Posted by: Lieslmcq on 4/29/2008 at 11:51 AM
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I noticed on one of the previous blog posts that there are a couple of comments from people who were sharing their diagnosis and wanting to connect with others. With that in mind, let's start a blog round robin to post about how autoimmunity affects us. I'll add instructions on how to do that at the bottom of the post.
Autoimmunity affects every part of my life. The autoimmune clotting disorder (APS) I have has caused several strokes; I have difficulty walking and staying upright, weakness and disfunction on my left side, fatigue and short term memory loss. The connective tissue disease I have causes joint pain,fatigue and a host of other things we don't talk about, yet. I lose words here and there and still have transient ischemic attacks, but those are rarer and rarer. I think the biggest obstacle I have is fatigue, which I get from two different sources. Luuuuuuuuucky!
With all of that said, I don't think my life is completely subverted by autoimmunity. I still work, see friends, read, etc. I am limited in the ways I go about things and the inability to do riskier things (like travel) by myself. My life is full and enjoyable, even though I do miss certain things about life before the autoimmune explosion. Even though autoimmunity is present in everything I do it has not taken over my life; I think that's the difference I was trying to get to: it's a part of my life but not the totality of it. I realize that I'm lucky in that I am still able to work and live with purpose and sovereignty. I don't look forward to the day when that is no longer true. It's coming, but I am content to assume it is years away. It better be!
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Hello,
Looks like this blog could use alittle life! OK PEOPLE!! HUP TWO!!
I'm a autoimmune person who has seen many things change because of my illness, but certainly, not all to the negative. In fact, most to the positive, though many people don't get it when I say that. They say,"How can you possible be happy about becoming deaf? Or, deal with osteo from prednisone? Or, constantly battle with insurance companies, med bills, etc?" Well, such is life? If it's not one thing, I have learn, it's another. Most people have some "nasty little health secret" that they don't discuss until they find out your a part of the club.
I have a very rare autoimmune disease, dx'ed in 1998. I take HUGE amounts of prednisone every day, which is a major drag but it keeps me alive. I'm currently on disability, but working towards a degree in a career that will give me the ability to be self employed, as well as control my schedule. It will take a few years to get "edjumakated", but I'm looking forward to the work when finished.
There are many things we can discuss here...so take a few moments and jot down your thoughts folks! Love to have some good, grind it, conversations on health care, how you cope with the changes, etc.
Your Auto-Buddy,
DeafnOkay
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