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Everything posted by KarenL

  1. In addition to what everyone else said you should tell your doctor because there are meds to treat this. Do not take Raynaud's lightly!!! You can lose toes, fingers, the tip of your nose, ears, etc. KEEP WARM!!
  2. I take Revatio three times a day, 20 mg each time. At first the headaches were horrible, now I don't get them at all. I think it took about three weeks maybe for them to stop. Otherwise I love it. It saved my fingers this winter! Karen
  3. Success! I spoke with my teacher and clinical supervisors and they were TOTALLY supportive! They said that "Mrs. No" doesn't have to know a thing and I should go ahead and wear what I need to wear. My fingers cooperated right on cue and turned blue as can be (cyanotic in nurse talk :) And they both cooed over me an said oh you poor thing and such. So, all that worry for naught. Thanks again everyone and it just goes to show ya, that sometimes, It's not what you know it's who you know! Peace Karen
  4. Thanks for all the ideas and suggestions! I have long silk underwear, the pants will be fine, it's the long sleeve shirt peeking out from the short sleeve scrub shirt that's the issue. But I think it will all work out. I have a meeting with my immediate supervisor tomorrow, she can see the active sore finger tips...I think the cold is making tiny cracks near he corners of the nail? Ow they hurt! Anyway... Thanks for the contacts...I'll let you know how it all pans out. Karen
  5. The reason she will know whats under my clothes, is the handbook states exactly what our uniform consists of. It's a uniform for student nurses. Of course nurses wear whatever, but as students, well it's like boot camp. It's their way or the highway. The official uniform is white scrubs only. Short sleeves. No rings. No earrings, or bracelets. Nothing. The only concession to the upstate NY winter weather is a scrubs jacket. It does have long sleeves but still is just cotton. I would probably still wear it in summer! The way I got out of recess duty was with a note from my doctor. So maybe I will involve him again and go back to "Mrs. No" (as we are calling her. If she still says no, I'll appeal to the school board. I will never have my jacket off anyway, so no one would see the long johns unless she does inspection which she will. Thanks for the support. will keep you posted. Karen
  6. Ouch! I know that pain! It sounds like adhesions. Abdominal surgery causes them and they can show up months and even many years later. I had a total colectomy 14 years ago and have horrible labor like pains shooting all around my hip, back and groin area. It especially acts up when I am standing for long periods, even housework brings it on. It CAN be treated. It's called myofascial release. Once you read about see if you think that's what's up. I bet it is. Good luck. I have mine treated bi-weekly by a chiropractor but there are other practitioners who also do it. Sometimes physical therapists know how. E-mail me if you have a lot of questions, I'm not on here too often as I'm busy with nursing school... Karen
  7. Hi everyone! I have started nursing school and am so excited! Things are going well, and I find that in addition to my 'older' age being helpful in the learning environment, I am already ahead of the game for having spent so much time in hospitals and in researching my own illnesses. The silver lining if you will. One problem has come up. The uniform is freezing ice cold. It is the typical white thin cotton scrubs, short sleeve with a long sleeve thin cotton jacket on top. NOT warm enough for me in a million years. I went to my supervisor who was dressed in a short sleeve dress in January (thanks to menopause she said) and I was dressed in my long johns a turtle neck and a sweater, and I was cold and she was fanning herself. She said I couldn't wear completely invisible long johns under the uniform. No one would ever know it was there as I will probably never take off the flimsy jacket! Still she said NO. I showed her where I had ulcers, scarred, as well as where I lost the tip of a finger to gangrene, still she said no. What's the next step? Maybe she needs education but I don't want to come off as condescending. Write a letter? A doctors note? A letter to HER supervisor? What do you all suggest? I have about two months to iron this out. I was even excused from outside recess duty when I was a teacher! HELP! Karen
  8. It may not be the ginger itself....carbonated beverages are a definite no-no, and a common problem with stomach issues. I actually USE ginger to calm my stomach, but it's real crystallized ginger from the health food store. It's been a miracle for me and I have a hiatal hernia, celiac disease, and severe GERD, as well as no colon at all! I take a little bit of the ginger about the size of a small pill and suck on it after meals. My stomach settles right away. Not sure what the mechanics are, but the cookies and soda may be the problem, sugar for example is a huge problem with GERD and stomach problems. IMHO Karen
  9. Hi Jetta two excellent things I use are "crack cream" yes it's really called that, and burt's bee's rescue ointment. welcome and good luck Karen
  10. Hi, I have no colon and have the opposite bowel problem, going too much. The one thing that helps with soreness is calmoseptine. It's a great barrier cream. Your pharmacist can order it and it's about 7.00 per tube. Use the wipes with aloe. Have you tried a fiber drink like metamucil? Eat salad every day? Spinach? Tomatoes...just thinking of all the things I have to avoid! Good luck that can't be fun. Karen
  11. Thanks so much everyone, you have firmed up my resolve. I was almost afraid to tell you guys because I was afraid you might say I can't do it. My family is very dubious, not my hubby and kids, but my mom and sisters. They all seem to think I'm a delicate flower that might explode at any given moment wanting me to go on disability. I know myself, and I feel better when I'm out and about with people, not at home fretting over my 'condition'. I know it's going to be a challenge and some days downright hard, but I kow I can just like the little engine that could. My doctor is all for it too so... Thanks again, you guys are like family in some ways! Karen
  12. Hi Christy, I am on revatio. It's great, but does sometimes cause headaches. About a half hour to an hour after I take it my face gets hot and my eyes feel hot too, but I don't mind. Good luck with it, it's a savior. Luckily insurance pays because it's about 1200 a month! Karen
  13. Thanks everyone, I am very excited. I am dreaming that my wonderful Rheumatologist, the ever popular and oh so smart Dr. Shapiro will hire me to work in his office! LOL, it's a dream, but hey it could happen. Then I will have all the love and support for all the scleros who come to him and I can have a support group and be oh-s-knowledgeable! Anyway, it COULD happen right?! :P There are just so many possibilities and it's a recession proof. Hubby and I want to travel to a warmer place once the 'baby' graduates high school so nursing is also movable. Oh and Margaret, I'd be interested in how old is "too old". I'm not so young myself, but in my head I am. I know this will be a huge challenge, but for now I seem to have the correct meds and schedule that I live with and keep my symptoms relatively quiet. For me, learning and keeping busy are essential to my health and especially my self image. I will buy a hat and lots of scarves! Karen
  14. Hi all, I just got accepted to nursing school! I passed my entrance exams in the 93rd percentile! (pardon the brag) :) Anyway, the test site was in the school and it was freezing--to me. I already had on a camisole layer, turtle neck and sweater and I didn't take my coat off! Of course my hand warmers were there etc. Any suggestions for keeping warm in a classroom? It seems everyone is cutting back this year on heating bills. I'm thinking I have to give in a find a couple of really cute hats. Has anyone found that keeping a hat on helps a lot? Also, I think there's a no hat policy, what about getting a doctors note for special considerations? The no hat thing is because it's in a shared space with teenagers and you're not allowed to look like a gang member! Thanks, and wish me luck I start in January! Karen
  15. You MUST at all cost keep warm especially fingers and toes. Not to be taken lightly. I have had ulcers and cracked skin, they are the prelude to gangrene. Gangrene can also develop without ulcers or cracked skin before hand. Prolonged Raynaud's attacks that are allowed to go on will eventually cause gangrene. Trust me it's not something you want to do. My doctor, when I finally found one who knew what was going on, advicsed my husband and I to go to counseling because of the toll a year of gangrene was about to take on our marriage. I was on increasing amounts of pain killers as my finger slowly died. Imagine the millions of nerve endings in the tips of your fingers....PLEASE, do something and do it fast. I am finally on Revatio which is the only thing that has helped. I still get attacks, but they are milder and over much faster. Stay warm is not just a nice thing to say or a cute quip we use on here it's literally life or death, (of a finger) best of luck, Karen
  16. Hi Celia, That sounds awful, I certainly feel for you and have been there myself. I find that sugar is a culprit for me every time. As are white unrefined carbs like pasta. Those two seem to be the worst. Sugar will also cause mouth sores and gum issues for me, very sore and bad bad stomach cramps. It's hard, but worth a try. Karen
  17. Hi Skinsister, What a sweetie you are. I've had pseudo-obstruction. It hurts! I also live in NY and go to Lee Shapiro in Albany. He is THE guy in NY. On this site and on sclero.org you'll find his name and bio. He is AWESOME and very conservative as well as knowlegable. I don't know his schedule, he's probably booked, but he sees sclero people on Tuesday mornings and Wed. afternoons. Check him out. I'd be leery of operations as well. You are a great sister...good luck, Karen
  18. The only thing that helps me is Prevacid, one in the morning, one at night. Also the tiny meals rule and nothing, ever never after 6 PM except tiny sips of water. Easier said than done for a kid but it's the best remedy I know of. Best of luck Karen
  19. Oh Ann, What a horror! I fell down a flight of stairs at school last year, nothing was broken but I felt like I was hit by a truck for quite a while. I completely empathize. I like to listen to meditation CD's. I have quite a few, that are specifically for healing. I'm reading a good book right now by Clyde Edgerton that's easy and light. You might try some Jim Carrey or Steve Martin, that one where he visits NY with Goldie Hawn...The Out of Towners I think...funny! I know there are hundreds of movies, but it must hurt to laugh?! Even though as they say it is the best medicine. Best of luck, jeeze like we don't have enough troubles already Karen
  20. Awwwww Lizzie, I sure didn't mean you are a wimp! No no no. I am freezing at 54 as well. And at 64 chilly. I am not 'happy' temperature wise unless it's above 75. I totally understand you. My heated blankets are my best friends. I always keep hot hands in my pockets. It's so embaressing at school when the kids are still in shorts and t-shirts and I'm already in jacket and gloves! No wimps here. Love Karen
  21. Hi Lizzie, I agree, you have to get warm before you need it. Plus, I have a few electric blankets around the house they are absolute life-savers. I use little hot packets in my gloves and microwavable seed filled thingys that stay warm. You can see them at sclero.org under clothing I think. I find the things that actually heat up are quite necessary. It's cold here too, upstate Ny, it was already 25 yesterday and tomorrow snow in the forecast! Our heating is about 400 a month year round. Best, Karen
  22. Hi Annie, As everyone else said, you need to be re-checked. I just learned that I too have a hiatal hernia. That along with slow motility, makes even early evening eating out of the question. I can't take nexium, luckily prevacid is working, but I eat my last meal at 4:00 PM, and then nothing else before bed. I try to eat my big meal of the day at lunch and a little dinner. It's helped. It is a huge life-style change, but I had to for my sleep. Nothing worse than waking up with that YUCK in your throat and sinuses! Good luck, Karen
  23. Hi Teresa, Don't wait on this one, as you may already know, ulcers can be very painful. (to say the least). If you don't use the nitro-bid cream correctly, it won't work. Here's what I did and it worked. At night before bed, put the cream about a half inch around the BASE of the affected finger. (the part closer to the palm) cover it with a band-aid not too tight. Put some antibiotic ointment like neosporin on the ulcer. Sleep. Do it every night and also at another time during the day when you can let the finger rest, like if you're going to sit and read or watch tv for awhile. Good luck and like I said, treat this aggressively. Good luck, Peace, Karen
  24. Hi Looking4answers, I agree with everyone else. I am in the same boat as you are, I have CREST with no/minimal skin involvement. Sometimes there is never skin involvement, sometimes it takes a few years to show up. Scleroderma is weird like that. My doctor is THE Lee Shapiro spoken so highly of. He is AMAZING and I use that word truthfully, not like the teenagers say everything is soooo amazing! :) He is a wealth of knowledge, you can peek in his office and there he is, sitting on the floor of his office surrounded by files and studying. He encourages me to research and SEND HIM NEW INFORMATION when I find it!! He stays up late and calls you at home after office hours to see how you are! He visits you in the hospital and teams you up with doctors you need, like blood specialists. He calls other doctors on your behalf and get this--he called my insurance company three nights in a row, to get me medicine approval because they are in Washington state and he would call them when he got home so he could be on hold forever without being in the office! My husband comes on all my visits and asks a million questions, the good doctor loves teaching! Once when hubby couldn't make it, the doctor asked, where's your hubby? He KNOWS me! Once I was in the hospital through the ER and they must have sent my lab info to him, he called me right away and told me that what I had was probably sclero related (a pseudo-obstruction) and talked to the doctors at the hospital and told them what might help. He was right, and saved me from unecessary surgery! I drive over an hour each way to see him and I would drive further if I had to. He has two whole days set aside just for scleroderma patients. If you google sclero.org you will see his face as one of the founders and many of his articles. I love the guy, can you tell? :) welcome to our group. try to gain info so you don't remain scared. Peace, Karen
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