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...
Sorry, I've been wallowing in self pity for a while now. No interest in answering emails, phone calls or forums. Just getting through each day. My wonderfully understanding husband took me to Florida over Christmas break for 4 days - no kids! I even got to go to a spa! It was wonderful. Some would think he just wanted to go to the Capital One Bowl, but I love football too, so it wasn't a sacrifice. Anyway, I'm feeling better, but hate being back in the cold.
If anyone is interested, I added a few new photos, but the more recent of my two oldest boys wouldn't upload. I'll try some different ones.
Hope everyone is well - or as well as can be expected.
Hugs to all,
Maty
(Still morning here :)!).... and Happy New Year a bit belated. Haven't checked in....been adjusting to getting back to reality after the holidays. Hope you are all having a good day. Read some past posts this morning, saw that a few of you have been fighting a "funk" as I call it- feeling down, depressed, etc. I was sorry to hear it, but comforted that I am not alone. Jacqi, it sounds like you have been handling alot. I will be hoping that you feel some improvement really soon, all around. For me, I think after the holidays, having everyone around, my husband was here for 2 weeks, my parents in from NY. Then gettting back to "normal", parents gone, husband back to work travel, and then just keeping up with the kids & their busy schedules, all got me kind of down. Hair still falling out is not helping the mood!!! Ugh.
BUT - trying hard not to give into it. Trying to focus on the good stuff. Loved all your advice that you all shared, exercise, sunshine, talking, etc. Going to get on the treadmill this morning, even if it's just 20 minutes.
By the way, I was thinking about the sunshine aspect..... I, too avoid the sun as much as possible. Living in CA, I have sunscreen slathered on thick most of the time!! My concern being rashes as well as hearing that the sun can bring on a flare. I am wondering though if (with all the talk of low vitamin d levels), if I should get at least a little sunshine. My question for everyone -- do you know and gauge how much sun you can take before it causes a problem? Do you always wear some sunscreen (I use a high spf -- wondering if I should use one with lower spf and see how it goes). If anyone has any comments of experience to share, I would love to hear.....
Oh - and Dallas - congrats on the car!! YAY! That's good news! I'm sure it must be a huge help.
By the way, there was a 5.0 earthquake about an hr. from here last night. I didn't feel it at all, but "breaking news" came in on the news around 8pm. I didn't hear of any major damage, thankfully.
MT, sounds like your daughter is feeling better?
Cat - sounds like you are enjoying your classes. Glad to hear it. I don't know you very well, but from your posts, it sounds to me like you would make a great therapist!
Anyway, hugs to everyone. Hope you all have a good weekend and hope you are feeling good or better than yesterday!
Sorry such a long post!
take good care -Marianne
Okay, everyone's advice really, really helped. Here's what I do for sun (though note: I do not get rashes, this might not work for you.) I mainly go out a couple of hours before sunset. Yesterday, I saw the sun set at 5:00, so I was in the convertible by 3:30 with the dog strapped in and the top down. (Dallas! What kind of car did you get?! It doesn't really matter, but I want to know!)
We set off from the Observatory in Griffith Park at 4:00 and had ascended to the top of Mount Hollywood (only 500 feet elevation) by 4:50. Along the way, Z met three other canines, and became more playful after meeting each new friend. I also think he recognized the spot-- I hadn't taken him to this place since he was 11 months old, and then he got very tired on the trip. This time, he did a Bichon Blitz at the summit-- running around in circles as if to say, "See? I'm a big boy now!" He didn't want to come down at first, but when the sun went behind the hills, he almost pulled me off my feet. Leg hurt a lot at first, but then loosened up, we went real slow.
Our descent only took us about 15 minutes... there is a shortcut halfway down, and fortunately Z always remembers each fork in the trail, because my MCTD brain cannot.
Matyanka, so glad you posted, and glad you got away! The pictures are great!
Help, I did not feel that earthquake last night-- I was in my super DVT leg armchair studying, but my wife felt a big jolt in her office downtown. And I know it's different for guys, but my hair loss is really accelerating as well... man, I look terrible. There's this one idiotic patch of hair in my forehead standing all by itself... I should just shave my head!
Okay gotta get back to studying, but I had very good luck with the last hours of daylight in winter, no sunscreen, immediate positive effect on mood, none of the exhaustion I got from the sun during the summer.
--Cat
Cat - thanks for sharing your experience with sun exposure. I think I'm going to try to stay in the sun just a little more & see how it goes. especially now while the weather is cooler. Also -- I went to the Griffith Observatory back in October and loved it. Exhibits inside were all really cool - of course the kids like the interactive ones best. And the views were amazing. I can imagine a hiking there would be really great (and challenging?? ). Hmmm...I'd like to try it sometime. Over Christmas break we visited the Huntington Library & Gardens - have you been? It was absolutely beautiful.... too much to do in one day (lots of walking), I'd really like to go back.
Ok- off to get the kids from school. Have a good night everyone.