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...
Looks like we got behind on the roll call! Guess not too much is going on or too much is going on! All we have here is rain, rain, rain!
But, I got a new car! a 2009 RED Impala! I decided I was old enough to get a red car! Dont actually pick it up until Friday though. It is a previous rental car. I have had good luck with them previously. This is the 4th one I have bought from Enterprise. My poor old Impala has had 2 wrecks, and 155,000 miles on it! As well as 10 years.
Well, on my last entry, I was hurting all over and going into a flare. The pain is mostly gone, YEAH! but my hair is still falling out. I went back to the back DR and he said to stop PT, do the exercises at home and see how I do. He wanted to do a nerve block but I told him I wanted to wait. I owe so much money to the Drs and hospital, I would like a chance to catch up. And I would like to have a life outside of the hospital! So, last night, my back kept me up all night. I was feeling better and really thought it was from the reduced activity. (no bending over) And it was. As soon as I started doing my chores, my back started up again. If it keeps up, I will need a nerve block.
Am taking my daughter to Nashville to look at Watkins Art College tomorrow. Will try to do it in one day. Wish I had my new car!
I am trying to do a Bible study. The lady running it is not too happy with my attitude! I always have a joke for everything we are studying but really do try to be serious to the point that I am just about biting my tongue through. I made a comment about Womens Liberation and the changes in womens roles since biblical times and thought she was going to have a stroke! I thought it was appropriate and not a joke but she is more traditional than I am, I think! Well, maybe we will both learn something.
Hope everyone has a good week!
Mary Ann
But, I got a new car! a 2009 RED Impala! I decided I was old enough to get a red car! Dont actually pick it up until Friday though. It is a previous rental car. I have had good luck with them previously. This is the 4th one I have bought from Enterprise. My poor old Impala has had 2 wrecks, and 155,000 miles on it! As well as 10 years.
Well, on my last entry, I was hurting all over and going into a flare. The pain is mostly gone, YEAH! but my hair is still falling out. I went back to the back DR and he said to stop PT, do the exercises at home and see how I do. He wanted to do a nerve block but I told him I wanted to wait. I owe so much money to the Drs and hospital, I would like a chance to catch up. And I would like to have a life outside of the hospital! So, last night, my back kept me up all night. I was feeling better and really thought it was from the reduced activity. (no bending over) And it was. As soon as I started doing my chores, my back started up again. If it keeps up, I will need a nerve block.
Am taking my daughter to Nashville to look at Watkins Art College tomorrow. Will try to do it in one day. Wish I had my new car!
I am trying to do a Bible study. The lady running it is not too happy with my attitude! I always have a joke for everything we are studying but really do try to be serious to the point that I am just about biting my tongue through. I made a comment about Womens Liberation and the changes in womens roles since biblical times and thought she was going to have a stroke! I thought it was appropriate and not a joke but she is more traditional than I am, I think! Well, maybe we will both learn something.
Hope everyone has a good week!
Mary Ann
My drummer had one, too, in the '80s, and I think that one was a '69. It ran great. The new ones are pretty quick, aren't they?
It sounds to me like Bible class is a GREAT fit, and you are exactly what they need! Go for it!
I am very conflicted on the physical activity thing. It is now Friday, and my back is still incredibly sore-- could not have slept last night without meds.
Today, Mike dropped off a surfboard. A real one. And a roof rack.
On the one hand, I'm thinking this is just stupid. I've had injuries, I've had flare ups, I was fine with the body board. On the other hand, part of me is screaming, "If you want to do this, do it now!! Two or three years, you might be too old and sore to learn... but if you start now and get the skills, maybe you can keep doing it for five years or so."
Okay, enough freaking out. Time to start probate paperwork, bills, and homework. Brandon, thanks for your kind thoughts-- and your off-the-wall sense of humor, as always!
Best,
--Cat
The trip to Nashville was tough! Hard rain and fog almost the whole way. But my old car made it! The school loved my daughters work but she didnt love the school!
Got my new car today. Man, that can move! A red streak when I put my foot down! I have to hold myself back. Such fun!
Hey Cat, go for the board and give it a try! Our time on earth is so short.
Hope probate is not too tough.
Mary Ann
Mary-ann New cars always make us feel good. speed and open roads too, just watch out for the boys in blue. Keep rocking at bibles class, too. As for you Cat go for the surfing wew sufer pain everyday so enjoy yourself for a while. and Dallas I love the cat in your profile picture, letting it all swing out.
It nice to see that dispite everything you have all find ways to have fun and keep going. You are all a great inspiration and I have taken up the gaunlet and started swimming again. average arround 1km at a time 40 lenghts of my local pool - if I cant make 64 its a mile the most I have done it 50 which is 1.25km.
Chin up guy have fun and keep safe
Debs
The thing to bear in mind is that exercise does not always make you feel better with this illness. Usually it does, sometimes it makes you feel worse, but I do think it contributes to overall strength if you don't overdo it.
BTW, my lung capacity is very erratic as well. The first day I was out on the lineup, my surfer friends noticed I was really huffing and puffing. "Does it stay like that, or do you catch your breath?" Mike asked, concerned. I thought about it, and realized that I do recover after a few minutes. What I don't like is diving under the really big waves. I have to remember to take a REALLY deep breath, to REALLY not be stressed (it will just increase oxygen consumption) and to not exhale much when I am under the wave.
Yah, great about the car, Mary Ann! Slow down for those speed traps and watch out for the brain fog. I don't think it affects reaction time, but if you're driving fast and have no sense of direction, you can get lost a lot quicker. I got terribly lost in Culver City on Monday.
I managed a lenght 25m of front crawl the other day and the life guard thought I wad dying when I finishe so did I.
I think you are right Cat excerise with this makes you feel worse short term and the breathing can make this hard, but the other benifits help
I have beem feeling pretty s****y these past few days with one thing or another.....but at last i feel a bit more human. Going to visit an old friend i havnt seen for about 4 years and going out for lunch with her.
Thinking of you all.
Love and hugs x
Went to the Gyno today for the yearly tune up. She looked at my weight and my meds and said I was doomed! Said she didnt think I could lose any weight with the meds I was on. But I will continue to try.
Been kind of upset. My friends father died of liver cancer. He was a nice guy. Diagnosed 10 days ago. Then a friend got sent home from Mayo Clinic to die. Has liver failure. Not eligible for a transplant. And my Aunt called yesterday to tell me my cousin is drinking again and probably will be taken off the liver transplant list! It is just so sad.
Enough of that!
Got interuppted. My Godson and his mom came by. He had a staple stuck in his finger. The teacher called her to take him to the DR. The poor boy was shaking. I just pulled it out! Washed it and put an Elmo bandaid on it! He just hugged me! He is 14, from Hati, and is learning disabled. He was so scared! I didnt tell him what I was going to do- just did it.
Tiggy, I cannot believe you can swim that much! It is so great! Maybe I could try that and my joints wouldnt hurt so much and I could lose weight! I am so proud of you!
Cat- The brain fog has not been so bad lately. Do you think that stress makes it worse? I find I have more trouble when I have a lot to do. Although lately I am too busy to think about it! It is so wierd that my forgetfulness is tied to my past. It is as though I never had one!
Jacquelin- So glad you are getting to see a specialist! That is so long to wait! Good luck on your visit.
Marilyn- Hope you get some help with your finger. Seems when something hurts, you just keep hitting it on stuff!
Everybody keep trucking!
Mary Ann
P.S. Got my H1N1 shot today. No problems so far!