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Everything posted by KarenL

  1. Hi John, That sounds painfully ghastly! To help, use Lysine, an over-the=counter amino acid. I take it every single day, 2000 mg, and have almost done away with the sores that used to plague me. I have also tried the oral rinse someone here mentioned, it's a kind of yuckky pink powder you can ask the pharmacist and she/h can tell you where it is, usually in the mouthwash section. Best of luck... Karen
  2. I am receiving iron infusions and every month they do a complete CBC. My BA% is elevated. ANy idea what thsi indicates or does anyone know the reference range for whatever BA is? Thanks, as always, Peace and love, Karen
  3. My kids will tell you, I'm either "boiling or freezing", never just right. Oh well...it is what it is Karen
  4. The color changes you describe ARE Raynaud's. From my understanding, the nail fold is not something you see with the naked eye, the rheumatologist will put a special oil on the nail and then look through a special glass tool, as you described. They are looking at the cappillaries and how they react. I think. Anyway, don't underestimate raynaud's, any color changes are bad, and need to be taken care of and avoided. My doctor says that you should treat every episode of Raynaud's as a medical emergency. Take it from me, I've had gangrene and it takes MONTHS to heal. Very painful too, VERY. Good luck and keep warm! Karen
  5. I have the same thing. Every night I use an antibiotic ointhment with pain relief and then I keep the (worst of) the finger (s) covered with a band-aid that has antibiotic in it whenever they get bad. If I stop the treatment, the cuts come back. Also, there's a cream called "crack cream" which works well. Good luck. Karen
  6. Hi Debra, I had the same problems as you. No veins, once while I was having a heart attack, it took them 2 hours and 12 tries of trying to start an IV, they finally did a central line. So, now that I need weekly iron infusions I have a port. Getting it put in wasn't bad, about 15 minutes, some pain with the numbing needles, a little sore with healing and no problem healing. They actually used it the very next day. It's not the most beautiful thing, and seems obvious to me, but really unless I point it out, no one notices it. As far as using it, it's the best! Blood tests which used to be a nightmare are a breeze and they get vials full in under a minute. The infusions are likewise, easy as pie. Have no fears, a port is a good thing! Good luck. Karen
  7. Hi all, I've been laid off for two years now from a full time teaching job. I've been substituting and most days that's fine. (except for winter fire drills, recess duty and stairs!!!) Anyway, I haven't found a full time job, and I'm not sure I can even handle a full time classroom anymore. I'm only 50, and it saddens me that my work life is so hard, my physical life is so hard, and I feel like such a financial burden on my dear hubby. He works so hard, and I have two kids in college and two teenagers at home! We're struggling mightily, and things are becoming desperate with the bills food, and gas prices eating up our income. I am seriously considering disability insurance. BUT, I'd like to leave the door open for some substituting or maybe a part-time desk job, just to get out of the house to go somewhere besides a doctors visit! I get really depressed when I'm home too much alone. Can I do partial disability? Is there such a thing? Do I need a lawyer? What's the process? Thanks all..I know you guys "get it". Peace, Karen
  8. I feel so bad for you, lack of sleep is the worst! My hubby has sleep apnea and restless leg syndrome. In August he started using a CPAP machine and it's helped somewhat, although that comes with it's own set of issues! For the restless leg syndrome, try taking magnesium at bedtime. With all the various pains we have it's no wonder this is such an issue. Oh and RLS is also involved in Fibromyalgia. Good luck sweetie, try try try not to think too hard about it, because that only makes it worse. I know, easier said than done... Peace, Karen
  9. Hi Craig, My sister had the same thing happen. She's getting her hip replaced at the end of the month. I was afraid to say anything because it doesn't always happen and I didn't want to scare anyone... Karen
  10. Wow! The things that pop up with this disease! Some days I'm so overwhelmed! I get those blood blister things too and my rheumatologist said that they are telangiascias in the mouth that get big and sore. I am not taking a mulit-vitamin at the moment because I have celiac and am looking for one that is gluten free. Anyway, thanks so much for all the answers, I am ashamed to admit I haven't been to a dentist in about two years, as a matter of fact, since I was diagnosed with sclero. It just keeps getting pushed to the back burner with all the other doctors I have to fit in. Right now, I'm also battling a narrowing intestine. :angry: I don't have a colon due to ulcerative colitis years ago, (right before the Raynaud's started hummm) and my small intestine is acting up now. Some days it seems like one thing clears up, which leaves a hole for something else to flare...sorry to sound "woe is me" (again!) if you met me, you'd say (LOL) "Wow, you don't look sick"...we've al been there done that right!? Peace out everyone...and thanks again, I'll make a dental appt. Karen
  11. Hi Jen, I wouldn't take any chances, why not get it looked at? It could be sclero related. Anything purple/blue could be the beginnings of gangrene. Why take a chance? When I got gangrene, the darkness came up literally overnight. Good luck, Karen
  12. Catherine, You are most welcome. That's what this forum is all about, people helping people. I too had Raynaud's for about 13 years before I knew what to call it or that it even had a name. I just thought I was weird and cold. My kids used to tease me because I would put my mittens on the wood stove before we went out and sometimes they would start to burn! I also used to stand in front of the stove and turn like a rotisserie chicken! I do miss that wood stove! Anyway, glad to help. Keep coming on here and read the articles as well. Most doctors are willing to work with you, especially if you come in armed with information and questions. My doctor likes me being educated. Peace, Karen
  13. Tru, It's not crazy to wish your toe cut off...I was kind of depressed when the doctor decided not to amputate my finger because I thought it would end the pain. Pain like that, makes you unable to make any decision except to get rid of the pain! I'm so glad to hear you are healing. Good luck! KarenL
  14. I smoked as a teenager. Not even heavily, but at age 47 when I had my first (of three) heart attacks due to coronary artery disease my doctor said it could indeed be because of smoking all those long years ago! Also, my rheumatologist said that my youthful indescretions could have caused some early blood vessel damage in the heart and fingers too. You just never know. I'm so glad I quit. I had a boyfriend in college who refused to kiss me when I tasted like smokes, so that was that for me! Let me know what works for any of you....I have a young man, 18 years old, a friend of my sons living with us now and he smokes and has Raynauds! He tried the gum, but it made him sick. His hands are really bad, but he's too proud to wear gloves etc. Oh dear....Good luck everyone! Karen
  15. Hi again Catherine, I saw that you posted again before my post got in there....I thought of some more things after I read your second post... :) You will definitely want to have your blood work done. Many times we have very low iron which contributes to the blue hands. Also if you are a smoker...stop right now! :o It is one of the worst things you can do. Ask your doctor about medication if you're not on anything. Tracleer helps many people, as do some of the blood pressure meds. Your doctor should be helping you with these decisions...If you are indeed warm and your hands are still blue, go warm them up in some warm water, do not sit there with blue hands for too long!....put on mittens whenever possible. I keep hand warmers in my pants pockets at school, (I'm a teacher) or in the pocket of whatever top I'm wearing, like a jacket or sweater with pockets. My students are used to seeing me wear mittens even in the spring and summer! Ask your doctor about nitro-bid to heal the ulcers. It's a nitroglycerine cream that opens blood vessels, put it around the base of your finger and cover with a band-aid. I do it at night because it can cause some nasty headaches, so if I'm asleep, I don't notice the head pain as much. The other thing I do is use band-aids with anti-biotic built into the band-aid itself. I keep the tip of a finger covered if it's threatening to ulcerate. Again, I've never had an ulcer, thank god, but I DID have gangrene, they don't necessarily go together. My gangrene started as severe pain, I mean like holding my hands up in front of me and crying constantly, (and I'm NOT a wimp with pain, I had three kids with no medication!) But that finger pain is bad. After the pain, which totally baffled the ER and my first awful doctor, I got a tiny black speck under the nail and then the nail started pulling away from the finger. The spot grew larger and somehow, a third doctor finally told me what was up. That was my first diagnosis. All this winter one finger was split and sore, I thought for sure it would ulcerate, or go gangrene, but I diligently wrapped it and did all the other things I suggested and thankfully, it's almost healed at this point. I'm hoping the arrival of spring will help keep it safe. I can't stress enough how important it is to keep those fingers from NOT turning blue as much as you can. It's a full time job! Good luck and keep us posted. Read the articles on this site as well... Peace, Karen
  16. Hi Catherine, The good news is that if you've had the disease for 12 years with slow or no progression, you probably won't get much worse.! :) The other news is you have to be extremely careful with Raynaud's!! Treat every episode of Raynaud's as a medical emergency. (My doctor said that). I don't mean run to the ER or anything, but you MUST do everything you can to keep those fingers warm. I too, suffer severe Raynaud's and lost part of a finger to gangrene. Trust me, you DO NOT want to go through that. I've NEVER had an ulcer, you don't need an ulcer to get gangrene. I was on 4 kinds of pain meds and became immune to each of them over the course of 8 months while my finger slowly died. My doctor said (and I quote) "losing a finger is the worst pain in the world because of all the nerve endings there". I can remember holding my finger and screaming, rocking like a baby hour after hour. PLEASE do not think you are a 'drama queen', this is a serious disease!! You must fight it on all fronts. Some tips from me, buy hand warmers at hunting stores and use them faithfully. I buy them by the huge box at club type store. Get a heating pad and keep it on your lap, or even under your computer mouse, my right hand gets so cold at the computer! Make your family wear shorts so you can have the heat up. Have a heated blanket on your bed and one on the chair where you hang out. USE it! Get some of those neck things...or you can make your own...they have seeds, usually flax, but you can make them out of rice and a sock. You pop them in the microwave and they stay warm for a half hour or so. We have a hot tub, but hot baths can raise your core temp when things are really cold. Get space heaters and put them where you hang out. Get an automatic car starter and warm the car before you go outside. Wear mittens even if you feel silly in april... :blush: :blush: :blush: When you go food shopping, either bring someone with you to get the cold and frozen stuff, or keep mittens on with hand warmers in them. Wear layers, wear scarves, wear socks. Move south if all else fails! LOL.....but remember they use a lot of air conditioning down there, so that's just as bad actually.... Anyway, you get my drift! Bottom line, You are not a drama queen, this is serious. If you already experience ulcers and padding loss, please Catherine, be very very careful. Peace, Karen
  17. Hi ALice, Where do you live? You should be able to find a scleroderma specialist that takes your insurance. And certainly one who gives you undivided attention. Scleroderma is a complicated disease and requires a whole team of doctors, ideally they will know and communicate with each other. I was lucky, a friend of mine is a nurse and he heard through the grapevine of this awesome angel doctor. Maybe you can look on this site for lists of doctors. My doctor is on there as a founder and contributor, Lee Shapiro. It will be worth it to travel to see a good doctor, even if you have to drive all day and stay overnight for the initial visit. Most will deal with you over the phone after that, and you will see them every 3-4 months in person. Good luck Alice, you deserve the best! Peace, Karen
  18. Thanks so much for information, Not to be dense, but your answer and information seems to indicate that we should NOT be on steroids, yet many people here on the list are. It reminded me, when a new post listed Medrol as a new med, and that is a steroid. I've heard lots of others who are also on prednisone. So why are they being prescribed something that is contraindicated in sclero? I know that we scleroderma patients are a sophisticated informed bunch in general! :) Always ask your doctor about medications. Today I was prescribed flagyl for an infection. The nurse told me on the phone to stop taking prevacid, (for Reflux). I told her I could NOT do that as I have horrible heartburn and sometimes even need it MORE than the prescribed once a day. She checked with the doctor, and called me back, all sorts of apologetic, saying that there is a pack of flagyl that comes WITH a stomach acid rducer in the multi-pack. She thought that was what the doctor prescribed. My point--always ask if something doesn't sit quite right with you. peace all, Karen
  19. Every so often, (like now) I have very sore gums, and they are sensitive to toothpaste and even acidic foods like ketchup. I guess they are more on the burning scale rather than sore. I have to brush very gently and get the toothpaste out ASAP! After a week or so, it goes away, only to surface again, maybe a year or so later. Anyone else? Could this be sclero related? Karen
  20. I was on steroids for ulcerative colitis and experienced weight gain and a very swollen face. Plus I was so irritable and couldn't sleep. I got off it as fast as I could. Karen
  21. This is probably a strange question, but what do plaquenil or steroids do for scleroderma? I'm not on any meds specifically for sclero. Long term use of steroids have all sorts of side effects, I'm curious what good they do, as my doctor have never even mentions meds.. Thanks, Karen
  22. oops...sorry...I just found it...:) Karen
  23. Hi Janey, The survey requires a password. Do you have it? Karen
  24. Hi Sadie, I had ulcerative colitis 16 years ago and they took out my colon. I also have celiac disease. I always have gas, bloating and diarreah. Are they related to scleroderma, it seems so. I know that since I've been on the celiac diet, I'm a little tiny bit better. But ANY carbs, cause the symptoms to be worse. Karen
  25. The muscle popping out thing sounds like a hernia...I have one and your description sounds exactly like that. have you had abdominal surgery? Karen
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