MCTD Support Group

Good Morning,everyone.
Hello Josee..Sorry to hear about your son,glad
he is alright.Yes,just when you think the road of life is taking you in one direction...then the 'Y'....When it rains it pours ! Right?
Take care of yourself, and stay strong!
Hugs and Prayers,Lisa

josee so sorry your son had to go through that so glad you could be there for him. I am getting ready to leave just put my response on yesterdays log. Everyone have a good weekend with strength to move mountains or ant hills. Jamie

Good morning everyone!!! Glad to hear your son is doing alright now. Glad the new treatment isn't too awful.You take care. hello lisa!Hope your days a good one. Hi Jamie. I read your post from yesterday. Maybe you should see a rhuemy . lol . hugs and a good day to everyone.

Hi guys, I'm back form the hospital with my son...he's all tucked in for a nap and I can take advantage of the time to catch up with my DS family.
OK...how this all started. Well, despite the very dramatic onset of symptoms in the spring of 2007 which led to the MCTD/ILD diagnosis my health up to that point is filled with clues which confirm that it has been with me for a long long time. As a child, I had arthritis and throughout my life, I have had low platelet counts which have baffled the doctors. Raynaud's started when I was about 13 and it was very severe involving both hands and both feet for a number of years. Then, almost magically, it disappeared. I've always been anemic and i developped pernicious anemia in my 20's. I also had Hashimoto's Disease (which involves the thyroid gland) in my 20's. I seemed to sail through my late 20's and 30's with nothing more than the occasional small joint pain, anemia and weird blood platelet counts. Several years ago, I had a very strange episode which was eventually diagnosed as Sarcoidosis (white blood cell dstick together and form clusters which lodge in the lungs or other organs where there are lympnodes). That resolved completely and I felt quite healthy otherwise. Then, in the spring of 2007, all hell (sorry, heck) broke loose!! It started with vasculitis and this led to a DVT which ran the whole length of my left leg. That, unfortunately led to several pulmonray emboli which damaged my lungs (but didn't kill me, thank God!). That was accompanied by sore joints, muscles and fatigue to the point that I could not walk or use my hands. That was a tough spell which did not resolve until several months later. I later developped the tighness of the skin which is associated with scleroderma and that took on a life of its own! My lungs are quite damaged and they continue to be attacked by my confused immune system. I suffer from severe fibrosis of the lungs and Interstitial lung disease. Drs are still working on finding the treatment that will arrest or slow its progression and we have reached the measure of last resort...full blown chemotherapy. That has just started and so far, the effects are tolerable. I feel quite encouraged by the prospect that this might lead to remission...I'm ready for it...I miss my old life but I am prepared to start a modified one very soon!!!
By the way, this all sounds much worse than it really is...in reality, the medication is helping me deal with the pain and my friends and family (including you guys) are helping me deal with the strain!
Hugs to all,
Josée
Time to stop typing...I think I have enough for the first Chapter of a book!LOL

ELLO ELLO to all Y'all..........so sorry to hear of your son's appendicitis & surgery.........but glad that they caught it in the nick of time Josee.......I hope that this chemo works to your benefit......take great care of yourself!!!!! I am all bummed bcuz my grandgirl Kiara & my daughter Dezaree were not able to come out fer my birthday :( doesnt look like they're coming here at all.......but both of my kids did call me to wish me a happy birthday & BEST OF ALL WUZ THE BEAUTIFUL MESSAGE FROM U Lisa57zz!!!! Yer singing is loverly!!!! TY
~Donna

Hey, everyone,

This thread just gets more and more interesting. Turns out that Josee's symptoms didn't start quite so recently... and in fact, there is kind of a pattern developing: Strange symptoms early in life or as a teenager, then sometimes very significant remission during young adulthood and into early middle age, and then the return of symptoms-- only different, as if the disease has morphed a bit into something else.

Let's hope all this isn't freaking out Chloe. Chloe! Where are you? Maybe someone should go find Chloe when they get a chance, send her a message and see if she's okay... I'll do it tomorrow if no one else gets around to it.

Okay, moving along... Brandon, good to hear from you, sorry about your birthday! I have decided that 50 was the last birthday I will celebrate. It's too much work, I feel weird throwing a party for myself, we're too busy to enjoy it. I really have not enjoyed my last three or four birthdays, they are in the fall television season, I'm always too busy to have fun. So I sympathize with your disappointment.

Josee, I'm so glad they caught your son's ruptured appendix! He's gonna be fine, a friend of mine's ruptured appendix was caught much later than your son's. He was really weak and uncomfortable for quite a while, but had no lasting ill effects, none, zero.

Lisa, that is so interesting you had a big remission around the same time that I had mine. Wow...

Help01, in answer to your query, yes, by connective tissue I mean aches and pains though I think this can also mean organ involvement, kidney problems, that kind of thing. The pericarditis is an inflammation of the lining of the heart, and that was a connective tissue symptom as well, I think.

JM--- you were blind for six months? I guess it's belaboring the obvious to say that must have been rough-- I really admire your courage. I also was blown away by the offhand, almost casual way you mention it, like it's in a laundry list of things... "I had this, I had that, I was blind for six months."

Anyway, gotta run, more job hunting to do, keep it coming, folks...

--Catalyzt

Good Afternoon. just got back from a few quick errands, i was in the last store and my youngest son called me to let me know we had water in the basement. got home, we have a HUGE mess in the basement. I guess it was a hint from above that i needed to get down there and get rid of some things. one of the dogs has a vet appt, my oldest will be needing a ride home from the weekend and i am still in a great deal of pain and can not do anything downstairs. the plumbers will be here soon. cross your fingers that this is not as costly as it looks!

so much for no drama!lol.


kristin

hello, all. ONce again, feels good to check in and read your posts....Hope you all had a good day and are feeling good. Josee - hope your son is feeling better. You have been on my mind! It was interesting to read your post and series of "events" throughtout your life....sending hugs and prayers that the new treatment works quickly. I LOVE your attitude!!! It is so inspiring. Cat - thanks for your reply. You are a great source of info. for me. by the way, if you don't mind me asking - by your comment, I was wondering if you are in the tv bus. in LA? I am on the east coast on vacation, but also live in LA (outside of the city). Kristin - sounds like lots going on there! I can relate to a day like that....good luck with everything! Ok - and a general question if anyone has a seond....I have been feeling better in the last 2 weeks than I have in months. This is all new to me....is this what you call a "remission"? And now can I hope this will last awhile? I get the impression it's all pretty unknown, but just wondering if there's any sort of "pattern" to these things? I'm just praying it lasts.....it has been such a relief to feel better and more like myself. Being on vacation, my stress level is down (maybe helping me feel better?) There's probably not an actual "answer" to this question, but any comments on flairs and remissions, I would love to learn more.... thanks to all and have a good night....and let's all hope for some good sleeping! :)

Wow, Josee! So glad you got your son back home! I pray your chemo does the job. I read where one of the biggest problems with MCTD is with the lungs while it is kidney problems with Lupus.
Cat- I also find that age pattern very interesting. Also, with the women, childbith seems to cause problems to arise. My rheumy pointed that out the first time I saw her.
Hey Brandongirl- Hope your Birthday was good in spite of your not getting to see your daughter and granddaughter. Have a wonderful year!
Maybe we should all go on vacation like help01 and see if we dont all feel better! If stress is the problem, Josee and Kristen are in trouble today!
My back went out at work today, one of the patients got choked and I was dragging chairs around and such. One of my co workers Heimliched the lady and she was OK. But I bent to take her blood pressure and the spasms started. Couldnt walk and almost fell. Time for clonazipam tonight. No spasms now but very sore. Guess all my weekend plans are shot now. Maybe I will just lay on the couch and watch movies! A mini vacation!!!