I've been told to do another post, so here goes. I'm at 17.5mg of the nasty stuff - woohoo! Feeling goodish. Went for a walk with Hana (the older version) and she asked me what I see in the future.... like a year from now. I told her that I see life being back to relatively normal - with a few minor modifications. Back to work, back to playing outdoors regularly, back to being me. My Weggie friends would cringe to see this, but I'm putting it down anyways. Sorry guys. Gotta dream. I know I'll have to be vigilant, I'll also have to minimize any stressors from my life as that tends to cause flares, I'll also have to keep getting blood work, but hopefully low to no meds, and strength back at least enough to do the stuff I love doing.
Last week I had a horrible brain week. I'm blaming it on the pred. I took Hana (the younger version) to gymnastics one day too early and dance one day too late - both on the same day. Had her dress up in costume twice in one day just to let her down - psych! The second time, when she realized it was a no go AGAIN, she sat there in her tu-tu, looked at me, then dug her face in my neck and started to cry the saddest little cry ever. Talk about feeling like a horrible mom. Today I've felt a couple of moments of 'pred rage' - just moments - seconds really - then I catch myself, but it's almost like PMS. You know it's happening and the silent observer inside sees it happening but you can't do anything about it. I've read on the forum that the head games that pred plays happen more so when you're weaning and get below 20mg. So here goes. Bastards beware!!! Pred Biatch on the loose.
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')
Hi there,
ReplyDeleteI came across your page. I hope you don't mind me commenting. I was diagnosed with Wegener's in 2007, when I was 27.
I would just say, it is NOT unreasonable to hope for things to get back to normal. I lead a pretty normal life now, aside from taking a lot of medications, monthly blood tests, and seeing doctors every couple months.
If you are interested, I wrote about what I went through here:
http://www.vasculitisfoundation.org/mikerunsmarathon
Good luck!
Thanks Mike, please comment anytime. I enjoy meeting other rare birds like myself - ha ha. I read your story and it's truly inspirational. Thanks for making me actualy want to go out for a run. I have always found running difficult on the brain - I ran for a couple of years quite a bit and in that whole time I only remember a handful of times where it was really really cool - mentally that is. You know the feeling 'Crouching Tiger Hidden Dragon' type of run. If they all felt that way, I'd be all over it all the time, but you've made me want to go out and give it another go. I'll keep you posted. I'm trying to get out for walks and have just - just - started trying to do it on a regular basis, just to get the pred chub off and try and get back into fighting shape, so jogging for little bits is a natural progresssion.
ReplyDeleteThanks again, and stay in touch.
Weggies Unite!!!!