I feel like I've been stuck in a worm hole and time has taken on a whole new quality. It seems to be flying by at phenomenal speeds and I'm just stuck watching it warp by.
I've been conspicuously absent from here and the Common Thread blog and have been thinking about getting on and writing my ever present swirling thoughts down but these impulses to write always hit me in the middle of the night when it would be completely not feasible to get up and start things up while the rest of the family is in their fragile sleep mode.
I pulled through the first annual Pajama Day and it was a screaming success. I spent most of the day on February 29th covered in goosebumps and on the verge of tears, completely overwhelmed by the support and sportsmanship of my beautiful community. I put on my PJ's (my going out PJ's) that morning and dressed Hana in hers hoping that there would be at least one other person out there wearing theirs. Well to my complete shock and surprise, I got to the school and saw a number of the parents dropping off their PJ clad kids while wearing their own PJ's. The feeling and PJ wearers just snowballed from that point on. It was a magical day. Truly.
I spent most of the energy I had stored for the whole month on that one day but it was so totally worth it. I've been sick with a cold since then and it's just now starting to go away but again, worth it. People are telling me how wearing their PJ's all day changed their perspective in so many different positive ways.
My other issue right now is that I'm weaning off the pred, and it's lower than what my body makes but higher than what is needed to get the adrenals to even start waking up, let alone making their own corticosteroids. Soooo, the crappy side of this equation is that I wake up with no energy and the energy levels just drop from that point on throughout the day. There are also constant aches and pains throughout my body - all the time - that I am attributing directly to the wean. I think the disease is at bay now - I'm scared I might jinx it by saying so because this stupid disease can turn on you at a moment's notice. I have this feeling now in my brain that the pred wean might be one of the more difficult things throughout this process. I can really feel it, and I know that if you misjudge it by even a little bit you can set of a flare and be back at square one within a week. It's happened to a Weggie friend, and I do NOT want to go down that road.
There, I just got my mandatory whining in - sorry. I try very hard to keep my wa-wa's to myself, but I assume that there are other Weggies reading this and it might be something they might also be feeling and would want to know that it's not the exception but more the norm.
Wegener's Granulomatosis. A rare auto-immune disease affecting 1 in 30,000 to 40,000 lucky winners. I'm one of those winners. Diagnosed in May 2010, life has changed dramatically in some cases for the worse and in some for the better. This is where I ramble on about my observations with this new friend called Wegener's - which makes me a Weggie (pronounced 'weg-ee')
Hello Marta:
ReplyDeleteSo glad to hear your PJ was a success, not so happy to hear the tuff time of weening off the pred. Mike is finished cyclophosomide and is down 10 mg of pred, will start in Imuran next week. He still feels very week, no energy and sweats every time he moves. He has gained about 45 lbs and finds it difficult moving around carrying all that extra poundage. We are still full of hope for the future and look forward to reading more about you & your climb!
Take Care, Kari & Mike Vandermeer
Hey Kari,
DeleteI'm happy that Mike's on the right side of the game plan. I've been on pred for two years now and I think that might be part of the reason I'm having such a hard time with it. It's also given me a bit of a psychological blow as I thought that once I'm here things should be getting easier not harder. I don't feel like I'm dealing with anything from the disease side of things right now, but man is the low dose of pred ever doing a number on me. I also gained about 40+ pounds from my lowest weight about 20 higher than my weight before I got sick (although I was carrying a bit of chunk from baby weight)but it is a lot of extra dough to carry around. I also haven't had any energy to get any exercise since I got below 7mg of pred (I'm dropping .5 per month) and I feel my old life slipping away each day. I know it'll come back sometime, but right now it feels like it's an insurmountable goal. I know I'm being slightly overdramatic right now... Full of hope for the future is the way to go though, so you keep it up and I promise I will too. All the best to you guys. Hugs from the Rockies.
Hi Marta,
ReplyDeleteI am so glad I have found your blog. I've had microscopic polyangiitis (MPA) for 12 years and was diagnosed with Wegeners in December 2011 when I started going into Kidney failure and had 2 kidney biopsies. Thank you for providing me with more information than I have been able to find in New Zealand (where I live) there are very few people with it here and virtually none that I know of with both MPA and Wegeners. I look forward to reading through the rest of your blog and seeing your updates.
Hi Katie,
DeleteWow MPA and GPA (WG) that's a mouthfull to say when you're telling people. MPA was actually on House last week, and since the two are the evil twins, I felt honored to be that close to making an appearance on House again.
I feel like there are very few people with WG around me, but I have met a couple in person - one in Edmonton and one from Saskatchewan (and he says that there is oodles of WG patients in and around his small town - must be something in the water) but so many on-line and some I feel like they are very dear friends now, so at least we have that much more that others with these diseases didn't have even a couple of decades ago. I just talk about my experience and stuff that I have found out, so I don't ever think that it's enough to help anyone, but if there's anything you wanna chat about please feel free to contact me, and we can chat.
All the very best to you in your fight for normality and health, and I hope that one day before we're all either old or dead, someone can find the cause/common thread of all of these autoimmune diseases and we'll be the last generation to have gone through this private little hell. Take care Katie and keep in touch.