I agree with that one Mary Ann...we are all warriors and fight with everything that we have!!

Hi mary ann and donna, happ new year to both of you....and i pray this year is going to be a good one for all of us.
I am still stuck in the house with the snow, but got my pencils and paints out and started to get creative agon....someone i havnt done for sooo long. Iam starting as i mean to go on....hopefully.
The past few days have been a bit rough health wise, but i am talking things easy.....resting when i'm tired, and getting things done when i get burts of energy.
Hoping we all have a good week ahead.
Love and hugs to all. xx

I've seen many roll calls, weekly I guess. What are they about? Is it just to keep us all involved? curiosity killed this cat more than once.
CJ

Hi! The roll call is just a way to keep up with everyone and what they are doing. I think it is one way our site differs from many others in that we just dont just ask questions but try to share our lives a little so we get to know each other better. In the middle of all of that, stuff comes up that we all experience and can find out how others cope with day to day life and the problems MCTD brings to those days. It works well when people sign in as regularly as they are able. Some weeks, nobody checks in very much but at other times, we rock! So, check in when you can and join the fun!
Mary Ann

My body rejected the first try on meds for the rheumy, now I'm rejecting the 2nd try, the methotrexate. Dang! Have an appointment on Tuesday with the rheumy to discuss my other options, which will be Enbrel or Humira. Anyone in the group on them and if so, how are you doing on them. The MTX has mad me SO sick. I feel like I have a hole in my stomach. reflux to the ears. headaches and so fourth, the MCTD symptoms were getting much better, I feel like I can't win for loosing.

Hi all. Still around and finally got my desktop back and working. Still having problems with the tmj and ddd otherwise doing ok. Hugs to all M

I am arround and doing reasonably well went to GP today referral from opticians has come in and she is reluctantly referring me to the hospital. My swab results from the belly button not back but its healing slowly so not that concerned. I had bllods taken yesturday for my reumy appointment that are back except for the specific that should be in in time. like my platelets and heamaglobin my calcium is up, so I should be a happy camper. So why do I feel misserable.
I think its the weather and having too much time not at work, the more time I spend off the more lazy and withdrawn. So with that in mind roll on the week end Hubby will kick me into shape and I will be back to work Monday.

Moan Moan Moan Moan there over and done with.

The new year has started well and now we are starting the rollercoaster ride that is 2010 I look forward to the highs and the lows, its the ride that counts :)

May all your Angels watch over you and keep you safe. May your Gods comfort you. For this is our life and we intend to live it!!!!!

Hugs
Debbie

Numby- I havent taken anything but Plaquenil and Medrol. But ,I know what you mean about the reflux! Take prevacid in the Am and Pepcid at night. The prevacid is prescription. It helps a lot.
In the meanwhile. I got a letter from my rheumy who said the visit to the Opthomologist showed a probability of Plaquenil toxicity. The eye guy never said anything about that. I am soooo mad at him. May look for somebody new after I see the retinologist.
So, for some better news. My high schooler swam a 500 ft competition in 7 min, 56sec. She had everybody on their feet,including the other team,cheering her on as she was trying to make the regional meet. She was 8 sec over, so, she didnt make it. But she said she was happy as it was her best time ever and she knew she had done her best! I told her that anyone who could swim that far was a winner in my book! So, everybody, be kind to yourself. Just do your best!

Mary Ann

Hey, folks, been offline for most of the week, so a long post here.

MT and Jacqui, you both sound a bit better, very glad to hear Jacqui has the paints out and has some bursts of energy! Can you photograph something you painted and post it for us? MT, you are doing a great job on the welcome wagon. Numby, honestly, I'm waiting for the moment when someone tells me that a drug they are on works well, they are sure it is improving symptoms, and it doesn't have bad side effects. That day is not here yet-- but we still are, that's what's important!

I have not managed to quit smoking-- still having 2 or 3 cigarettes a day-- but I did stop drinking completely, and it's been a few years since I did this. Will see how it feels for a month or two at least. I think I drank too much in NY after my mom died. The first night I stopped was dinner with my wife's boss and his wife-- pretty high stress-- and the second night was a three hour punk rock rehearsal with almost no breaks.

It's only been a few a few days, but it's always really interesting to do this. One thing that fascinates me is that I always expect my headaches to get better, but they never do. I know that having two or three drinks a night could not possibly cause the eye problems and headaches I have, but I always falsely blame my bad habits for this. There is no improvement at all--- zero, zip, nada. My tears are still like soap suds, very Sjorensyish.

My sleep is now terrible-- I wake up five or six times a night, but that should pass in a week or so. The brain fog is just as bad as before-- so far. Again, zero improvement.

The big plus, however, is energy and affect regulation. The high energy periods are just as high, but don't feel as crazy, and the lows are definitely shorter and not as low. And I still need a nap three or four days a week, but I do not need nearly as much sleep-- like, two hours less per night. So we will see if this lasts.

Memory is better as well. The rehearsal went very well, my fingers, wrists and hands felt very strong, triceps were holding up incredibly well, this material is like the Ramones or Buzzcocks or something, and fast-twitch muscle response was greatly improved. (We are all over 50!) I did take Rhodiola a few hours before the session. Our lead guitar player tried to push a few beers on me, but the vocalist really snarled at him, like, "He's doing this really well on the straight edge, why f*ck with his state of mind if it's working?" Used no cannabis either, of course, though there was plenty at the session. I did experience some auditory disorientation-- it was like the driving disorientation, but didn't know where I was in the arrangement-- but I could recover and cheat when necessary.

Just drove 45 miles from a workshop and rain and terrible fog, and my eyes are totally fried, can barely see. Reflexes were good, kept up a good conversation with classmate, but the headache was brutal, incredible disorientation and disassociation. All navigating had to be done manually, double-checked by left brain because the spatial part of my hippocampus was, like, burned out with a soldering iron. It was kind of scary. My leg and head were very bad during the workshop today, the chair was just murder.

CPA, great post about men with MCTD-- I forget which thread it was. I do not do Facebook, but I am very interested in that MD's opinion, because it is so similar to our anecdotal observations here.

Okay, time for my nap! Great to hear from everyone.

--Cat