I feel the same about this group. Just venting has gotten me through so much as well as the tips and just having someone who understands and has been there! It is disappointing how few have followed so far. I really dont like this format but I need fit too. I hope others will come back.
As for your issues. I hate it when I cant sleep. I am finding myself going from days of not sleeping to wanting to sleep all the time! It is frustrating, to say the least. I hope you have the head of your bed elevated. It does help some. Of course, you keep slipping to the bottom of the bed. I wonder if there is a treatment for swallowing dysfunction? I really dont know of anything if the muscles dont work right. I will try to do some research. Hmmm. As for depression, well, you know more about that than I do! I find being outside really helps. The winters of day after day of gloomy cloudiness are not good. I used to think of those days as a soothing restful time, now I find I just get the I dont give a damns! Maybe, not working is it. I am not forced to get out on those grey days.
Hope you get some insight at the shrinks office! and keep in touch.
Mary Ann

I like the way you space your message. I think I need to do that as the type is so small!
Mary Ann

I agree 100%, they robbed us of our support. Hang in there, don't give up the fight. They redesigned this website and I totally lost my support groups. Thank you very much dailystrength or is that dailyshit now.

Thanks so much for replying, you guys-- and for fighting your way back here, offering me some encouragement, and a little dark humor, which you know I thrive on. (I love "dailyshit"!)

I am happy to report that I had a very good session with my shrink, I slept a lot better Tuesday night, and was able to get in a quick but intense bodyboarding session on Wednesday. (Of course, I can barely move now, my triceps are destroyed, but it was very good for the spirit!)

Good tip on going outside, MT. Here in LA, unfortunately, it's 100 degrees and the air is terrible, but this did help yesterday, and even getting out briefly helps enormously. My sessions in the water, even my dog walks are very quick, but I get a lot out of them. Thanks again, you guys are the greatest!

I'm glad you're doing better. Just a side note. I take Pure Olive Leaf Extract now, and it does wonders for depression. I'm not sure how it does for MCTD overall. But it does heal quite a few things if you look it up on the internet. Of course it has to be 100% pure. It's a natural herb too with no side effects. In case you're interested.

Katalyzt, awesome to hear that you got out on the bodyboard! I have been doing my usual bike on the weekends and then wait the 5 weekdays to recover and then bike again. Outdoors is great for the mind and spirit!

I am sorry Cat. I have been guilty of disappearing from the site, and I apologize. You all have been good to me, so I am here to listen, brother. I am here for all of you. I became preoccupied with my "new" job (Been here since November, unfortunately) and an unexpected weight gain.

Thanks, guys, new friends and old-- it's so good to hear from you-- Gabpaul, good to see you made it back! I have long absences sometimes, too.

Kmaharg, I think I am going to really scale back the bodyboarding. Friday was session 5, and it was just not good. The conditions are part of the problem, but I was just so weak-- too weak for this to be safe. Doesn't mean I won't try again, but I'm going to decrease the frequency a bit. I was planning to shoot for 15 sessions this season, and now I am thinking 10 would be ideal, and I need to REALLY walk away if it's bad. Diving under the third wave was incredibly hard, and I just felt out of breath the whole time.

I have had a lot of really good breaks since I started this thread. So anyone who is feeling really crappy right now, just hang on. It does get better. (Usually.)

And I do have to say, at the risk of being paranoid, I am beginning to wonder if the redesign of this website may not be accidental. This site is sponsored by corporations-- read all the ads-- and I don't think it helps any medical company's bottom line if we share information. Particularly if that information indicates that some common medical interventions don't work out well over time.

This website can't be helping any drug company's bottom line. Doing away with it would be too obvious. Why bother when you can just make it harder to exchange information?

Maybe I'm wrong. I'll try searching some old threads and see if some of our more controversial ideas and conclusions are easy to find or... just buried somewhere.

And start researching alternatives. Though I'm not leaving this site until they pry this keyboard from my cold, Raynaud-blue fingers! ;)

I admit I do like the old format better! Right now I am dealing with something different than my autoimmune issues - spinal degenerative disc disease. I causes constant, sometimes awful back pain. I had my steroid epidural on July 21 and it did not take, so I have another in 2 weeks. Doctor wanted to do it right away, but my horrible insurance company is making me 2 weeks so they can review it. Who seeks out a big ole shot in shot in the spine? Oh, I can't remember if I told you all, but I was diagnosed with hyperthyroidism. The only thing I can notice is a lot of hair loss - I hate it. Pain doctor today said I might have CREST and asked me to mention it to my endocrinologist nest week when I see her. I don't think I have it. Hope everyone is well or maybe at least OK!! Cheers, Gabrielle :)

Some geek got paid to make the site "cool" and totally messed it up. Do the dip sticks even check that traffic is down. The most active free golf forum on the web did the same thing and is now virtually dead. # dumbasses!!

Finally figured out how to navigate this stupid redesigned website. :( Sorry to hear that you're feeling down. There's definitely a sense of absence/loss of community in not being able to communicate with anyone else who understands this illness. Hope you're feeling better!

So good to hear from you guys! It took me, like, two weeks to figure out that y'all had responded to this thread... GAB, I am so sorry that you have been having a rough time with your spine. Sending positive thoughts... Thanks for giving me a chuckle, Hoosier! Yeah, I've seen many sites die for many reasons... I hope you're right and the reason this happened is simple cluelessness. Alwez, great to hear from you. I'm going to keep coming back and trying to fight my way here no matter what they do to the site, and I hope you guys do, too. I'm starting to think we should have a backup plan, though, in case this site fails completely. How would we meet up again online if that happened? Where would we go? MT, is there a lupus.com or someplace else you hang out where we could go in an emergency? Thanks!

Great thought...it's pretty obvious that some regular posters are lost with this format. Let's scout the web and see if anything else is out there for us.

Well, I did sign up for a MCTD site on facebook. It is kind of dead and we could revive it, but not as private as this site which could be a problem for us. I like not being so public. Having some anonymity allows us to be totally honest and talk about things we might not want broadcast on something as open as facebook. Hmmm. Mary Ann

Yeah, the privacy issue is a serious concern. I want to be able to talk about anything here-- things I did when I was young and stupid, things I think about but would never actually do when I'm feeling low. And I'm in a confidential occupation, so I wouldn't want any licensing agency to know that I even pretended to think about doing something stupid.... like, say, skiing Steamboat Spring from top to bottom without stopping after ingesting a three-letter chemical that begins with "L" and ends with the fourth letter of the alphabet in 1977 in one of my first big remissions. :)

Yeah, let's stay here for the time being and make the best of it. Someday, I'd like to set up a separate group with it's own domain and security, etc. Even then, if I ever get around to doing that, I think we should all maintain a presence here.... if we can stand it!