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Sweet

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Everything posted by Sweet

  1. Hey Janet, I get the feeling of being unreliable. I always have the best intentions, and frankly 95% of the time, my plans don't carry out. But thats OK. I used to be very hard on myself. Now I figure "it is what it is!" Nothing I can do about it, other than be kind to myself, and stay on the positive side as much as possible. Which is my natural inclination so that helps. I know there is no cure for me, but I won't waste the rest of my days, letting Scleroderma be my life. I have Scleroderma, I am NOT Scleroderma. I rarely talk to people about it because most don't understand. But I have a small tribe that literally hears about all of it, and they understand. It's taken me 18 years to get to the comfortable spot. Give it time, don't overthink it, and try to go with the flow. As far as cost, I couldn't tell you about that. Our healthcare is so much different than yours. I have insurance, good insurance, and although I pay the monthly premium, I never have any doctor costs because my insurance pays for it all. I believe we have at least one member here from OZ, and I hope they see this post, and can chime in, and give you some info. Don't "what if yourself to death" , just take one step at a time, and seek help, and answers one small step at a time. :) I will try to wrack my brain on what the name is of the member from OZ. Maybe we can get you connected.
  2. Angelique, You are so welcome, and I will look forward to hearing about your follow up. Have a wonderful weekend!
  3. Hi Janet, Reading your post made me very sad, because there is hope. My heart goes out to you. I have to say I'm disappointed in your doctor. Here is a link to a specialist in Australia, and I hope it's different than who you are seeing. If it's not, I would find another Rheumatologist. Scleroderma is rare, BUT symptoms vary from person to person. There is no blanket list of things you need to have or tests. I feel your doctor is doing you a disservice . Don't give up, see another doctor that you feel is listening to you and that you can communicate with well. I will also suggest finding someone to talk to. A trusted friend, a counselor. Just talking to someone can help so much, to wrap our minds around things, and reasons to push forward. Please keep us posted, and much love to you.
  4. Hello, Welcome to the forums. I'm sorry you are experiencing so many symptoms that are hard to explain. The nature of any autoimmune disease can vary so much from person to person. First of all it's good you are seeing a Rheumatologist. Often times, it becomes test after test to rule out different causes, and more often than not, we don't get solid answers. Easier said than done, but try to go with the flow, and let your doctor work through the process. It can actually take years to come to the proper diagnosis, if any at all. I know that's not encouraging, but it's the. nature of the beast. Are you on Plaquenil? I am, and it has caused the pigmentation problem you mention. I was told its from that. I'm very mottled. I was also told if I went off it, it would go away, but that's. never gonna happen. LOL On the swelling versus tightness, the skin gets thicker so that would account for your rings not fitting. I have had mine sized a few times, and actually had a new band put on the opens and closes and is adjustable. On the ultrasound, he/she could be looking at bone structure, as the hands can change with CREST. Here is a link to CREST syndrome that might answer a few of these questions for you. Muscle pain is often associated with scleroderma. Symptoms will come and go, leaving you feeling like you're going crazy, but I assure you, you are not. Keep us posted on your progress. :)
  5. Hello, I'm so sorry to hear about your wife. Here is a link to Scleroderma Experts. There doesn't appear to be one in your area. But a good start is to find a Rheumatologist. I would suggest the U of WA.
  6. Hello my girl! Just wanted to give you a big hug for being the brave one you are!
  7. 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. :)
  8. 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. :)
  9. 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.
  10. Oh wow good article Shelley thank you!
  11. 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.
  12. 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!
  13. 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.
  14. 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.
  15. 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!!!
  16. Congrats, you rock my dear!!!! We so appreciate all that you and Shelley do!
  17. Welcome to our family!
  18. Just want to send you a little love and a hugs. You're not alone. We love you.
  19. Hi DRainey, I had to look that up because I've never heard of it. I know several that have been on plaquenil without issues, and I myself have been on it for 18 years. No problems. The main concern with plaquenil which I'm sure you know is it can cause blindness, so getting a baseline eye exam and then repeat exams every 6 months to 1 year are critical. Again no problems for me at all. My rheumatologist's nurse has been on it for 30 years. It works wonders for me so I sure hope I never have to go off of it, or I would never be able to get out of bed.
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