Hi All,
I haven't posted in a while. I am doing better overall. The Plaquenil really has helped the joint pain and stiffness. the fatigue is much better too. I still have the swallowing problems (which my rheumy didn't think was related) BUT she referred me to an ENT who did a scope and said I had swollen vocal cords because of the reflux and was referred to an gastro doc who has scheduled me for a esophogram and an upper GI scope. She thinks it is all related to the MCTD. So I guess the rheumy focuses on joint pain and stiffness and all the other symptoms go to other specialists.
It would be nice to have a one doctor fits all but that seems very unrealistic. So now I have a rheumy, ENT, gastro, ophthalmologist, primary care and a dermatologist. Most added since I was diagnosed in August. For some reason I am finding this amusing this morning.
The hardest thing for me right now it trying to figure out if a symptom is related to the MCTD or nothing to worry about. For example I woke up with a sore shoulder and neck. Probably just slept on it wrong but yesterday my knee was killing me so made sure I took my anti inflammatory faithfully, knee is better but now this pain. Related? Guess it doesn't matter but i get tired of thinking about it all.
Sorry about the ramble ...guess i should journal. All in all am doing well. Hope you all have a blessed week and Thanksgiving.

Oh Mary Ann,
The itching could be a food allergy...really hope it isn't a med. Hope it gets better soon.
Terrilynne

Things are ok for me. I am enjoying my time off work, doing a bit of cleaning when I have energy...cooking again....which my family appreciates. I do have bad bouts of depression, one day good, one day bad. It is bitterly cold here -23c and we have a whack of snow. I am also tired of doctors, but whatever. Started Christmas shopping and plan on starting the christmas baking this week. Other than that....just hanging in there. Wish the depression would quit, I don't like it :(

Hey Terri!
So much of what you are talking about sounds like me! The GI stuff, the vocal cord problems, the phantom pain, here one day, gone tomorrow! Then a new pain!.
Went to see the new Harry Potter movie today and all the movement in the movie made me sick. I was way better after I got out of the theater! Imagine, motion sickness from a movie! Cannot go to IMAX theaters. Oh, well.
Itching a little less and no longer see the rash so, maybe the celebrex? I love that stuff!
Mary Ann

I'm doing better since starting the prdnisone burst. Have started the tapering. My breathing has not improved with the burst though, so that is worrisome. Most likely a progression of the fibrosis in my lungs.
My respiratory doc is setting up an appointment with the transplant assessment team for some time next month.....so now I am on that roller coaster.
I am having a lot of ups and downs with this news, trying to come to terms with it, but I think I am moving in the right direction.....will journal more later.
Life has slowed down some with the breathing issues, but I am trying to stay as active as possible and as optimistic as possible.

I hope everyone is well
Beth

i had a splinter, for two days, my hands are in a state from gardening but the splinter hurt.

which was good. great even. it took my mind off all other symptoms, except exhaustion, nothing seems to shake that except the prednisone but don't like all other side effects so most of you know i take it only a couple of times a week.

splinter came out today. am a bit sad about it, it still stings but i know it shall go.

i keep saying ladies, i am not depressed, it is my physical pain that gets mixed up with emotions, i dont know, am on anti depressants for first time in life, dont feel much different, happy with my life, kids, garden, friends just this damn disease so really, cant call it depresssion, just a need for sleep, rest and of course that leads to more introspection.

so, pushing myself in garden, cleaned up the shed yesterday, shade in there might get me doing some potting in there rather than in the sun, have been very itchy, skin a mess, need to drink more water, serious quantities. hate the zinc sunscreen. works but yuck. remember the old days as a kid when put cocunut oil on and burnt til i peeled, several times each summer, freckles all joined up by the time i was 12 or 13 i think.

hope cj is ok......am assuming a 411 is some sort of code, has she answered anyone?

helped out with some election poster sticking stuff for friend who is totally involved in the Greens, working bee, only managed and hour and half, cant handle chit chat, rumours and conversation of any discription these days. did a bit. my motto of late, do a little bit each day, little bits add up, chipping away at the details and necessities of a useful and productive life of some sort. and getting to like pain, theres my challenge.

hope you all have a good week.

Still have the nausea, the rash and the itching as well as a headache. Maybe it is a virus? They are closing schools here due to a stomach bug. Nausea, vomiting and headache, but havent heard about a rash. Might have to give the Doc a call.
Mary Ann

Little off on my days, and for no good reason.
Must be that time of the month, it's hard to tell without a uterus.

Stomach settled after eating mostly oatmeal for a month. Wii now tells me I'm just overweight, not obese. Yeah me!

Went through a battery of tests but they found nothing. Including gluten reaction. My stomach felt so sick and crampy yesterday had to have hubby haul me home. Laid in bed watching 'Killers' for hours on end. (investigative channel here) with my handy, dandy heating
pad. Had 7up for dinner.

Hope everyone has a great week. Lots to do here, will see how much of it actually gets done. Toddling off to work now.

XOXO Teisha

PS Mary Ann, I can not do those Imax theaters either, make me ill and put earplugs in for regular movies. 3D give me screamer headaches.

Hey, folks... sorry to report that it has not been a good weekend. My first real serious flare in a long time-- 101 degree fever (and normal for me is about 97, so at 101 I am practically delerious) uncontrollable chills and shaking, terrible muscle and joint pain.

I keep wondering if it's the damn flu, but of course it can't be, not with no other symptoms. Crap, I look at my leg and I can watch the muscles twitching. Electomyogram would be off the chart right now. Cramps in the thigh, too.

So, I try to rotate between Advil, Aspirin and Vicodin, but the bummer is, the first two just trash my stomach. Had Advil at about 3:00 PM yesterday, Vicodin at 8:00, and felt almost normal until an hour before I went to bed at 1:00 AM. Then the chills started, and I thought, "uh-oh." Took two aspirin at 4:00 AM and two more at around 9:30, and by 1:00 PM today my stomach was in agony. Held on for another couple of hours, and then I gave in and took two more Vicodin. What are you gonna do? Fever is down now, stomach better but still off...

Lela and Oz, I hear you on the depression. (As I've mentioned before, I do think SSRIs and SNRIs are garbage-- they just don't work, the side effect profile is unacceptable, I hate them.)

The one thing that comforts me a lot is having good friends. They don't even have to be with me, they can even misunderstand sometimes... but just knowing they care gives me a lot of peace, and I make a big effort to stay in touch with people when I am feeling good. I usually don't bother them when I am sick, but I think about them a lot. (And "them" includes you guys, of course!)

The dog was terrific today, too. He was not a worry wart, but he did not leave my side. Not for an instant. I couldn't get up to feed him until after noon-- literally couldn't get out of bed-- and he didn't care, it was like he'd forgotten all about breakfast. (And I didn't care that he peed in my slipper last week, which I felt was a little hostile. We'd had an argument about something, can't remember what, it seemed important at the time.) What a pal!

I plan on dragging my ass to work tomorrow, one way or another. We'll see how that goes. I'm sorry we don't seem to be having a very good week! MT, hope the itching resolves and the motion sickness indoors-- yecch, doesn't sound like fun. Terri, I have some of the esophagus issues, but they mostly bother me when I eat dry food. Bruno, I hope those breathing issues resolve, I will be sending positive energy your way...

--Cat

Hey Cat,
Hope the fever is gone and today is a better day for you. So so true what you said about friends. They truly lift us up. Your dog sounds like a true friend. We lost ours last Spring ...he was 17 years old.... Don't think we will get another ...it just wouldn't be the same. Our dog was there through kids illnesses, happy times and sad...quite a good friend. We miss him.
Bruno and Mary Ann hope you are taking things a bit easier too. We all have to remember to rest during a flare and with the holidays coming to be as stress- free as possible. Cat, that goes for you too. Oz, I know you said you are exhausted...I wish i had your energy... You and Mary Ann are both talking about itching I am wondering if it is a symptom of the MCTD. I itch too. Thought it was the Plaquenil but it doesn't get worse just seems to be there.
Hope you all are blessed today.
Terrilynne

Thanks, Terri. Fever still here, but down to 100 from 101. I don't like having one this long, it's unusual.

I am so sorry about your dog, and I understand about not wanting to have another one, but... every dog is different, part of the joy is that they are not all the same. And so many need good homes... I think I always want to have a dog.

I feel like Z is sort of... examining me every few hours. He'll kind of walk on my stomach, see when I yelp, smell my breath, lick my feet... it does feel like he's running through some kind of assessment protocol. Maybe he can figure out something the doctors can't!

Hi gang, still sort of new here but wanted to throw in my 2 cents. I am really having a good deal of jt pains and stiffness but probably related to the fact i have been decorating and cleaning for about 5 days straight plus still working and keeping up wtih kids and hubby! Looking forward to a visit with my parents who will come in from PA some time tomorrow. (I am in AL so don't see them often) Starting the holiday season with my children's Bday party, they were both born on 12/3 one in 99 and one in 01. So we celebrate with family this Friday and then saturday a day out with their best friend. Hope everyone is doing well!