Happy New Year! How does one know if they're having a bit of a flare or coming down with something... cuz I don't!!! Moved to another state recently and need to find a new rheumy! Scary!

Hi friends,
Today is my first official day as a part time employee. It feels weird! I got my first job as soon as I was old enough to get a work permit ar the age of 14. Now I'm 38 and worried about the reflection on my work ethic! Here's to a grand 2014 that is steering me back to things that bring me true enjoyment :)
Tricia

Saw the new rheumy today. He spent about an hour with me. Gave me a pretty good exam. Drew 8 tubes of blood and had me pee in a cup. He was very through. Diagnosis? UCTD. Said the RNP can be present in other autoimmune diagnosis as well as in MCTD. As with my last rheumy, he thinks I have lupus or will develop Lupus. Did not change anything, but did advise me to take probiotics daily, keep taking all my suppliments, exercise and change my diet. You know, eat more fruits and veggies, no processed food, stop eating gluten, ect. He asked me about artificial sweeteners and was happy I did not eat them. He looked at the rash I have on my face and advised a dermatologist. He thinks it is Lupus, but could be rosacia. I think I have both. Funny thing is, he is the only Dr to ever see it. I cannot get to the Dr when I have it. If I want it to go away, I just make an appointment! LOL!
I had a pretty good bit of pain in most of the trigger points he touched. Jumped off the table when he pressed my hip! I get the results back in a week or so and see him again in 3 months. I think he will work out.
Dazzle- I sometimes think I have a flare only to find I am coming down with a cold. I think I am getting something only to have it come to no illness, just fatigue, swelled glands. A flare. So, I am not a good one to ask!
Tricia- Working part time kept me in the workforce for much longer than I would have made it working full time! Use the extra time to take care of yourself!
Mary Ann

Ahhh, swallowing problems. My dysphagia has been on a rampage the last week or so. I have been given Valium to help with it, but it does not work anymore. Wine helps, but I have to struggle to get that down too, and I can't have wine with breakfast or lunch! I got a salad last week and it took me 3 hours to eat it, and never actually finished it.

I have had every swallowing test in the book to no avail. All tests came back negative and no doctor has an answer. GRRRR!

I am supposed to take probiotics too, but they are so damn expensive.

I too never get to the doc when I have a rash, swollen eyes, whelps on my body, etc. I take lots of photos.

Started with a CPAP for sleep apnea last night. It went OK. I somehow managed to disassemble the entire thing at some point in the early morning. I am hoping it will help with the fatigue.

Happy New Year to all and may we all feel better! Cheers!

Gabrielle

I want this year to be better for me...and for all of you too! But it's not starting out all that great. I can't seem to "entertain" for even a small amt. without paying a huge price the next day. Then I stress from the flare itself....and now I have a damn cold or something like a flu.

Ah, the old ripple effect. I cried myself to sleep last night out of pain and frustration. I feel like I have the mind of a 20 year old and the body of a 90 year old. (I'm 52...in the middle). Anyway, so much hurts and I can't help but ccomplain. (or can I). I'm just sick of hearing myself..

Actually I'm sick of feeling this way. Anyone else?

Nancy

I hear ya Nancy! I'm tired of the pain! the confusion, brain fog. I'm working and trying to take care of myself, going thru a divorce. Lost my mom a year and half ago. She was my support! I thought this could be a better year and maybe a year for me but it is just one big flare up. I live on pain pills just to deal with daily issues and double up so I can work. I am tired of listening to myself also!! I try to stay positive but dealing with this much pain daily and living on pain pills sure takes a toll on you. I am keeping my fingers crossed that it can only get better!!! Living in a new state and trying to find a rheumy to help me through this flare up. If anyone is in AZ and can turn me onto a good rheumy I would really appreciate it! May 2014 bring us all a better year with less pain!

Today I went to the gynecologist. Everything was OK down there but she listened to my lungs. Says I have pleurisy! I am a little short of breath, just cannot get a deep breath. This is new. Guess I will call the rheumy tomorrow to see if I need to do anything right now. The gyno seemed to think I could just wait and it might just get better. I have felt this way before and it did get better. I would like to know if my sed rate or CRP is up. It never has been before. Hmmmm.
Mary Ann

Mary Ann...You probably should see a pulmonologist and get your lungs THOROUGHLY checked out. MCTD can be very serious if you have a tendency to get inflammation of the lining of your lungs. Please please get it checked out very thoroughly. It's important!

Best,
Nancvy

Went to the Dr. Saw a PA. She could find nothing wrong. Well, I will wait a day or so and if I dont feel better, I will make an appointment with the DR! The Dr is off tomorrow.
Meanwhile, I was in the bedroom, talking to a friend on the phone. I walked out to the living room and saw a car backing down my driveway, fast! I walked into the kitchen and the outside door was open. I had a nice talk with the county sheriff and the local police chief. An officer came by. But, they were long gone. Cannot find anything missing. I think they heard me and ran- Thank God! What a day!
Mary Ann

The rheumy said all my labs were normal. Am I crazy?
Mary Ann

omg MaryAnn..what a time you are having! I hope you feel better and I also hope nothing turns up missing from your house.

Started the new year with a cold and extremely cold weather, I hope everyone stays warm and toasty!

MT, no, you are not crazy.

My understanding is that pleurisy can come and go, kind of like pericarditis, and responds well to steroids, which I can't remember if you are taking, but I think you are not on them at the moment. I do not think this is one of the most dangerous symptoms of MCTD-- it's not one of the pulmonary symptoms that signals a major change in disease progression-- but I am not sure.

I am surprised they didn't just put you on a little whack of prednisone to kind of calm things down.

Please hit us back and keep us posted. Glad that nothing was stolen!

Nancy, I am sorry that you are having a rough time. Physically, I am actually doing extremely well right now-- but mentally, I have not been the same since my last flare, or when I was on Flagyl, I cannot figure out which. My predominant mood is depression mixed with anxiety, and I just can't shake it. I am seriously considering joining the Bipolar support group.

GA, yeah, the dysphagia for me is really, really bad. The only thing that helps is getting so much exercise that I am starving, and therefore become patient enough to chew and swallow food. But

--Cat

I am still on Medrol. The new rheumy said he did not want me on stronger stuff at this time, but thought the Medrol was keeping things in check. I am breathing better, so it must come and go. Next time I have the shortness of breath I will get to the Dr pronto and see if I can get this sorted out!
Now my heat pump is out. The repairman came yesterday and had to order a part. It was in the low 20s last night- got about 60 in the house. Our fireplace is helping.
Went to get my Medrol refilled today, they cannot find the prescription! Guess I will call the DR! LOL! I think the cold is affection everyone! Well, this is not the worst thing in the world. I have enough money to pay for the repairs, Medrol to do me for a week or so, the weather is getting warmer, I didnt get robbed, and no one in the family has the flu! (It is rampant here) Life is good.

Cat- I hope you can figure out what is going on with your mood. Does not sound bi polar to me. But this is more your field than mine. Are you sleeping and getting enough light for this time of year? I know we need to avoid the sun, but SADD is certainly a problem this time of year. Anyway, thinking about you.
Mary Ann