Post Edited (leeloo67) : 11/10/2006 5:24:37 PM (GMT-7)
I can also relate how chronic illness messes with you and your life. It sucks big time. I lost my dream job working in medical records almost 3 years ago because of my screwed up immune system from Methotrexate. They basically pushed me out using all sorts of mean tactics and acting as if I was faking(even tho my doc. sent excuses after excuses for me to be on FMLA) To think it was a hospital that deals with illness and they treated me like I had leprosy! My husband since then has held down 2 jobs, missed seeing his kids(works 80 hours a week usually) so heres the guilt on me. So to make myself feel better Ive been taking online classes to try to see if anyone will hire me in the Coding Field(yes, medical again, you think I would have learned) If and when I get better enough to hold a job down. I see a Psychologist 1 X a month who has Fibromyalia, she keeps my mind pretty focused on not doing too much, (I think I have to be perfect) anyway, just starting on this site has made me realize Im not alone in the craziness that no, my family doesnt get either(Bros. Sist, mom.) My husband wasnt even real nice to me when I was first sick in 99, he thought I was faking too. So theres had to be forgiveness there, but now he knows. Hes seen the days of no movement,weeks of being in bed, vomiting, diahrrea(sp) pain from shots hes had to give me and the list goes on.... Lovely weight gain of his wife and her loss of self esteem with it. Hope this helps, just a smidge of my personal hell.
My principal Diag. is RA/Felty's Syndrome. Ive yet to find someone who has this crap.(Feltys)
If you need to talk Im here and with you in this.
Post Edited (leeloo67) : 8/21/2006 9:20:05 PM (GMT-6)
You have Felty's!
Tell me your story and Ill share mine when youre done!This is great! Not really, lol, but, I feel like a lost child out here. Some of my Dr.'s have never even dealt with it.(Felty's)-My hemotologist)Do you go to one for your blood counts? How low have you been? How are your neutrophils and Lymphocytes? My spleen was enlarged a few years back when my counts were outrageously low, when I lost my job, and was forced to quit.
Cant wait to hear back from you!
Thanks everyone so much for the support. Wished I could have found this years ago.
My white blood cell count/RBC stayed just below normal my first few years of DX, then plummeted after my Doc. said I was in remission and took me off Metho. and prednisone. Slowly for the next year(2001) my counts slipped and I had no idea. Thats the time I started my dream job at the hospital and my white counts plummeted to 600-900. Neutrophils low/enlarged spleen, even times of constant fever. I missed work all the time then because I couldnt be around sick people. After I quit in Oct. 2003, they started to rise again. (go figure) I read Metho.suppresses so bad, I figured thats what did it for those few years. Then I was on Enbrel, not any help, then Humira, which I just had to go off of, due to poss. allergies. Im only on 25 mg Pred and Vicotin for pain. Im going to U. of Iowa clinics in the next few weeks to see about poss. new drugs. Im like you, dont think about it much, I live a very normal life, unless the pain/fatigue is bad. I have 3 sons and when I can- I play tennis, camp, ride bikes with them and I have became more overweight also, but am still as active as I can be. Some say its denial, no, I know when to rest/I just love life. My neutriphils are a little high now and my lymphocytes are low. They say thats the pred. I just saw my hemotologist last month and I dont have to go back for 2 years unless my counts relapse again. Have you had many infections? Fever? Do you work? Can I ask how old you are? and when you were DX? Thanks for talking.