Wednesday, December 28, 2011
UNC Kidney Center Podcast: "Being there for Your Friend with Vasculitis""
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:
Thursday, December 15, 2011
Happy Holidays!
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.
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
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
Wednesday, November 30, 2011
A better health care system now within reach | Physicians for a National Health Program
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
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
Thursday, November 17, 2011
Chapter Meeting Thursday, Nov 17th
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
Tuesday, August 9, 2011
Biologics and Systemic Vasculitis - YouTube
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
Biologics and Systemic Vasculitis - YouTube
Saturday, July 30, 2011
Eat for Health: Books by Dr Joel Fuhrman
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
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
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
Monday, July 25, 2011
Movie Review: Fat, Sick & Nearly Dead
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.
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
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.
How many of you are willing to challenge yourself to a personal health reboot? Let me know and we can support one another.
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.
Monday, July 18, 2011
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.
Monday, June 27, 2011
Recycle Old Electronics and Make Money for Vasculitis
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
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
Wednesday, June 22, 2011
New section on NMVascultis Education page for Syndicated Medical News
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
Syndicated Medical News
https://sites.google.com/site/nmvasculitis/Home/support/education#TOC-Syndicated-Medical-News
Thursday, June 16, 2011
June Meeting tonight - agenda is ideas for the VF website
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
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."
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."
Monday, February 14, 2011
February 2011 Vasculitis meeting moved to Friday 2/18
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!
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!
Thursday, February 10, 2011
Baseball Coach donates kidney to player with ANCA Vasculitis
Wake Forest Coach Donates Kidney To Player
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:
Wednesday, January 19, 2011
January Meeting RSVP
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
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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Sunday, January 9, 2011
January Drifts Along, next meeting in 11 days
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.
See you later alligators!
: Joseph Carpenter
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
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