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RememberingToSmile

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About RememberingToSmile

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  1. Hi - you have to discuss with your own Dr of course... I have diffuse form and my rheumatologist advises against my getting or my husband getting the vaccine. I've had shingles multiple times - the first being the worst. It's horrible, but there are some effective meds for it and the post-herpetic pain. The key is recognize it early. Just my experience... Best of luck!
  2. When my primary doctor and I decided to contact Hopkins, she told me she would fax all the information to them, but to go ahead and do it myself, too. That way there would be less of a chance that all the doctor/lab reports would be lost or misplaced... Good luck and stay strong. RTS
  3. Congrats! I heard a phrase recently and I think it could apply. "Be Confident, but not recklessly Confident" Remember - be confident. Embrace the pregnancy and your family with love and optimism, but (like you are) seek high risk care and follow expert advice. It's exciting to move ahead with life, and not worry about numbers that show up in your blood-work and the unknown. Lucky you. -RTS
  4. Hi there, I am sure you'll get a lot of sympathy and good suggestions on this issue! I find the only thing that works with my feet, ankles and knees is to get myself into the warm therapy pool at my gym and walk forward, backward, and sideways until the joints and tendons are fully worked. I then spend time stretching, but the sideways walking recommended by my PT really makes the difference from what I do daily at home. That and taking my acetaminophin at least an hour before I get out of bed in the morning are my favorite self-care tid-bits lately.... I look forward to reading the other responses. -RTS
  5. For my IVIG weeks, I make sure and drink plenty of water before and during the infusion, I take my Tylenol before and during the infusion, and I make sure to get up and move around (with IV pole in tow) a couple times during the process. Moving around keeps me less stiff and keeps circulation going. I rarely have headaches - but if I have a cold or don't feel well in general, I make sure and take the benedryl they offer as preventative. I hope you find a strategy that works for you, and I hope the IVIG does you good. My schedule has been 1 week IVIG (5 hours at clinic) then 3 weeks off. I feel the effects the most during the second week off. I was lucky and started feeling the benefit after the first treatment week. However, it seems everyone is different. -RTS
  6. I hope you are able to get the surgery out of the way - as soon as possible. I've had a couple small surgeries since diagnosis. The only thing unusual for me was slow healing of a scar where my skin is tight/affected. My doctors were cautious, though. Had to have lots of heart and lung tests before-hand so they were confident they knew my state-of-health. I am curious to hear what others have experienced. -RTS
  7. Hi Lorie- Were you diagnosed with both scleroderma and lupus? Do you know what type of scleroderma? -RTS
  8. It is a good question - At the start of this, I found it very scary to read that there was no cure. However, now I realize and have read about many other common diseases where there is also no cure, but are well controlled with medications, etc. I try to keep that perspective and stay confident mine will be well controlled (if not this month, then the next) -RTS
  9. Just a quick comment.... Ankle swelling (and shortness of breath) is a good example of what is so frustrating about this disease. Is it the disease.... side effects of the medications.... not enought stretching/exercise.... diet, too much salt.... or something new and completely unrelated to scleroderma. I am glad to hear your doctor has ideas - keep us posted. -RTS
  10. It is good to hear the good news! So - I assume you have no regrets. -RTS
  11. Just thought I'd get my late thought in here.... I enjoyed reading all the earlier posts. My favorites have already been touched on - electric heating blankets in most used rooms, chemical heaters for hands, pockets and toes, and something to warm the wrists. * I have a series of large heating pads with auto-shutoff by favorite chairs, couch and bed. Also, I found a little plastic device at an assisted living website to attach to the plug which makes it so much easier and less painful to plug the cords in/out. * Chemical heaters are must for me, even in the summer when I get caught out unexpectedly in the air conditioning. * I haven't tried the heat bands lately; Rather, I am always putting a cut-off trouser sock on my wrists for warmth, to keep the breeze off, and to hold the chemical warmer when needed. One last thing, though. I am sure to talk to my doctor when getting cold becomes too bad. He's adjusted my medications for the Raynauds and is watching the anemia closely - which has been contributing to my "chill" lately. -RTS
  12. For dealing with chronic pain and fatigue (and stress) - there have been lots of postings about the benefits of stretching and yoga. I am wondering how people go about it - Have you joined a class or go solo - in or out of the therapy pool? Do you practice it at home - with dvd/tv, music, silence? If you go to class, was it hard to find one you felt comfortable with? Mostly, I have been stretching in the therapy pool by myself or with whoever happens to be there at the time. Sometimes I worry that I am isolating myself too much and would benefit both from the company and discipline of a scheduled class. Also, I was at a demonstration recently of yoga for people with chronic illness. It was terrific, and it was clear the instructor understood chronic fatigue - but I did not get the feeling that the instructor really understood physical limitations of something like scleroderma, arthritis or myositis.... Any thoughts? What works for you? -RTS
  13. Hi There- Welcome - and sorry to hear about your long ordeal. I have significant Raynauds, but am lucky not to have had any new ulcers in the last 2 years. Of all I've experienced, I'd say the ulcers were the most painful to experience. I always say - the three things that have brought me to tears in all this were (1) the ulcers (and mine were not severe like yours), (2) when fibrosis (tendon rub) hit my achilles tendon, and (3) the intense skin burning (I have diffuse form) before I got on the right immunosuppression drug. Keep up the great attitude and I hope you find ways to keep from "bumming out" Music works wonders for me, as well as keeping informed (lots of information on this site). Also it has really helped me to meet others with this and other chronic diseases to see how they are coping. It is amazing how differently people handle pain and vulnerability. I look forward to hearing more of your stories and experiences. -RTS
  14. Hi All- Just a quick update - After just over 2 months, I am finally getting used to my port. We aren't completely comfortable with each other, yet. It hurts some when I bump it, but no more sharp or pulling discomfort. My skin is still quite taunt across it, but the incision has healed nicely. It has made the last two IV infusions do-able, although I still have them try to draw blood directly from a vein before using the port. -RTS
  15. Interesting... I was always told the 6 minute walk was more a general, non-invasive measure to track ability and state-of-health. It can throw up a red flag for lung function and PAH, but is not specific for it. To me, it seems to be an easy and inexpensive way to track activity level.... Maybe they address this in the full text. -RTS
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