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About emmie

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    Senior Silver Member
  1. Hello Eos, I had sympathectomies done, however, mine were radial and ulnar sympathectomies which are located in the wrists. As a result I have two unsightly vertical scars on each wrist. I am not bothered in the least by them because they have given me great relief from almost continual Raynauds. My hands were never warm and the severe attacks came on with such little provocation so frequently that something had to be done. The surgery was done by a hand and wrist surgeon recommended by my rheumatologist. I met with him several times which I feel was crucial to the successful outcome. I had one hand done at a time and yes, you will manage with your "other" hand. I still have Raynauds but, I no longer have severe attacks daily, when I do have an attack the severity is much less and I recover much faster. I do not regret my decision. Best of luck to you! emmie
  2. Shelley, The flowers are beautiful! And they smell so good, too. emmie
  3. It's been a while since I have been active on the forum and wow! Things look wonderful! It will take me a couple of years to explore everything, and I'm not exaggerating that time frame! Although I have not been active, I have checked in from time to time. When I first came across these changes I was totally impressed. Congratulations to the success that all of your planning and hard work have achieved. Everything is such quality--especially the people! Most aspects of my scleroderma have calmed down. Cellcept seems to have helped me a lot: the skin on my fingers, hands, wrists and temples has softened; I have not had a case of the Witchy Itchies; my PFT numbers have improved and the Raynaud's is stable since the radial and ulnar sympathectamies. We are still working on managing the digestive aspects. Right now I'm in the process of having all of my teeth removed due to an ongoing cycle of repair 2; 3 more break down; fix them. Two different teeth will go bad, and they are probably teeth that were already worked on 6-8 years ago. My mouth has become a black hole for way too much $$. I have a healthy dental phobia, so believe me I have been a faithful flosser/brusher my whole life. (In fact, I continue to floss religiously up until the day I lose them.) The problems stem from autoimmune diseases exacerbated by further mouth drying medications. Not a fun process but neither are continual root canals, fillings, etc. Not to mention the fact that my teeth look pretty crummy at this point. Janie, is it you to thank for the articles under autoimmune thyroiditis about encephalopathy? That being my biggest trouble maker, I was so grateful to see this disease that nobody has ever heard of actually covered with some good information. I printed one of the referenced articles to show my doctor in case he doesn't have this one for our appeal to have IVIgG infusions approved and covered by my insurance company. Anyhow, nice to say hi to those of you who have been here since 2005 or so and hi, nice to meet you to those of you who are new friends. Sorry you're here, but ISN helped me learn how to make scleroderma just another part of my life--not my whole life. It's a great place, isn't it? hugs to all, emmie
  4. Hi Ann, I don't post often but have been around for quite awhile and do try to keep up with everyone. Your posts here are waaay too much! It is very ok to say "What more can go wrong?" Give yourself a bit of time there and then move on. But it sounds like you already know that. As for my "tips", I find the type of books that have the crazy things children do or say type thing always cheer me up. If any of the meds you are on make you sleepy, magazines might be a good bet since you can read an article and not worry about missing a key part of the plot. Two other things that I find very helpful are writing about the situation--all the stinky details of it and all of the ugly, self pitying feelings it brings out in me. The last thing that totally takes me away is coloring in a coloring book. It's especially fun if I have brand new crayons and coloring book of my very own! I hope you heal quickly. It does stink that you got MRSA of top of it all. Take it easy and stay rested so your energy is there helping you heal. emmie
  5. I hope your liver functions improve, Clem. If they do, will you begin taking cellcept again? Your doctor will probably want to see them "normal" for at least two consecutive tests, right? Mine got out of whack from a different drug (this was before I was taking cellcept). It took a couple of months before the numbers were back into the "normal" range. My liver functions had gotten quite high before they were caught, though. Why was cellcept prescribed for you? Obviously it was helping you....in what ways? It seems like it is a wonder drug for some people and for others it does nothing. Nosey emmie :rolleyes:
  6. Hi Clem, I'm a poster from a ways back, but very infrequently in the past year or so. I have taken cellcept since June 2005 and have not had any problems with liver toxicity. My bloodwork is done every 8-12 weeks or so. I started at 500 mg increasing to 1000 mg. prescribed for scleroderma. I was eventually increased to 2000 mg for a neurological disease. The only problem I had was that I became neutopenic (completely wiped out my immune system), but liver functions remained just fine. Hope this helps. emmie
  7. emmie


    Me too on all of the above. emmie
  8. As is true with limited/crest, Raynauds was my first symptom. When I developed Raynauds everything was A-OK as far as I can recall--no stress, etc. Other symptoms appeared over time such "sausage" fingers, worsening Raynauds in my hands and it spread to my feet and ears. There were also a couple of spots on both sides of my face that had become so dry or something that I could not put enough lotion or cream on them, but nothing helped. In hindsight, it was skin hardening. Skin hardening on my first two fingers decreased manual dexterity and feeling in my fingers. Since the Raynauds came out of nowhere, it seems that scleroderma came out of nowhere. However, when the other symptoms began I was under a great deal of stress. Whether or not that triggered those symptoms......"you be the judge"..... emmie
  9. Hi Leslie, I've been on a "sabbatical" for several months now for the exact reasons you brought up in your original post. I thought I had been dealing with being diagnosed with several different auto immunie diseases rather well. I have always been the strong, capable person who managed to deal with and cope with everything well. Guess what? After building up for a while, it all came crashing down around me in January. I have been taking effexor XR for about a year and a half because my neurologist recognized my depression back then. I now have psychiatrist who handles that end of things. In February, I started working with a therapist. Fortunately, we hit it off from our first meeting. It is the best thing I have done for myself. I can only speak for myself, but I have not regretted making these choices. I wish you the best on this road or any other you might choose to help you come to terms with the hand you've been dealt. emmie
  10. Wow, Linda, I'm just starting to post here and there again. So sorry to read about your ordeal. I'm sure you are glad to be back home and on the mend. Take good care of yourself~ that way you'll be up to no good in no time at all. ;) emmie
  11. Hello Sadie, I have not been posting lately, but have been a member for quite a while and always check in several times weekly. Your comments to others have always struck me as compassionate and understanding. I would just like to offer you some compassion in return. Obviously you know scleroderma inside out after 18 years. I don't think it knows you, though. I don't think SSc expected to invade your body so extensively and cause you such physical suffering but not break your spirit. In spite of your pain you are still able to offer others kindness. In that way,you have beat scleroderma and that counts for so much. I am sure you are already feeling much better with your choice to be cared for through hospice. You will benefit from the special care you receive and just as important, they will all benefit by knowing you. All my well wishes are with you. I look forward to reading more from you as you feel able. Thinking of you and sending gentle hugs, emmie
  12. I've been lurking around for several months, but keeping track of all... Jennifer, thanks so much for the update on Peanut. Miss Peanut, you stay strong. You want to get out of ICU and into a room with a nice view of Lake Michigan (hopefully). The weather has finally turned--feels like spring has finally arrived and we have actually had a few summer type days now. You want to feel some of the better weather Chicago has to offer instead of the cold, windy, gray weather that hung on much longer than usual this year. We know you're a fighter and have a terrific sense of humor. Use both to your advantage now to get through this time. Take strength from all who love you and care about you--including all of us here--as you need it. Looking forward to hearing when you're out of ICU and better yet, when you join us here again! Lots of good thoughts and strength for you, emmie
  13. Hi Barefut, I haven't posted often lately, just been hangin' around. Yes, I've had cellulitis; in fact, I've had it twice both in the same place which was on the side of my nose. I had to use warm compresses and take an antibiotic. Since it was on my head and therefore "close to the brain" I had to be careful to get it cleared up. It hurts badly, doesn't it? And on your foot....oowwie! Be careful...take good care! emmie
  14. Peanuts, I'm very glad that nothing was found and that you are much more comfortable now. You should still let your regular pulmonary doctor in on this or will the hospital automatically send him/her the results of the CT scan and EKG? You might want to call to be sure. (Don't mean to be "bossy"--but I am, aren't I?) Hope you have a restful, pain free night. emmie
  15. Hi everybody, I have the same problem with the bloating and discomfort that goes with it. My GI doctor told me that it can actually cause you to go up a full size in clothing! (Isn't that special?!) Mine is also related to bacterial overgrowth which the doctor attributes to slow motility. She prescribed antibiotics which I have yet to start. I was very sick a couple of weeks ago, and just got the clearance to start them. She also has me taking probiotics to encourage the growth of good bacteria. From another member of the bloated belly club, emmie
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