Monday, December 22, 2008

CNMVF Chapter Meetings on 3rd Thursday of every month

Set your calendars folks.

I am setting the CNMVF Chapter meetings up for every month on the 3rd Thursday of every month. This will give us a predicable schedule to follow all year long.

The next get together following this announcement will be on January 15th, 2009.

I have a standing arrangement with the Albuquerque Grill. It is not quite formal, because our group is small. As we get bigger, they are ready to accommodate our future needs.

So, please come one come all... This is about getting to know each other better, offering mutual support, and learning more about the vasculitis condition.

The Albuquerque Grill is located on Rio Grande Blvd, just off Interstate 40. I chose it because it is conveniently located, offers a favorably diverse menu. If you know of another place, bring your ideas to the meeting and all good notions will be considered. The restaurant is attached to the Best Western Rio Grande Inn:

Best Western Rio Grande Inn
1015 Rio Grande Blvd. NW
Albuquerque, NM 87104
Tel: 505-843-9500 | Fax: 505-843-9238
Website: http://www.riograndeinn.com/restaurant.html

Menus: Downloadable PDF files
Dinner (329Kb)

Dress Code: Casual

You can see the door in the photo. Parking is right there in front, or you can also park on the side. There is a hotel layout map online here.

Please DO RSVP to Joseph Carpenter. See the CNMVF contact page for more info on how to do that. I like Email very much, but you can also call my home office and leave a message. Whatever works best for you.

Hope to see old friends and meet some new ones!

: Joseph Carpenter
Email
Albuquerque, NM
CSS Parent, Daughter DX March '08
Celebrating seven months without symptoms!
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org

AARDA Upcoming Events in 2009

Since vasculitis is an AA disease, here are some opporutnities for learning that are coming up in 2009. If I can mange to go, it might be to Scotsdale in January, or San Diego in February. If I do, you will hear more about it from me in this blog.

They spread these events around the country pretty good, so maybe more of us can manage to attend. If you do, please send me a letter and some photos. I would like to know, and it might also be nice to share what you learn with others.

Thanks!

: Joseph

:: American Autoimmune Related Diseases Association, Inc ::
"Upcoming Events"
http://www.aarda.org/upcoming_events.php


Listed below are upcoming events that the American Autoimmune Related Diseases Association (AARDA) either sponsors or cosponsors. AARDA sponsors scientific meetings in order to bring together scientists from many different medical specialties around the broad topic of autoimmunity. AARDA does this to increase cross fertilization of scientific knowledge about autoimmunity in the research community. Public forums are presented as a method of educating the public about autoimmune diseases in general.

Also listed are scientific meetings that may be of interest to the autoimmune scientific community but are not sponsored or supported by AARDA.
To view past events in which AARDA has participated, please click the "Past Events" button below.
Date Event
January 17, 2009

PUBLIC FORUM--What Every American Needs to Know about Autoimmune Disease, Scottsdale, AZ. From 1:00- 4:00 PM at the Civic Center Library, Civic Center Auditorium 3839 N. Drinkwater Blvd., Scottsdale. Open to the general public, patients and health professionals. Complimentary registration, but reservations are required. Contact AARDA at 586-776-3900. Featured speakers include Noel R. Rose, M.D., Ph.D.,director, Johns Hopkins University Center for Autoimmune Disease Research; Stephen Balch, M.D., medical director, Lupus Treatment Center, The Center for Specialty Medicine in Atlanta; Robert Phillips, Ph.D., director, Center for Coping in suburban New York City and Virginia Ladd, president and executive director AARDA. Seats are limited so we encourage you to make your reservation today by calling AARDA at 586-776-3900 or by email to aarda@aarda.org

Jan 29-31, 2009

7th International Medinterna Meeting "Controversies in Autoimmune Diseases" in Porto. For more information contact the Secretariat at assmedinterna@hotmail.com

February 13, 2009

PUBLIC FORUM--What Every American Needs to Know about Autoimmune Disease, in San Diego, California. Open to the general public, patients and health professionals. The FREE public forum will be held on Saturday, February 13, from 1:00-4:00pm at the Holiday Inn-San Diego-Bayside at 4875 North Harbor Drive, in San Diego. Reservations are required. Call the AARDA office at 586-776-3900 or send an email to aarda@aarda.org to reserve your seat. More information to come.

April 26, 2009

PUBLIC FORUM--What Every American Needs to Know about Autoimmune Disease, in Scranton, Pennsylvania. Open to the general public, patients and health professionals. More information to come.

Wednesday, December 17, 2008

Stress and Relativity

Something happened today that highlights a little window into something we all have to deal with. Perhaps it is significant that that holidays are known for increasing this particular health issue: Stress.

Tonight, just before I left work for home, some person drove up behind my truck, jumped out, and stole an item from the back of my truck. Then they drove away before they could be properly identified. It was an item that can be replaced, but it was still...

Well, in medical terms, this is what you call a stress event. A stressor. A bit of annoying little bit of phlegm on an other wise clear day.

It annoyed me. A lot.

I called a family member, who listened to my emotionally laden report. I really just called them to tell them I want to have better lights installed on the building to discourage such thieves and hoodlums from revisiting this "Stress Event" on anyone else. I was angry and thus not entirely rational... I just wanted to vent...

Instead, I got reasoned and rationed and suggested... The well-intentioned advice was good advice, and I was responding to that just fine. It was even helpful really...

Then, the tide turned and I got to listen further as I was told how I should keep my stress away from my daughter. I was befuddled and asked why, to which I was told, because, *DUH implied*, she has vasculitis, and therefore has enough stress to deal with.

That was worse than the burglary. I was also then reminded about one or two of my own recent failings, because I do not have a perfect temper. I am her father and she is a sixteen year old girl... so sometimes I get upset with my daughter when she does annoying things. Just as I annoy her sometimes. I suppose I should be shot, or something, but instead we just deal with it.

In response, I got the impression I was expected to accept this little drubbing and say something humble like, "You are right, I am a jerk, I will endeavor to be more perfect from now on, and try to put things in perspective... " Which of course was not said, but that is how I felt. The trick is, that perspective is exactly why that advice was inappropriate. Not that my family member could know that, but still..

Instead of blithely confessing my sins, I tried to explain perspective... I try to suggest that coping with vasculitis and the stressful event of having something stolen from my truck are not remotely related... but in response I was treated to an even more patronizing accusation of denial, then some kindly insistence that they are of course related. Apparently all stress is related... who knew? [Sarcasm intentional.]

It would seem that to some people, there is this concept of "Ye Old Bucket O' Stress," which apparently has a finite capacity. Once filled, the bucket can hold no more and then terrible things must surely happen.

This family member has dealt with lots of stress indirectly and directly, and has always been there for just about everyone in my family. I aspire to be as useful myself. So, there is no fault here, but the approach we take is completely different.

Instead of holding onto the stress, and counting it, and taking it out every night and counting it again... instead I choose to count blessings. I figure out what is possible to control, and I take control of that thing. The things I cannot control, I let go. I just do not think about them more than is absolutely necessary.

It is precisely this attitude, which explains why when my daughter was diagnosed, I was calm, and replied to the doctor, "So, then what can we do?" Then we proceeded to do those things. My daughter is a product of my teachings, and her attitude has always been to overcome all challenges. Treating vasculitis is a long hard road, and fraught with pitfalls, but we persevere with hope and courage. We do not dwell on thoughts of weakness.

When my truck gets burgled, I have no such calm. To me, the rest has become normal, and this burglary is the notable stressful event.

Everything else in my life, and most notably vasculitis, has given my daughter and I a new baseline. A baseline that most people cannot comprehend who do not have a rare incurable illness in the immediate household.

Most people have no idea what they can handle until they are tested. And when you have a rare incurable condition, as my daughter has, and which I also feel like I have... then it becomes necessary to live life by a different set of rules.

No counting stress. That is one of the new rules.

Putting stress at the forefront of our mind, would be dwelling on the negative. It would be self-defeating. Instead of saying, "Poor her, she has vasculitis, let us insulate her and protect her and keep all possible harm from her," I say let me arm her to the teeth with coping skills so she can take on all challenges. She does not need to be made weaker, she needs to be made stronger. When the going gets tough... as the saying goes.

It is not a big deal to let emotions fly when someone steals a replaceable item from your truck, but you have to accept the big stuff; you have to accept all the horrible side effects of Prednisone and how they screw with your entire life, and the every day alertness for any sign of a flare. Since vasculitis is systemic, it can happen anywhere, anytime, with little or no warning... so that is very stressful. But is it not a stress event.

Some days are better or worse than others, the in the big picture, dealing with vasculitis is normal to us now. If there is a "Ye Old Bucket O' Stress" then we must have traded it in for the bottomless Bag of Holding version, because dealing with medications, doctors appointments, fatigue, and side effects has become the normal way of being for her, and indirectly, for me also. And yet, I still get provoked by the ordinary things. It is a matter of perspective.

So, there is no rule that says when you have so much else to deal with that you must then take everything else in stride. In my opinion, the "Ye Old Bucket O' Stress" concept must come from the TwilightZone, because both stress and the ability to cope are expandable without limit.

Human beings are capable of adjusting to just about anything, and those who have not walked a mile... just have no clue.

Following my signature is a little article about stress. One of many such that we have read and absorbed this year, because coping with stress is important, it is just not something you need rubbed in your face. So this will be a brief reminder to others out there there that no matter how bad it gets, you can always do something about it.

: Joseph Carpenter
Email
Albuquerque, NM
CSS Parent, Daughter DX March '08 - Celebrating seven months without vasculitis symptoms!
Central NM Chapter - Vasculitis Foundation - http://www.nmvasculitis.org


InteliHealth:
"Coping With Stress

Stress is a part of life. From being stuck in traffic to falling behind on paying bills, too much stress can wreak havoc on our bodies. If you have a chronic illness, even small tasks, such as making dinner or picking up the children from school, can become overwhelming. Research on how stress causes medical illness is still in its early phases. We do know though that stress can cause physical symptoms, and may increase the rate of progression of a disease. Here are some ways to reduce your stress.

Adjust your attitude. According to researchers, you can better cope with stress by focusing on three ideas: challenge, control and commitment.

  • Try to interpret stressful situations as challenges, not as threats.
  • Determine what you can control; sometimes the only thing you will be able to control in a stressful situation is the way you respond, but that’s a start.
  • Make a commitment to be good to yourself by eating healthfully, thinking positively and maintaining relationships with people you care about.

Learn to problem solve. The key, say experts, is to think through difficult situations systematically.

  • Break problems into smaller pieces to make them less overwhelming
  • Focus on problems that really need your attention and leave the rest
  • Know your limits
  • Learn to be flexible
  • Be realistic about your choices

Communicate. Keeping your troubles inside only adds to stress. Find someone safe to talk to about your worries; it will reduce stress and help you deal with practical problems. If you have a chronic medical condition, participate in a support group.

Exercise. Regular exercise reduces stress. It helps protect the cardiovascular and immune systems from the consequences of stressful events. Whether it’s swimming, walking or another form of exercise, find time to do the activity on a regular basis.

Take control of your diet and your sleep. It’s hard to do, but if you eat a well-balanced, nutritious diet and get a good night’s sleep, you’ll have more energy to cope with stress. And if you’re tired and cranky, you’ll be more susceptible to stress-related ailments.

Do something for others. Volunteering for a worthy cause can be a great experience. It also can help you forget about your own problems and increase your self-esteem."
http://www.intelihealth.com/IH/ihtIH/WSIHW000/8271/21849/244360.html?d=dmtContent

Friday, December 12, 2008

ASSIST Vasculitis Study Podcast (updated info)

[I received an updated invitation for you from Delesha Miller Carpenter regarding the ASSIST Study. They have added a multimedia podcast that describes the study quite nicely and answers most obvious questions in a rather friendly way. -- Joseph]

from Delesha Miller Carpenter CLICKHERE@email.unc.edu>
date Fri, Dec 12, 2008 at 9:41 AM
subject Vasculitis study podcast

Hello and happy holidays,

I am writing to you because you are listed as a Vasculitis Foundation contact and I wanted to let you know that that I have posted a podcast about the ASSIST Study. Many of you are already participants (thank you!), so if you know of other people living with vasculitis that might be interested in the study, could you please direct them to this link:

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

Currently, over 200 people have enrolled in the study and I am hoping to recruit about 85 more vasculitis patients.

Here is more information about the study in case some people cannot access the podcast:

The Accessing Social Support in Symptom Treatment (ASSIST) Study is recruiting persons living with vasculitis to understand how support from different people (spouse/partner, family member, friend, doctor) affects one’s ability to cope and effectively manage vasculitis. This is one of the first studies to investigate the effects of different supportive relationships for vasculitis patients.

To be eligible for the study, patients must have a diagnosis of vasculitis, currently be taking at least one medication to treat vasculitis, be older than 18 years of age, and have access to a computer with internet access. Participants will be asked to complete two confidential online surveys. The first survey should take no longer than 1 hour to complete, while the second survey takes approximately 30 minutes to complete. The surveys ask about how different relationships affect how patients cope with and manage treatment for vasculitis, including medication side effects.

Participants will receive a $10 gift card after completing the second survey.

If you have any questions, please email Delesha Carpenter, MSPH, at dlmiCLICKHERE@email.unc.edu. I can also be reached at 919-966-2561 ext. 302 or toll-free at: 1-866-462-9371.

Thanks so much,

Delesha Carpenter


Project Director
ASSIST and PAIRS Study
3300 Thurston Bowles CB#7280
University of North Carolina
Chapel Hill, NC 27599
Phone: 919-843-9256

Thursday, December 11, 2008

I missed the Chapter Meeting

Hello all,

I missed the meeting tonight. My daughter had car trouble, and I went to her aid. We just got home a few minutes ago.

Please let me know if you went. My hope is that several people went and this worked out alright. I am dying to know.

I had no RSVPs so nobody to call. I did not have the phone number for the restaurant, so no way to send word. I fretted the entire time, but there was nothing to be done. I had to take care of my girl.

I called the restaurant when I got home and they confirmed that at least one person did attend.

Will whomever did attend please send me an Email or call to let me know? Then at least I know who to extend my regrets to, and perhaps make it up to you by buying you lunch sometime?

Otherwise, I am going to work out some kind of RSVP list, so that I can at least let someone else know. And, I will put the restaurant phone number in my phone so I have that with me also.

This was such a freak thing, I do not expect it to happen again, but it never hurts to be prepared anyway.

My apologies to anyone who was put out, and when we meet in in January, I will make sure the bases are covered, even if the unexpected happens.

Saturday, December 6, 2008

CNMVF Chapter Meeting on December 11 at 6PM

If this announcement looks familiar, well it should. It is pretty much the same as last month. I originally posted this on 11/24/2008, but I am going to move up the date so you all see it at the top of the list.

I made a reservation at the Albuquerque Grill for Thursday, December 11th at 6PM.

Perhaps next year we can arrange a Christmas party, but this chapter is still growing. Still, bring your festive cheer with you. This is about getting to know each other better, offering mutual support, and learning more about the vasculitis condition.

The Albuquerque Grill is located on Rio Grande Blvd, just off Interstate 40. I chose it because it is conveniently located, offers a favorably diverse menu. If you know of another place, bring your ideas to the meeting and all good notions will be considered. The restaurant is attached to the Best Western Rio Grande Inn:

Best Western Rio Grande Inn
1015 Rio Grande Blvd. NW
Albuquerque, NM 87104
Tel: 505-843-9500 | Fax: 505-843-9238
Website: http://www.riograndeinn.com/restaurant.html

Menus: Downloadable PDF files
Dinner (329Kb)

Dress Code: Casual

You can see the door in the photo. Parking is right there in front, or you can also park on the side. There is a hotel layout map online here.

Please RSVP to Joseph Carpenter. See the CNMVF contact page for more info on how to do that.

Hope to see old freinds and new faces!

: Joseph Carpenter
Email
Albuquerque, NM
CSS Parent, Daughter DX March '08
Celebrating seven months without symptoms!
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org

Happy Thanksgiving! (Belated)

I was reminded on Thanksgiving day, that no matter what else is going on, I have a lot to be thankful for. And still I struggled with that for a few days. Then last week, I went to the Emergency Room with adbominal pain. It turned out that my appendix was inflamed and surgery was required.

Now as I sit here convalescing over that, I was reminded that more than anything, I am thankful for my family.

I am thankful for my daughter, who came to my aid with a general willingness to help.
I am thankful for my father, who gave up sleep and eventually his own bed where I slept the first two nights away from the hospital.
I am thankful for my brother, who is a nurse, and who was on call when all this happened. He made sure I was taken care of, as he would with any of his patients, but when you know your bro is there looking out for you, it makes a difference.
I am thankful for my sister, who came to sit with me during the long and sleepy day after surgery. She kept my daugher company, and her presence was a constant reminder that I am never alone in this world so long as I have my family.
I am thankful generally for all of my family, whose well wishes came to me via the telephone and by word of mouth through those who were visiting me.
I am thankful for my coaching partner, Steve Kephart, who stepped up and helped cover my obligations when I could not be there.
I am thankful for my other friends, parents, and players who continue to send me Email get well cards as they learn about what happened.

Here are the other thanks I gave on Turkey Day...
  • I am thankful that my daughters condition is apparently in remission.
  • I am thankful that the first vasculitis episode attacked her foot, and not her heart.
  • I am thankful that we are learning more every day about how to cope with this, and how to improve how she manages the side effects of the wonderful and horrible Prednisone.
  • I am thankful for my family, whose continued offers of assistance bring me strength. Even when I am too proud to accept, knowing that I am not alone helps me.
  • I am thankful that there are more treatment options than before, so we can move forward.