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 dont know what to do today but it sure isn't going to another Doc to prescribe hide and seek drugs while further damage continues.
It took him several times to find a mask that fit him correctly, and that is the key to successfully controlling the apnea. I hope you will let us know how things go for you.
I don't really have much experience with spinal injuries. Is the agreement typical for most clinics? It is terrible that you are not able to receive the care that you need.
As for the wife.....she may be having a hard time because you have bee ill for so long it might be she is afraid......just putting out another perspective.
I am sending you all the good vibes I have right now!
Take Care
Beth
Today I feel good; it has been a while since I felt nothing.
Sometimes I feel bad posting because I am not as sick as everyone else seems to be. My positive thoughts to everyone.
BTW, does anyone know how many members belong to this group? Just curious.
Sincerely,
Gabrielle
That's absolutely ridiculous with the spine clinic. I mean, what the hell? I could see if it was a gp, but not a specialist! Hopefully you can get some answers on the MRI soon.
-Kate
Maybe you should just see an orthopedic surgeon. I hope you get some good sleep. I am sure that will help with everything!
good luck. Katie
What a crappy week-- told with your characteristic deadpan black humor! Can't comment to much on the marital issues, because my wife is also on DS on another forum, and while we have an agreement not to read each other's posts, do I trust her completely on that? Probably not! (Honey, if you're reading this, please gently back out of this page... I'm not going to reveal any confidences even anonymously!)
Let's just say we've had our issues sometimes as well, and it's tough for guys because we are supposed to initiate. Now, when you have health problems, you may not feel like initiating all the time... and when you are finally ready, it is particularly disappointing if you are met with refusal. It feels like total rejection. And you'll feel disgusting and filled with self-loathing.
I mean, think about it... these things bothered us less when we were healthy, right? I mean, when I was 27-32, and in remission most of the time, and maybe one night my partner isn't in the mood, I'd be like, "Okay, not tonight. I'll call one of my other girlfriends... or try again later tonight, in the morning, next week..." No fear, no big deal. I'm like, "Baby, no worries, no pressure." But now? It seems more devastating.
Try to talk to your wife. I know it sounds like generic advice and it isn't easy-- the two things a couple never talks about are sex and money-- but EVERY time I've done this, things improve. Eventually. Another tip: ALWAYS talk about sex before talking about money. Because if you wind up having sex-- any kind of sex or intimacy, even if it's not ideal or not like when you were 30, or if it's great but really infrequent-- you won't care so much about the money, and probably the money conversation will go okay.
If, however, you talk about money first, and that goes badly, the odds of the sex conversation going well are not so great!