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...
Time for a new roll call!
I think Dec. has been a busy time for most of us as I see less posts. I hope that means we are all having a good time!
I tend to withdraw when things arent going well. Have had a lot of little issues lately. But I am still putzing along!
Went to the ENT today. He scoped my vocal cords again and I still have swelling and reddness. He mentioned my having a surgery to help with the reflux. I am avoiding surgery at the present! Also, I have been having weird facial pain. He thinks might be trigeminal neuralgia.
Still have a rash on my legs and all I want to do is sleep. But that has been worse in the past so, I am not too worried about that.
Meanwhile, I have been getting ready for Christmas and my nieces wedding. Got a new outfit and plan to get a haircut, so I ddont look too much like a Tennessee hillbilly. She is wanting to impress the in laws from England. I want her to be happy. She is a sweet girl.
Meanwhile, I am running into so many people who are having trouble with their healthcare. I just dont understand why people in the US think the US has great healthcare and no reform was needed! All you have to do, is talk to people you meet everyday and see them losing everything because they get sick. I have pretty good coverage, but a guy I know is about to lose his house because he had a heart attack! And he is back to work!
Excuse my rant, but I see it every day and it hurts. I am not sure the new health care laws are the answer, but they are a stab at the problem.
Anyway, I Hope you all have wonderful holidays, no matter which you celebrate. And Merry Christmas to the Christians!
Mary Ann
I think Dec. has been a busy time for most of us as I see less posts. I hope that means we are all having a good time!
I tend to withdraw when things arent going well. Have had a lot of little issues lately. But I am still putzing along!
Went to the ENT today. He scoped my vocal cords again and I still have swelling and reddness. He mentioned my having a surgery to help with the reflux. I am avoiding surgery at the present! Also, I have been having weird facial pain. He thinks might be trigeminal neuralgia.
Still have a rash on my legs and all I want to do is sleep. But that has been worse in the past so, I am not too worried about that.
Meanwhile, I have been getting ready for Christmas and my nieces wedding. Got a new outfit and plan to get a haircut, so I ddont look too much like a Tennessee hillbilly. She is wanting to impress the in laws from England. I want her to be happy. She is a sweet girl.
Meanwhile, I am running into so many people who are having trouble with their healthcare. I just dont understand why people in the US think the US has great healthcare and no reform was needed! All you have to do, is talk to people you meet everyday and see them losing everything because they get sick. I have pretty good coverage, but a guy I know is about to lose his house because he had a heart attack! And he is back to work!
Excuse my rant, but I see it every day and it hurts. I am not sure the new health care laws are the answer, but they are a stab at the problem.
Anyway, I Hope you all have wonderful holidays, no matter which you celebrate. And Merry Christmas to the Christians!
Mary Ann
Some days I can barely get out of bed and when I do it takes me hours to get presentable. My oxygen levels have been low due to a chest cold so that is not helping.
I am off to the rheumy on monday, hopefully she can tweak my meds or something.
I have an appointment with my homeopath and then an acupuncture session........ Here's hoping for some relief
Hope everyone is well
Beth
Big fun...
I haven't been feeling too bad for a while now. apart from fatigue, stress and a few aches and pains...
I Hope you feel better soon Beth, and Cat i hope you get sorted out soon. Mary ann i hope you enjoy your new look and the wedding.
Love and hugs x
I go back to the rheumy Monday. Hoping he gets me started on something.. THis is starting to get the best of me.. I wish everyone a pain free day through the holidays.. Take care and hugs.
Camille
Bruno, I'm sorry you haven't been feeling well, and I usually hate Christmas, too, or I have since the dawn of the new century. Then again, I hate cell phones, cable television, and don't believe in the Hoover Dam, so don't follow my example.
MT, I agree-- absolutely don't get surgery unless you are, like, dying much faster than you seem to be at the moment. With health care in it's current state, I don't trust anyone in the profession except for people I know personally, and even then only when they are in a good mood and don't seem more psychotic than usual.
Actually, MT, let's be honest, we are both in health care now, and we are all quacks and have no idea what we are doing. As you know, I avoid seeing the doctor whenever possible, but that has not been working well for me, as I will explain....
The bummer about the new health care plan is that it has no teeth-- no control on premiums or benefits that must be offered, or salaries for marketing or controls for what drug companies can charge for new products. The reforms, though well-intentioned, will accomplish nothing. The health care industry in the U.S., is totally out of control, and needs the boot of government on it's throat. Those are just the times we live in-- there are other times when the situation would be reversed.
You may have noticed I'm a little cranky. Okay, so I was in the ER last night-- Urgent Care forced me to go-- chest pain, tooth pain, some &*$#! crap-- and I've had an EKG, a chest X ray, had an IV in my arm for three hours-- and I'm driving home and they haven't found anything though I'm pretty sure I have pericarditis and I haven't had any pain meds (they offered, I said no, wouldn't help diagnosis) or alcohol or a cigarette, and this dipturd is driving two miles an hour in front of the Scientology Celebrity Center, so I naturally yank the steering wheel, mash the accelerator to the floor, and pass him at a sedate 50 miles per hour or so (this is on a city street) when the Scientology Celebrity Center Rent-A-Cop Goons-- who I hate with a passion-- starts strobing his flashlight at me...
Guys, I damn near pulled the car over, asked for his ID, and called the cops. I was just... crazy from pain. I mean, I'd tried meditating, that worked for the first three hours, but... oh, man, Catalyzt had a VERY bad night last night! You know me-- I'd rather get crazy than get sad when I'm sick, but... there are problems with my strategy...
And I need to use my support group more. And I will stay cool and make sure this does not happen again for at least a few years. So thanks for listening to me vent... hope that had some entertainment value...
I have eventually stuck my head out to say Hello
Lela OMG what CR@P news feel for you both. It's a case of going back to the beginning start taking each minute as it comes then the hours then the days...so so and then before you know it.
You know where the group is use us, I never mind receiving a vent from someone who needs to.
Cat you are such a peach, you keep going better than most of us, and yet you suffering is just so on going. I so understand what you mean about Docs being quacks, that is no different this side of the pond.
Example A) I was told my chest x-ray in October ( the one took while I was an inpatient for my bloods ) was clear, but when my Rheumy saw it she pulled a funny face and said can't see why it worse than the one took in June. So now I have to have another chest x-ray
and go back in 6 weeks.
Example B) My GP was on holiday so when I put in my request for repeat pain medicine, one of his colleagues phoned to ask if they were necessary. Now this GP is not my favorite, but he does not believe in MCTD and thinks that I am faking my illnesses. He asked if I realized that my Tramadol is morphine based and my codeine is also a strong pain killer could I not cope on paracetamol
Anyway I get side tracked Cat you keep going. You are an inspiration.
Jaques my darling the weather up north has been SHITTY to say the least lets hope that the god comes out and warms the place up for you.
MT new dress and new hair party time enjoy the wedding.
Well what been happening to me ..... Well my Nan died, 86 I believe not a bad age. Been coping well with that, the illnesses well my bloods are starting to drop again and the pain in this cold weather is getting me down. Heat pads tens machines and pain killers
Then last week I got side swiped by a drunk now my car is in for repair.
I am taking each day one at a time and the days have turned in weeks.
Some good news I had my review for trainee assistant manager and they are keeping on the grainy register I will still the training and work toasted becoming a fully fledged assistant manager. I told them I need that goal. They agreed
So now like everyone else I am prepping for Christmas and the presents very selfish but it's treat time for me and others.
So hang in there 2011 will be here soon.
am in a strange place at present. pain yes. but not unbearable. sad yes, but wiser and reflective rather than morose, avoidant but conversant at times. a little lost and unsure i guess, this does not improve does it? my lupus and demato whatever might subside, but the myositis and arthritis and raynards and schlerodema etc will remain, am i right/ my entire outh hurts so cat i would have no idea where to start with a dentist, am leaving well enough alone or avoiding at present, anything to do with my health other than the usual cocktail and seeing how the contraceptive pill is going to effect things now that i have been on it for two months . have slept well past lunchtime the last two days. up til sparrow fart, hours, time, days seem irrellevant. t