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Sweet

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  1. Hello my friend, Remember, one day at a time, otherwise everything can be so overwhelming. I had myself in the grave many times to find out it all wasn't so bad. Easier said than done, but don't worry until there is something to worry about. And even then I find out it wasn't as bad as it was in my mind. :)
  2. Its always frustrating when you feel you are not being heard. The relationship between you and your doctors are oh so important. I've been known to fire mine and move along to one I have better communication with. It's your life, your body and your dime. Remember they work for you. :)
  3. Hello Windnsea, I've been diagnosed 18 years. Plaquenil was the first thing my specialist put me on. He told me it would help with pain, fatigue, and has the ability to slow down progression, and in a lot of cases halt the disease at the level a patient is at that time. It has helped A LOT with my symptoms. Since I don't like taking meds at all, at one point early on I decided to cut my own dose. BIG mistake. Within a day or two I could barely move. My fatigue, and pain came back with a vengeance. I went back on my normal dose. In the past I've had a very busy schedule and on rare occasion I would forget to take my dose. I knew very quickly because of how my body felt. Standard dose is 200. mg twice a day. I guess I would ask why your doctor wanted to decrease if it was helping.
  4. Oh wow good article Shelley thank you!
  5. Hi Cathy, I'm sorry to hear of the chest discomfort you are having. , it could be so many different things. The body keeps us wondering doesn't it? It could be costochondritis. Check the link and see if that sounds like what you are experiencing. It could also be a simple matter of your back being misaligned, or tight muscles. Do you do any stretching? One thing I notice is due to my pain, I can contract all into myself. I have to remember several times a day to relax, stretch back my shoulders. I lay on the floor and do other stretches which can help.
  6. I would take a look around at environmental type things. Anything new you're eating, cosmetics, hairspray, chemicals, or do you live in an area of farming land and orchards that may be spraying? I grew up in the city, and later on moved to a rural area. I have NEVER had sinus issues in my life, but do now and no I don't think it has a thing to do with my Scleroderma. But when I moved here it seems everyone has "allergies". I inquired about it and one doctor told me "If you live here long enough you'll have problems too" (because of orchards and all the blooms, chemicals that go along with). As we get older things can just change. I would be really surprised if your sinus issue was related to your diagnoses, but weirder things have happened! But I do know how frustrating, and annoying it can be so I'm sorry you are dealing with it. I would ask your ENT what you can take to help, and then follow up with him/her after you've tried the treatment for awhile. I say this because that is exactly what I did and I wasn't getting better, so they did a sinus CT and guess what? I had a huge FUNGUS ball taking up the entirety of my right maxillary sinus. I had to have surgery. I am a nurse, so I do know a little bit about what I'm talking about. haha, but I hope you can get some relief I feel for you!
  7. Hi Edoyle, I'm so very sorry to hear of your daughters possible diagnosis due to her lab work. As Jo mentioned, it doesn't necessarily mean she will develop CREST. I'm super happy to hear however that you are seeing a doctor who specializes in this! Please do keep us posted, and much love and support to you.
  8. Hi Brenda! Welcome! I'm sorry to hear about your diagnosis. Personally for me yes the digestive problems come from Scleroderma. It's a tough one to manage for me.
  9. Hi Quiltfairy, I'm sorry about your results. I certainly don't mean to belittle your situation, but something Jo said reminded me of what I do. I ALWAYS imagine the worst lol The outcome rarely comes close to my crazy imagination. I do this thing with myself when overwhelmed with the unknown. I play "What's the worst thing that can happen?" When I get down to the brass tax of it all, and how I would deal with that worst thing, for some reason, I relax. I realize no matter what it is I can get through it. I'm a strong person, or used to be... So many changes in my life this past couple years, personal and health related. My life as I've known it, isn't my life anymore. Acknowledge, process, adapt and let it go. Easier said that done, but that's the only way I can get through, because as you know many don't get where we are coming from. Love ya!!!
  10. Congrats, you rock my dear!!!! We so appreciate all that you and Shelley do!
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