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...
Good morning to all of you. Raining here.
I am in my jammies at 9 in the morning and it feels good!
I am off Celebrex for the 3rd day and dont feel too bad today but had 2 rough days. Next week I have the steroid injection in my back and maybe I will stay off the Celebrex. We will see. If the pain is bad enough I will go back on it, but my stomach is a mess and I would like to give it a rest.
Am done with the antibiotic and the bladder trouble is back. Sigh. Not sure what to do. Guess I should see the Dr again, but I am tired of that. And, the antibiotic was not good on my stomach either. Wish I could get a break.
Fighting with the school again. We have these meetings, map out a plan, then the plan goes in a file and is never seen again. Sooooo frustrating.
I went to pick up the textbooks that were to be at the front desk for me, and they wernt there. I had to ask the principle as the secretary had gone home. He called the advisor who promised them to me, and he was at home already and never had gotten the books. Now he is mad at me for "reporting him to the principle" and still no books. Seems the school doesnt have enough books for all the students. Some are on order and school has been in session for 2 weeks. Of course school had been out for 10 min when I went to the office. The office is to be open for 45 min after school is let out. Now the principle is getting on everyone for ducking out early. All my fault! There are over 900 kids in that school!! I was even nice about the whole thing. Maybe I should have been the bitch from hell!
I wish I could get the stress in my life under control. Signed up for a bible study class in hopes that I could get some serenity. Meditating doesnt seem to help. I open my eyes and everything comes back. Now I am wondering if the class is just going to add more stress. Oh well.
Anyway, my job looks secure! We combined with another program and were worried we would not get enough customers to cover staffing costs. Well, that fear was bogus! I have never seen so many people in my life! It has been very hectic this week, and tensions are running high. But I think that will level out in a few weeks.
Hope everyone is well and having fun. I will think of you when I am playing Putt-putt golf at the mall tomorrow. An indoor course- How great is that!
Mary Ann
I am in my jammies at 9 in the morning and it feels good!
I am off Celebrex for the 3rd day and dont feel too bad today but had 2 rough days. Next week I have the steroid injection in my back and maybe I will stay off the Celebrex. We will see. If the pain is bad enough I will go back on it, but my stomach is a mess and I would like to give it a rest.
Am done with the antibiotic and the bladder trouble is back. Sigh. Not sure what to do. Guess I should see the Dr again, but I am tired of that. And, the antibiotic was not good on my stomach either. Wish I could get a break.
Fighting with the school again. We have these meetings, map out a plan, then the plan goes in a file and is never seen again. Sooooo frustrating.
I went to pick up the textbooks that were to be at the front desk for me, and they wernt there. I had to ask the principle as the secretary had gone home. He called the advisor who promised them to me, and he was at home already and never had gotten the books. Now he is mad at me for "reporting him to the principle" and still no books. Seems the school doesnt have enough books for all the students. Some are on order and school has been in session for 2 weeks. Of course school had been out for 10 min when I went to the office. The office is to be open for 45 min after school is let out. Now the principle is getting on everyone for ducking out early. All my fault! There are over 900 kids in that school!! I was even nice about the whole thing. Maybe I should have been the bitch from hell!
I wish I could get the stress in my life under control. Signed up for a bible study class in hopes that I could get some serenity. Meditating doesnt seem to help. I open my eyes and everything comes back. Now I am wondering if the class is just going to add more stress. Oh well.
Anyway, my job looks secure! We combined with another program and were worried we would not get enough customers to cover staffing costs. Well, that fear was bogus! I have never seen so many people in my life! It has been very hectic this week, and tensions are running high. But I think that will level out in a few weeks.
Hope everyone is well and having fun. I will think of you when I am playing Putt-putt golf at the mall tomorrow. An indoor course- How great is that!
Mary Ann
Mary Ann
My steroids have been lowered for the first time in years, and i also have aluto immune hepatitus, so i'm guessing my liver problem is flaring up again. Tired of feeling sick, and tired of going to doctors.
The thought of living with this illness for the rest of my life is depressing me at the moment. I just want to curl up and sleep and forget out everything. So much has been happening around me, and i can't keep up.
Sorry for being a bit of a downer. Its just hard to feel good at the moment.
Thinking of you all
Love and hugs x
I am sorry you are feeling so poorly. Does sound like a Dr visit is in order. I also take steroids daily. Am cutting the dose and had to stop the Celebrex for a proceedure. Seems any reduction causes pain, headaches and nausea. I feel like a junkie! I think we get used to the drugs, but who wants to feel bad all the time? Please see the Dr. I hope you feel better soon.
Mary Ann
Jaqueline, sorry you feeling poor. I'm going to place myself at risk and sound like a broken record; relaxation, stretches and diet. No alcohol, no smoking, skip the chocolate and MSG. Take B complex, 6 and 12, magnesium and feverfew. Natural ingredients and good diet has helped me over come severe headaches that created nausea. Oh well, this is what works for me. Hope you enjoy the rest. Does every one good sometimes.
Mary Ann has a fun idea P.J.'s at nine. I can imagine myself doing that with a newspaper (just for nystalgia) and coffee.
Hope everyone's week is productive...yes school is starting so business will be improving. Take care all.
CrisD.
The headaches are better, but i am still nauseaus, mostly in the morning. Some mornings i have been quite sick. I am also back at the hospital next tuesday, so maybe they can help out a bit. The drugs i take, cellcept and prednisolone, are really to keep the auto immune hepatitus under control, i was told its the same drugs to control mctd also, but i've never seen a rhuematologist. it was a immunologist and dermatologist that diagnosed mctd, and neither doctors have much experience with the illness.
Thanks chris for your recipe for headaches. if i feel well enough later today i will go to the health store. I havn't heard that before.
Thanks mary ann on your advice about steroids. It is amazing the difference that lowering a small amount of steroids can do. I have only had a couple of good days in the past month. I am finding it difficult to get much done. I start feeling a bit panicky when the days start turning into weeks and i struggle just to do the simplest things.
I often dont want to answer the phone, in case its more things for me to do lol. Strangely people seem to rely on me to take care of their problems too. I don't know what makes them think i am some kind of superwomen.
Thanks for listening to me moaning. I am not usually like this. I think i am so so worn out right now. I will go and make that phone call to see the doctor.
I hope everyone has a good day. Thanks again.
Love and hugs x
ps. marilyn i read somewhere that you had diverticulitus.....my colon perforated 2 years ago. I spent 3 weeks in hospital with piritonitus. Would you mind telling me if you have any problems and symptoms. I am wondering if this is contributing to my nausea. I was told i needed surgery for my damaged colon, then told surgery was too risky......i had a lot of sickness before this happened.
Thanks x
I was just recently diagnosed with MCTD. After going through the normal emotions, I started to research the net and found this wonderful page full of great posts! What an uplifting experience. It's nice to know that there are people out there like me and they live their life to the fullest. I am ready to take this head on. Look out world, here I come! Thanks to everyone! :o)
I am going to wait for now about seeing a rhuematologist until i get to see the specialists in London. i am just hoping it all happens sooner rather than later.
Hi poohsbestfriend....welcome. I hope you enjoy it here. its been a life safer for me. I don't know what i would have done without the people on this site. Looking forward to hearing from you again.
Take care everyone.
Love and hugs x
Jaqui, sorry the saga continues. Ever tried alternate day dosing with steroids? I keep asking about this, and I can't remember what anyone says... brain fog, I suppose.
Dallas, sorry about the weather again, you do seem to get a lot of the bad kind, and I know it doesn't help! MaryAnn, you are just rocking, keeping that job going, wrestling with the school tooth and claw, unbelievable energy.
I did get my mom on a flight to Los Angeles for extended treatment at a nursing facility here-- man, that was scary, she is so weak and the dementia is so advanced-- and brought her dog back to L..A. on the plane. Probably the hardest thing I've ever done in my life, incredibly complicated, staggering logistics and timing, really emotional, too.
I am utterly spent. Have to get up at 6:30 and go to school tomorrow, but just wanted to give a quick shout and let you guys know I am still kicking it. Welcome, Pooh! It's a great group!
Gotta run...
--Cat