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...
I know I'm new, and obviously no fountain of information. But sometimes new is good. Hopefully I turn out that way. All of the existing pain scales I've seen are overly simplified causing guess work on our part and the doctors. If you haven't hurt in weeks its obviously feeling worse at than someone else at the same pain level who feels that way everyday. Our complaints are based on change also. I'm going to attempt to create an excel worksheet that takes a few more things into consideration without being the S.A.T. and come up with a pain graph.
I would like to incorporate some questions that would jostle the memory since your last visit because we all hate driving away from the Docs office and thinking "i forgot to tell him" or " I wonder if this would have made a difference"
I find that Doc's are similar to key word search engines. They hear the right word and they go with it. And it's really hard to find anyone who always understands what your trying to say.
If anyone has any input I would appreciate it. I think if people living with these different pain levels would be very amazed at the concerns of each other were and would be another tool to learn the complexity of this question.
I would like to incorporate some questions that would jostle the memory since your last visit because we all hate driving away from the Docs office and thinking "i forgot to tell him" or " I wonder if this would have made a difference"
I find that Doc's are similar to key word search engines. They hear the right word and they go with it. And it's really hard to find anyone who always understands what your trying to say.
If anyone has any input I would appreciate it. I think if people living with these different pain levels would be very amazed at the concerns of each other were and would be another tool to learn the complexity of this question.
So when my Nuro doctor wrote me a scrip for some of the same medicines I see you all on....the medicade insurance refuses to pay for them I don't get much in the way of money Because I work on n off for many years and didn't make much.
So it is a hardship for my family....
So for me I live with a lot of pain...no choice.....and i do save up my pills if I can stand it for incase I don't have any insurance...it is always a threat to us.
As for what you are on I have either had samples or was able be I lost my job over my COPD at first and now several more illnesses but when I was at work I could get med's. But now I am worse I can't get all the med's the doctors try to give me.
It's like a double edge sorde to me. you live with the pain mostly.
I am so tired of it all....my memory isn't working all good and the government after being tested my memory lately they won't pay for the pills to help with that....
I just think they make you wait those 24 months h hoping you'll just die or go away so they don't have to pay for what we need or in my case what I need.
Sorry I guess I am depress lately....
but I try to walk with my walker it hurts or I get too tired.
I have some new pills samples my Cardo gave me yesterday...they sent a Scrip to CVS drugs store when I got there the said insurance aka Government won't pay for the. They suppose to help my veins...I have to look them up to understand what that doctor was ssaying..
yes a good idea when I remember and do write things down...I guess I need to remember that too.
Right now my daughter in law is living with us with her 3 year old and 1 year old grandsons....
She bought over her nease who is 17 to help babysit so my daughter in law can help with the house work....which is a big help...but mostly she is a change smoker and the kids get upset all the time she goes out side.
I guess it's ok or not she is here sometimes when Eathen bangs on the doors I think this 3 year old will put a hole in one of the doors...
I have to say they made more mess of my house since coming to live with us...but you got to love them just the same.
Eathen likes to spill just dump everything he gets on the floor or throws his food everywhere....and yesterdady he spill the hole cup of milk onto our dogs body and head...of course the dogs are standing waiting for Eaten to give them his food....
I don't know but it is wonder sometimes if I will make it thru all of this and everything.
Eathen is spoil and his mother just now is learning to spank him when he does things deserving a spanking....I told the nease who suppose to watch him not to keep giving him food to dump....if he don't eat it then stop make him get hungry maybe he will not throw spill or dump all his food...by 3 you think he will learn.
so you see it's impossible for me to be sick...with all that goes on in this house....I can't take watching the mess it boughers me.
so I will get up and clean up the messes.
I don't know but the pain in my legs and hands and hips and knees seems so small to what we go thru raising kids....again.
lol just thinking out loud....
so what I think there is a lot of stress here...probably doesn't help me either.
i hope you have a merry christmas an a healthier happy new year
sorry so long.
yes new too and don't know how to explane my pain and what I do for it....I think about quiting doctors they just don't understand....pain.
I try and ask but still waiting for pain management...maybe that is the terrible insurance fault once again.
oh well
don't wish this on anyone.
bee