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...
So, today I get to see the cardiologist and Thurs I get to see the retinologist! Lets see, last week, I took my girls to see the dermatologist and the week before, I got to see the opthamologist. The week before that, I visited the Rheumatologist! Next week, I was to see the dentist, but I put that off until next month. What a life! I get to go places and see people all the time!
But we all go through this. Or do we? How often do you guys get to see members of the medical profession? Should I cancel some visits, or put some off? This really eats into my life, but I also want my life to continue, if you know what I mean!
How is it going for you?
Mary Ann
But we all go through this. Or do we? How often do you guys get to see members of the medical profession? Should I cancel some visits, or put some off? This really eats into my life, but I also want my life to continue, if you know what I mean!
How is it going for you?
Mary Ann
Beth
That said, I visit my doctor as infrequently as possible. It's the same rule someone told me about for dropping acid in the '70s: Do half of whatever the dealer tells you is the right dose. If they tell me to get an appointment every six months, I go once a year.
It is also different because my symptoms are milder, except for my leg and the headaches. I would feel differently if there were ONE person on this board who was saying, "Hey-- my doctor tried a series of complex treatments, and it took two years, but we finally found something that is working consistently." But that does not seem to be the case.
Please take what I am saying with a grain of salt-- I did just see my GP yesterday, so I am trying to keep up! I don't want to set a bad example or discourage people from getting help! But I also know how important it is to try to live as normal a life as possible.
Sometimes, you just have to go to the doctor more frequently, and numby, it sounds like that is where you are right now. All I can suggest is when you are out of the doctor's office, try to put it out of your mind as much as possible. Do something fun immediately-- go bowling, take the kids to a movie that you will enjoy too, etc.
I know that's vague, but hope it's helpful!
Best,
--Cat
Hug and Best Wishes that your routine will ease soon.
Luv Tiggy
If I could stick my nose in here - Cat, I do have a treatment schedule that is sort of complicated, took a wee bit of trial & error, and TIME, but it is working for me. 2 years ago I could hardly function, no one could touch me because it hurt too much, had to force myself to move, but of course I had to, because life does, indeed, happen. Now, I am almost overall pain free, with occasional swellings & inflamations, but nothing like it was. Slightly yucky day-after-methotrexate-days, but overall, not bad. I listen to the Dr, discuss issues, we come up with a plan together. Then I do as recemmended, read & learn everything I can, and then make appropiate adjustments for myself from there. I can go as long as 4 months between appts right now, although at first I was in PT & OT 4 days a week, and Dr's monthly. So yes, it is a lot of medical stuff. But it can and does get better. BTW, Rule of thumb in my family - pokes mean you get Ice Cream!
Of course, life with kids is a whole different story! Keep them separated in your mind. It helps! Promise.
IrishRose
Robyn