MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
Your all great people and I am going to try and stay as positive as possible with this post. I am no longer sure I have anything wrong with me. Just as the pulmonologist said "the Interstitial Lung Disease resolved itself". I am still short of breath, i'm taking 4 pain meds now. 2 immune suppressants. 2 water pills. lexapro 40mg klonapin 2mg Xanax now 1mg as needed. I have listed enough. Those of you with few symptoms don't worry about this. those of you who put you pills on a plate for breakfast because after you swallow all that you couldnt slide a greasy lil sisslin in there. with all these happy pills i wonder. Why should I be happy. Why am I taking a pill to deceive myself. I tried another Rhumy who can see me more than once every 2 months. My Gp doesn't mind running the panels to see if i am in another flare. I feel as if i am getting as much action as an flare gun in a vampire movie. I have discontinued hoping for a fix, a better life. Hopefully the encyclopedia of side effects from all the meds will cause something they can finally admit they cant treat and just leave me alone. The new rhumy wanted to send me to a university hospital. (Vanderbilt) then decided he would assit my primary rhumy. Until my primary rhumy decided he wouldnt work with the secondary so now i have to make a choice 1 month before my short term disability runs out and have no ideas about what the secondary is thinking. I guess positivity is not a strong suit for me. but for the numbers/ stats / morbidity rate, I will be glad to pass to let as many of you live, and at 362 pounds now (back up to 40mg pred and 3000mg cellcept) with flares still happening. but at 362 pounds I feel thats at least 2 or 3 of you guys . its all good , just a rough rough patch
Mary Ann
Hugs and Prayer, Climber (Bergsteiger)
Hopefully someone will be able to help you figure this out. It's so horrible to feel like all you are doing is beating your head against the wall. Keep your chin up!
-Kate
Take it easy please.
It sounds like a big mess to me.....
I hate pills myself...so I am no good on advice and I refuse to take a pill I just tell them i won't...if that don't work I lie and say I had a reaction...I get worried about all the pills they try to dump on me.
I am just talking from my fear mostly....
I don't know if it becasue I'm afaird of my dieases, or just afaird.
But don't do what i do, ok
always talk to your doctors.
I am bad.
wink
ruthie
@ Kate , Its been about 7 months now. Started at 80mg for 3 months. First drop flared. Added cellcept went another month and started dropping pred again. Down to 10mg mega flare and hospital. now back up to 40mg. I don't know what i'm going to do but I am trying to get any exercise i can. Standing for 20 minutes is starting to be impossible. I have to sit and rest.
@ Ruthie, My GP is great but not a rhumatologist,I have his home, cell, and email and we talk alot. He is looking also for new doctors. My rhumy works 1 day a week. So it takes 2 to 3 months to see him. I went to get another rhumy in the group and was denied due to them being in the same practice. I just went to another practice to meet with one I have seen before but have compiled 12 years of information on my history, I keep my own MCTD blog for the doctors with just symptoms and pain info. I have to decide whether to swap now or not but i am also within a month of getting/or not LTD. I am also considering Tulane university. Duke University or any place I find with a good rating.
General statement
(i apologize for the content but someone might appreciate it)
If you also have gained over 100 lbs due to your meds you will find common task as in bathroom duties are as easy as they always were. Now if you have 600 for a bedet, your good. I didnt. In short. There is a valve you can hook up at your shower head, that goes to your shower head or a hose. Added 7 foot of hose, another valve, an 8in piece of pvc pipe with a cap on the end. Drilled a hole and now have a red neck Bu~~ washer. its kinda sad, kinda funny but mostly usefull if you need it. Message me if you have any questions. I also have pictures.
and the average watch reality TV so they believe there ok and shouldn't aspire to be anything else.
p.s. I love my wife and love my four kids. I realize how traumatic the shock of death can be. If I suffer longer so they can look back and say "he isn't suffering anymore" and feel good in that thought, its ok with me.
I think your doing better then me for a long shot....I think you give me power to do more....so do others by talking about what they did when they went to the doctors...or med's their on....I ask my doctor about those med's sometimes....see if I need to be on any of them. for sure.
OK about long term disability.....I was on short first it ran out you applied I hope.....for long term now....they might take a little while it all depends I think of who they are and how long your doctor takes to respond back to them.
I am coming to the end of my long term disability myself....it is scary because I been supporting my husband and son and whoever like grandkids and daughter in law on my income paying rent etc.
now I'm scared....
They sent me forms a few weeks back to fill out and all the doctor etc I see all year.....they said they are going into a meeting to decide if I can be put on permanutly disable??? I really don't know how that effects me except money maybe?
OK I am already on SSDI.....I did everything together when I was still at work so I woudln't loose any thing....
I wish you the best of luck.....it is a jungle of paper work out there,
and some of my doctors charge me to fill out theose forms....
it doesn't seem fair...to us....when were not working etc. limited imcome...but I that is life.
Good luck let me know how your insurance goes ok
Right now I am loosing my medicade as of the end of this month, I just got my card for medicare but it doesn't kick in until June 1, 2012...great.
I learn a lot from what I been thru....you are sick and still have to fight it just doesn't feel fair does it?
ruthie