Every so often I get comments on my blog or emails about my entries about my struggle with Wegener's Granulomatosis. I don't write about it very often because, truthfully, I don't like to think about it too much. By that I mean that I don't want it to be the be-all and end-all of my existence. Yes, I'm a person with an autoimmune disease, but I don't want that to be my entire identity. It's always there, but it's only a small part of me. If I focus on it too much then I tend to become consumed with it, which, for me, is counterproductive. This is not to say that I don't take the disease seriously. I do. But I can't let it take over my life.
Having said that, I do feel I owe it to those who have read my Wegener's entries to give updates every so often. It's still there and requires me to ration my energy. I can pretty much do everything I always did, except I sleep more, or I pay for it. Sometimes it takes me a bit longer to recover from a big event (such as a weekend craft show). I do have trouble remembering to get my bloodwork done every other month, though. As long as I take my medicine the arthritis part of the disease (which is the symptom that affects my life the most) is manageable. I do have flares every so often and I have learned to work through them with extra pain meds, hot baths and rest. (Massages also help.) When things do get bad during a flare, I have gotten pretty good about asking for help from my family and friends.
Having a rare disease such as Wegener's can be lonely at times. Those who don't have it can't relate to some of the issues that come up. However, in this technological age, there are so many online groups that have other Wegener's sufferers who are always happy to give advice or a kind word. I personally don't know anyone else who has Wegener's, except for those I've met online, but I have received a lot of support from a couple of people I know who have Rheumatoid Arthritis. It's not the same thing, but they have similar symptoms with their joints and are on the same medications. I suppose in some ways all autoimmune diseases are the same.
So what I would like to say to anyone who reads this and is having problems is: keep your chin up. It does get better. Maybe not back to the way you were before Wegener's, but it will be a new normal that isn't so bad most of the time. And thank you all for your comments and emails. They mean a lot to me and I hope my (infrequent) posts about Wegener's help.
