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KarenL

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Everything posted by KarenL

  1. Hi Ginny, I don't think that a scleroderma diagnosis is made based on gastroenterologists biopsies. It's done more through bloodwork and doctor observation. You may indeed have gastro involvement, most of us do, I have celiac and GERD and had ulcerative colitis, but those can exist outside of sclero as well. Hopefully you'll go to a rheumatologist who specializes in scleroderma for a thorough check-up. Hope this helps... Peace, Karen
  2. I love my doctor Lee Shapiro in albany, NY. He has written many of the articles on this site and is a major contributor on Voices of Scleroderma. He's immensely helpful and is fighting the insurance company for me, tooth and nail. Karen
  3. Hi there, This is a real problem for me too. I work full time. I'm about 200 pounds (YUCK) at 5'4" a size 16! I've gained 50 pounds since being diagnosed with sclero and coronary artery disease. Over these three years I've tried Pilates, on a reformer in a small class and that was great. The other thing is the elliptical machine and recumbent bike. I try to walk outside, but the winter and the arthritis in my knees kills. One very interesting thing that seems to be helping is a "Happy Light" I got for my birthday, it's giving me more energy. I guess I'd say the recumbent bike is the best and most comfortable. It takes awhile to build up to an aerobic level, don't go too hard or too fast. Good luck. Karen
  4. Hi Janey, Thanks for responding. I've had three heart caths in the last two years. I have Coronay Artery Disease and they think it's related to the sclero. I've had three blockages in two years and three stents. The rheumatologist is sending me for an echo right away, I've had them before...but he wants a new one. Thanks again...it really helps to run this stuff by the group here!! Karen
  5. Hi Barefut, I'm happy for you with the teller job. Do you have any experience? The reason I ask, is I've been out of work for almost 2 years now! I've gone on interviews and had literally hundreds of resumes go out. I've attended all sorts of job fairs etc. I was a teacher and got laid off when the school (private) downsized. Here in NY there are 1500 teachers for every job, and most of them young and coming out of college with dual certifications etc. I am 50 (I said it for the first time--it just happened last week! :) and we are going broke between doctor bills, and gas prices, two kids in college and two teen age boys at home! My poor husband!! BUT it doesn't make sense to work for not enough money and I'm not sure what I can handle anymore anyway! Let me know how the teller job goes, I never thought to totally change directions like that! Peace, Karen
  6. Well, it seems I have severe anemia, and will be needing iron infusions and possibly even blood from time to time. The rheumatologist is also still trying for the flolan for me, and says he may ask the insurance under the PAH flag as I have a reading of 32...(whatever that means if anyone knows, tell me!) So, because I have such horrendous history with IV placement, (the last time I was hospitalized it took 12 tries and they wound up doing a central line) he says we should do a PICC line. I looked it up and it looks bad. How do you keep it clean? Does it hang out of you all the time? Help! If anyone has down this let me know. I'm not complaining, hopefully these infusions are going to make me feel a whole lot better, so I'm willing to try. Just feeling like a guinea pig---again! Peace and namaste, Karen
  7. I had a visit with my rheumatologist yesterday. among other things I found out I have been putting the nitro-bid in the wrong place! You're supposed to put it at the BASE of the affected finger, NOT on the sore tip! He explained that it's like a traffic jam, you can't solve the problem at the jam, you have to route the traffic (in our case blood) above the jam. He's funny like that, always looking for little illustrations for us. Anyway, thought that might help some others. I did it last night and my finger was pink and warm all evening ! peace, Karen
  8. Hi Jaxs, I get it too, and I'm not sleeping on my hands either. I also get it when I have my arms on the arm rests of a chair for too long. I have no answers, just commisserating. :( Karen
  9. You can use a bath and shower product containing mineral oil. You put it on IN the shower and then you LEAVE it on. Putting it on in the shower allows the oil to get past the skins natural barrier and into the layers below where itching starts. You can also try petroleum jelly, which works great and in the same way, but it kinda glunky and messy, but great in a pinch. Be careful--the tub will be slippery! Karen
  10. I have the same problem and my doctor discovered anemia, very low iron. I'm scheduled for iron IV therapy! I'll let you know if it works. Good luck, I know how those things hurt!! Peace, Karen
  11. Thanks so much ladies!! The day came and went with no ill efects, I still feel the same as I did at age 35. Ya know, I had my first heart attack at age 47. As I lay there in the ER, looking at my dear husband with tears in both our eyes, I thought, "I cannot believe I'm not even going to hit 50! I can't believe I'm gonna die so young!" Since then I've had two more heart attacks and may have more. The doctors think it's sclero related, but the point is, I got to be 50 and it feels good. Thanks so much for your replies and compliments. Karen
  12. KarenL

    Ulcers

    Hi Cheri, I haven't had an ulcer, but I do have a very sensitive finger tip as you described. It's the finger that has the worst Raynaud's . It also splits and the skin is very damaged at times. I found a great cream in the pharmacy. Funny name, great stuff. I use it constantly and so far, no ulcers knock on wood! :) You can PM me for the name. Karen
  13. Hi Jess, I'm sorry you have this disease at such a young age. You're lucky to have a boyfriend who cares a lot about you. I have a very supportive husband. Here's the thing, supportive guys seem to be very sensitive as well, making their own feelings top on the list too. I had to sit down with hubby and tell him look, I know you're scared, I know how you worry. But this is happening to me and I need you to be strong. If all you do is worry and look at me with big sad eyes, I won't be able to handle it. Scleroderma is usually not a fatal disease, it can be managed. I have a lot of problems, and I really appreciate your love and help and concern. I promise to tell you when I feel bad, and ask for help when I need it, but please try to not worry too much. We will get through this together. I love you. Good luck sweetie, Karen
  14. My now 21 year old son had severe eczema as a child, and still suffers. The very best thing we learned was petroleum jelly baths. It sounds horrible, and it's not that pleasant, but it worked. You soak in a warm, not hot bath for about 20 minutes, until your finger tips crinkle. While you are still in the water, put petroleum jelly all over, UNDER WATER. Get out CAREFULLY. PAT don't rub dry. That alone may help. With my son we also had prescription steroids (topical) and then after the steroid cream you put a cream based stuff on top to hold it all in. It was the only thing that worked. He was cured essentially day one. As I said it's not easy, but it did help. The skin is a barrier and itchy skin comes from within. In order to get the medication into the skin you have to break that barrier with water, this allows the meds to get inside where it starts. After the petroleum jelly and steroid soaks in you seal it all with the cream. It's a committment. Good luck, Karen
  15. Hi KayBear, I have no skin involvement either, or very very little.. To be diagnosed with CREST, you need two of the five symptoms, not all of them. It's not even called CREST any more it's called limited systemic scleroderma. CREST is considered an outdated term. Raynaud's and esophageal involvement is enough to deal with. Get a new doctor, a really good rheumatoligist. Good luck, Karen
  16. Hi Peggy, The rheumatologist will know if they are the telengiastacias. You may get them on your hands and inside your mouth too. Look at the insie of your bottom lip, thats a common place too. I cover mine as best I can with make-up. They don't go away, and you'll probably get more. Sigh, this is a complicated very multi-faceted disease. Try to kep positive if you can. I have been meditating using a self healing CD. I have been concentrating on making my spots smaller, especially one that is huge right in the middle of my cheek. It might be wishful thinking bt I think it's helping. Good luck, Peace, Karen
  17. My husband uses a UVB light therapy machine for exzema, and insurance paid for us to have one at home! You might want to check with your insurance, because it might be worth it to them if you'll be going steadily. He uses it for only up to two minutes tops. By evening on those days he's red and by the next morning he's back to normal. It's not really helping his skin, but then again he doesn't do it the way he should. What are you using it for and what is the protocol? Sounds interesting. I wonder if it would work for Seasonal Affective Disorder? Let me know... Karen
  18. Thanks everyone, you cheered me somewhat. I'm reading an awesome book and it's helping a lot. I think the baby boomer generation never really believed we'd age! Remember all that don't trust anyone over 30 stuff! I have a step-son older than that! Karen
  19. Dear Peggy, That's great! Thanks for keeping us informed and inspired. My question is, can you work part-time if you are on Social Security disability? I don't know that I'd want/need to not work at all, I'd like to have the option. What do you know/think? Karen
  20. Hi Fancy Face, welcome. I work too. Not even a consideration of not working, when I wa shealthy we started a lifestyle that requires two incomes. I try to do part time as much as possible, but for the most part my illness has not changed my life or my workload. I'm a teacher and the worst part is the outside duties, like playground in the cold weather...I live in NY! At home, hubby helps a bit, but not too much. I still do most of the housework and shoping, cooking etc. Then the family laughs and wonders why I collapse at 7:00 PM every night! It's tough. I want to stay productive and not be sick, but some days it's hard! Karen
  21. Hi all, Next week is my (gulp) 50th birthday! I'm trying really hard to be positive, I had a heart attack at age 47 and at that time I was thinking "wow, I can't believe I'm not even gonna get to 50"! Then I had two more heart attacks! I know I should be greatful to be alive and I AM! But...Well, here it comes and I'm feeling weird. I don't feel 50, I don't think I even look 50, I don't think like what I think 50 thinks like! When I think of 50 I think of old lady school teachers in pull on pants who need to retire! LOL...Not me!!! I still think of myself as a fun loving hippe girl from the 70's! I hate the fat roll(s), the wrinkles, the grey hairs here and there (!) on my body. The loss of libido, the night sweats. The men who look at me because they are all old, and not young studs anymore! All this and the number 50 too! Sorry to rant, with everything else it just seems crazy for this to be bothering me at all. I guess it's just female vanity, or some other unattractive thing. Thanks for listening.....how have any of you handled this birthday with grace? Peace, Karen
  22. Just curious if anyone uses capsaicin ointment to get some warmth into the hands? It's supposed to help with circulation, what do you think? Karen :)
  23. Hi Karen, Hopefully your doctor is a good one and the pus is hopefully a sign that this is indeed an infection. My first thought was gangrene, mine started under the nail like that, so I'm always really nervous about black spots under the nail.. I also had that nail separating from the finger thing going on. Keep on top of it, I wish you a speedy recovery, our hands are just so tender and we use and need them so much! No one can appreciate that like we fellow sufferers! Peace, Karen
  24. Can you all tell me exactly how you use the nitro-bid? I did it according to directions, with the paper wrapped around it and all, but in the night I woke up, it felt like my finger was on fire! I had to rub it off fast. Maybe I left it on too long? Are you supposed to take it off after awhile? I don't have an ulcer---yet, but the finger is cracking and painful! And yeas, it's freezing here and I work outside the home. My darling hubby bought me a remote car starter which helps tremendously! I also use hand warmers and mittens, but even with the heat on 72, I'm still always cold indoors. Good luck to you all....spring IS coming, it's already lighter at 5 PM! Peace, Karen
  25. I don't think I'm so much dry as just really painful. It almost feels like when my hubby is trying to "get in" that something is blocking him. He says, 'he's in'...(oh my, did I really type that? oh well these people don't REALLY know me LOL) but it feels like sandpaper or like a wall is preventing him. As you can guess, it's made me very hesitant, and like Barb, rather do without than be in pain..who wouldn't? I thought it was menopause too, it probably is but then again maybe sclero? I do this with every little symptom, is it this or that. Of course we have anxiety, this disease is baffling! Anyway, we found a lube that works pretty well, its silicon based and (embarressed again) we found it in a gay men's store in NYC, as we strolled in unawares! It's called 'eros' and made in Germany. The man in the store was very helpful and gave us a free sample as it is very expensive, but maybe there's other silicon based lubes made in the US? Thank goodness for this forum!! It's so amazingly nice to know I am not alone in this disease. Peace all, Karen
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