And the winner is.....

Some of you who have been reading this blog for a while know that I was on the great chase to figure out why I haven't been feeling well. Along the way I discovered many things about myself and the healthcare system. By no means has this been an easy journey but, like all things....no not good things....just all things....this too must come to an end. And the winner is...."overlapping autoimmune disorder". So when he said this I said....ummm in English please....and he told me Lupus AND rheumatoid arthritis. I think I liked overlapping autoimmune disorder better. Everyone I've talked to asks me what that means both with respect to treatment and long term prognosis. Honestly, I'm still finding out myself. Currently my treatment is NSAIDs, Immunosuppressants and a pain patch for my back since it is one of the worst joints with respect to pain. I can tell you what it means for my day to day life though - I have trouble with the little things we tend to take for granted....like holding a pen....don't get me wrong I can still hold it....just in a very funny and awkward way. It is very painful to try to write and put pressure on those joints in my pointer finger and thumb. Turning a can opener is a whole new experience. I love to fish...reeling in the catch has become a great fight even when it is just a kitten rather than a catfish. I can't walk 1.5 miles around a track....not because of my asthma ....I'm breathing great....but because tendons/ligaments/muscles in my lower legs get so tight they want to explode and that's the last thing I want to do is have surgery to repair those. I stay exhausted the majority of the time and really have to force myself to be active. Someone yesterday told me I need to focus on something beautiful in my life.....and each time I see my kids I am reminded to do just that. But, sadly, I also need to start to come to the realization that I am in for major lifestyle changes...at least until this is under control.
I also need to be honest enough to tell people that I'm pretty upset about all this. I'm 38 and have always been pretty active. I look back on the journey over the last year when I really started to feel bad and see how much things have changed for me and how differently I feel physically and it is hard not to be upset about the runaround I've been given by the healthcare system. I have lost my faith in physicians. I would have much rather they told me they didn't know and referred me to someone else than to sit around for months doing test after test and THEN telling me in a form letter they didn't know what the hell they were doing and I needed to see someone else. I'm upset that I am only 38 and this is something that will change the rest of my life. I know what I'm feeling is normal and natural and I need to embrace it. I refuse to feel sorry for myself. I've seen what that does firsthand. Back to the knowledge is power....I've not been given a lot of either from my doctor....knowledge or power so I'm trusting healthcare providers I work with to point me in the right direction to empower myself and those around me to know what this disease is and what it does. Here is a link more than a few people sent me and said in lay terms this is one of the best sites for describing the process so I hope you find it useful:
http://www.medicinenet.com/systemic_lupus/article.htm

If you choose to comment on this post ....which I hope some of you do....please don't say "i'm sorry". It isn't your fault....and I don't need nor want pity. There are millions out there with lots far worse than mine.