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...
Did I get the date right today? Never can remember what day it is much less the date, the month, or the year!
The contractors are jacking up the house today. Trying to level the one portion to put in the new supports on this end. Everything is creaking and groaning. Bet none of the doors will close after they get done! Kind of wierd living in a moving house. Esp one that is not on wheels! I moved lots of plants in preparation for this and forgot they have to put big beams in under the house somewhere. So, I still have plants being trampled! Never can win.
Yesterday, the index finger on my right hand was so sore that I couldnt use it. Still sore today. But not as bad. I think it is from the computer mouse and from writing. But this finger is one of the places that gets red and swells when I flare. Right now my hips also hurt, as well as my shoulders. So, I might be in a bad time for the MCTD. I cut my Medrol by 2 mg for the last 2 weeks. I mean by a total of 2 mg for the whole week, not for each day. Trying to get to 2 mg daily instead of 2 mg 4 days a week and 4mg 3 days a week. Last time I got to 2 mg a day, every joint started hurting and my hair started falling out. I have a love/hate relationship with the steroids. Think I will stay where I am for right now. Oh, and my memory is getting very bad. People are beginning to tell me that we talked about things I dont remember. People with Alzheimers can remember the past and not the present, but I cannot remember either one.
Hope everyone is having a good day.
Mary Ann
The contractors are jacking up the house today. Trying to level the one portion to put in the new supports on this end. Everything is creaking and groaning. Bet none of the doors will close after they get done! Kind of wierd living in a moving house. Esp one that is not on wheels! I moved lots of plants in preparation for this and forgot they have to put big beams in under the house somewhere. So, I still have plants being trampled! Never can win.
Yesterday, the index finger on my right hand was so sore that I couldnt use it. Still sore today. But not as bad. I think it is from the computer mouse and from writing. But this finger is one of the places that gets red and swells when I flare. Right now my hips also hurt, as well as my shoulders. So, I might be in a bad time for the MCTD. I cut my Medrol by 2 mg for the last 2 weeks. I mean by a total of 2 mg for the whole week, not for each day. Trying to get to 2 mg daily instead of 2 mg 4 days a week and 4mg 3 days a week. Last time I got to 2 mg a day, every joint started hurting and my hair started falling out. I have a love/hate relationship with the steroids. Think I will stay where I am for right now. Oh, and my memory is getting very bad. People are beginning to tell me that we talked about things I dont remember. People with Alzheimers can remember the past and not the present, but I cannot remember either one.
Hope everyone is having a good day.
Mary Ann
So sorry you are having such a hard time. I wonder if you are one of those persons that daily tetracycline would help? I know that the research says it works on some people with rheumatoid arthritis. Not proven on other dieases. But the fever makes me wonder. Was going to ask my rheumy about that on the last visit but forgot. Maybe the lab work will give a clue to your docs on how to help you. Hope the new ones are working out.
Mary Ann
MT - sorry to hear you aren't feeling great.....Dallas, too -- hope the bloodwork bring some clues and some help.
Hope everyone is having a good day. Feeling pretty well here, thankfully - just waiting for my hairloss to stop!! Any day now.....
The further into the school year we are getting, the busier things are getting....but happy to be able to keep up right now, and the the kids and I are both enjoying most of it! :) Weather has been great - in the 80s - feels nice.
I have been thinking about Josee so much, as well. I wondered if we could contact the "people" from the DS (is there a moderator or customer service rep or ????) - and ask them to contact her? I'm sure they couldn't give out her e-mail. Even them contacting her might be a stretch, but I was just wondering if there was some way......
Hope everyone is feeling well, better or on their way to feeling better!
Cat - in case you are checking in....laughed about your cab ride into NJ :) -- sounds odd for a cabdriver, I figure they shoud know the area!! I have to say I did something like that recently -- only in the other direction - was shopping in NJ and somehow wound up heading toward the Tappan Zee Bridge heading into NY with no way to turn around. Ugh - had to pay the toll BOTH WAYS!! Once to get over and then to turn around and come back to NJ!
Oh well -gave the kids the opportunity to see the bridge and the Hudson River - an unplanned field trip :) Bike rides in Central Park sound great!!!
Hugs to all....
Sorry, I don't know how to get in touch with Josee either. Hope she's doing well.
I'm still in awe of the crazy symptoms this disease brings... one finger acting up, hair loss, all the variations in bloodwork. I hope everyone feels better soon.
Today is a better day. I actually had the energy to curl my hair today and it actually turned out!!! I'm sure that's helping my attitude - which also helps how I feel at least a little bit. My 4 yr old has his first soccer game this evening. I'm hoping to be able to watch at least a little of it. It's so cute watching all the kids attack the ball.
My scope is tomorrow and I'm getting nervous. I know it's a routine procedure, but I'm nervous anyway.
Hugs to everyone. Hope we hear from Josee soon.
Jenn (Maty)
Sorry to hear that dallas and mary ann are still dealing with so much pain:( That bites!
Jen...I always felt a little better when I did my hair (what was left!) and put a little makeup on. Now...eh, whatever:)
The first part of the big move is coming...Thursday! I left work early today, hoping to get some things done...but I don't really know what to do. I'm at that place that until I start loading my truck...I don't know what to do with anything!! There's some stuffl I need to leave here, until Kevin can get into his apartment and some stuff I have to take now. And, this weekend, I found out, Uhaul will not allow you to rent a trailor, if you're going to put it on a Ford Explorer! Guess what I drive? So, I have to make other arrangements for Rhyan's furniture...maybe next trip.
Physically, feeling great. Lifted last night...chest, then ran for 30 minutes. Felt great. I needed to decompress a little. I didn't use my inhaler before I ran...I still felt pretty good...hm, interesting.
Anyway...trying to pop in as much as I can. Hope you're all doing well!!
Nikkie
Mt hope you have success with your memory issues. For me I have had two basic types: One, the "fog" type where I just don't seem to be thinking much at all, and then the just blankness, where I know I should be able to remember but when my brain looks in the file cabinet, it just ain't there.
I am going to a neuro-psychologist on Monday to start a process to see how much it is actually impacting me. I have definitely noticed it during this business trip. But so far, only my co-workers "in the know" have noticed my aberrations.
wishes for a pain free day to all.
Oddman