Well saw my PCP yesterday and he is a little concerned that I will never be able to get completely of the prednisone as with this second decrease my inflammatory marker went up even more. They are going to really try and see what they can do but I am starting to feel the way I did when I was first diagnosed. He usually says well get you better will figure it out. But this time I felt that he feels they might not be able to do a whole lot but manage the disease. He was also able to give me a pain medicine injection that finally gave me a "break" in my pain in over 2 months. I was able to go out with my mom for a little bit and enjoy some time with her. It was nice to get out of the house and get off the couch! I am still having severe headaches and all the meds aren't helping so he has me set to see a headache specialist to see if there is anything she can do to get them under control.
I am in the middle of planning a party with several friends and I am enjoying keeping busy with that and giving my mind something to do. I also bought a Wii and enjoying that alot very happy that I was able to get that. Still waiting for the Wii fit to get in. Anxious to see how that goes and if it will do any good.
Wii fit is awesome. I can’t wait to get back in that stuff. I can’t wait for this flare to be over. I haven’t spent more than 10 days out of the hospital since august. My 3 year old told me to play on her tablet. Lol. Sweet girl. Have fun at your party! Glad you got a “break.” I’m on extremely high doses of im steroids. So I feel ya, girl. I feel you. I’m looking at a year taper for this dose. We’ll get through the steroids together.
You may need to stay on prednisone for a long time- In the first 25 years of my illness I was on it for 20 of those years But it kept me alive without life threatening organ damage and allowed me to live a pretty interesting life. There is no cure for autoimmune diseases and they don't just go away although you can go into remission - sometimes for long periods of time. Your doctor is right- you learn to manage the disease.
Thanks all! Jen, your daughter sounds like a sweet heart! :) I have several younger children always coming up to me when i am in my wheel chair at church and asking me all sorts of questions and letting me know they are praying for me! Melts my heart! On my "good" days and I can walk into church they always tell me its so nice to see me out of my chair! Got to love those little ones. they seem to feel and understand us more than adults.
My next biggest adjustment will be moving out on my own to an assisted living apartment. Our home is not handicapped accessible at all so for me to be able to still attend school I need to get a place where I would be able to get on the "bus". so I am looking forward to that change and adjustment.
Louters, the assisted living apartment sounds like a great idea no matter what age you are if you need a bit of help at times.
I feel we all probably go through stages with our chronic illnesses, thinking we can return back to the way things were before it hit us. Autoimmune diseases don't play the game that way. Eventually we get to a point of acceptance, and then begin thinking about preserving a quality of life despite having limitations. Easy to say, harder to live, but can be done.
I'm so glad you are here, and reaching out so others can be supportive of you. Your friends sound wonderful, real keepers!
Thanks! Yeah I am learning to live with my new limitations. It was hard at first but it has gotten easier. It was weird going to the college the first time in my wheel chair, and having everyone look at me. But as I have gone more and more the easier it has become. Its not how I had planned my life but its the way it is. I could either just crawl up in bed and feel sorry for my self or except the way I am and learn to live life to the best I can. :)