted broadly across the front door. At other funding centers, you can imagine vasculitis is on a much smaller hand-written list kept somewhere in a side drawer. Out of sight, out of mind. No money means no research. More money means more research, and more research means more advanced treatments and someday, a cure.

So, what can YOU do about this? How can you make your voice be heard? When are YOU going to stand up and be counted?

Here is what you can do...

1) Join the Vasculitis Foundation.

When you sit at home, not being counted, you are not helping make your condition better. Take all the meds you want, eat right, practice tai chi, but all of that will only apply to you.

Do you think the Vasculitis Foundation membership costs too much? Talk to them about your situation. You may qualify for a free membership. Even if you do not officially “join” you should let the Vasculitis Foundation know who you are so you can be counted when the research money gets passed out.

The non-personally identifiable information (a.k.a. “The head count”) from active memberships to the Vasculitis Foundation can and are considered when these big money types at the NIH start counting heads to decide which research projects will get part of the billions of public funding available for research each year. When the VCRC researchers are looking for additional grants in aid, they can cite successful Vascultis Foundation funded studies to help justify their larger studies. By supporting the Vasculitis Foundation, you are actually supporting those future big studies.

Will you be counted as one of 100,000, or will you be one of 1,000,000? Or will you remain anonymous? Which group will be more likely to be counted worthy of receiving research money? Keep in mind the “Anonymous” column gets nothing at all.

2) Do not splinter.

You are not just a vasculitis patient, you are also associated to one of fifteen other specific diagnoses that are counted by the Vasculitis Foundation. Are you forgoing participation in the Vasculitis Foundation in favor of going it alone, or perhaps joining a sub-group for your specific diagnosis? It makes good sense to ALSO join those other organizations. They can provided specific information and support for your list of symptoms. But do not forget the Vasculitis Foundation is the number one private funder of clinical research. By splintering off, you would also be watering down the numbers needed to justify private and public funding of more clinical research.

3) Get involved and stay involved.

Start your own blog. Tell your stories. Go to a chapter meeting. Volunteer to man the booth at health fairs and state fairs, and whatever your chapter decides to do. Be a part of making that happen!
Share information every day about your condition, and also about the Vasculitis Foundation. Yes, go forth, make some noise, tell everyone you know about your condition and get those who care about you to start making noise too.

By promoting awareness and education every day, can you help create the kind of public recognition that will lead to more research, and ultimately a cure.

When we say Sticking Together for a Cure, we mean it. Only by making our collective presence felt can we truly make a difference.

How to join.

Are you a Patient? Are you a Family/Friend? Are you a Medical Professional?

Either pay your dues (either $35/year or $500/lifetime), or make the case for financial hardship, but regardless of how you pay, Join today, or renew your membership with the Vasculitis Foundation:

http://www.vasculitisfoundation.org/vision/join/

Your membership dues go directly to non-profit efforts to promote awareness and education, and fundraising is spent on vasculitis research. Research that will end up providing real world benefits to you, and to others like you.

I started out with the title, "Vasculitis Research Money - Where Does It Come From?" Well, you can stop looking around, because it comes from you. Yes you, the patient. Yes you, the caregiver, the family member, the friend. When each of you makes enough noise, people will pay attention and they will contribute to funding vasculitis research. Either one dollar at a time, or one million, it all adds up.

Antibacterial Products: Can You Be Too Clean?

2010-09-08T21:11:00.001-06:00

Here is another article that rang my bell with the flu season coming up.

CVSCaremark Health Resources

"Antibacterial Products: Can You Be Too Clean?

by Elissa Sonnenberg, MSEd

In a world full of runny noses and hacking coughs, products with labels like "antibacterial" and "antimicrobial" regularly dispense hopes of germ and illness-free lives to their users. But, as the variety of germ-fighting products continues to rise, medical experts continue to disagree over their benefits and potential long-term effects."

Click this line to see the full article. (If you are reading this from the mailing list, you will need to go to a browser and read it in the blog. This link is HUGE.

Here are my own two cents on this topic...

My own experience with the, "Can you be too clean?" question came in the early days of Meaghan's diagnosis. I was trying to figure out the exact percentage of her immune compromise, then I was quickly made to understand that there is no way to know that for sure with any precision, and even if you could, it changes depending on other variables. Even without an autoimmune disorder, or taking prescription medications that suppress the immune system, every person is unique. Your "healthy baseline" is going to be different from every other human being.

So, the best advice we got was to follow the best advice we all get for staying healthy:

Wash your hands and use antibacterial rinses when you cannot.
Stay away from sick people
When you get sick, stay home and get better as quickly as possible
Lots of rest and fluids, especially water

Patients with autoimmune disorders can take that advice seriously, but come on... really... what is the answer to this how much should I protect myself from germs?

I pressed further and finally got some doctors to admit that in fact, if I protect Meaghan too much, then her natural immune system will suffer. Some researchers have suggested the immune system needs to be provoked in order to stay strong. Basically, if a person is too well protected from germs, and never has the chance to stimulate their immune system with enough crap to keep it worked out and healthy, then they are actually more likely to get sick. [The paraphrasing is my own.]

So what I took away from all that was that we should protect ourselves, but not too much... So it remains a balancing act.

Here is a good definition of "autoimmunity" you can use to describe it to others:

"The immune system can suddenly turn on itself and target its own organs, tissues and cells for destruction: what we call autoimmunity. Most of the more than 70 distinct types of autoimmune diseases are rare, but collectively they affect millions of individuals worldwide." (Editorial: Unraveling Autoimmunity, Nature Immunology 2, 755 (2001) or doi:10.1038/ni0901-755)

You can request this document from a number of document delivery services

British Library Document Supply Centre (http://www.bl.uk/services/listings.html)
CIST Canadian Institute for Scientific and Technical Information (http://cisti-icist.nrc-cnrc.gc.ca/eng/ibp/cisti/faq/document-delivery/cisti-infotrieve-collaboration.html)
Infotrieve (http://www4.infotrieve.com/default.asp)
Thomson ISI Document Delivery (http://www.thomsoninnovation.com/ti/workflow/docdelivery/)

You can also request this document from your local library through inter library loan services.

New Therapy For Vasculitis Expected To Help Patients Avoid Infertility And Cancer

2010-09-08T19:29:00.000-06:00

Hello Folks,

This is not exactly new news, but I found this article to be more easily understood than most in terms of answering the question, What is the difference between Cyclophosphamide and Rituximab?

Here you go.

New Therapy For Vasculitis Expected To Help Patients Avoid Infertility And Cancer

http://www.sciencedaily.com/releases/2009/10/091018141723.htm

ScienceDaily (2009-10-17) -- Researchers have identified that Rituxan, a drug previously approved for the treatment of non-Hodgkin's B cell lymphoma and rheumatoid arthritis, can treat severe ANCA-associated vasculitis as effectively as cyclophosphamide, the current standard therapy.

The Spoon Theory

2010-09-07T21:54:00.001-06:00

The woman who wrote this article has Lupus, another autoimmune disorder. The Spoon Theory has made the rounds, so some of you may have heard of it before.

The Spoon Theory written by Christine Miserandino

Right now, Meaghan is seeing the benefits of Rituximab and Azathioprine, (knock on wood) which seems to be allowing her to get her Prednisone down. She is at 10mg and holding for now, pending her next checkup and infusion.

The daily grind with vasculitis puts her, and other patients, in the category of people who can use the Spoon Theory to explain to others just how it is when living with vasculitis. Visual aids included if you have access to spoons!

Remember I cannot publish the entire article, because of copyright, but I encourage you to visit Christine Miserandino's page to read the entire article. You can even download a PDF for printing, or order a poster if it suits you.

Women's Chronic Pain More Intense

2010-08-31T03:59:00.000-06:00

Women's Chronic Pain More Intense
Men and Women Experience Chronic Pain Differently, but Experts Not Clear on Why

By Kathleen Doheny
WebMD Medical News
Reviewed by Laura J. Martin, MD
Aug. 13, 2010 (San Diego)

"Women's chronic pain is different than men's, and health care providers and therapists need to focus on that, says an expert who talked about those differences at the annual meeting of the American Psychological Association.

''Research has shown that women experience significant pain much more than men," says Jennifer F. Kelly, PhD, an Atlanta psychologist who often treats women who have pain.

Those aren't the only differences, she says. Women also have more recurrent pain compared to men and it's often more intense and long lasting.

''Women are also more likely to experience multiple pain conditions," she says."

To read the rest of this article, visit: https://www.webmdhealth.com/nl/nlv.aspx?id=gbclt_Ukhyk=&s=11294

WHO Declares End to 2009 H1N1 Influenza Pandemic

2010-08-20T10:13:00.000-06:00

The good news is the swine flu pandemic is officially over. (Read the press release below.)

As you all read this, remember that flu season is coming up. Alert your primary care physician to reserve your vaccine. Be sure to tell them you need the inactive vaccine (the shot, not the spray), and ask them to call you when the new flu vaccine becomes available. In case they are in short supply, immune supressed patients and their caregivers are high priority recipients for flu vaccine. Be polite, but you are eligible to receive the vaccine early.

I will say it one more time, just to make sure you all know. Immune suppressed patients and their caregivers, should NOT accept the live FluMist vaccine. That is the one they spray in your nose. The potential for catching an opportunistic infection in immuned suppressed prohibits the use of live vaccines.

For more information on this topic for autoimmune patients, see: http://www.flu.gov/individualfamily/healthconditions/arthritis/index.html

This information is neither intended nor implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with questions regarding a medical condition.

Here is the press release announcing the end of the so-called "Swine Flu."

News Release

FOR IMMEDIATE RELEASE
Tuesday, August 10, 2010

Contact: HHS Press Office
(202) 690-6343

WHO Declares End to 2009 H1N1 Influenza Pandemic

On August 10, 2010, the World Health Organization (WHO) International Health Regulations (IHR) Emergency Committee and the WHO Director-General, Dr. Margaret Chan, declared an end to the 2009 H1N1 influenza pandemic. This declaration was based on strong indications that influenza, worldwide, is transitioning toward seasonal patterns of transmission.

In the majority of countries, out-of-season 2009 H1N1 outbreaks are no longer being observed, and the intensity of 2009 H1N1 influenza virus transmission is lower than that reported during 2009 and early 2010. Members of the Emergency Committee further noted that the 2009 H1N1 viruses will likely continue to circulate for some years to come, taking on the behavior of a seasonal influenza virus.

This does not mean that the H1N1 virus has disappeared. Rather, it means current influenza outbreaks including those primarily caused by the 2009 H1N1 virus, show an intensity similar to that seen during seasonal epidemics. Pandemics, like the viruses that cause them, are unpredictable. WHO noted that continued vigilance is extremely important, and it is likely that the virus will continue to cause serious disease in younger age groups and pregnant women, at least in the immediate post-pandemic period.

The WHO Director-General ended the Public Health Emergency of International Concern in accordance with the International Health Regulations (2005). More information about the WHO declaration is available on the WHO website at http://www.who.int/mediacentre/news/statements/2010/h1n1_vpc_20100810/en/index.html.

Implications for United States

This is a formal WHO declaration regarding the end of the pandemic at the global level. The U.S. Public Health Emergency determination for 2009 H1N1 Influenza expired on June 23, 2010.

The only impact on the United States resulting from the WHO declaration will be a cessation in weekly reporting under the International Health Regulations (IHR) to the Pan American Health Organization and the World Health Organization. CDC has reported weekly to IHR since early in the pandemic.

There are no changes for the United States in terms of CDC’s recommendations for the upcoming influenza season and the United States is already proceeding with the understanding that the 2009 H1N1 virus is now part of seasonal influenza virus circulation.

As is customary, beginning in October, 2010, CDC will provide weekly reports of influenza surveillance information throughout the season with the publication of FluView available at www.cdc.gov/flu/weekly .

Protecting Yourself and Others from Influenza

CDC recommends a three-step approach to fighting flu: vaccination, everyday preventive actions and the correct use of antiviral drugs if your doctor recommends them. The first and most important step in protecting against the flu is to get a flu vaccine each season.

The U.S. 2010-2011 influenza vaccine will protect against an H3N2 virus, an influenza B virus, and the 2009 H1N1 influenza virus that caused the first global pandemic in more than 40 years and resulted in substantial illness, hospitalizations and deaths. In the United States, the CDC’s Advisory Committee on Immunization Practices recently recommended that everyone 6 months of age and older be vaccinated against influenza each season. Pregnant women, young children, and anyone with underlying health conditions like asthma, diabetes and neuromuscular diseases are at especially high risk for influenza-related complications and, therefore, should be vaccinated as soon as vaccine becomes available. Vaccine manufacturers are predicting an ample supply of influenza vaccine for the upcoming 2010-2011 U.S. influenza season.

Influenza (the flu) is a serious disease that can lead to hospitalization and sometimes even death. Anyone can get sick from the flu. For more information about influenza and how to protect yourself and your family, visit www.flu.gov.

###

Haley is feeling better, meeting tonight, event coming

2010-08-19T14:12:00.000-06:00

Update on Haley's condition
===========================
I spoke with Haley's father this morning, and she is now free of stroke-like symptoms. She is responsive, mobile and acting like herself.

The family asked me to thank you all for your well wishes. They will be joining our chapter, and perhaps you will meet them at a future event.

The doctors are still figuring out what brought on Haley's sudden onset of non-responsiveness. Her father tells me the doctors are suspecting high blood pressure for these particular symptoms, and looking into what caused it. The long version is there are still mysteries to be solved, and the bottom line is Haley's condition is improved.

Her father is planning to come to the chapter meeting at Deli-Berry tonight to pick up some literature and speak with Meaghan. If any of you can go, I am sure they would welcome any insights into the Wegeners experience.

MEETING TONIGHT
================
I am required elsewhere tonight, so the meeting will be facilitated by my daughter Meaghan, who most of have met at previous meetings.

Deli-Berry (www.deli-berry.com) is located at 2520 Juan Tabo Blvd NE. Just north of Menaul Blvd on the right side of the street. It is right in between to FedEx Office and a new Sprint store. They have some of the best frozen yogurt, and an assortment of healthy menu choices.

Deli-Berry may become a full time Vasculitis supporter!
========================================================
We are also in negotiations with Deli-Berry to set up a permanent awareness and fundraising presence in their restaurant, including a big poster, and a brochure rack on the counter. Those details are still in progress, but your support even now could help make a difference. If you go in there, tell them you read about Deli-Berry on the NMVasculitis website, and encourage the owners to become partners with the Vasculitis Foundation. Make Deli-Berry one of your favorite places to go, and soon you may also be able to support vasculitis research just by eating a sandwich, and a tasty frozen yogurt treat!

AWARENESS AND FUNDRAISING EVENT COMING UP NEXT MONTH
=====================================================
In other news, on September 21st, our chapter will be represented at the kickoff picnic for a federal fundraising effort. The Combined Federal Campaign (CFC) was started in 1961 by President John F. Kennedy and is the only authorized solicitation of employees in the federal workplace for charitable organizations.

The Central & Northern New Mexico CFC serves over 23,000 employees in Bernalillo, Catron, Cibola, Colfax, Curry, De Baca, Guadalupe, Harding, Los Alamos, McKinley, Mora, Quay, Rio Arriba, Roosevelt, Sandoval, San Miguel, Santa Fe, Sierra , Socorro , Taos, Torrance, Union and Valencia Counties.

If you are reading this, let me say thank you to the many generous donors and federal employees who give of their time to conduct the campaign!

The VF was accepted this year to participate in the national campaign for the first time (you have to apply and be approved). The VF got approved for the Kansas City CFC two years ago because our national office is in Kansas City, Missouri. We were then able to leverage that to the national level.

VF Executive Director Joyce Kullman, said this to me, and it will apply to any of you who may choose to volunteer, "I really really appreciate you representing the VF. At the kickoff meetings in KC, we connected with several patients/family members who did NOT know we existed. We handed out brochures with the small labels with our CFC # 64445. It was amazing talking to all the federal employees at the kickoff. The goal is to get the employees to designate the VF for support. It comes directly out of their paycheck so it is very easy."

The federal employees have a special program where they get to choose which charities to donate money to, and the Vasculitis Foundation has arranged to be a part of it nationwide. The New Mexico chapter will go to the picnic to present information and answer questions.

There is only room for about four of us at the table. I am going, and Meaghan will likely also go. I would like to invite one or two of you to join me.

Even if you cannot go to this kickoff, keep this event in mind. If you or someone you know is a federal employee, please encourage them to designate all or a portion of their CFC donation to the Vasculitis Foundation! The VF CFC# is 64445.

Ideally, you would just show up and be prepared to speak about your experience with vasculitis. We will not be "asking for money," as much as simply sharing information persuading people how they can help by contributing funds to vasculitis research. If you are interested, then please contact me so we can talk more about how you can help.

Remember, if you ever miss a meeting, you can arrange to meet me anytime you want to talk. Just call me.

That is it for now. I will touch base with Meaghan tonight, and see if any of you went. It would really warm my heart if you do manage to go.

--
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
New Mexico Chapter Leader

Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org

Healthy Sleep Tips | National Sleep Foundation - Information on Sleep Health and Safety

2010-08-17T22:02:00.000-06:00

Healthy Sleep Tips | National Sleep Foundation - Information on Sleep Health and Safety

"The following ten tips can help you achieve sleep and the benefits it provides. These tips are intended for "typical" adults, but not necessarily for children or persons experiencing medical problems.

Finally, if you have trouble falling asleep, maintaining sleep, awaken earlier than you wish, feel unrefreshed after sleep or suffer from excessive sleepiness during the day or when you wish to be alert, you should also consult your physician. Be sure to tell him/her if you have already tried these tips and for how long. To check for possible sleep problems, go to our checklist, "How's Your Sleep?""

Despite the "medical problems" disclaimer, sleep affects us in many ways, and is key to successful stress management. Both mentally and physically, both vasculitis patients and the caregivers who support them will do better if they know about ways to improve their sleep habits.

There are other articles that discuss how to maximize the potential of a power nap, to offset interrupted nighttime sleep patterns. Check it out.

Prayer request for Haley

2010-08-16T13:41:00.000-06:00

Call it prayer, or call it well wishes if you like. Call it sending positive energy, or depending on your faith, do whatever works for you.

I became aware of a new patient today. While we are always responsive to new patients and get them as much information as possible, most often I am contacted by adult patients who are already stable.

In this case, a ten year old girl is in the hospital with Wegeners Granulomatosis. She was diagnosed almost one month ago. She has kidney involvement, and she just had a stroke that affected her brain. Her aunt who called me, tells me the next 72 hours are key for her.

She is seeing the rheumatologist I might recommend to her, who is Courtney Johnson at UNM Children's Hospital.

Her current condition is critical. So, I am doing something I do not always do... I am asking you all to pray for Haley. I have not yet spoken to her parents, so am not at liberty to discuss her full name or details at this time.

However, I feel compelled to ask you to send out whatever positive thoughts you can to a young girl named Haley in hopes that she will pull through this stroke. If you wish to document your well wishes, comment or reply to this blog entry, and I will make sure your words get to the family.

Remember also that we have a chapter meeting on Thursday. It is possible Haley's aunt may be there. If you think you might have something to offer this family by way of support, please consider coming to that meeting. Let me know if you plan to go.

--
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
New Mexico Chapter Leader

Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org

1999 Overview of vasculitis diagnosis by AAP

2010-08-12T01:14:00.002-06:00

http://www.aafp.org/afp/991001ap/1421.html

This article is dated by a decade, so the treatment protocols will need to be updated. However, the text remains a good overview for the general medical professional who needs to make the diagnosis.

It is also, in my opinion, a useful overview for the patient who is still in the "mystery diagnosis" phase of the vasculitis experience. Feel free to print this and share it withe your primary care physician, or specialist. Especially if any of the symptoms mentioned here seem familiar to your condition.

As always, DO NOT DIAGNOSE YOURSELF. A proper diagnosis requires the experience and training of a medical doctor with the resources for proper medical tests to identify these medical symptoms.

Published with Blogger-droid v1.5.1

Rheumatology Article Aggregator

2010-08-04T17:54:00.003-06:00

An aggregator collects information from multiple sources and presents it in a unified way. This tool collects medical articles from different sources, and presents them under their category. E.g. Rheumatology, Pulmonology, etc.

This website was suggested to me by Suzanne DePaolis, a vasculitis patient who finds it useful for helping her keep up with all the medical news related to her condition.

Perhaps you will also find it useful. Here you go.

Rheumatology - MDLinx - Rheumatology Journals, Rheumatology Research Articles
http://www.mdlinx.com/rheumatology/

Awareness Idea: Gift cards

2010-08-03T14:58:00.001-06:00

What if every vasculitis advocate (patient, family, caregivers, friends) carried with them a booklet with half off coupons for some national chain, like Target, or Subway, or whomever the partnership can be set up with.

Then when they have the vasculitis talk with some new person, they have an immediate way to raise funds for vasculitis with them, right there on the spot.

Ideally, these coupons require someone to put their name and contact information so we can send them more information about vasculitis later as a follow up. But the coupon itself is immediately redeemable, so there is an immediately useful reason for them to buy the coupons.

The advocate submits the money as a donation to the VF, and collectively we might be able to raise an additional several thousand dollars.

I need to share this idea with Bob Sahs, the new Vasculitis Foundation Board President.

I will get back to you guys if this pans out.

--

Joseph Carpenter

Parent, daughter with CSS (DX March '08)

New Mexico Chapter Leader

Hello from Long Beach!

2010-07-29T22:46:00.000-06:00

At least two of us from New Mexico are here in Long Beach California to attend the 2010 All-Star Vasculitis Patient Symposium.

They say a picture is worth a thousand words, so I recorded a short intro video. If that works out, I may post more videos.

We will bring back some new information with us. You can expect to see that at future monthly meetings of the NM Chapter of the Vasculitis Foundation.

More later,

Joseph Carpenter

New Caregivers Online Group Forming

2010-07-13T21:18:00.003-06:00

This new group will initially be Email based, with some tentative plans for a secure forum archive later. This is in the works, and will be available soon. Tell your spouses, boyfriends, girlfriends, adult children, and whomever has been helping you keep track of your medications... Their voice will be heard.

You have seen the online groups for patients, like Vasculitis Survivors, and CSSISG, and Saavy, which are also visited by caregivers. No reason to stop participating in those places. But some issues are specific to caregivers and caregivers are supposed to be strong and not unload on the patients, right? Well, at least there are some thoughts and feeling we deal with they are better of not knowing.

We caregivers have our own special needs that require care and feeding, or chicken soup for the soul, or sometimes just a compassionate ear attached to someone who understands.

Soon, Autoimmune Vasculitis Caregivers will have a place to call their own. A place to laugh, cry, and lift each other up... virtually... and if kind words mean anything, literally too.

When it is up and running, caregivers can look forward to more posts like this one:

Caregiver depression: Prevention counts
Caregiver depression — Find out how to prevent and cope with caregiver depression.
http://www.mayoclinic.com/health/caregiver-depression/MY01264

For the latest health information, sign up for Housecall, Mayo Clinic's free weekly e-newsletter.
Sign up for Housecall

Stay tuned. NMVasculitis.org will announce it when it arrives.

: Joseph

Update: The group I just mentioned has been created. Caregivers can find it here:

Autoimmune Vasculitis Caregivers
http://groups.google.com/group/vasculitis-caregivers

Second Update:

The powers that be are discussing the specifics of how to set up this forum. It is live and will go online for general use, but not yet. When all the questions have been answered, I will post an update.

Public Transport options in Long Beach CA

2010-07-12T21:59:00.000-06:00

I realize not everyone is going to be able to attend the symposium, but I will be sharing links to this with other people, so bear with me here.

If you are going to Long Beach CA at the end of the month, you would want to know how to get around. Here are some public transport options to get you all around the town:

Getting Around

Long Beach Transit
Long Beach Transit operates a Transit Information Center at 130 E. 1st Street, Southeast corner of 1st Street & Pine Avenue in the Long Beach Transit Mall.

http://www.lbtransit.com/services/passport.aspx

Telephone Information
Your friendly Transit Advisors are only a phone call away. Call Monday - Friday, 7AM to 6PM, and Saturday, 8AM to 3PM. We are close on holidays. Telephone information offers you:

Transit trip planning
Customer relations
Long Beach Transit Main Office
The administration office is located at 1963 E. Anaheim Street in central Long Beach. Telephone number: (562) 591-8753. Office hours are 8 a.m. to 5 p.m. Monday through Friday.

Operator Assistance
562-591-2301
Monday-Friday
7 a.m. to 6 p.m.
Saturday-Sunday
9 a.m. to 6 p.m.
Closed on Sundays & Holidays

Dial-A-Lift
Long Beach Dial-A-Lift is a curb-to-curb, shared ride transit service exclusively for the mobility impaired residing in and travelling throughout the cities of Long Beach, Lakewood and Signal Hill.

Who is Eligible for Dial-A-Lift Membership?
Residents of Long Beach, Lakewood or Signal Hill, who are at least 18 years of age, permanently mobility impaired and unable to board or access the Long Beach Transit fixed route bus system are eligible to apply for Dial-A-Lift membership. Persons must be able to wait at a curb up to 30 minutes. Gurney or door-to-door services are not provided by Dial-A-Lift.

More information:
http://www.lbtransit.com/Services/Dial-A-Lift.aspx

Call 562-591-8753 for your Dial-A-Lift Application

Reminder: NMVasculitis Chapter Meeting on July 15th at 6PM

2010-07-06T13:30:00.000-06:00

We will once again go to The Range Cafe:

The Range Café
2200 Menaul NE, Albuquerque, NM
(505) 888-1660

For more information about this location, see the Meeting page of the chapter website:

http://www.nmvasculitis.org/Home/support/meetings

This will be our final meeting before Meaghan and I travel to Long Beach, CA at the end of the month to attend the 2010 All Star Vasculitis Patient and Physician Symposium. Huge amounts of knowledge are available at this event from physicians, patients, and caregivers. If you really want to get a handle on your condition, this is one of the best ways to make that happen.

I extend a special invitation to any one who also plans to attend this conference. We could all meet for lunch, or at least we should be able to recognize each other while we are there. I will be the very tall guy handing out NM Chapter brochures and taking lots of notes! :o)

Or, you can come to our monthly meetings and propose a list of questions. I will write them down and try to get you some answers. If you cannot come to a meeting, send your questions to me via Email or post them to the group via our Google Groups list. Putting your questions out there is the first thing you can do to seek an answer.

Hope to see you at the next meeting!

Joseph Carpenter

NM Chapter Leader and chief dishwasher.

Still time to make plans to attend 2010 Vasculitis Patient Symposium

2010-06-29T15:59:00.000-06:00

http://www.vasculitisfoundation.org/2010vasculitis-symposium

First Time in Western USA, Leading Vasculitis Experts and Patients to Assemble for Vasculitis Foundation Symposium

All Star Vasculitis Symposium, in Long Beach, California

July 30 - August 1, 2010

Register Today!

Excellent Opportunity to Learn About the Latest Research Findings and Treatment Recommendations for Over 15 Forms of Vasculitis

I attended vasculitis symposiums in Cleveland and Baltimore. I found them both to be very organized, educational, and informative. Seeing so many volunteers and doctors give so much of their time, made it very gratifying for me. I understood that a lot of people care and I am not alone in my vasculitis journey. -- Mercy LaVilla, diagnosed with PAN in 1999, remission in 2005

Wealth of Knowledge in One Place

The All Star Vasculitis Symposium will be held July 30 - August 1, 2010 at the beautiful Westin Long Beach Hotel in Long Beach, California. This is the first Vasculitis Foundation symposium held in the western USA.

Five Reasons to Attend

1. Benefit from the knowledge and experiences of attendees at the world's largest meeting of vasculitis patients, family members and medical experts

2. Expand your disease knowledge by learning about treatment advances, research, quality-of-life issues, and integrative medicine

3. Connect with other vasculitis patients and families for fun and fellowship

4. More than 35 sessions covering all 15 forms of vasculitis, presented by world-renowned experts

5. Network opportunities bring hope, encouragement, and empowerment

Still Not Convinced?
See the list below of presentations and speakers scheduled to date.

General Sessions

Vasculitis 101 - Overview of Vasculitis and the Individual Diseases
Introduction: Vasculitis, a family of diseases, how do they relate to each other? Peter A. Merkel, MD, MPH, Director, Vasculitis Center, Boston University School of Medicine

Churg Strauss Syndrome, Microscopic Polyangiitis, Wegener's granulomatosis Luis Felipe Flores-Suárez, MD, Head, Primary Systemic Vasculitides Clinic
Instituto Nacional de Enfermedades Respiratorias

Giant cell (Temporal) Arteritis, Polymyalgia Rheumatica, Takayasu's Arteritis, Central nervous System Vasculitis
Cornelia Weyand, MD, PhD, Immunology and Rheumatology, Stanford University

Cryoglobulinemia, Henoch-Schönlein purpura, Polyarteritis nodosa, Secondary VasculitidesPhilip Seo, MD, Co-Director, The Johns Hopkins Vasculitis Center

Ask the Experts Q&A Panel
Drs. Merkel, Flores-Suárez, Weyand and Seo
Vasculitis and Our Pediatric Patients and Their Parents

Join parents and young patients as our pediatric vasculitis experts discuss the management and most current treatment options for younger patients. Attendees will be able to ask questions, meet other parents/patients, share experiences, concerns, and what works for them.
Andreas Reiff, MD, Head, Division of Rheumatology, Childrens Hospital Los Angeles
David Balfe, MD, Medical Director, Pulmonary Stepdown Unit, Cedars-Sinai Medical Center

New and Emerging Therapies in Vasculitis
Welcome and Introductions
Peter A. Merkel, MD, MPH, Director, Vasculitis Center, Boston University School of Medicine

Understanding Immunology for the Patient with Vasculitis
Paul A. Monach, MD, PhD, Vasculitis Center, Boston University School of Medicine

What's Happening Now in Vasculitis Clinical Research: The Vasculitis Research Clinical Research Consortium (VCRC), the European Vasculitis Study Group (EUVAS) and other Vasculitis Research Programs Peter A. Merkel, MD, MPH, Director, Vasculitis Center, Boston University School of Medicine
Recently Completed Clinical Trials in Vasculitis and Implications for all Patients:

Rituximab (RAVE Trial results)
Ulrich Specks, MD, Division of Pulmonary and Critical Care, Mayo Clinic

Other Therapeutic Advances Carol A. Langford, MD, MHS, Director, Cleveland Clinic Center for Vasculitis Care and Research
Ask the Experts Q & A Panel
Drs. Langford, Merkel, Monach and Specks

Small Vessel Vasculitis
For attendees interested in Wegener's granulomatosis, microscopic polyangiitis, Churg Strauss syndrome, relapsing polychondritis, Henoch-Schönlein purpura, polyarteritis nodosa, cryoglobulinemia, vasculitis associated with connective tissue diseases), central nervous vasculitis, Behcet's disease, and other small vessel diseases.

Standard of Care Therapy for Small Vessel Vasculitides

Paul A. Monach, MD, PhD, Vasculitis Center, Boston University School of Medicine

Dealing with the Chronic Medical Effects of Small Vessel Vasculitides Philip Seo, MD, Co-Director, The Johns Hopkins Vasculitis Center
Ask the Experts Q & A Panel Drs. Seo and Monach
Large Vessel Vasculitis For attendees interested in Takayasu's arteritis and Giant cell arteritis (Temporal arteritis)

Standard of Care Therapy for Large Vessel Vasculitides Cornelia Weyand, MD, PhD, Immunology and Rheumatology, Stanford University
Dealing with the Chronic Medical Effects of Large Vessel Vasculitides
Curry Koening, MD, MS, Division of Rheumatology, University of Utah

Ask the Experts Q & A Panel Drs. Weyand and Koening

Breakout Sessions Ear/Nose/Throat in Vasculitis
Robert S. Lebovics, MD, F.A.C.S., Otolaryngology/Head & Neck Surgery, New York City, New York
Matthew L. Finerman, MD, Otosurgical Group, Medical Clinic, UCLA

Family, Friends and Caregivers Support Meeting (please, no patients) Donna Benton and Claudia Ellano-Ota, LCSW
Orange Caregiver Resource Center, California, St. Jude Brain Injury Network

Gastrointestinal Issues in Vasculitis Kenneth Warrington, MD, Division of Rheumatology, Mayo Clinic, Rochester, Minnesota
Kidneys in Vasculitis Patrick Nachman, MD, University of North Carolina Kidney Center, Chapel Hill, North Carolina
Ramnath Dukkipati, MD, Medical Director, Interventional Nephrology, Harbor-UCLA
Pharmacology Christine Vu, Pharm.D, Department of Pharmacy Services, Cedars-Sinai Medical Center
Assembling Your Medical Records/Seeking a Second Opinion Megan E. Clowse, MD, MPH, Rheumatology and Immunology, Duke University
Carol Langford, MD, MHS, Director, Cleveland Clinic Center for Vasculitis Care and Research Lung Issues for the Vasculitis Patient (asthma, chronic breathlessness, respiratory infections) Ulrich Specks, MD, Division of Pulmonary and Critical Care, Mayo Clinic
Vasculitis Spanish Language Session Luis Felipe Flores-Suárez, MD, Head, Primary Systemic Vasculitides Clinic, Instituto Nacional de Enfermedades Respiratorias
Building a Team: Patient and Physician Communication Sharon Chung, MD, Division of Rheumatology, University of California - San Francisco
Grace Eisen, RN, Lake City, Michigan, VF Board of Directors Eyes in Vasculitis (inflammatory eye disease, low vision, cataracts, glaucoma, eye health)James A. Garrity, MD, Department of Ophthalmology, Mayo Clinic
Lung Issues for the Vasculitis Patient (asthma, chronic breathlessness, respiratory infections) Ulrich Specks, MD, Division of Pulmonary and Critical Care, Mayo Clinic
Stress Management: Coping Skills and Strategies Lisa Graziano, MA, Executive Director, Prader-Willi California Foundation
Understanding Lab Tests for Patients with Vasculitis Patrick Nachman, MD, UNC Kidney Center, University of North Carolina - Chapel Hill
Reproductive Health Issues for Women and Men with Vasculitis: Fertility and Pregnancy Megan Clowse, MD, MPH, Rheumatology and Immunology, Duke University
Getting Involved in Vasculitis Patient Advocacy Jane Dion, Founder and President, Churg Strauss Syndrome Association
Cassie Keane, President, Vasculitis Foundation Board of Directors
Cindy Webber, Co-Chair, Education and Awareness Council

Peripheral Neuropathy Associated with VasculitisAnnabel Wang, MD, Neurology, Neuromuscular Disorders, University of California - Irvine
Vasculitis Medication Review (dosing/toxicities)Kenneth Warrington, MD, Division of Rheumatology, Mayo Clinic Vasculitis: Possible mechanisms. Role of autoimmunityNabih I. Abdou, MD, PhD, FACP, Center for Rheumatic Disease and Allergy
Disability and Workplace Issues for Vasculitis PatientsTaMiko Crockett, Public Affairs Specialist, Tri Counties Area, Social Security Administration
Essie Landry, Public Affairs Specialist, Tri Counties Area, Social Security Administration

Group Discussions With Faculty
Behcet's Disease, Henoch-Schönlein purpura, Kawasaki Disease
Curry Koening, MD, MS, Division of Rheumatology, University of Utah
Philip Seo,MD, Co-Director, The Johns Hopkins Vasculitis Center

Churg Strauss syndrome

Carol Langford, MD, MHS, Director, Cleveland Clinic Center for Vasculitis Care and Research

Ulrich Specks, MD, Division of Pulmonary and Critical Care, Mayo Clinic

Giant cell arteritis (Temporal arteritis)/Takayasu's Arteritis Peter A. Merkel, MD, MPH, Director, Vasculitis Center, Boston University School of
Medicine
Cornelia Weyand, MD, Ph.D, Immunology and Rheumatology, Stanford University
Microscopic polyangiitis
Sharon Chung, MD, Division of Rheumatology, University of California - San Francisco
Megan E. Clowse, MD, MPH, Rheumatology and Immunology, Duke University
Patrick Nachman, MD, UNC Kidney Center, University of North Carolina - Chapel Hill
Pediatrics Andreas Reiff, MD, Head, Division of Rheumatology, Childrens Hospital Los Angeles
David Balfe, MD, Medical Director, Pulmonary Stepdown Unit, Cedars-Sinai Medical Center
Polyarteritis nodosa/Cryoglobulinemia Eric Hoy, Ph.D, MS, Department of Medical Laboratory Sciences, The University of Texas
Southwestern Medical Center
Ramnath Dukkipati, MD, Medical Director, Interventional Nephrology, Harbor-UCLA
Wegener's granulomatosis
Nabih I. Abdou, MD, PhD, FACP, Center for Rheumatic Disease and AllergyJames A. Garrity, MD, Department of Ophthalmology, Mayo Clinic
Robert S. Lebovics, MD, Otolaryngology/Head & Neck Surgery, St. Roosevelt Hospital
Paul A. Monach, MD, PhD, Vasculitis Center, Boston University School of Medicine

And That's Not All!
Keynote Address: Vasculitis - Where We've Been, Where We're Headed Gary S. Hoffman, MD, MS, Director of Senior Staff Matters, Professional Staff Affairs Office, Cleveland Clinic

Disease-Specific Round Table Discussion Sessions
Moderators: VF Education and Awareness Council

Young Adults Icebreaker (ages 16-25, patients only)
Moderator: Kim Golbuff, MBA
Motivational Presentation: Don't Stop Short of YOUR Miracle
Julie Garton-Good, DREI, C-CREC, Port Saint Lucie, Florida

Disease Group Dinners

To be announced

Have Some Fun!

All Star Recognition, Celebration Banquet and Hollywood Walk of Fame! Tonight we're putting on sequins, tiaras, glitter and glitz and celebrating! Join us on the VF red carpet for an evening of food, fun and entertainment. Participate in the costume contest and win a prize. Experience the paparazzi and adoring fans. Come as your favorite movie or TV star or TV doctor! (Participation is completely voluntary! Come to have fun.)
Long Beach and Southern California Attractions Over 100 area restaurants. Attractions include the Aquarium of the Pacific, the Queen Mary, Disneyland, Knotts Berry Farm, and Los Angeles. Plan some vacation fun while you are here.

Learn More and Register

Please go to http://www.vasculitisfoundation.org/2010vasculitis-symposium for detailed information and to register. Seating is limited, please register as soon as possible. Registration fee includes Saturday and Sunday continental breakfast and lunch, Friday night dessert reception, Saturday night banquet, and daily refreshment breaks.

NMVasculitis Meeting for June 2010 will be at The Range Cafe on Menaul

2010-06-05T15:23:00.000-06:00

Our May meeting at the Hilton Cantina was great, because I got to meet with Dennis Wiita. We shared some stories and some "patient secrets" and talked about the upcoming 2010 Vasculitis Patient Symposium, among other things. Dennis is a really great guy and takes his condition in stride. When we met, he had been enjoying a stretch of pretty good days, so we wish that to continue. It is always a pleasure to spend time with Dennis.

The Cantina was okay, but not the cozy corner I am really looking for. So those present decided together that in June we are moving the meeting to The Range Cafe, located on Menaul just about a half block East of University.

Also, I will bring plenty of brochures. I hope lots of you will come and stock up for the summer. Take them to your doctors, to your hospital appointments, and share them with your friends and family. Many times, people only take one copy. Feel free to take a dozen, or more if you think you can share them to spread the word. I have plenty right now, and one of my goals is to get rid of them so they can be out there, doing their work of spreading awareness. Will you please help me? I look forward to seeing as many of you as can come to the June Meeting.

(Those of you who are out of town, let me know you are willing to help and I will mail some brochures to you.)

The Range cafe is a long time favorite place of mine, and I have held successful meetings there for other non-profit groups. So, I know it will be good. If it works out for NMVasculitis, then I would like to settle down here for a while and focus on encouraging more people to attend the meetings. If you do not want dinner, then just come have a drink and maybe a slice if pie. The pies at the Range Cafe are fresh and very good.

As always, the event starts at 6PM and lasts at least one hour, but can go longer if we are having a good time.

Range Cafe - 2200 Menaul Blvd. NE
The Range Café
2200 Menaul NE, Albuquerque, NM
(505) 888-1660

Serving breakfast, lunch and dinner, seven days a week, The Range serves ordinary food, made extraordinarily well. New Mexico favorites such as blue corn enchiladas, burritos and award winning huevos rancheros are offered along side classic American favorites like Tom's Meatloaf and Chicken Fried Steak. Our in-house bakery serves up some of the best desserts in town in an eclectic, family atmosphere. See our menu section for our complete listing of The Range family favorites.

Menus

MAP

NMVasculitis Google Groups will be open to a wider public

2010-05-17T15:25:00.000-06:00

I seem to get more feedback about the NMVasculitis website from people in other parts of the country than I do from anyone living in New Mexico.

HOW ARE YOU GUYS?
I rarely hear from any of you about how you are doing, so I guess I could make more of an effort to reach out to you people. I would like to know. I would like to see you contacting each other more often for support as well. Maybe we should stop going to restaurants and start going to each others houses. I may pass the hosting chore on to you as a baton we can share. Do you think this would encourage more people to participate?

MAILING LIST CHANGES
In the meantime, what was intended to be a sort of "private corner" sits unused unless I send something out. I think one other person has posted besides myself.

So, I am going to make it easier for people to sign up in hopes that a wider audience will come into the circle and contribute their ideas and experiences for the benefit of all. The mailing list will still be moderated, and I will still approve registrations, but I am allowing more people to participate here.

Be aware that with the mailing list changes the online membership will grow, and it may not remain exclusively a New Mexico mailing list. I do not know how many might choose to sign up, but NM Patients will remain the primary focus, so any local articles about our doctors, our hospitals, and how our climate affects you and your vasculitis... are certainly welcome. Please share what you know.

MORE CONTENT PLEASE
I originally hoped the patient members would be more active, and help contribute content to this website by sharing articles they read in the papers, magazines, etc. and relating significant facts they learn from their doctors. It seems people are either shy, or selfish, with this information, and do not feel compelled to share with the group as I thought they might.

I will try to do better myself by reposting the best of what I see in other news groups to keep this venue more interesting.

Last, but by no means least... Please let us know how you are doing!

Joseph Carpenter
Parent, daughter with CSS (DX March '08)

Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org
Churg-Strauss Syndrome Association - http://www.cssassociation.org/

Mark Your Calendars for the 2010 All Star Vasculitis Patient Symposium - July 30-August 1, 2010
http://www.vasculitisfoundation.org/2010vasculitis-symposium

May Meeting of NMVasculitis at the Hilton Cantina on University

2010-05-17T14:52:00.001-06:00

Our next meeting will be held at 6PM this Thursday, May 20 at the Cantina Lounge in the Hilton Hotel. I believe they have some indoor and outdoor seating, which may work well with the summer months coming up. This venue is centrally located, and also close to the freeway so locals and out of towners alike should find it easy to get off at Menaul and get in there easily.

Cantina Lounge
Have a favorite beverage while enjoying a light snack under the blue skies of New Mexico. Lounge offers food specials and refreshing drinks in a tree-lined courtyard overlooking our pool. Local favorite.

La Cantina Menu

Location: Midtown/University
1901 University Blvd. N.E.

Albuquerque, NM 87102

MAP

Phone: (505) 884-2500
Toll Free: (800) 274-6835
Fax: (505) 880-1196

Days Open: Daily Monday - Sunday 2PM-11PM

Attire: Casual

Complimentary Wireless Internet
Website

This should be a welcome change as we had exhausted the menu at McAllisters after several months of staying in one place. I welcome you all to join us this coming Thursday!

Joseph Carpenter
Parent, daughter with CSS (DX March '08)

Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org
Churg-Strauss Syndrome Association - http://www.cssassociation.org/

Mark Your Calendars for the 2010 All Star Vasculitis Patient Symposium - July 30-August 1, 2010
http://www.vasculitisfoundation.org/2010vasculitis-symposium

Rituximab - Rheumatoid Arthritis Drug Lowers Flu Shot Effectiveness

2010-05-11T16:43:00.003-06:00

Rheumatoid Arthritis Drug Lowers Flu Shot Effectiveness - Drugs.com MedNews

Rheumatoid Arthritis Drug Lowers Flu Shot Effectiveness

MONDAY, Jan. 11 -- New research offers a caution to rheumatoid arthritis patients who take the drug rituximab (Rituxan): The flu vaccine is safe, but it's ineffective during the first six months following treatment with Rituxan.

The researchers also found that previous flu vaccination does help provide some protection against the flu, and the vaccine won't make the arthritis symptoms worse.

The study findings are published in the January issue of Arthritis & Rheumatism.

Rheumatoid arthritis, which is caused when the immune system attacks the body, affects about 4.6 million people around the world. Doctors recommend that these patients get vaccinated against influenza each year -- including the H1N1 swine flu this year -- because they have weakened immune systems.

The new study, by Dr. Sander van Assen and colleagues at the University Medical Center Groningen in the Netherlands, included rheumatoid arthritis patients who took rituximab or methotrexate, as well as a group of healthy people.

Those who took rituximab took longer to develop immunity to flu after being vaccinated, the researchers found.

"Individuals who have compromised immune systems, such as with rheumatoid arthritis, are at risk for complications from contracting the flu virus," van Assen said in a news release from the American College of Rheumatology. "We recommend yearly influenza vaccination for all rheumatoid arthritis patients and pre-emptive vaccination for flu should be considered by those patients who start rituximab treatment."

More information

The U.S. Centers for Disease Control and Prevention has more about the flu.

NMVasculitis April Meeting at McAllisters

2010-04-13T14:54:00.001-06:00

Looks like we will keep the monthly meeting at McAllisters in Uptown this month.

Thursday, April 14th at 6PM.

I will be there. I hope to see you there as well. Come by and I will treat you to some sweet tea.

We can also discuss what this chapter will be able to accomplish for awareness week.

Come one come all to the Jellicle Ball... or something like that.

Details to the location on the Meetings page of the website.

: Joseph

Cases of H1N1 Have Dwindled, Seasonal Flu Has Been a No-Show

2010-03-02T11:19:00.000-07:00

The Flu Season That Fizzled - WSJ.com
http://tinyurl.com/yhkeuwb

The Flu Season That Fizzled
Cases of H1N1 Have Dwindled, Seasonal Flu Has Been a No-Show and Doctors Wonder Why

By BETSY MCKAY
[flu]

This has been a flu season like few others.

Normally at this time of year, influenza is rampant in the U.S., prompting hundreds of thousands of people to stay home in the dead of winter with fever, aches and pains.

Now, after raging through college campuses and communities last summer and fall, cases of the new H1N1 swine flu virus have dwindled to a trickle, and run-of-the-mill seasonal flu has barely made an appearance. Not one state reported widespread flu illness to the Centers for Disease Control and Prevention for the week ended Feb. 20, the latest data available. The percentage of all doctors' visits by patients with influenza-like symptoms has dropped from a high of 7.8% in late October—the largest peak since the agency began surveillance in 1997—to 1.8% in late February, well below the norm for flu season."

To read more, read the full article at the Wall Street Journal website.

The Flu Season That Fizzled - WSJ.com
http://online.wsj.com/article/SB10001424052748703429304575095743102260012.html?mod=rss_Today%27s_Most_Popular#printMode

NMVasculitis February Chapter Meeting Tonight

2010-02-18T17:50:00.000-07:00

There is a meeting schedule for tonight at 6PM, at McAllisters Deli.

However, due to another commitment, neither Meaghan or I will be able to attend.

Consider this meeting cancelled if you like, or go anyway and look around to meet new people on your own.

Worst case, you can have some dessert and enjoy yourself. You deserve a treat, don't you think so?

Since I accidentally held an extra meeting in January, I suppose I am still up to date.

More later. Gotta run.

Joseph Carpenter
Parent, daughter with CSS (DX March '08)

Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.

Mark Your Calendars for Vasculitis Awareness Week - April 25 thru May 1, 2010 when we all come together for a single purpose -- to raise awareness.
https://www.vasculitisfoundation.org/teamvasculitis

NMVasculitis Chapter January Meeting , for real this time

2010-01-21T11:20:00.000-07:00

Here is the deal.

Last week, we went to McAllisters Deli in Uptown, and held a meeting. I have been swamped lately with work, and coaching, and so I guess I got ahead of myself, so count that an extra meeting.

Tonight is actually the third Thursday, and tonight January 21st is the date marked on the calendar. So, I will go again tonight. However, I will likely only stay about a half hour, drink some sweet tea, maybe have some pie. Then if you show up, we can have a meeting. If not, then I will go on home after 6:30PM. Be there or be square.

Fair enough?

I really do hope to see you there, so come if you can.

Need directions? Check this out...

Meetings (NMVasculitis.org)
http://www.nmvasculitis.org/Home/support/meetings

Joseph Carpenter
Parent, daughter with CSS (DX March '08)

Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org

Mark Your Calendars for Vasculitis Awareness Week - April 25 thru May 1, 2010
when we all come together for a single purpose -- to raise awareness.

Chapter Meeting tonight at McAllisters. See you at 6PM!

2010-01-14T14:32:00.000-07:00

Just a quick reminder that we have a chapter meeting tonight at 6PM. Location is McAllisters.

Hope to see you there!

Joseph Carpenter
joseph@nmvasculitis.org
Parent, daughter with CSS (DX March '08)

Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.

Mark Your Calendars for Vasculitis Awareness Week - April 25 thru May 1, 2010 when we all come together for a single purpose -- to raise awareness.
https://www.vasculitisfoundation.org/teamvasculitis

Vasculitis Clinical Research Consortium Update

2010-01-07T12:06:00.000-07:00

Hey everybody,

The VCRC is one of the main sources of hope for vasculitis patients. These are your white knights, out there in the laboratories, searching for ways to improve your condition, and ultimately a cure for vasculitis.

If you will take a few minutes to explore the opportunities, then if possible participate in one or more of the studies. Many are just questionaires you can fill in to give them more information. More data for a researcher gets them just that much closer to the cure. Read on... -- Joseph

Visit us at: www.RareDiseasesNetwork.org/vasculitis

Dear Joseph Carpenter,

Update from the VCRC
The Vasculitis Clini! cal Research Consortium (VCRC) is extremely pleased to report that our grant application for renewal of support for the Consortium was successfully refunded another five year period by the National Institutes of Health, specifically the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the Office of Rare Diseases Research (ORDR).
This is obviously a major milestone for our group and the result of incredibly hard and high-quality work by all of us. Combined with funding for other studies, we will continue to have the resources to advance and successfully complete our ambitious and exciting research agenda.

VCRC contact registry study, coming soon!
We are making plans to expand the use of the contact registry to allow registered patients to directly take part in research in vasculitis via the internet. We are excited to announce our first planned research project will be the VCRC Study of Reproductive Health in Vasculitis. This study, which will include both women and men, is expected to start next spring. We are also developing a VCRC Pregnancy Registry that should be ready later in 2010.

Living with vasculitis, Lindsay's story
"Exhaustion, pain, and overall sense of illness...these are all words that come to mind as a patient with Takayasu's Arteritis. I have always been an athlete, playing both field hockey and softball in college. With each year of college, I progressively became more fatigued and found it more difficult to keep up with my teammates at practice. Shortly after graduating, I was diagnosed with Takayasu's Arteritis in 2003. Only months later my doctors would discover that my left subclavian artery was completely blocked and I would need bypass surgery. Being 22 at the time, I didn't know what to expect, TA is a rare auto-immune disease that has very little history of studies or explanations to why. Dr. Merkel and the VCRC have given me a positive outlook on living with a chronic, rare disease. Their personal approach and tremendous support has been a driving force for my mother's annual 'Walk This Way' Takayasu's Arteritis Fundraiser. Having Boston Medical Center's CEO, Elaine Ullian, personally thank my family for our efforts has proven their dedication to their patients. The VCRC has opened new doors to their TA patients, proving through their new and advanced studies that their end goal is ultimately the patient."

Learn more about the VCRC: www.RareDiseasesNetwork.org/vcrc

Learn more about our current trials: www.RareDiseasesNetwork.org/vcrc/takeaction/findatrial.htm

We wish you all a healthy and happy New Year!

Official Announcement: 2010 International All Star Vasculitis Symposium

2010-01-06T03:05:00.001-07:00

Register Now to Attend the 2010 International

All Star Vasculitis Symposium

On behalf of the Vasculitis Foundation, we invite you to attend the 2010 International All Star Symposium to be held at the Westin Long Beach Hotel, Long Beach, California, on July 30 through August 1, 2010.

Don't miss this opportunity to invest in your future health and

well-being by expanding your knowledge and understanding

of vasculitis needed to address your health concerns.

The Symposium will bring together the "stars" of vasculitis -- our patients, family members, caregivers, and medical experts. All the vasculitides will be covered and we will concentrate on advances in medical treatments, research, quality of life issues, and integrative medicine.

"This Symposium will help us move forward by reviewing the latest findings in the field and examining future directions. It holds great promise to improve the lives of those living with vasculitis." - Joyce Kullman, Executive Director, Vasculitis Foundation.

Visit the VF website at http://www.vasculitisfoundation.org/2010vasculitis-symposium for a complete, detailed packet of information including: Schedule; Speakers' List; Long Beach Attractions; Hotel Information; Airports/Airlines and Ground Transportation; Childcare; Registration Form and Pre-Attendee Survey Form; Pick-A-Basket Drawing, etc.

Register today online or by downloading and printing the Registration Form or by calling the VF office at 800-277-9474.

We look forward to seeing you in Long Beach.

Joyce A. Kullman, Executive Director

Vasculitis Foundation

Neti Pot Instructions and Where to get a good one

2009-12-17T11:30:00.001-07:00

A "neti pot" is a tool for nasal sinus irrigation. This technique is well documented as a method for cleaning and moisturizing the the sinus passages to help alleviate sinus symptoms related to allergies, sinusitus, and other conditions that are affected by the buildup of mucus and irritants in the nose.

There are various methods of nasal irrigation, but Jalaneti is mild and peaceful. I always think it is better to let gravity do the work if possible. WIthout naming names, certain methods use a squeeze bottle that involved shooting salt water up the nose. Not only is this less comfortable, but also forcing liquid through the sinuses can actually push contaminants further up into the body instead of encouraging them to get out. That is my opinion anyway.

If you Google "Neti Pot" you will find an increasing number of designs available commercially. Some are better than others. One of the best, is also one of the oldest.

The Jalaneti neti pot has been available for many years from HealthandYoga.com, a company in India, where the practice of Jalaneti was developed. Their newest design is the very best I have ever seen.

What makes the HealthandYoga.com Jalaneti pot so superior to all others are several unique design features they have developed after much research. First, I will mention the stainless steel construction, which is not only tough, but also easy to keep clean.

I used to have a ceramic neti pot and guess what happened when I dropped it in the shower? That is right, it broke. I once tried a plastic neti pot and never felt that it was truly clean, so I stopped using it. Plus the reservoirs on these other designs was always too small to do any real good.

Another advantage of this Jala Neti design is the larger reservoir, so you can neti both sides of your nose with one pot. This is handy for me, since I like to Neti at the end of my shower and getting out to get more salt would be inconveneient.

Finally, and perhaps most important, is the design of the tip that fits in the nose. I have found many neti pots are designed with tips that are too large for some, too small for others. This Jala Neti design is a tapered cone that truly makes it a one size fits all solution.

Keep in mind that a neti pot is like a toothbrush, they should be one per customer.

Here is where you can get details, and order online:

Stainless Steel Neti Pot

"The Neti Pot is a tool to practise Neti (Jalaneti- Saline Nasal Irrigation).It is perfect tool to manage sinus related problems, common cold etc. This pot is scientifically designed after much research by jala neti experts and teachers across the world. Every pot is hand crafted and tested to create that exclusivity and user-friendly features, which no other neti pot in the market can offer.

The H&Y Neti Pot is made of pure stainless steel and it is lead-free and unbreakable. It is sufficiently large to hold enough water for your entire practice. It is light weight. It has an optimum size tapered conical tip at the spout end, which facilitates support on the nostril walls of varying sizes."
http://www.healthandyoga.com/marketplace/hnydescmp/2/detail.aspx

I will also include a link to a training video on YouTube, so you can see what it looks like. Trust me, once you get the hang of it, it goes quickly. After you see the benefits of daily nasal rinsing you will feel better, and never look back wishing you still had a dirty nose.

NMVasculitis 2009 Almost Annual Report and 2010 Things to Come

2009-12-04T01:25:00.001-07:00

(TIP: Those of you getting Email copies, try reading this online in the blog (http://nmvasculitis.blogspot.com/) if you want to see all the formatting and hyperlinks intact. The blog is also working again inside the website on this page: (http://www.nmvasculitis.org/Home/events/cnmvf-blog-1). Thanks to Google for fixing that code.)

Hello Friends,

It is not quite the end of the year, but I was asked today to describe the NM Chapter of the Vasculitis Foundation so I was inspired to frame my thoughts about who we are and what we do. I thought it might be good to set some of those thoughts down on this electronic page, and share with all of you what I think we have accomplished and what we hope to accomplish next year.

I have long insisted that the eventual "culture" that our chapter embraces, should include the collective personality of all of its members. We have been growing very slowly so that membership has not reached the sort of critical mass necessary to jump start what I would consider a culture.

We have seen some successful grass roots efforts, and some aborted public efforts. I need your help and the help of your friends and families to do more. It is for this reason, among others, that I welcome and encourage you all to participate at monthly meetings more often, and certainly you can also jump in anytime to share your thoughts in the online forums this chapter has made available to you. You are welcome.

YOU ARE ALREADY CONNECTED
You can already reach all of the other chapter members anytime you wish by sending mail to the chapter mailing list at "NMVasculitis Google Group". Ask a question, share some news, whatever. But take that first step. Be bold, and tell us what you think. (If you are shy, then at least tell me what you think.)

In 2010, I want to expand our efforts to make it more of a family affair. I encourage you to invite your friends and family to participate in the chapter meetings and also in the chapter mailing list. If they love you, then they will benefit from learning more about vasculitis, and also from the knowledge that participating in awareness events helps YOU both directly and indirectly.

Start today and let's set a goal to be more active in 2010. Perhaps it will be a launching pad to bigger and better things for all of us!

Here are some other things you can expect...

VASCULITIS AWARENESS WEEK 2010
Never forget Vasculitis Awareness Week - April 25 thru May 1, 2010

We need to plan something to do for this. What do you think we should do? There are ideas abound, but one of the simpler ones is to host a walk. Did you ask How? Well, we get a bunch of friends and family, recruit the junior civitan groups, or recruit classrooms at your childrens and grandchildrens schools, call your neighbors, friends from your churches, etc. Do what you can to get as many people as possible involved to join us and make as big a splash as possible.

Someone, maybe me, can find out if and what kind of permit we might need, and arrange that part. The rest is up to you guys to help this become a success. Maybe it will be the First Annual Walk for Vasculitis? Hey, that has a nice ring to it... come on, you know you want to help me do this, right? :o)

The action is simple. Take a walk around the block wearing a TShirt or carrying some Vasculitis Foundation gear, like flags, or banners. Maybe make one big lap around the University, or around downtown. I like the University idea because it is high exposure, and goes right in front of the UNM Hospital where many of our patients go for clinic. What do you think the route should be?

Hey, we could even do this in multiple cities for maximum exposure. Do you hear me in Las Vegas? Do you hear me in Taos? I will help you get the gear. You get your family and friends to join you and lets make it happen next April!

We alert the media we are going to do this, so they put some cameras on it for some coverage during the 5:00 and 10:00 News hours.

At the end, we could end it in a park someplace where everyone would enjoy some kind of picnic. Maybe potluck, or maybe we get this thing sponsored... I don't know and I need your help to figure it all out. Share what you know and give me your ideas. Then even if you don't walk, help recruit people in your personal circles who will walk on your behalf.

We might ask people to buy the TShirts, since that money goes to the VF for funding research, etc.

If we are especially ambitious, perhaps make it a Walk a Thon... How much per mile would you pay to support vasculitis? Would your child's school be willing to participate en mass for community service? How does that work? Do you know? Come to a meeting and lets form a committee to help figure this out. I am ready to go when you are. It can start small, but I bet once the stone is rolling, it will gather some good momentum.

2010 SYMPOSIUM IN LONG BEACH, CA
Also be aware that the 9th International Vasculitis Foundation Symposium is going to be next summer in Long Beach, California . This is the first time it has been held on the West coast, in Long Beach, California. This makes it much easier for those of us in the Southwest to consider going so that is another reason to go so they know we exist!

For more information see:
2010 Vasculitis Symposium set for July 30 - August 1, 2010 | Vasculitis Foundation
http://www.vasculitisfoundation.org/2010vasculitis-symposium

Mark your calendars because this symposium is a TREMENDOUS opportunity to empower yourself with new information, and also foster new relationships with other patients who share your symptoms. Attending one of these symposiums is one of the best things you can do to improve your "life with vasculitis." Learn about treatments directly from the top vasculitis specialists in the world, and also find out what hundreds of other patients are doing. Go if you can. Send someone else if you cannot. This is a big opportunity for you to improve your situation.

You can view some of the presentations from 2008 here:

Vasculitis Foundation
"8th International Vasculitis Foundation Symposium"
http://www.vasculitisfoundation.org/video

2009 CHAPTER "ALMOST" ANNUAL REPORT
I started out with things to come, so here is how things stand right now with our chapter.

We have about 12 "active" patients, who are on my Email list, and have attended at least one meeting. But they do not always attend meetings. I know of a half dozen more who follow the website and blog, but again, are not attending meetings. There are a few others out there who I know are aware of us because of physician referrals, or because I met them at the infusion clinic and personally gave them a brochure and card, but they have not made contact or come to a meeting.

HOW MANY MORE ARE OUT THERE?
New Mexico has a little over 2 million people, so statistically, there should be how many patients in that size of population? I do not know. What might the predicted breakdown of diagnoses be? I do not know.

I have no idea how large our target audience is other than the somewhat vague guess I can make based on the radius spreadsheet I got from the VF a while back. But that is not based on an empirical number. I think the real number of patients is more likely going to be a reasonably predicted as a smaller statistical variance of the national vasculitis trends. I would sure be interested to know these numbers. Would you?

Does the national office have this kind of information published? Is it already included in some of the information I already have? While planning for my 2010 goal setting, I need to go look again at the Chapter Handbook, the Awareness Handbook, etc, and hit the Internet to find any statistics that shed more light on who these unknown patients are, so I can try to get the message to them more effectively. If you find more information, please send it to me or send it to the group list.

It is a quiet kind of service we provide. I meet a new patient about one every third month, then they sort of fade away for a while. I see them online in Facebook, or by Email, but face to face meetings are more rare, in spite of dedication to host a monthly meeting. Speaking of which...

MONTHLY MEETINGS CONTINUE
I believe that monthly meeting is effective because that meeting is where I meet new patients.

Every month, on the third Thursday, at 6PM, we have a meeting. I will be there. Usually my daughter is there, and often there may be someone else there. Even though attendance can be hit or miss, the concept of holding a regular meeting, at a regular time so people can depend on it, is a good one. Why don't you come and keep me company and catch me up on how you are doing? I will be waiting for you next time at McAllisters Deli in Uptown Shopping Mall, at 6PM on December 17th. Come have a glass of sweet tea, or a piece of pie. Or just a glass of water and conversation. No matter. Just come.

Currently, we are shopping around for a new meeting place, so the monthly meeting can move from one month to the next. Details about the location are always announced on the NMVasculitis Meetings page of the website, and in the NMVasculitis blog, (which you may be reading now if you like to click on the links) and in the NMVasculitis mailing list, and even in the NMVasculitis Calendar. Soooo... you know where to go to find out where we will be.

WEBSITE, BLOG and MAILING LIST
The website and blog, which I just mentioned are also effective, because I sometimes get feedback from some of you by Email after a particularly useful post in the website or blog. The more remote patients especially find this useful since attending a meeting is really tough. Lets all get more active in sharing what we know. You see things in the media, your doctors tells you things, you know things from personal experience. Share what you know and lets all benefit from the collective intelligence we can provide to one another.

WHO ARE WE?
I support patients who live all over NM, mostly from Albuquerque, but also as far away as Las Vegas, NM (123 miles) and Taos (132 miles). Not so many from the southern part of the state, but I do not think they even know this chapter exists yet. I even get contacted by people from other states as far away as Florida. That is more rare, but it happens. I pass them on to a local chapter if I can find one.

HOW DO PEOPLE LEARN ABOUT THIS CHAPTER?
Most often new patients come to me because of a referral from the VF office, or the Mayo Clinic nurses refer them after visiting your support pages, etc. Occasionally, they have heard of our monthly meeting through word of mouth, so that is a hopeful sign that we are starting to gain awareness and recognition. Part of my goal in 2010 is to get better organized with public relations efforts so we can get some media attention. I have not been as aggressive about that as I could.

2009 MAKE-A-WISH NM RECIPIENT IS A VASCULITIS PATIENT
One opportunity to foster awareness is coming up just after Christmas. Meaghan Carpenter has Churg-Strauss Syndrome vasculitis.

You may already be aware that Meaghan is one of the 2009 Make-A-Wish recipients in New Mexico. You may not be aware she is also the only Make-A-Wish recipient in the entire country this year for whom an international travel wish has been granted thanks to a generous donation by Monogram Travel, an international travel company.

Just after Christmas, Make-A-Wish Foundation NM will send her to visit the original "100 Aker Wood" at Ashdown Forest in the county of East Sussex, England. Ashdown Forest is famous as the setting for the Winnie-the-Pooh stories, written by A. A. Milne for his son Christopher Robin Milne. The first book, Winnie-the-Pooh, was published in 1926 with illustrations by EH Shepard.

Winnie the Pooh is sort of Meaghan's totem because of another book based on the character. The wisdom offered in the book, "The Tao of Pooh," by Benjamin Hoff, gave Meaghan the courage to accept the diagnosis of her chronic illness at age 15 with courage and more grace than many might have done under similar conditions. She will also get to see Shakespeare's Globe Theatre and some other sights in London, England. It is beyond imagining how looking forward to this generous gift of a wish has helped to boost her outlook through some tough times over the past year.

Both Meaghan and I will report on this wish experience and I hope to see news of it serve the purpose of increased Vasculitis Awareness.

MEDICAL INFORMATION KITS ARE AVAILABLE FOR YOUR DOCTOR
In 2009, the Vasculitis Foundation arranged with several medical experts to create Medical Information Kits. This is the kind of information only a doctor would be able to understand and use, but the point is it is a big help to jump start any doctor who might not understand your condition.

I would ideally like to arrange for every doctor who treats a vasculitis patient to get a medical information kit sent to them directly from the VF. That is one of my awareness goals for 2010. You can help by telling me about your various doctors: especially their names, addresses, phone numbers, etc, so I can make this happen. You benefit immediately, because once your doctors are better educated about your condition, they will be better able to treat your condition.

I am also privately interested in your feedback about your doctors, but I would not share that publicly. Just knowing who has been naughty or nice to you helps inform my referrals to other new patients. Referring new patients to competent doctors is one of the best things we can do for them to see they get the treatment they need. So I need you to tell on your doctors.

Tell us about your doctors now:

NM Vasculitis Doctors (NMVasculitis.org)
http://www.nmvasculitis.org/Home/support/nm-vasculitis-doctors/nm-vasculitis-doctors

HEALTH FAIRS -- "JUST DO IT" IN 2010 (or maybe 2011)
Another example of public awareness is one boat for which we missed the deadline due to a slow start and an absence of funding. That would be the annual KOB Health Fair New Mexico coming up in January 2010. This health expo exposes about 10,000 visitors to the message, and it is an opportunity to sell or give away awareness items. This event is hosted every year by KOB 4 News, one of our television news stations, and would seem to be a bonanza opportunity to expand awareness. We must absolutely prioritize showing up at events like that if we want to get on the NM Nonprofit awareness map.

It would be a cinch to get a booth. Just pay the $600 fee, and recruit warm bodies to man the booth for two days. I can get a box of brochures from VF National in a heartbeat and we can make up something to decorate the booth creatively. That is all in principle.

What I am finding in practice is that I must push it forward, then hope that the "Popularity Factor" will make more people want to join in and help out. Not only patients, but also family and friends. It will also help to get an earlier start next time.

The one person who immediately volunteered this year is not a patient and her vasculitis friend actually lives in another state. I know more of you would probably join in efforts like this if I do a better job getting things organized sooner. I am learning on the job and I welcome your help.

Your Ticket to a Healthier Life!
You can be a part of the largest and most comprehensive Health Fair in New Mexico. We saw some 10,000 health-conscience New Mexicans attend the 2009 Eyewitness New 4 Health Fair and we are already expanding for 2010.
Our show hours are:
Saturday, January 23, 2010 9:00 a.m. - 5:00 p.m.
Sunday, January 24, 2010 9:00 a.m. - 4:00 p.m.
Lujan Exhibit Hall at Expo New Mexico (State Fairgrounds)

At a minimum, ANYTIME you hear of an event like this, do let me know ASAP.

As a Plan B, I intend to go to the 2010 KOB Health Fair NM as an attendee, and chat up anyone I can find about the local VF chapter, the national Vasculitis Foundation, and in general spread awareness through sheer determination. Why don't you do the same and perhaps together we can make some contacts that will help us get better organized into 2010 and beyond.

SPONSOR A YOUTH SPORTS TEAM AND NAME THE TEAM

I coach youth sports all the time, and it just occurred to me that I could leverage this exposure to crowds by getting a team sponsor. Then customizing the jersey with a team name like... what would you call a team that was related to vasculitis?

The Blood Cells
NMVASCULITIS
The Eosinophils
The Prednisones
The Pred-Ni-Zone

Awkward!! I lack the requisite looseness of mind to do this right now. Send me your ideas about naming a Vasculitis Mascot and maybe you will see it applied to a TShirt or Jersey for a sports team at a field or court near you. People will ask what it means, and you can tell them a story... That is how it works.

FRUITS OF YOUR AWARENESS EFFORTS INCLUDE HELPING MORE PEOPLE
You may have sensed that one of my themes for 2010 is going to be reaching our more to patients, and also to friends and families of vasculitis patients with a secondary purpose of asking them to participate. I wonder sometimes if there are more patients and families out there we could help if only they were aware that help exists. Without an active membership, it is very challenging to even imaging expanding these efforts by myself. But I do it anyway. Am I stupid, or just stubborn? I choose to believe the latter, and keep counting the times I have shared information with people which they say helped improve their situation, and at least let them know they are not alone. Spreading awareness can be as simple as having a conversation.

MORE FUN in 2010
Going into 2010, I am also increasingly mindful now of trying to organize more fun things to do that are not necessarily "vasculitis related," but would inspire people to WANT to attend. Instead of "Come meet me to talk about vasculitis" it would be "Come to this great fun event." Then once they are present, they get exposed to the VF message anyway. Sort of a softer approach. Less serious, but more likely to attract attendance... Like attending a movie, negotiating two for one meal discounts, or even playing Putt Putt Golf. Concerts at the Zoo as a group... Whatever people would like to do, I am open to try.

DECORATING MY TRUCK
I am considering getting a sign made for my truck (which is coincidentally already painted red) to advertise NMVasculitis... How about that? Do you think it is a good idea? Would you put a sign on your car? How about a bumper sticker? What do you think such a sign should say?

INSPIRATION IN THE MEDIA
The upcoming television special on Discovery Health regarding Mystery Diagnosis is inspirational in terms of encouraging one to aim high. Did you know some of that footage was produced by other vasculitis patients? Talk about taking control of your situation! You can watch this next Monday:

Event: Watch "Mystery Diagnosis"
What: Lecture
Start Time: Monday, December 7 at 10:00pm
End Time: Monday, December 7 at 11:00pm
Where: Your living room on the Discovery Channel

Discovery Health :: TV Listings :: Mystery Diagnosis
http://health.discovery.com/tv-schedules/series.html?paid=62.14341.120601.29206.x

Summary:
Mystery Diagnosis
The Boy with the Strange Stare
In 2006 DeAnna and Jonathan Withrow's son Landyn is born; but when they hold him for the first time, they notice his gaze is fixed on the ceiling. In March of 2004 Cyndi Webber notices a bruise on her leg that will not disappear.

Note: Cyndi Webber has MPA vasculitis. They may also make this episode available later as a video podcast.

I am inspired to make more efforts to reach out to our New Mexico media next year, while also keeping up the grass roots methods I have in place now. Part of that is basic boots on the ground stuff like writing more press releases, and arranging for interviews with whoever will listen.

We had a mild attempt at this before from one of our local patients, Karla Kollasch, and arranged by Carlene Hobbs. Karla got about ten seconds of drive time air on 770 KKOB with Steve Villanucci. It turned out to be a less than idea venue, and the exposure was more limited than it could have been.

Getting on a morning talk show like Good Morning New Mexico, or getting on the radio again with a more dedicated interview would be great. Who will join me to make it happen? I will need a patient and/or perhaps a doctor to speak to give it legitimacy. Keep this in mind and lets find out if we can arrange for some exposure.

VF MEMBERSHIP HAS BENEFITS SO JOIN OR RENEW TODAY
I have always put new patients in touch with Shannon Morgan, the Vasculitis Foundation New Patient Coodinator and vice versa, so they should be hopefully be getting to the Vasculitis Foundation on a national level. That brings advantages in terms of getting information from VF that I cannot provide by myself. Mine is actually due now, so I should set the example and take care of that now.

Come to a meeting and I can get you a form, or go online to:

Membership Renewal, US | Vasculitis Foundation
http://www.vasculitisfoundation.org/node/206

or

Membership Renewal, International | Vasculitis Foundation
http://www.vasculitisfoundation.org/node/207

CONCLUSION
I am sharing these thoughts now to let you know some of what I am planning, and also maybe, hopefully, to inspire you to participate more this coming year in the growth of the NMVasculitis Chapter and in planning and executing awareness and education efforts. Several of you have expressed the best intentions and even a willingness to help. Now just do it.

This thing we call Life is a busy thing, and we all need to take it one day at a time. Especially when encumbered with a chronic illness and other family and business concerns. Even so, please make one of those steps this next year in favor of promoting Vasculitis Awareness.

Remember always that Awareness ultimately leads indirectly to research dollars, so go ahead and be selfish by promoting awareness. Help us make more people aware of this condition and aware of the local support options this chapter provides.

Keeping it real, I hope to see you on December 17th at McAllisters Deli in Uptown, or in the Google Group mailing list! If you find news we can use, write it up and send it to me and I will post it in the blog and or on the website. Your contributions are welcome!

Joseph Carpenter
Email
Parent, daughter with CSS (DX March '08)

Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.

Mark Your Calendars for Vasculitis Awareness Week - April 25 thru May 1, 2010 when we all come together for a single purpose -- to raise awareness.
https://www.vasculitisfoundation.org/teamvasculitis

WHY YOU SHOULD SHARE INFORMATION ABOUT YOUR DOCTORS

2009-12-03T18:05:00.000-07:00

We need to know about all of your doctors. Because vasculitis is a systemic condition, all of your doctors are instantly upgraded to vasculitis doctors. They need to know about the complications of your symptoms and they need to know how your immune suppression therapies will affect other diagnoses.

The Vasculitis Foundation has medical information kits that were created especially for doctors. Let me know who they are and I will arrange to get this information to your doctors.

Tell us about your doctors now:

NM Vasculitis Doctors (NMVasculitis.org)
http://www.nmvasculitis.org/Home/support/nm-vasculitis-doctors/nm-vasculitis-doctors

Ideally, you will tell us how wonderful your doctors are, and we can all swap success stories. However, there is also a dark side to this coin. What can happen when someone does not get lucky and draw a good doctor? Not all stories have a happy ending.

The most tragic vasculitis story I have personally been involved with in 2009 involved a woman who called me from Texas to get help finding treatment for her brother. After the family reported losing contact with him for several days, the sheriffs broke into his home and found him collapsed on the floor. They transported him by ambulance to Albuquerque, where he received critical care at a hospital and then was moves to a nursing home for further care and "rehabilitative treatment." His condition was very serious, but he was verbally responsive. He has one niece in Albuquerque, but his primary resources were his sister in Texas and his other sister in California. I am intentionally withholding the names, but I assure you this is too terrible not to be true.

At one point the doctors mentioned that he might have vasculitis, and that is how his sister in Texas eventually found her way to contacting me through the Vasculitis Foundation. I gave her the names of doctors I know and the telephone numbers to the clinics. She called and was then given the number for Doctor to Doctor Referral. They told her his attending physician should call in and consult with the rheumatologists to verify his symptoms and get expert advice about how to continue. It was that simple.

His doctor at the nursing home refused to even accept the phone number. She told the family that his quality of life was so poor that he was not expected to live and that there was no point in even calling for a second opinion because it would be a waste of time.

Now, the patient was still responsive at this time. When his sister asked him, "Would you like me to try and get you some treatment?" She reported that his response was "Yes." The doctor in question still would not call the number or release him for a second opinion.

He was later transferred to Hospice care, where they immediately found and treated a terrible bed sore. Three inches deep on the surface, and seven inches rotted below that which had not been treated by the nursing home doctor. All of that had to be removed down to the bone. This injury of neglect I found to be horrible, even from a second hand perspective.

The sister pleaded with the doctor, but could not get him released without that doctors referral. Due to some technicalities in order to get a second opinion, she took steps to get him reassigned, but again the same doctor refused to cooperate. Was it pride? Was there a medical reason? Nobody knows why, and she would not explain it to the family in any way that they could understand. In fact, when the sister from Texas travelled to Albuquerque to meet this doctor to discuss her brothers condition, the doctor avoided her and would not meet with her.

One nurse finally strongly urged them to get him out of there, and to move here to Albuquerque, take an apartment and take care of him themselves.

The family did visit as often as they could, but they not have the resources to uproot their families and move here to take care of him personally. Nor did they have the funds to pay for rehabilitation for his arthritis or to force the situation to get him to see a vasculitis specialist or whatever he really needed. They never knew for sure what he needed, because of the roadblocks put up by this nursing home doctor.

I spoke to the sister from Texas again this morning on the telephone, and she told me her brother died a little over a month ago due to complications from his various conditions. He was cremated due to the extremely bad smell related to his rotting bed sores.

The question remains whether it was necessary for him to die as soon as he did? If he had not been denied treatment through whatever decision process this nursing home doctor used, which went against the wishes of the family and also against his own wishes, then he might still be alive. The hardest thing for the family is not knowing for sure if he might have been successfully treated if given a chance. That concern is going to plague them forever.

The point of this story is to illustrate how very important it is for all of you to share with each other, through this chapter, the names of your doctors who already know about vasculitis and how to treat it, so that we can direct new patients to those better doctors. Heaven forbid you should ever experience anything so tragic as this story, but when you encounter a negative experience with a doctor, you should share it with the membership so that nobody will every suffer the way this man did and the way his family continues to suffer over his possibly unnecessary death.

Tell us about your doctors now:

NM Vasculitis Doctors (NMVasculitis.org)
http://www.nmvasculitis.org/Home/support/nm-vasculitis-doctors/nm-vasculitis-doctors

Mystery Diagnosis : Discovery Health

2009-12-02T17:51:00.000-07:00

Mystery Diagnosis : Discovery Health

Posted using ShareThis

Every year, millions of Americans fall prey to real-life medical mysteries—ailments that go undiagnosed or misdiagnosed for years. Their lives are thrown into turmoil—sometimes their sanity is called into question—as medical professionals struggle to understand their baffling conditions.
Mystery Diagnosis tells their stories. In each episode we are confronted with two medical mysteries. The stories are told through intimate interviews with the patients themselves, their families, friends, and doctors. These interviews in combination with photos and home movies, highly stylized recreations and CGI anatomy sequences and take the viewer step-by-step through a medical odyssey. Symptoms emerge. Tests are analyzed. Specialists are consulted. But still, something is not quite right. Time passes and the daily struggle continues. And then one day, because of a patient's relentless pursuit of an accurate and final diagnosis (or the determined efforts of their family or a forward thinking doctor) the puzzle is solved and an accurate diagnosis given.
In each personal story, the patients, doctors and everyone involved discover the importance of being vigilant. They learn that medicine is often more of an art than a science, and that the journey to diagnosis can be a twisted path full of many surprises.

Tune in for all new episodes of Mystery Diagnosis! Get the schedule.

2010 Eyewitness New 4 Health Fair

2009-11-26T14:18:00.001-07:00

Would anyone like to donate the $600 booth fee so our chapter can attend this event as an Exhibitor? See below.

Or, if 20 people donated $30, we could do an event like this and reach out to thousands of health conscious New Mexicans.

Would any of you patients, caregivers or friends be willing to volunteer your time to man the booth?

If not this year, then please consider this for next year.

Plan B:
You all should go to this event to learn about health resources in New Mexico. So....

If we cannot attend as Exhibitors this year, then I encourage all of you to go as attendees and wear your Vasculitis Foundation T-Shirts. If you know you are going, then come to the January meeting and I can give you one of the few older T-Shirts I have left, or you can purchase Awareness gear from the VF online store. Those proceeds benefit you indirectly, so don't be shy.

Try to engage some of these other organizations in a dialogue about vasculitis. Tell them about the local chapter and direct them to our local chapter website. Perhaps we can form more active partnerships with local organizations for the future, so our chapter gets invited to more events like this one. Or maybe we can start getting more press, when the media wants to write about health related issues.

BE PREPARED TO TALK ABOUT VASCULITIS EVERYWHERE YOU GO.

Joseph Carpenter
joseph@nmvasculitis.org
Parent, daughter with CSS (DX March '08)

Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.

http://www.kob.com/article/10500/

Your Ticket to a Healthier Life!

You can be a part of the largest and most comprehensive Health Fair in New Mexico. We saw some 10,000 health-conscience New Mexicans attend the 2009 Eyewitness New 4 Health Fair and we are already expanding for 2010.

Our show hours are:
Saturday, January 23, 2010 9:00 a.m. - 5:00 p.m.
Sunday, January 24, 2010 9:00 a.m. - 4:00 p.m.

Lujan Exhibit Hall at Expo New Mexico (State Fairgrounds)

As an Exhibitor you will receive:
Choice of available 10' x 10' booth (100 square feet of exhibit space)
Listing in the Eyewitness News 4 Health Fair Program
One (1) 6' table, draped and skirted, and two (2) chairs
Five (5) Exhibitor Badges for your staff working the event
Five (5) Parking Passes for each of the two days of the event
8' high draped back drop and 3' high draped side booth dividers

Total Investment: $550.00 + Sales Tax (6.875%) = $587.81

$250 deposit per booth with application due by December 1, 2009.

How to apply:
1. - View the Booth Layout Map and choose your preferred booth location.

2. - Fill out the Application below and click "Send."

3. - A representative will contact you regarding payment.

For questions, you may contact Joan Lucas, Public Affairs Director, at (505) 764-2490 or jlucas@kob.com.

Help for Caregivers

2009-11-17T00:53:00.002-07:00

National Family Caregivers Association
"Rosalyn Carter said it best: “There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers”. Caregivers are needed for family members of all ages. With appropriate information and support, family caregivers can help their loved ones across the lifespan."
http://www.thefamilycaregiver.org/who_are_family_caregivers/

See an introduction to what this is all about by Suzanne Mintz, president of NFCA:

The Gifts of Vasculitis by Lynn Corwin

2009-11-12T03:46:00.001-07:00

This is a remarkable example of the power of perspective. I reprint it here in case you have not yet seen it. - JWC

Cleveland Ohio Vasculitis Foundation Chapter - The Gifts of Vasculitis by Lynn Corwin
Original article can be found here

The Gifts of Vasculitis
by Lynn Corwin

Vasculitis has given me so much more than it has taken from me. Let me explain.

I have a new appreciation for life that I didn’t have before. Every day is more meaningful because I realize how important every single day really is. We all have a finite amount of days to live; we are all going to die someday. Being diagnosed with vasculitis forced me to think about the fact that I might not live forever, which is sort of what I offhandedly thought. I see now that each new day that I wake up on the correct side of the grass is a good day. No matter how difficult things have been, or how concerned I am with the many negative things going on in my life…each new day holds promise. And I try to concentrate on what is going right in my life. I love each and every morning. What a gift!

I have a new kind of empathy and compassion that I didn’t have before. I never stopped to realize that sometimes people that look perfectly healthy are not. There are things wrong with many of us that do not show. If someone had a broken leg or a skin disease, I could certainly sympathize because I could see what was wrong. But now I know that some of the people that look the best have the most problems. I now care about all the difficulties people are having, not just the troubles I can “see”. I feel that I have a deeper understanding, and that “everyone is fighting some kind of battle”. So I try to be kind to everyone I meet. Having vasculitis has given me this beautiful gift of compassion which has made me a better person than I ever was. What a gift!

I have made some wonderful friends that I never would have known had I not had vasculitis. When I think of how empty my life would be without Shannon, Jane, Heather, Robert, Mark, and so many others, I realize that these “vasculitis friends” are such a blessing. If I had been healthy, I wouldn’t have met (online or in person) some of the loveliest, kindest, caring people all over the world. These people have supported me and enriched my life beyond measure, and they are my true blessings. What a gift!

And some of these wonderful new friends are people who have lost a loved one to vasculitis. Somehow I find the words to comfort them and guide them towards working for the cause to honor their loved one. These people live in agony, yet I have helped them to live with their pain. Before vasculitis, I couldn’t and wouldn’t have known what to say. I would have just turned a blind eye to their suffering. Now I can help them walk the walk. What a gift!

I have learned to accept myself and other people in a non-judgmental way. I have accepted my own unattractive physical changes due to vasculitis, which has raised my self-esteem considerably. It’s what’s inside of me that defines who I am. Before vasculitis, I put a great value on “looks”. I know we are in a world filled with all kinds of people, and I respect them all. I no longer have to be right all the time, nor does everyone have to do things my way in order to get them done properly. I am so much more laid back and likeable than I was before vasculitis came knocking at my door. I accept my own and other peoples’ faults and philosophies with a kindness I never knew I had. (probably because I didn’t have it before) What a gift!

I now know that people are dying and crippled because they didn’t get their vasculitis diagnosed in a timely manner…reason being, most medical people don’t know anything about vasculitis, although I have encountered some unbelievable doctors and allied medical personnel specializing in vasculitis who have helped me tremendously on my journey. So I have made it my mission to raise awareness of this disease in the medical and lay arenas. It has become a full-time job for me; a labor of love. I’ve never done anything particularly memorable in my life until now, and I feel I am really helping and making a difference in the lives of those who are affected by vasculitis. It is a warm and wonderful feeling. What a gift!

So the bottom line is – I have an incurable disease that has presented me with both challenges and opportunities. Vasculitis has given me so much more than it has taken from me…what a gift!

ABOUT THE NOVEMBER MEETING - UPDATED

2009-11-06T19:57:00.003-07:00

Well, I learned immediately that Bennigans is closed. Closed, as in out of business, boards on the doors, for lease sign in the street. Wiping egg off face now...

So, here is updated information. Pssst... I called Shoney's to make sure they are still in business! :o) Thurday night they will have barbecue in the buffet! Come one come all... to the Jellicle Ball that night.

INFORMATION ABOUT THE NEXT MEETING:

NOVEMBER 2009

The November 2009 meeting of the NM chapter of the Vasculitis Foundation will be on November 19th.

This month, we are going to Shoney's, on Lousiana, on the SE corner of Lousiana and Menaul.

As always, it starts at 6PM and lasts at least one hour, but often goes longer if we are having a good time.

Shoney's
6810 Menaul Blvd NE
Albuquerque, NM 87110-3624
(505) 883-0040
shoneys.com

Click here for:

My Google Maps of Restaurants for Meetings
(This link should zoom to the next location, and the map will also include pins for other locations, past and present. Click on a blue pin to see details about that location.)

In the News: Chinese Herb May Ease Rheumatoid Arthritis

2009-10-22T02:03:00.003-06:00

Vasculitis is an inflammatory condition. While few people will outright recommend alternative medicines, patients already know that relief can be found through solutions outside of the mainstream medical treatments. There was even a special session on this topic at the 2008 Vasculitis Foundation Patient Symposium.

So, it is with an open mind that I offer this news to you. Consider any potential new treatment wisely, and follow one bit of mainstream advice that never gets old:

Do not take any medicine
or treatment without
consulting with your doctor(s).

WebMDHealth Newletter : Chinese Herb May Ease Rheumatoid Arthritis
"Chinese Herb May Ease Rheumatoid Arthritis
‘Thunder God Vine’ May Work as Natural Treatment for Rheumatoid Arthritis Symptoms

By Jennifer Warner
WebMD Medical News
Reviewed by Louise Chang, MD

Aug. 17, 2009 -- A Chinese herbal remedy may help ease symptoms in people with rheumatoid arthritis .

A new study shows that the Chinese herbal remedy Tripterygium wilfordii Hook F (TwHF), also known as “lei gong teng” or "thunder god vine," helped decrease joint tenderness and pain in a small group of people treated with the medicinal plant."

[Note: I cannot post the entire article due to WebMD copyright. However, you can read the rest of the story here:]
http://www.webmdhealth.com/nl/nlv.aspx?id=gbfcn7Ijg9Q=&s=11294

You can find links to resources about natural and alternative treatments on the Education page of the NMVasculitis web site here:
http://www.nmvasculitis.org/Home/support/education#TOC-Natural-Alternative-and-Complementa

For example, a quick search at The National Center for Complementary and Alternative Medicine (NCCAM) leads me to more information here:

Thunder God Vine [NCCAM Herbs at a Glance]
http://nccam.nih.gov/health/tgvine/

Hope this does not offer false hope for pain relief. Discuss your options with your doctor before trying any treatment that might conflict with your medications.

Joseph Carpenter
Parent, daughter with CSS (DX March '08)

Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org

About Swine Flu -- Booga Booga!

2009-10-21T21:11:00.008-06:00

There is much buzz going around about the swine flu these days. Mostly it is a big fat scary question mark for most people. Should I get vaccinated? What happens if I get it? Will it kill me?

First my personal disclaimer...

I am NOT an expert. However, I also have these same concerns, so in keeping my ear to the ground I have a discovered a couple of answers I can share with you. Just my perspective and I am sure others may differ, so make up your own minds. You are responsible for you.

Here goes...

What is swine flu?

In case you did not know, there are other variations of H1N1 in the normal annual vaccine, but this new one so called "swine flu" aka "2009 H1N1" aka "" is genetically unique enough to be unaffected by the regular seasonal flu vaccine and so requires special attention.

H1N1 (Swine Flu)
"H1N1 flu is a new influenza virus causing illness in people. It has two genes from flu viruses that normally circulate in pigs in Europe and Asia, plus avian genes and human genes. Scientists call this a “quadruple reassortant” virus."
http://www.flu.gov/individualfamily/about/h1n1/index.html#what

[Just so you know, I am not making these links clickable on purpose. To learn more about Swine Flu - Booga Booga (use your imagination to insert dramatic sounds of thunder and lightning crashes here), then you can visit the very clickable link to flu.gov I will give you at the end of this article. I will quote heavily from that site, but the same information is also available from other sources.]

How widespread is the flu pandemic?

The outbreak of H1N1 is very widespread. It is affecting people all over the country. No matter who you are, by now, you probably know people who have it, or who have had it in their family. You can look at the map, but it is pretty dull, since the entire thing is the same color. That means it is everywhere. This is what a pandemic looks like:

CDC - Seasonal Influenza (Flu) - Weekly US Map: Influenza Summary Update
http://www.cdc.gov/flu/weekly/usmap.htm

What happens if I get the swine flu?

What happens if you get swine flu it is you get the flu symptoms. I mean you have had the flu before, right? If you have never had the flu, then perhaps you should write an article about healthy living. See the symptoms:

Symptoms of Flu

Seasonal Flu - All types of flu can cause:

* Fever
* Coughing and/or sore throat
* Runny or stuffy nose
* Headaches and/or body aches
* Chills
* Fatigue

H1N1 Flu - Same as seasonal flu, but symptoms may be more severe.

* Fever
* Coughing and/or sore throat
* Runny or stuffy nose
* Headaches and/or body aches
* Chills
* Fatigue

In addition to the above symptoms, a number of H1N1 flu cases reported:

* Vomiting
* Diarrhea"
http://www.flu.gov/individualfamily/about/symptoms/index.html

What the doctors and reading widely tells me is this swine flu is generally about twice as bad as the regular flu, and about twice as many people as usual will get it. So, if last year two people in ten got the flu, then this year perhaps four people in ten will get sick with the flu, and so on. But, I also understand that not all of those will necessarily get the swine flu, so the using just the numbers to evaluate risk gets complicated.

So, if you normally get off easy, you might still, and if you do get sick, you may notice it more.

If you normally get your ass kicked by the flu, then be prepared for perhaps an especially bad time of it. But, considering the odds, most people are still going to end up okay even if they do get it. The ones who need to be extra careful are those in the high risk groups. Such as say... any population of patients with other conditions who must take medications that suppress their natural immune system.

Going on to describe what to expect is more difficult, since I have not had the swine flu. Those I know who have had it and recuperated, said it was a nasty flu... but nothing particular stood out from other flus they had in the past.

I read an article about a group of infected US Air Force cadets that helps shed light on the timeline for this particular flu and also suggests that Tamiflu may not help shorten the duration of this swine flu:

July 4 swine flu outbreak shows pattern of virus(Print Version)
"July 4 swine flu outbreak shows pattern of virus

URL of this page: http://www.nlm.nih.gov/medlineplus/news/fullstory_90860.html (*this news item will not be available after 01/18/2010)

Reuters Health Information Logo
Tuesday, October 20, 2009

People practice coughing into their sleeves as a way to try to control the spread of the H1N1 swine flu virus, during a meeting for workers at the Maryland Department of Health and Mental Hygiene in Baltimore, September 3, 2009. REUTERS/Jonathan Ernst (UNITED STATES HEALTH)By Maggie Fox, Health and Science Editor

WASHINGTON (Reuters) - More than 100 new cadets at the U.S. Air Force Academy got infected with swine flu at a July 4 barbecue and fireworks display but quick isolation measures got it under control within two weeks, researchers reported on Tuesday.

The outbreak provided a unique opportunity to study the virus closely and Dr. Catherine Takacs Witkop and colleagues say they discovered some surprising things. Among them:

* Nearly a quarter, or 24 percent, of patients still had virus in their noses seven days after getting sick, including 19 percent who had been well for at least 24 hours

* Tamiflu, the drug used to treat influenza, did not help any of the previously healthy young men and women get better any quicker.

* Most cadets were sick for five days or longer

* Eleven percent of the cadets became infected."
http://www.nlm.nih.gov/medlineplus/print/news/fullstory_90860.html

That particular outbreak offered a wealth of information to medical researchers who are studying the way this flu spreads, and it also sheds light for those of us who just want to know what to expect.

As it happens, the percentage of cadets infected happens to parallel pretty closely the percentage of kids at my daughters school who have become ill. I wonder if that is merely a coincidence or if it makes the numbers more meaningful as a predictor?

Who should get the vaccine?

As a vasculitis patient, you should always get your annual regular flu vaccine, and now you should also get the 2009 H1N1 "swine flu" vaccine.

People with Health Conditions
"People with certain health conditions such as asthma, arthritis or lupus, diabetes, cancer, HIV/AIDS, and heart or kidney disease may face special medical challenges during flu season."
http://www.flu.gov/individualfamily/healthconditions/index.html

Don't feel sad that they did not mention vasculitis by name. To fix that, wear your vasculitis T-Shirt more often, pass out Vasculitis Foundation (VF) brochures on clinic days (call the VF to get some or ask me), and start making awareness a priority in your every day life. E.g. Try striking up at least one conversation about vasculitis with a new person every day. Wearing VF items is one way to get noticed and inspire questions.

In the meantime, just know that your condition qualifies you for the dubious honor of fitting into the category of "a person at high risk for complications from flu symptoms."

Look at your most recent blood workup. What is your T cell count? Here is a quote from a medical article concerning flu vaccines. I quote from a section specifically about "Immunocompromised Persons."

Prevention and Control of Seasonal Influenza with Vaccines
http://www.cdc.gov/mmwr/preview/mmwrhtml/rr58e0724a1.htm

"Immunocompromised Persons
TIV produces adequate antibody concentrations against influenza among vaccinated HIV-infected persons who have minimal AIDS-related symptoms and normal or near-normal CD4+ T-lymphocyte cell counts (136--138). Among persons who have advanced HIV disease and low CD4+ T-lymphocyte cell counts, TIV might not induce protective antibody titers (138,139); a second dose of vaccine does not improve the immune response in these persons (139,140). A randomized, placebo-controlled trial determined that TIV was highly effective in preventing symptomatic, laboratory-confirmed influenza virus infection among HIV-infected persons with a mean of 400 CD4+ T-lymphocyte cells/mm3; however, a limited number of persons with CD4+ T-lymphocyte cell counts of <200>140). A nonrandomized study of HIV-infected persons determined that influenza vaccination was most effective among persons with >100 CD4+ cells and among those with <30,000>53).
On the basis of certain limited studies, immunogenicity for persons with solid organ transplants varies according to transplant type. Among persons with kidney or heart transplants, the proportion who developed seroprotective antibody concentrations was similar or slightly reduced compared with healthy persons (141--143). However, a study among persons with liver transplants indicated reduced immunologic responses to influenza vaccination (144--146), especially if vaccination occurred within the 4 months after the transplant procedure (144)."

Looking at the science is like reading Greek to most of us, but the short and sweet of it is the flu vaccine can help you if you are immune compromised or immune suppressed, which is essentially the same thing. Keep in mind research that benefits understanding of cancer and HIV sometimes directly benefits understanding of vasculitis as well. So vote yes to medical research grants when you get the chance. Especially for autoimmune related conditions.

The article I quoted also seems to suggest that if your disease is asymptomatic, then your immune system may be a bit stronger than when you have active symptoms, or what vasculitis patients sometimes refer to as a flare. That part is just my interpretation, but I think it makes sense from what I have observed on Meaghan's good days and bad days.

I think this information may also imply that lower doses of chemotherapy and prednisone suppresses your immune system less, so lower doses means you should be better off in terms of fighting off the flu. Common sense is not dead. I wonder if it applies that way?

Yeah, vasculitis patients in the target risk group (ages 8-18) should definitely take extra precautions, and they should be talking to their various doctors about obtaining the special H1N1 vaccine. But that does not mean everyone you know needs it.

Patients over 60 may be at less risk from swine flu than the regular flu:

"CDC laboratory studies have shown that about one-third of adults older than 60 may have antibodies against this virus. It is unknown how much protection may be afforded against H1N1 flu by an existing antibody."
http://www.flu.gov/individualfamily/about/h1n1/index.html

In fact, to whip this bugs butt, the more healthy people that get it and beat it, the better off we will all be. I spoke to one emergency room nurse who said that if he did not have an immune suppressed patient in his family, he would get everyone together for one big swine flu party, so they could all hug and kiss and trade boogers to get the swine flu, then camp out and recover together. That way they could grow the antibodies and get on with their lives .

Musing: Would it not be lovely to know a number for your own baseline immune system, and then also know the actual percentage associated with the immune compromise?

Imagine this statement by a vasculitis patient:

"Say, my healthy immune factor is normally an 85, but I have 23% suppression from the current dosage of methotrexate and prednisone, so my immune system is operating at about 65.55 right now. I am up 1.5 points from last month, so I feel great about that."

Obviously we do not get to know our personal "immune factor," and there is no sure way to calculate the percentage of immune suppression. However, if you are in a high risk group for complications from regular flu, then yes, you should seek out both the inactivated regular season flu vaccine and the inactivated H1N1 flu vaccine when it becomes available.

Activated? Inactivated? What kind of flu vaccine should I get?

For both regular flu vaccine and swine flu vaccine, be sure to get the shot of the dead virus in the arm, not the squirt of live virus in the nose.

CDC - Seasonal Influenza (Flu) - Key Facts About Seasonal Flu Vaccine
"There are two types of vaccines:

* The "flu shot" — an inactivated vaccine (containing killed virus) that is given with a needle, usually in the arm. The flu shot is approved for use in people older than 6 months, including healthy people and people with chronic medical conditions.

* The nasal-spray flu vaccine — a vaccine made with live, weakened flu viruses that do not cause the flu (sometimes called LAIV for "live attenuated influenza vaccine" or FluMist®). LAIV (FluMist®) is approved for use in healthy* people 2-49 years of age who are not pregnant."
http://www.cdc.gov/flu/protect/keyfacts.htm

Caregivers and others living in the same household with an immune suppressed patient should also avoid the live vaccine as it can be contagious to your loved one. You do not want to actually get the disease, even in a mild form, when you are around an immune suppressed patient.

What about caregivers? Should they get the H1N1 vaccine?

First off, if you did not get your regular season flu vaccine, go do that ASAP.

Opinions differ about whether caregivers should get all the vaccinations or not. Even if you want to get the H1N1 flu vaccine, you may not be allowed to get the vaccine unless you are also in the high risk group for some other reason.

The logic is not necessarily the same in the mind of public health care professionals as it is in your mind. You think, "Hey, I need protection so I do not pass it on to my loved one." They think, "We only have x doses of this stuff, we need to give it first to people who really really need it."

Depending on your situation, you must decide who to ask, and how aggressively to press the issue. However, do not be surprised when they may tell you that you do not qualify now and you should come back later. I think the answer you get will depend entirely upon who you ask, and how you ask the question. Finger to nose as I give you the heads up to be very nice about it when you do ask.

As a caregiver, I think about the scenario where I get the swine flu and am therefore required to isolate myself from my daughter for the five to seven days it will take my body to beat it off. Then another 24 hours after that, just to make sure I am not contagious. Can I afford to get the flu? When can anyone afford to get the flu?

I cannot answer for others, but I will ask about the vaccine. Then, I am not going to go ape crazy if there are not enough doses and the powers that be tell me to wait. I had my seasonal flu shot, and am drinking fluids like crazy to proactively stay healthy. Water is life.

I am not in a high risk group for flu complications. If I catch H1N1, I will send my immune suppressed daughter packing off to her grandparents for a week and have someone stock me up on cans of chicken soup or whatever so I can have my own private flu party. Been there, done that before.

I once spent New Years Eve in a basement apartment, while the entire extended family and my coworkers celebrated through New Year's Eve and Morning too in the room above my sick bed. That was fun... Not! My one redeeming memory of that was my daughter bringing me all these little doo das from the party. She was about five or so, and kept bringing me food, and party favors, and telling me about what people were doing. That is a cherished memory.

My potential flu situation now is unique in that my daughter is now quite a bit older, and I still have family support. If she were younger, and could not easily be separated from me, then I would change my tune and definitely seek aggressively to be vaccinated for H1N1. As it is now, I will keep asking, but will not get toady about it.

If my daughter gets swine flu, we will be extra careful, and take all possible care to treat it quickly. I also believe that she will also likely catch it early. One of the positive side affects of having vasculitis -- with all its freaky mystery symptoms -- is that patients develop an elevated awareness about their body and its symptoms as compared to people without a chronic illness.

For example, Meaghan logs her vitals twice a day when she takes her meds, so she will catch on if her fever begins to spike even a few points. I choose to believe this,

Catching flu symptoms early will help cure them quickly.

There is my tip for the day. Go ahead, write it down and tape it to your fridge. I will wait.

How do I avoid the swine flu?

I studied some CDC maps and flowcharts about disease vectors, but I will not bother you with an attempt at interpretation. The bottom line is this is a numbers game and you want to try to stay out of the line of fire. Translation: Stay away from sick people.

If everyone at work is sick and they refuse to go home, then you go home. If they stay home, then don't be a schmuck and go visit them. Let someone who is not immune suppressed take them their chicken soup.

I have always been an avid hand washer. The ABC Song is on my greatest hits list of all time favorites. It was the first song I sang to my newborn daughter, and I hum it when I wash my hands to follow the rule about proper hand washing. It takes time and soap to kill germs. It takes soapy time. So, sing the song and make lots of bubbles.

So, I have a head start. In my family, we wash hands, use the alcohol sanitizer, cough into our sleeve, we stay away from "booger people," and if we think we are sick, we stay home.

The experts declare that those same precautions I grew up with are still the same ones we all need to use now. I guess we must all take them just a bit more seriously this year, but hey, is that a bad thing? I practically accost strangers now when I see them fail to wash their hands. Unsanitary practices are becoming more socially taboo now, and I am not displeased.

So, eat right, exercise, drink lots of water, and follow the standard flu season precautions like hand washing and stay away from sick people.
That is as good as it gets folks.

If this outbreak convinces the booger people to wash their nasty hands, then I will be grateful... assuming civilization survives the outbreak. Do you think we will?

For more information, you should visit Flu.gov.

Flu.gov
"Flu.gov provides comprehensive government-wide information on pandemic influenza and avian influenza for the general public, health and emergency preparedness professionals, policy makers, government and business leaders, school systems, and local communities."
http://www.flu.gov/

Learn all about flu vaccines at the Center for Disease Control (CDC):

CDC - Seasonal Influenza (Flu) - Key Facts About Seasonal Flu Vaccine
http://www.cdc.gov/flu/protect/keyfacts.htm

For information about the International Flu situation, you can go here:

WHO - Global Atlas Of Infectious Diseases
"In a single electronic platform, the WHO’s Communicable Disease Global Atlas is bringing together for analysis and comparison standardized data and statistics for infectious diseases at country, regional, and global levels."
http://gamapserver.who.int/GlobalAtlas/home.asp

Stay safe everyone. And try not to freak out too much.

My final thought is this --

If you get sick, and you are not sure what to do, then ask your doctor.

Joseph Carpenter
Parent, daughter with CSS (DX March '08)

Central NM Chapter - Vasculitis Foundation
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org

"Lucy in the Sky With Diamonds" gives exclusive interview

2009-10-16T01:47:00.002-06:00

A friend sent me this article and I thought you might like to read it. I can't help but wonder if Lucy would have been diagnosed much earlier if she lived in the US and had access to our medical care system.

Carlene

Lucy, the girl with kaleidoscope eyes who inspired the Beatles... and her final, tragic battle.

Remember the song, "Lucy in the Sky With Diamonds". People always thought the Beatles wrote this song when they were all tripped out with LSD, but I had heard the story that it was from a picture that John Lennon's kid brought home from school. Interesting story about Lucy.

http://wwwdailymail.co.uk/health/chat/article-1217848/Lucy-girl-kaleidoscope-eyes-inspired-Beatles--final-tragic-battle.html

Here's the article, for your convenience:

Lucy, the girl with kaleidoscope eyes who inspired the Beatles... and her final, tragic battle

By Bonnie Estridge
Last updated at 9:43 PM on 03rd October 2009

The woman who opened the front door had taken a while to get there. Although Lucy Vodden was clearly frail beyond her years, her hair sparse and face puffy from medication, when she smiled it was easy to see the happy little girl that she once was - the little girl who ran around with Julian Lennon at nursery school.

Lucy was only 46 years old when she died last week from an infection that was a complication of lupus, the disease she had courageously battled for 15 years.

Housebound and extremely unwell, it happened after she had mustered up the energy to enjoy the first break she and her husband Ross, an environmental health officer, had taken in eight years.

Tragic: Lucy Vodden died last week aged 46

John Lennon in 1964, before he penned the famous hit inspired by Lucy

She gave her interview to The Mail on Sunday in a bid to publicise the autoimmune disease that, in her case, had taken so long to diagnose and so subsequently had been harder for doctors to treat.

Visibly exhausted, Lucy was determined to finish the interview so that others would learn from her experience the importance of early diagnosis.

She had made the news earlier this year when it was revealed that she was the 'Lucy' in John Lennon's classic song Lucy In The Sky With Diamonds.

His four-year-old son Julian had drawn a magical picture of his playmate surrounded by sparkling stars while at Heath House nursery school in Weybridge, Surrey, and when he told his father his picture's title, John was obviously inspired.

'I don't know why I called it that,' Julian said later, 'but I obviously had an affection for Lucy. I used to show Dad everything I'd built or painted at school and this one sparked off the idea for a song.'

And while Julian grew up to be a singer and songwriter and now lives in France, and Lucy trained as a special needs nursery teacher and worked with autistic children in Surbiton, they kept in touch.

Lucy, however, would endure a life dogged by years of unexplained ill health that cut short her career and robbed her of a chance to become a mother.

'I feel permanently exhausted,' she told me. 'Any activity - such as emptying the dishwasher - feels as if it has caused my temperature to shoot up. The steroids make me bloated and some days I am completely swollen. I usually don't get depressed and I keep coping but it's difficult because I've always cared about my appearance.

'I found it very hard having the spotlight on me recently. But if something good can come out of the publicity - if it can raise awareness so that any sufferers may get diagnosed earlier - then I'll be happy.'

For it was only five years ago that Lucy finally found out why she had been sick for so long, and was diagnosed with lupus.

Lupus is common and affects one in 1,000 people in the UK, mainly women between the ages of 15 and 50.

The condition often remains undiagnosed or is mistaken for ME (Chronic Fatigue Syndrome), rheumatoid arthritis or MS.

But delay in diagnosis is serious, as lupus can affect any part of the body and major organs can be damaged irreversibly before treatment has been started.

In lupus (the Latin word for wolf, from one of the tell-tale signs, a butterfly-shaped facial rash once thought to resemble a wolf's bite) the immune system attacks the body and can cause damage to the kidneys, brain, heart and lungs.

While incurable, if treated early there is a good chance that it will go into remission, lessening the risk of future complications.

After her diagnosis, Lucy remembered the day that a large bouquet of flowers arrived at her home in Surbiton. They were from Julian who, when he heard that his 'girl with kaleidoscope eyes' was ill, sent her garden centre gift vouchers as she loved growing plants and took much solace in her garden.

'It was lovely that Julian sent such a sweet note saying how sorry he was to hear I was ill. It really cheered me up,' she said, beaming at the memory.

'My illness has had an effect on my memory but I still vividly remember Kenwood, the Lennon house at St George's Hill in Weybridge where there was a lovely swimming pool.

Inspiration: The young Lucy

'As children, Julian and I ran around like mad things most of the time, he was full of fun and always smiling when we were at our nursery school.

'I remember him bringing an enormous teddy bear into class and then refusing to take it home - so I brought my panda in to keep it company.

'His mum Cynthia was stunning and I remember thinking how lovely her hair was,' she said, 'but I also remember being scared of John, although I have no idea why. Maybe it was because he was so famous.

'When The Beatles' Sergeant Pepper album came out I remember that I preferred the track Good Morning with the sound of the cockerel crowing to Lucy In The Sky With Diamonds. In fact, when I first saw that now famous picture - which is supposed to be worth about £250,000 - I thought I looked like an alien!

'I can't remember Julian drawing me. I don't know where the picture is now - I heard that a record company boss had it in his office but that may be just hearsay.

'The last time I saw Julian was when we were in our early 20s and he asked me, "So how's Lucy in the sky getting on?"'

As it turned out - not well. Lucy had started to suffer from a chronic inflammatory skin disorder, diagnosed as psoriasis.

'In 1994, two years before I married Ross, I developed itching, scaling and very painful skin,' she said. 'It has a genetic component and there was psoriasis on both sides of my family, yet I seemed to have it particularly badly.

'It is a chronic condition, which does relapse, but I was in and out of hospital. Eventually I had to give up my job, which was heartbreaking.'

Lucy then faced another dilemma. The immuno-suppressives needed to treat the psoriasis have been linked with birth defects. Because she and Ross had 'always dreamed of having children', Lucy chose not to take the drugs, instead bravely putting up with the psoriasis until suddenly, in 2001, she went into remission.

'I felt much better for the first time in years,' she said, 'and we wanted to start a family so I talked to a gynaecologist at my local hospital in Kingston upon Thames about having fertility treatment. He said my ovaries would need to be "fired up" with the hormone oestrogen due to my age and health problems.'

She was thrilled to become pregnant within months but miscarried before her first scan at 12 weeks.

'Afterwards I felt very strange, as though I had constant flu,' she sighed. 'My joints ached, I felt weak and tired all the time.

'I later learned that the worst thing you can do to someone with undiagnosed lupus is to give them oestrogen because the hormone can trigger the disease but, of course, at the time no one realised I had it.'

What Lucy was also unaware of was that she was suffering from antiphosopholipid syndrome, also known as Hughes syndrome, a condition that can be a complication of lupus.

Her symptoms prompted her GP to send her to Professor Graham Hughes, head of The London Lupus Centre (www.thelondonlupuscentre.co.uk), who gave her the diagnosis of lupus. It was Prof Hughes who had discovered the link between lupus and sticky blood syndrome in 1983.

He put Lucy on a course of steroids which worked incredibly quickly. 'I felt fantastic because the crippling tiredness disappeared,' she said.

'I could clean the house, I was bounding with energy - but unfortunately this new lease of life only lasted for four weeks and then I developed a rash on my face, my hair started falling out and my joints swelled.

'The steroids had been masking what was really going on in my body. I became a recluse because I didn't want people to see me looking so ill.'

Drawn together: Julian Lennon as a toddler with parents John and Cynthia

Lucy decided having children was now out of the question. Having Hughes syndrome meant she had an increased tendency to form clots in blood vessels (thromboses) and her blood would be far thicker and stickier than was recommended for a healthy pregnancy.

'This is why so many women with the disease have multiple miscarriages,' Lucy said.

'Prof Hughes told me that a number of lupus sufferers had no idea that they had the disease because their symptoms may have been in the early stages - as mine were - and had gone undiagnosed.' Lucy paused.

'In the end I felt it was too dangerous to try for children,' she said. 'Ross and I would have happily adopted or fostered but my health was far too fragile.'

Prof Hughes says: 'So much has changed in the treatment of lupus that the majority of patients are able to lead a perfectly normal, active life and live a normal lifespan.

'Lupus tends to arise in families where there are other autoimmune disorders, such as thyroid problems or coeliac disease, but the female immune system appears to be more susceptible than the male.

'In some patients lupus is so mild that no medication is needed and in others everyday anti-inflammatory drugs give control. For others, steroids are prescribed and nonsteroidal drugs are also proving effective in controlling the illness. But a few patients need anti-cancer [chemotherapy] drugs to manage their condition.'

Prof Hughes wants to raise awareness about lupus and says there are clinical pointers that could lead to an early diagnosis, using simple blood tests.

'If, say, a 20-year-old female presented with prolonged fatigue or what they might describe as prolonged glandular fever, then this could make us sufficiently suspicious to test for lupus.'

About one-in-five lupus patients also suffers from a tendency to excess blood clotting or Hughes syndrome. This can affect any organ, though the brain and, in pregnancy, the placenta are particularly vulnerable.

'Thus headaches ,especially migraine, memory problems and balance difficulties are common complaints,' says Prof Hughes.

'Hughes syndrome is the most common treatable cause of recurrent miscarriage. I would test any woman who has suffered two or more miscarriages: a simple blood test could prevent so much more tragedy.'

Although it was too late for Lucy to become a mother, Prof Hughes gives hope to other women.

'We have come a long way,' he says. 'The pregnancy success rate in Hughes syndrome has increased from 15 per cent 20 years ago, to more than 90 per cent today.'

And sufferers will always be so grateful to Lucy. She raised the profile of this disease - not for herself, but simply to help others.

Lucy in the sky: The now famous - and valuable - picture Julian Lennon painted of his nursery school playmate

Symptoms to watch out for

Lupus can be triggered by hormonal changes such as puberty, the Pill and pregnancy. Sunlight, trauma or a prolonged course of some medications may also activate it.
There may be a genetic link - lupus is often triggered in those where there is a family history of the disease and/or other immune system illnesses such as arthritis, MS and rheumatism.
Anyone with suspected lupus should have blood tests.
Symptoms include: joint/muscle aches and pains; a rash over the cheeks; extreme fatigue and weakness; rashes from sunlight; flu-like symptoms; headaches/ migraines; kidney problems; hair loss; swollen glands.
Hughes syndrome is characterised by recurrent miscarriage, headaches and a tendency to blood clots (eg, DVT).

www.hughes-syndrome.org.uk; www.lupusuk.org.uk; www.lupus.org.uk

October 2009 Chapter News

2009-10-16T00:23:00.007-06:00

OCTOBER 2009 Chapter Meeting News
18:00 Thursday, October 15, 2009

This newsletter available by Email, but is best viewed with formatting intact here:
http://nmvasculitis.blogspot.com/

In attendance and having fun:
Joseph Carpenter (caregiver)
Meaghan Carpenter (patient)

RSVP:
Karla Kollasch (patient) travelling tomorrow, may make it in November

Special mention:
Carlene Hobbs (friend of patient) for posting a meaningful article to the NMVasculitis Google Group.

That article is good enough I may repost it in this blog.
If you get a second copy, just know I am also sharing it with others.

WHERE WOULD YOU LIKE TO GO NEXT MONTH?

If you are thinking of coming to a monthly meeting, you can influence the choice about where we meet. Send Email to Joseph. Let me know what you like to do, and we can go there. Just so long as we increase the public awareness about vasculitis, and get to know each other, I am open to most suggestions.

**ooOO Yes, Master, we can go to Hawaii
and have a luau on a moonlit beach at night... OOoo**

What? Huh? Did you say something? :o)

HERE WE ARE AT CALIFORNIA PIZZA KITCHEN (CPK)

Meaghan is off and running with her second root beer and she plans to order the Four Cheese Ravioli, which is a new menu item: Ravioli with fine herbs, imported Asiago, Mascarpone, Ricotta and Parmesan cheeses sautéed in a creamy Pomodoro sauce with fresh basil. Add sautéed mushrooms. Menu She was wanting italian for her birthday dinner, so that fits.

I am going for the Miso Seafood Salad. This is a great combination of shredded Napa cabbage with fresh avocado, julienne cucumbers, daikon, edamame, carrots, red cabbage, green onions, cilantro, crispy rice noodles and crisp wontons tossed in a Miso dressing and topped with blue crab and shrimp. Also available with chilled-grilled chicken instead of seafood. Menu

Are you drooling yet? I nearly was after we ordered.

MOBILIZING THE STUDENT BODY

Earlier this month, Meaghan spoke to the faculty sponsor for Junior Civitan at her school about organizing awareness events. Just in general terms, but they are open and welcome the idea. Her school has a history of encouraging community involvement so this action is overdue.

I have long held the opinion that along with celebrities, students have perhaps the best chance at getting things done because they are connected to a larger community at school that most adults. Their friends represent an available work force that will usually work for food, and that is priceless.

If only there was a better way to encourage and motivate these young people to join the cause and inspire them to help spread the word. We have to learn how to be hip and spread VF Awareness like a viral YouTube video.

HALLOWEEN IDEA

Do you have kids? Grandkids? Would you consider putting them in a Vasculitis Foundation T-Shirt for Halloween trick or treat? That message would get seen by everyone in the neighborhood and might spark a few conversations by itself, even if you never talk to a soul.

Boo!

WISH YOU WERE HERE

This meeting was more like a dinner, but we did discuss awareness ideas.

We have these meetings every month with the commitment that if you build it, they will come. The model has proven true a few times when we were fortunate to make friends with a few patients and caregivers over the past year. This is similar for me to other time when I have organized non-profit social events in the past. The basic idea is just keep going at the same time so people know you are reliably going to be there. Once you become a calendar event, eventually some people will make it a regular thing.

In Albuquerque, this has proven true in the months when we did have attendees. We have had wonderfully productive meetings, if you define productivity as sharing knowledge about vasculitis and basically just the knowledge that even with a rare disease, you need never be totally alone.

I believe they found our previous location was unappealing, or perhaps less attractive geographically, so that is why we are moving the meeting around a bit to more popular spots in hopes of catching peoples attention. I have also been speaking to location managers about sponsoring incentives, but since our membership is so reticent to actively participate, or are busy with other things, or have transportation issues, then we are faced with the challenge of figuring out the right combination of location and other factors to create an atmosphere that will attract people to come out of hiding more often.

I just flashed on another idea. I should look up a list of retirement homes. The nurse will know the diagnosis of most of the residents, so I can discretely request if there are any vasculitis patients. Then if there are any, we can offer to come speak to them. So many ideas, so little of me to go around. Would you like to help? Please let me know.

RECRUITING FAMILY & FRIENDS

Going forward, I made another decision today. I have been hesitant to impose on close relationships for fear of burning them out, but now I feel I may have gotten it backwards. I do not need them to do anything except show up and be friendly. They are inclined to do that with each other anyway, so... As a means of gaining more good company at these meetings, I am beginning today to invite friends, family, and whoever I meet that shows any interest of any kind to attend our monthly meeting. That meeting is really mostly a social event after all. Not a medical seminar.

Though I hope we do have some of those in our future.
I know some docs who are willing to come to a meeting and speak to you,
if you let me know you will come.

The bottom line is to eat, drink and be merry. I want our organization to espouse the notion that especially with a rare disorder like vasculitis, people should be encouraged to enjoy life.

Though rare, there are others out there with vasculitis, and they do not congregate naturally.

Like you, they are shy to be early joiners, so by beefing the numbers with family, we might also attract more diagnosed members to our "chapter family." This chapter was founded by Karla and myself on the notion that New Mexico vasculitis patients and their families might be able to offer each other needed support. So, from now on families are invited and encouraged to attend.

If you plan to bring a large group, let me know so I can plan accordingly.

As a way of putting thoughts into action, I spoke to my brother today. He has six kids. It is like having a smallish army at your disposal. I imagine outfitting all of them with VF TShirts and going places. That is without a doubt going to attract some attention. I think we will be giving custom designed Vasculitis T-Shirts as gifts this year. Hmmm... Reminder to self. Self, double-check with VF office about copyright use on VF logos, etc.

HEY, WHAT ABOUT THAT GOOGLE GROUP?

I have reserved membership in that group to only NM membership. The philosophy behind that was to encourage you to be open with your stories because you would know that only local members would see those Email messages. However, that is not how it is working out. You guys do not post much, nor do you reply to posts.

Soooo... I will sit on this for a bit, but I am considering opening that group up to regional or even national membership, so long as the person applying is confirmed as a patient of caregiver. If I do that, then we will see more activity in there for sure, and perhaps you will be encouraged to participate more yourselves. Any responses? Ideas? I am not down on anyone here. I just want to stir the pot a bit and get things moving.

I know you have things to say. You are human beings with intelligence and emotions. Share what you know, and who you are. You are not alone, and others will benefit from your experiences.

Hint: Please share your own stories and ideas so I can include them
with monthly chapter updates. Send me Email!
You can post yourself, or at your request,
or I can quote you anonymously.
Just please let us know how you are doing.

MOVING THE MEETINGS

Now that we are moving the meetings around to do more fun things, I hope you will join us. Keep an eye on the Meetings page, because the meeting locations have become a moving target. We are not hard to find, but you will have to check the website to know for sure where we are going each month.

For example, I watched a movie yesterday called Nick & Nora's Infinite Playlist. One of the through lines of the story showed this young couple and their friends in search of a popular band that was going to play in a mystery location. Part of the suspense of the movie was watching them figure out where to go. I do not want our chapter meetings to be hard to find, or to involve wild goose chases, but the settings also should not be boring. Miniature Golf anyone? How about a picnic? Talk to me and let me know what you would like to do.

We are about ready to leave CPK. Meaghan and I loved our dinners. They were both tasty and filling. We also went all out and ordered dessert. We shared a single helping of Chocolate Soufflé Cake. A Belgian chocolate soufflé cake, served warm with CPK's triple-thick hot fudge on vanilla bean sauce. Also available à la Haagen-Dazs. Menu

This was Meaghan's birthday dinner, so we went full out with a nice dinner, sodas and also dessert. That was not free.

People should keep in mind that at an average meeting, we sometimes eat a meal, and sometimes just have coffee and perhaps dessert. It does not have to be expensive. I always like to choose places where people in attendance can order just dessert, or a full dinner. The menu here is as varies as most places. It is not the cheapest, but it is my intention that cost should not become an issue.

Come and drink water if you like. I will keep the wait person happy
with my innate charm and Meaghan with her good looks.

When considering CPK, one has to consider the time of day. CPK is so busy now that it is possible other people might actually come to our meeting and not known how to find us.

GETTING ATTENTION

We have the VF logo displayed, but unless someone knows who or what to look for, it is not so obvious what we are about. [I am suddenly imagining using a helium tank to take better advantage of the VF balloons by actually inflating them so they float. Prettiful!]

The entire point of doing this is to see and also to be seen by others, so I will have to work up some kind of sign that stands out the table, or something to draw more attention to our meetings without becoming carnivalesque.

T-SHIRTS FOR AWARENESS IDEAS

Meaghan has a certain slogan that she wants to put on a T-Shirt. I do not want to share it now, because she plans to go to the mall have have a shirt made. I will share a photo later.

This got me to thinking... again. This may sound obvious, but I recall conversations with "several unnamed people" who agree that the Vasculitis Foundation T-shirts are nice, but kind of boring. they appeal to patients, but not to the general public. They are full of the message, but do not have the aesthetic appeal that will motivate people to want to wear them around town.

I for one wear a rather large and very tall size. I am seven feet tall. The point is none of the VF shirts will ever fit me, so I am destined to custom order one or make one, any way. Why not something really cool and original? Maybe I will emulate my daughter, and discover some expression that shares a positive spin, or in her case an ironic one, about who I am in relation to vasculitis.

In my minds eye, I can see these T-shirts sold at any department store. I have seen the result of consignment deals brokered on behalf of the American Heart Association and anyone with eyes and a credit card knows that Breast Cancer is certainly not pulling any punches marketing those pink ribbons all over the place. Wherever they go, we should follow, because they are everywhere. So too should we be.

Someone at the national level should broker a similar mutual benefit deal where the corporate partners are provided inherent incentives to carry the distribution costs of a given awareness program in exchange for good guy visibility, and a slice of some profit. Make is sale-worthy, and they will go for it. Thinking beyond T-Shirts, the designs have to be cool enough to sell for anything good to happen.

Consequently, I think the collective WE who make up the inside world of vasculitis patients and caregivers should create or solicit cool designs for VF T-shirts and other items that teenagers, and others, will want to buy and wear regardless of their personal affiliation with vasculitis. Red is a great base color, but lets not be limited. Plus, "cause" shirts, posters, buttons, stickers, are very popular with all ages. People like to wear the cause and be seen caring. Who cares how ironic it all is, so long as the message is spread and the dollars end up going to research?

Perhaps a national or international T-shirt design contest would be fun? Some Email and a few creative web pages on would be cheap to manage and go a long way towards starting this thing up. I think will send this to the VF head office and to the board of directors as a suggestion. Maybe they already have a plan? Who knows?

SIDEBAR ABOUT A DOMAIN NAME CURRENTLY TRAPPED IN NORWAY

Speaking of VF, has anyone tried to politely reach the lessor of the domain VF.ORG to see if it might be available? It is currently registered to Karl Oskar in Narvik, Norway but there is no website published. Maybe it is just sitting there unused and could be coaxed into service for the VF awareness efforts?

Whois contact data:
Admin ID:MONIKER1788507
Admin Name:Karl-Oskar
Admin Organization:Filter Visual DA
Admin Street1:Dronningensgate 29
Admin Street2:co/Karl-Oskar Fosshaug
Admin Street3:
Admin City:Narvik
Admin State/Province:Narvik
Admin Postal Code:NO-8514
Admin Country:NO
Admin Phone:+47.90123466
Admin Phone Ext.:
Admin FAX:
Admin FAX Ext.:
Admin *******@rl-oskar.no

TWITTER IS COMING SOON TO A WEB SITE NEAR YOU

I use Twitter to update my coaching web site, and it is great for posting last minute news. It is something I use sparingly, but what it really great about it is I do not need to be anywhere near a computer to post an update. I can simply text that in, and it gets displayed in the site. So, I think I will add that to the NMVasculitis.org site as well. Should be useful when we are having an event.

If you start participating actively,
I might even let you post to Twitter as well...
Can you be bribed with Twitter tweets?
Come on, can you?

I am reminding myself now to update the Facebook wall page for this chapter.

STARTING A DIALOGUE SHOULD BE THE GOAL OF ANY AWARENESS CAMPAIGN

Totally stuck on this shirts idea... I suddenly envision a shirt with a large copy of the triple blood cell VF logo shown alone in a with no text at all on the front of a shirt. ON the back is some pertinent catchy slogan. Then print the VF website address, phone number, whatever, in smaller print maybe on a pocket or maybe just in subtext below the slogan on the back. That should be legible, but still relatively small so that when someone comes closer to read that smaller text, they are drawn into initiating a conversation with the wearer of the shirt, hoodie, etc..

The slogans could vary, like various patient inspired themes related to Prednisone Awareness, Overcoming Pain, Positive Outlook, Funny jokes about side effects, etc. Maybe even pithy quotes of words used by the patients themselves to describe their condition. Preferably the positive or funny sayings... :o) Not the “wish you were here in vasculitis hell” variety.

Though, I am suddenly thinking, “I walked a mile with vasculitis, and my peripheral neuropathy is killing me.” Corny... but I bet you can do better... I am waiting.... Email me.

For example, Meaghan's blog is subtitled: "Welcome to the Predni-Zone". I think that would be great on a T-Shirt. People would natural stop and ask what it means, and that conversation would lead to increased awareness. Others patients and caregivers might have similar slogan-like sayings they attribute to their illness.

Speaking of ownership, what about "I PWN Churg-Strauss". Pronounced "POWNE" This is a take on the gamer slang, "PWN = Power Own" which means to dominate your opponent in the extreme sense. Young people who are familiar with the term PWN would wonder if [insert name of your condition here] was a new computer game, and the questions would follow. The T-Shirt, poster, mug, bumber sticker, etc, would be cool enough to be discovered adorning the hippest people at the swankiest places, and all that would start up awareness conversations.

How to do this in an affordable way? Consider partnering with Cafe Press the online promotions company. They make the stuff as it is ordered and a percentage goes to the sponsoring organization. So, less percentage, but a higher volume. To main tain non-profit status, this must be done at the national level, but it is just possible that if a chapter has their own successful design, then perhaps a bit of the proceeds could also be earmarked to offset chapter or regional awareness event costs. Not just because, but when there is an event, it would be easier to request a budget if you know your chapter is also producing income. Hmmm....

Hey, lookee here:
The VF of Canada has it going on already. I also see representation from BechetsCanada.com and CNSVF (Central Nervous System Vasculitis Foundation). They are not standing still. Neither should we.

Hello Vasculitis Foundation (VF)?
Hello Churg-Strauss Syndrome Association (CSSA)?
Hello others out there?

Another thought would be to make the artwork available and allow patients and their families to exercise their creativity by designing their own T-Shirts and having them made, like Meaghan plans to, at the local T-Shirt company. This method is less controllable, but it is also more personal and offloads the cost of printing and distribution to the grass roots level. By partnering that effort with a T-shirt contest, people would then be encouraged to submit their creations for consideration for some award, like perhaps free registration to the next VF Symposium in 2010? Or the one after that in 2012? Whatever... Just do something to keep things going.

One final thought as we are actually standing up to leave CPK.

If twenty people showed up at this monthly meeting and ordered a drink and talked for an hour, it hurts nobody and helps the participants.

Come by the next chapter meeting and say hello. Better yet, the next time you go to the doctor, find out who the others are and invite them to come with you.

Joseph Carpenter
joseph@nmvasculitis.org
Parent, daughter with CSS (DX March '08)

Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.

October 2009 Meeting at California Pizza Kitchen

2009-10-14T22:35:00.002-06:00

This month is a double header.

Meaghan's birthday is October 14th, and the monthly VF meeting is October 15th. So, we are going to CPK to celebrate both events.

OCTOBER 2009

The October 2009 meeting of the NM chapter of the Vasculitis Foundation will be on October 15th.

This month, we are going to California Pizza Kitchen, in the Uptown Mall.

California Pizza Kitchen Store 295
2241 Q St
Albuquerque, NM 87110-2279
(505) 883-3005
www.cpk.com
MAP

Installing a Port-a-cath for chemotherapy infusion

2009-09-22T13:30:00.005-06:00

My daughter, Meaghan, is at the University of New Mexico Outpatient Treatment Center (OTC) today for her first dose of two for the second round infusions of Rituximab (Rituxan).

Rituxan Official FDA information, side effects and uses.
http://www.drugs.com/pro/rituxan.html

This Rituxan medication is the next step in efforts to achieve remission with her Churg-Strauss Syndrom (CSS) vasculitis. She was taking Methotrexate and Prednisone for the past eighteen months with some success at controlling symptoms, but no remission. She flared last March, and started Rituxan in May. Since then, she has been able to taper completely off the Methotrexate, and lower her Prednisone dosage.

The numerous negative side effects associated with both Methotrexate and Prednisone make lower dosages a significant improvement. The documented side effects of Rituxan are neligible compared to Methotrexate and Prednisone, so we hope this will not only control her CSS, but also improve her long term prognosis by reducing the risks of other diseases related to side effects.

Because she has become a long-term infusion patient, her doctor recommends she have a port-a-cath installed. This will make bloodwork and other infusions requiring a vein puncture easier and safer.

Today was a case in point. For whatever reason, her veins were not cooperative, and it took several attempts before the nurses gave up, and eventually a paramedic was called in to find a vein with the assistance of an ultrasonic imaging scanner. This process of enduring nine or tens IV attempts delayed her infusion by almost four hours, and caused her a lot of suffering.

The doctors talk about this "port" as if it were no big deal. It is fairly common and they see few incidents of complications. They described to her what those complications can be. My research seems to indicate that the rate of complications is something like 1.04/1000 (0.01%).

The complications range from a minor site infection that is treatable, to blockage of the port. Certain more serious complications require removal of the port. These are all rare, and the more serious are the most rare.

That information correlates with a summary web page I found on this topic that I think details the entire issue pretty well according to what the doctors tell me and from what I have been able to research myself:

Portacath Insertion
http://www.sir.net.au/portacath_pi.html

After researching this fairly comprehensively, it seems the Port-a-Cath method of installing a permanent catheter is cheaper and safer than most other choices.

This is not really "permanent" in the traditional usage of the word. When she is successfully in remission, then the Port-a-Cath will be removed.

Big news, but it will make blood draws easier, and it will certainly be more comfortable than the peripheral IV method of administering infusion therapy. The other benefit to this will be that emergency medical personnel will have an easy method for administering medications should she ever have an neeed for urgent care.

So it seems this Port-a-Cath will be more efficient and more economical in the long run. Plus this promises to be more comfortable for the patient, who in this case is my daughter. I am all for sparing her additional pain and suffering.

: Joseph

To other vasculitis patients:
So, what's your story? Let me know how you are doing. You can send me Email.

Joseph W. Carpenter
Email

September Chapter Meeting Report

2009-09-17T19:17:00.003-06:00

Location:

McAlister's Deli
2200-A Louisiana Boulevard, NE
    Albuquerque NM 87110

Attendees:
Joseph Carpenter
Meaghan Carpenter

I will keep this short because Meaghan is not feeling well.

We enjoyed the change of pace here at McAllisters. They have booths or chairs and free wireless. It is also not too busy in the evenings, so this is a good place.

The menu is varied enough that someone could have a full dinner, soup, sandwich, or just a cup of coffee or tea. The point is I like to pick places that have a range of price options.

The Uptown Mall is a bit more upscale than some other places, but I will keep looking in this area for next months meeting. I like that is is centrally located. While The Albuquerque Grill was technically more centrally located if you look at the absolute center of the city, this uptown mall area has three malls and is well known by everyone who lives in the area.

We will be exploring other venues and also we will be going to social events. Like movies, the zoo, etc. My thought there is any active members will share in the decision about where we go each month. We will wear VF gear and just keep spreading the word about vasculitis. Just like we do just about every day.

I wear the VF pin every day and people ask me about that, which leads to a conversation about vasculitis. Not sure how widely that spreads the news, but I figure every bit helps.

I also spoke to some booth bolders at the NM State Fair yesterday, and learned who the significant people are to talk to when we get ready to try that. This year I just could not see manning a booth by myself for two weeks. Plus there is a booth fee, and we have no budget. But that is on the list for the future.

Perhaps I could trade time for space in a deal where we man someone else's booth for part of the time, and in return they allow us to put VF information on their table. I will speak to American Red Cross, etc, about that idea for future events.

Anyway, we are off to look at the bookstore. See you next month!

:Joseph W. Carpenter
Chapter Cook and Dish Washer in Chief

September Chapter Meeting at McAllisters (uptown)

2009-09-16T17:24:00.004-06:00

Hello all you (hopefully) happy campers,

We have our monthly meeting of the NM chapter of the Vasculitis Foundation tomorrow night, September 17th at 6PM.

This month is a little different. We are going to try some new places and see what works best.

This month, we are trying out McAllisters Deli, in the Uptown Mall.

McAlister's Deli - Locations
"2200-A Louisiana Boulevard, NE
Albuquerque NM 87110
t: 505-884-5004
f: 505-884-5005
WiFi Enabled"
http://www.mcalistersdeli.com/locations/zipcode.asp

This is actually a little cheaper than the hotel restaurant we have been going to. It is also busier, so it is harder to reserve tables without confirmed number in the party.

Lets hope we have room.

See you all tomorrow night!

Joseph Carpenter
Email
Parent, daughter with CSS (DX March '08)

Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Or, call Joseph Carpenter at (505) 255-1366 for more information.