Diagnosed in Decemember 2009

[Sangye]

Plantar fascia. You've really got to let that heal or you'll be dealing with it forever. I forget if I/we've mentioned it, but pred makes it easy to rupture tendons and ligaments. Be careful out there!

[JanW]

I'm still dealing with foot issues related to PF that flared up more than six months ago (both feet, first time). Be careful! These things can take a long time to heal. There are many stretches that you can (and should) do that are good.

[moyan]

Sounds familiar, thank you.

[onatreetop]

That explains the tendon pains etc. They offered me cruches but they went to get them and they where gone. I looked it up. up to a year to heal if it heals. Great another body part I am willing to trade in already!!!! that will teach me to work a full day then go dancing into the early morning in uggs!!!

[RCOSSIO]

Elephant so far so good, still on pred though...weaning 1mg every 2 weeks....seems brutal every time i go down by one which is 10%. Anyway, feel very good nonetheless exercising, golfing and riding my bike much more frequently

[elephant]

Richard, how long will you stay on Cellcept? How much pred are you on?

[moyan]

Oh tree, what could I say to make you smile? Maybe it is your body telling you "SLOW DOWN" lady.

[Sangye]

Richard, I'm so glad to hear you're doing well. How much pred are you on right now?

[Doug]

Lightwarrior ~ Welcome to the forum! I've been off a few days, and it takes FOREVER to catch up! I agree with the recommendation you stay off the floor for awhile as you will be more susceptible to infection , especially in the intial stages. On top of it, you will have more severe infections because of the suppressed immune system. If you have them, I mean. As a nurse you already have knowl;edge of infection control, and following those reasonable steps, you should be OK. DO NOT (I can't resist noting I nag, too!) let yourself get run down. Prednisone makes your feel like Super Woman now, but you don't have actual reserves to support that extra activity. You don't have to bed yourself down and become an invalid, but you definitely have to become aware of your body's signals that you are over doing physical activities, lest you become rundown. (Nurses are terrible about this, so don't deny it! I've been cared for by nurses so sick they called in but, when others called in sicker, came back and worked 12 hour shifts!)

I laughed (not meanly!) when I read about what you did at night, on Prednisone! I organized, cleaned, baked, etc. until I got down to lower dosaages. I wish I'd been prescribed something to help me sleep, but I bet I didn't mention the sleep issue to my doctors at the time, I had so many other issues to deal with.

REMISSION: Among us, we on the forum compared notes and generally refer to it not as that point when we are asymptomic, but when we notice we feel better, are on a plateau we independently named "new normal". Sorry to report, it may not be something your doctors will agree on, so I have to say it is that point where you realize you are at a "new normal". Believe me, you will know you are there! Jack notes one of the good points you have going for you: early diagnosis, hence less healing to go through until tyhat "new normal" occurs!

Here is a link to the best source of information for the weggie in the USA, with a list of WG spoecialists who actually talk with you and may be able to recommend WG specialists your doctors can use in your treatment. As a nurse, you probably have a better insight into questions to ask doctors specific to your wg, but the list in the Vasculitis Foundation material is one I wish I had had when I was diagnosed back in December 2003.

(The reference to ZEN AND THE ART OF MOTORCYCLE MAINTENANCE was interesting to me as that was a guideline to me as a quality analyst during my working days. There is a Zen-like state of mind you need to develop to view your body in terms of all systems cranking together in some divine pattern that, when discerned, can be used to reconstruct the missing and broken parts. Ha!)

[Lightwarrior]

Doug,
Thanks for the link. My mind is still having a million ideas a minute (before Wegs I only had 1000 visions/ideas a minute) but my body, specifically abdomen and legs feels weak and muscle aches when I stand or walk for more than two to three minutes. I had a UA, and a spinal series of xrays done (needed baseline anyway), no fractures, nothing grew in my urine, but I am on 800/1600 of Supra Monday, Wednesday and Friday since Lungs is a major component for me. I love this forum, the most constructive and intellegint advice I have comes from here. My providers are trying, but are used to depending on me to come up with patient solutions. (I now totally get why it is unethical to treat family/self).
The guideline that Jack sent me is golden.

I don't know why the weakness, I was at a Board Meeting for a Community Clinic that I sit on and I had tons of eneregy as long as I was seated, when I tried to stand to talk to people my back, my entire abdomen and legs ached, after three to four minutes my legs became weak and I became shakey. As soon as I sat down all symptons disappeared and I felt normal (okay, lol how do you define normal when I've NEVER been normal). Side note: I was born in Roswell, NM and most people who know me are convinced that my parents were the ones who crashed in that spaceship crash that Roswell is famous for)

I'm digressing and whining, You totally got the way the Zen reference, and yes I believe the body systems do crank together in some sort of diving pattern. I love the cellular level and am using guided imagery to imagine the adhesion molecules that dysfunction to form the granulomas are coated in teflon so they slide by each other rather than adhere/attach.