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Everything posted by marsha

  1. Shelley, I am so very sorry for the loss of Gene… May you be wrapped in the warmth of the many wonderful memories Marsha
  2. Hello Everyone :D So far nothing on the gloves! Hopefully I will hear soon, as it would be amazing to know stuff like that to keep us warm can be covered or a percentage can be covered for us who suffer so. I will keep you all posted when I get more information Marsha :emoticon-hug: :emoticon-hug: :emoticon-hug:
  3. Hello Everyone!! I hope this winter is finding everyone healthy and warm. I have a question for you all, my Raynaud's has been insane this year, even with my mitts and hand warmers I'm having attacks. I found these gloves in an outdoor store and they are 200$. I called the insurance company to see if they can help with a portion or all and they need a procedure code in order to do that. Has anyone had any dealings with this? Is this procedure code something that is easily attainable? I go see the rheumatologist on Monday but would like to have all my ducks in a row so he can prescribe them for me and have the procedure code ready if at all possible.. Take care and talk to you all soon. Marsha
  4. Joelf, I actually talked to him last week and he said to give the plaquenil 2 weeks to see if it does improve my Raynaud's and if it doesn't he knows of a specialist in Worchester, MA who specializes in Raynaud's. I think I should have him refer me, just because it could take months to get into this Dr. I am keeping my hopes up on the plaquenil and will give it the full year he wants me to. Thanks for all the kind words… Marsha
  5. Well it's been a couple of weeks, and I am right back where I started from.. :( my Raynaud's is so bad that even with hand warmers and mitts on, my hands are hurting and blue. I live in northern Maine and winter hasn't even officially started!! What am I going to do for another 5 months… I actually have to bump up to two pills starting Thursday. I hope it will help. I know my Dr. said it takes months to really feel the effects of the medicine.. I will keep trying. Keep you all posted Marsha
  6. After much procrastination I have started the plaquenil and so far so good, no side effects and actually the joint pain and inflammation in my right hand is a bit better :) I am hoping it will keep getting better and better. I will keep everyone abreast of my progress :) Warm warm hugs Marsha
  7. Sweet I have not started it yet I am planning on starting on Sunday… I have to admit I have been really nervous about it. I will let you know as I get started. Thanks Marsha
  8. Miocean, I totally get your post!! I think we are all tired, and what is worse in my case anyways.. I "LOOK" healthy. so people don't always understand that there is anything wrong with me. People just don't get it. My closest friend the same one who's Mom has been harping on me, has been seeing a gastro and she said she mentioned my issues to him yesterday and he most times sclero patients have SIBO she should be tested for that. Then you have the sclero specialist I saw in Boston who looked at me and said, your scleroderma is going to go away and you will be all better… Then the next one I saw said, No, it doesn't "go away"; you may get some relief no one knows. Its just really really frustrating for all of us suffering with this awful illness. Warm Hugs and healing vibes, Marsha
  9. Amanda, Jo and Eve... This is what I was thinking.. although I do have some gastro issues I have done a "sort" of elimination diet. and there is no rhyme or reason to my bouts of "Gotta Go's".. I never have pain or discomfort. My gut really tells me that I do not have celiac. I think what I do have is some issues due to my disease, and now with the addition of the Sjogrens and what I am reading about that it all makes sense. This is what she said to me: "Please speak to your Sclero doctor about being tested for celiac and his thoughts about a gluten free diet. Apparently its huge in the way people with Sclero and Sjogren's are affected. They found a connection between the disorders and wheat. Having both is a huge clue that you need to get rid of wheat-- at least, it definitely affects the symptoms. This came up at our meeting on the 19th and that's what the doctor said, the one who spoke to us. Doctor also said to the person at the meeting who asked-- they need to be tested for celiac." This is from someone who has become obsessed with Celiac. I guess I just don't know how to handle her, this is a constant thing with her.. UGHHHH
  10. Thank you all, I was just concerned that this woman keeps pushing to me that I "MUST" be celiac and therefore if I go gluten free all my issues will go away.. The scleroderma and Sjogren's will disappear and I will be a healthy "young" woman again.. I just feel like that is all poppycock.. but maybe I'm wrong.. I am a lot.. Marsha
  11. Hello all another day another question, My friend's Mom has celiac disease and was at a seminar. Whom ever spoke at this seminar suggested that there were studies that show that celiac is the cause of the diseases and many of the symptoms of scleroderma and Sjorgren's. Does anyone know if this is true? She is pleading with me to get tested, and to go on a gluten free diet. I just had a bunch of lab work done and I am going to call the doctor tomorrow and see if it is too late to have celiac test ordered just to rule it out. I guess I am very confused about this. Does anyone have any information on this. Thanks so much Marsha
  12. Thanks everyone, Its so nice to be able to have questions and get such great feedback… Thanks
  13. My joint pain and muscle aching is mostly contained to my lower body. Thighs, hips, ankles. I would call it real stiff and achy like a tooth ache.
  14. Does anyone have any experience with Plaquenil? I have an eye appt. on Tuesday to check my retinas and then if all is ok I am supposed to start it. I have to tell you I am a bit nervous I hate starting any new medications. Just wondering what the consensus of this drug is amongst users. Thank you
  15. Thanks everyone, Amanda, I am on the look out of a good belly doctor but I am sure finding one with Sclero knowledge is probably going to be very difficult! I will trudge on and get it done. I guess I am a bit scared to know what is going on, but there is no ignoring it anymore. I HATE this disease!! I'll keep you all posted on my findings. Marsha
  16. Thank you so much Judyt, I appreciate all the information. I am going to pull my big girl pants up and find someone to see . I will start my search on Monday. Hopefully I can find someone and get in swiftly, and hopefully get some help for this. Its really starting to affect my life. Take care Marsha
  17. Good Morning All, I have been having some issues for about a year or so but lately they are really getting bothersome. I seem to have some gastro issues. I never have solid movements, and a lot of the time I have a "gotta go" urge. I told my rheumatologist and he suggested a gastro doctor but as always I just never followed up. I am not sure why that is. Well over the last few weeks the urges have gotten worse and I have even had an accident last night, its like I cannot hold it. The question is this. How common are issues with the belly? Is it a hand in hand thing? I've done some research but things seem to be so vague. Also I have been recently diagnosed with Sjogrens, which explains my extreme thirst. The past two days the exhaustion levels are beyond imagination. I can barely walk across the floor and my Raynauds is off the charts. 75 degree days and my hands are blue. Tell me this is normal for us dealing with this dumb disease. I see the sclero doctor at the end of this month and also my rheumatologist. Thanks as always for letting me vent. Marsha
  18. Oh miocean, If you ever come back this way please let me know, I would love to climb with you!! a fellow scleroderma'er!! I get to gaze at that beautiful rock every day, I am truly blessed
  19. I hope summer is finding everyone in good health and spirits. I accomplished one of the hardest things I have ever done in my life. In my state we have a mountain called Mt. Katahdin, I have for years (prior to diagnosis) wanted to climb it. This year I set out to do the unthinkable and climb the 5,600+ ft of it. I embarked on my adventure with my daughter (14), niece (13), nephew (27) and my sister-in-law. I soon learned it was going to be a excruciating climb, and felt like giving up 1,000 times over. I hit my wall (the place where you try and convince yourself you CAN'T do it.) I pushed through and I made it to Chimney pond 4 hours later, albeit chimney is only half way the base of the actual mountain. It is a 3.3 miles one-way Elevation gain of 1,425 feet. I thought that I would be disappointed to not reach the summit of Katahdin, but I'm not. I now have something to look forward to. I plan to keep hiking, maybe a new passion?! I'm not sure! If I can figure out how I will post pictures. Have a wonderful day. :)
  20. Msjess, I have an amazing vascular doctor, she has coddled to my every need. So much so that she really wants me to move from Maine to a warmer climate because of the severity of my Raynauds. I am a firm believer in not all doctors are for everyone, if you do not care for the way you are being treated try to find another one who will listen to your concerns and take them into consideration! I hope you are able to find out exactly what you are battling here. Warm hugs, Marsh
  21. Buttons, I am so sorry. I just had to deal with that a couple of months ago, shingles is no easy battle. After you got them the first time did you have the shot? I am supposed to go and have that soon and I was just wondering, cause if you did and they still came back then I would definitely think again about the shot seeing its over 200 dollars and insurance will not pay for it because I am so young. Feel better soon
  22. Thank you Amanda for answering this. I have wondered this, from what I read and what a "specialist" has told me recently it seemed I was going to get "all better". I will tell you my fatigue is off the charts and joint pain and of course the swelling. ERRRG...there is so much misinformation or maybe its just that its relayed wrong. I'm not sure but thanks again for your insight! Love ya guys,
  23. I saw the rheumatologist and he thinks I have Sjogren's as an overlap.. YAY!! I have been having issues with extreme thirst and dryness. The sclero doctor in Boston believed I had it. So more testing and a trip to the gastro doctor seeing I've been having some belly and bowel issues for the last 6-months.. WONDERFUL... I did ask the rheumatologist about the UV light treatments and he has never heard of it. I will have to see what the doctor in Boston thinks.. Hope everyone has a great holiday weekend!! Marsha
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