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Everything posted by KarenL

  1. Hi smurfette, sorry you feel horrible, I know that pain too. When was your last endoscopy or barium swallow? You may have a large hiatal hernia? If all the usual stuff isn't working I'd want it checked. Also, make sure you are taking your meds correctly. You are supposed to take things like prilosec a half hour BEFORE a meal. Stop eating at least 3 hours before bed. Eat VERY SMALL meals. Alcohol is BAD. Extra strength antacid tablets or liquid can be used for 'breakthrough' acid. That's my advice...good luck Karen
  2. Hi JohnJ. Welcome and wow, you've been through the mill. I know about the pain of Raynauds, I lost the tip of a finger myself. Not amputated, but it turned black and took about 8 months to 'fall off". Luckily my doctor is a scleroderma expert and said I'm not a candidate for digital sympathectomies, (I have had several thoracic ones) because of lack of blood flow in my hands. One thing I noticed in your post, you didn't mention any pain killers. Now, don't get me wrong, I'm not a big proponent of drugs, and you did say or at least indicate you have a high pain threshold, but those black fingers can hurt bad! I was on increasing doses of very strong pain relievers. Believe it or not you develop a tolerance and can still drive and go to work on those heavy duty drugs. I was a middle school teacher at the time. It sounds like you may need to consider some pain relief. I'm sorry for what you went through and will go through, BUT it sounds like your attitude is good, and you know enough to ask questions. The most important thing you can do is research and understand your condition. Question everything, every treatment, every pill. STAY WARM. learn to wear a hat, (my personal cross to bear) :unsure: ALWAYS wear mittens or gloves. Get some of those hand warmers that hunters use, you can buy them in bulk pretty reasonably at one of these warehouse places. Stick them in your pockets all the time. I'm sure you'll learn and hear lots more tips. Good luck and again, welcome. You're in the right place. Peace, Karen
  3. Hi, I realize that reference ranges (what's 'normal') can vary, but what I usually do is google the reference range for example, " HCG reference range" and you can get a general idea. My lab always sends me theirs and anything abnormal is usually indicated in some way. But I always do my own research anyway. Good luck, I hope you get some answers. Karen
  4. Well the Revatio is working like a charm. Of course it's not that cold yet, but to me it is so, I say it's working. The headaches are a killer though and I'm not supposed to take NSAID's because of digestive issues. Acetaminophen does nothing, so suffer or continue? Maybe the headaches will go away? Maybe a lower dose? I am taking 20mg three times a day. It is safe to mess with the dose on my own? I'd maybe cut out one pill and see how it goes. Actually the flushing feels nice and makes me look pretty lol. I think my libido is peeking out too, which can't be a bad thing! Peace all, Karen
  5. Wow, do we all have fibromyalgia in addition to sclero? I wonder what the percentage is? Jude? Celia, it sounds like carrying the milk in addition to walking could very well have caused a flare. There are wonderful wraps that cover your upper back, shoulders and neck and heat up in the microwave. Sounds like you could use that! In the mean time try some warm rubs or those stick on arthritis patches that self heat. Good luck sweetie, that sounds so painful. Try to take it slow and let someone else carry the milk next time! Peace, :rolleyes: Karen
  6. Welcome Sarah, Wow, I'm inspired just reading all of the replies you've gotten! As you can see there's lots of hope. Sure there will be challenges, but scleroderma doesn't have to ruin or even change your life. You may have to make adjustments, but you are going in healthy. My advice would be to learn all you can and be armed with information. Ask lots of questions and stay in shape, that's your best defense. Oh and eat well. I too have three children and although they were teenagers when I was dignosed I had had sclero for ten years and didn't know what it was. During that time I was a full time teacher, like you and was a Brownie leader and cub scout leader and did all the things a mother with three little kids does. So.....life goes on. You are already a fighter and will do well for yourself and your children. Welcome to an awesome intelligent informed bunch of people. One excellent starter book my doctor gave me...The Scleroderma Book, a guide for patients and families by Maureen Mayes. Excellent. Peace, Karen
  7. Hi Margaret, That sounds like a strange bunch of symptoms, and as you know from all your research on Gareth, may or may not be related. An itchy mole is suspect so it's good you are going to your doctor. Usually they can remove it right there in the office and send it to be tested. I know you must be scared, but keep the faith and strength you have shown for Gareth and you'll do just fine. I'll be thinking of you... Peace, Karen
  8. I'll chime in here too...medications, plus menopause, plus depression, it can't be helped. I've gained 50 pounds and lost 10 since being diagnosed. At first, I blamed my lack of exercise due to fibromyalgia...but then we joined a gym and I took pilates as well as doing cardio and weights. I went for six months !! Lost 0 pounds! Then I had a heart attack and got a stent, went to cardiac rehab or the gym every single day and from May 30th to Oct. 2 lost exactly 0 more pounds! Keep in mind I have celiac disease and eat pretty much no wheat at all, and don't like red meat! On Oct 2nd, I went back to the hospital because my arm was going numb again when I exercised and guess what? Restenosis. That means my stent had filled up with plaque --again. Oh and my cholesterol? 168, with the good being high and the bad being low. I don't smoke or have a family history. I love how Amanda joked about her butt because I used to say I would walk by and my butt was still a block behind. But now I'm trying really hard to go easy on myself. I try to say, "I'm looking better", "I'm getting thinner". Somehow, I've lost about 13 pounds since hubby went on the Atkins diet..lol. And I listen to relaxation CD's and one that has a weight loss message. I try to get on my indoor bike a little each day and walk when my feet don't hurt too much. I still work so I can power sleep at any time. There seems to be no limit to how much I can sleep and I never feel totally awake. So keep on keepin on ladies. Seems like we have similar issues, our bodies are in a constant state of fighting, that's what I think. They think there's a war on and they are storing up for battle. Peace to you all....just keep smiling and trying to do your best. We ARE beautiful no matter what ! Karen
  9. Hi Miocean, I've had three stents placed in two years. "They" don't think it's sclero related, but my cholesterol is nice and low so who knows. You will go into the hospital, and they will give you versed, a kind of twilight sleep thing, you'll be awake the whole time. (probably). They will talk to you and put you on a smallish cot, drape you in sterile wraps and keep you warm. (It's very cold in the OR) They will shave your pubic area in the crook of your right leg. And then insert a catheter up the blood vessel in your leg up to the heart area. They will inject some warm contrast solution, you'll feel like you are peeing all inside your body, you're not actually peeing, don't worry, it feels good. (to me at least). Then they insert a balloon angioplasty thingy up inside the catheter, and they balloon the clot out to the sides of your artery wall. Then they put in the stent, a kind of scaffolding inside the newly cleared artery to hold back the plaque that was a clot. They will put pressure on your leg, to keep the bleeding down and you will have to lay flat for about 4-6 hours and not move your right leg at all. You'll probably go home in one or two days and feel fine. If you want more info, just ask, I've been there and it's not so bad. Best of luck, Karen
  10. My rheumatologist has me doing Forteo. It's supposedly the only osteo med known to actually build bone. It's approved and everything. I give myself a tiny injection every day, kind of a pain, but no big deal. You do it for two years. Maybe instead of battling the insurance company and doing something that may or may not work, why not go for the sure thing? just my 2 cents... Karen
  11. Well, today's the day. I got insurance approval and clearance from all my doctors to try Revatio. I have to stop nitro-bid of course. Have any of you taking Revatio noticed any side effects? Also, how long till it starts to work? Thanks again for all your help and concern... Karen
  12. I have gone to physical therapy, and was surprised to learn that STRETCHING is the BEST exercise there is for people with limited mobility. I have fibromyalgia in addition to sclero and osteo and when I don't stretch I suffer. I bought a stretch out strap like the one at the PT office and it comes with a booklet. excellent. I can't say enough about it. also the book by Anderson, called Stretching was recommended by my cardiologist. Do it! it works! Karen
  13. Celia, I just thought of something else...there's something we scleroderma people get, called pseudo-obstruction. You can find it in the archives here, or just google. If you still haven't gone to the bathroom after four days! And you are distended (your belly looks pregnant) and you have "labor like" pains, you'd better go to the ER. I had that a few weeks ago and I had never heard of it. Neither had the hospital. Thank god, my rheumatologist is THE authority and he told me what it probably was. At the ER they gave me pain medication and it relaxed me enough to open the bowel again. I was SORE for a week or so. Look into it and don't let this get any worse without professional help. It can be very dangerous. Peace, Karen
  14. Hi Celia, Boy do I empathize. I have celiac disease and no colon due to past ulcerative colitis. My diet advice is to eat tiny amounts at a time. I also have slow to empty stomach, I don't go to the bathroom for maybe six hours and then I go every 15 minutes for two hours straight. I haven't slept more than two hours in years. For breakfast a small bowl of watery oatmeal. Lunch, a little bit of chicken salad, maybe a small bowl of soup, some rice and beans, again a very small amount like less than a cup at a time. Dinner, whatever meat I make for the family, but maybe four bites and a tiny amount of rice or mashed potatoes. A small serving of very well cooked veggies. LOTS and LOTS of water. Drink sips all day long. Food has become my ememy and so I eat only to survive. I'm so sorry you are unwell, this is a huge problem, but you can learn to live with it. Best of luck. Write me any time! Karen
  15. What helps me is using calming skin creams and moisturizers in the bath or shower. Karen
  16. Hi Sam, I have a lot of knee problems too. The first step is to get an evaluation to see what exactly is the problem. I was misdiagnosed for years by my orthopedist, he thought my arthritis was between the teo leg bones and gave me shots and everything, nothing helped that he did. Finally, my rheumatologist said the arthritis was behind the knee cap and sent me to physical therapy. I was doubtful, but with a lot of work, it worked. Of course I have to keep it up and lose weight, but that's the crux. Find out why your knees hurst so bad, if it's getting up from sitting and going up stairs, the chances are you have what I have. Best of luck, it's a long hard row... Karen
  17. Hi Celia, A lot of gastro issues are linked to sclero. I have several and have been hospitalized for them. My rheumatologist is the one who has educated me on these since the gastro doesn't seem to know it. talk to your rheumatologist and when you go to the gastro, bring your rheumatologist records. If possible print out some articles on your problem to bring as well (many doctors resent this but a good one won't) . I wouldn't say this is the start "of something worse" but it could be related. Sclero affects many body parts and the digestive tract is a popular one. Do some searches using the search engine to the right of this window. I'd type in diarreah, bowel involvement, stomach issues etc. to start and read to see which fits your symptoms best. An informed patient is best. Best of luck, I know exactly how you feel..hope it clears up soon... Peace, Karen
  18. Hi Celia, I often have a 'coated' yellow tongue. if yours is the same as mine, you can try cleaning it well twice a day. They have a little tool called a tongue cleaner that scrapes the build up away. It's probably from a combination of medications and dehydration. Since you have digestive troubles, that also can be a cause. The tongue scraper is a little gross, a lot of debris will come off, and be sure to use it gently. Start as far back as you can, it can make you choke, but persist. Gently drag the tool forward across the tongue and you'll see the yellow stuff collect behind the tool., flick it off in the sink and do it again till the tongue is clean. Then brush your teeth, and use mouthwash. Persistence should make the job easier as the days go by. Drink a lot of water, we are often dehydrated. Best of luck, Karen
  19. Thanks for the responses, Mary, I am definitely worried about all the pills too. I have several other health conditions (as most of us do) and I have to watch what I take. It seems like some of the 'cures' are worse than the problems! However, I too, suffered gangrene, and like you, it too a year to go away and they were thinking amputation but let it die and fall off--ugh! never again I hope! I'd do almost anything to avoid that pain again. I was on increasingly higher doses of every pain pill, even became tolerant to them and wound up on a pain patch. I wrote to my rheumatologist so lets see what he thinks. Thanks again, you are all so helpful. It never ceases to amaze me how helpful this list is and how caring the people are and so willing to share. Also how informed! Scleroderma must produce some of the best self educated people on the planet! :) Peace, Karen
  20. Hi all, I have finally gotten the go-ahead from my cardiologist to try a new medication for my severe Raynaud's. I have already experienced a horrible year of gangrene leading to the loss of a finger tip. I tried norvasc and Tracleer but perhaps I was already too far gone for them to help. I'd like to suggest to my rheumatologist one of the above meds, Tracleer or revatio. I am wondering what is your experience with these. How long till you notice a difference? I am hoping to avoid problems this winter by getting an early start. At this point I have a finger that was turning black, and is now trying to ulcerate, but nitro-paste is helping somewhat. It's such a pain though, the nitro and headachy. What do you all think? Thanks in advance, Karen
  21. You can shower and swim and everything else with a port, there are no restrictions. Also, to correct one poster, the port is not in your vein, it is just under the skin. A tiny catheter is threaded into a nearby vein. It sticks because they use a needle to access the port. The thing is they almost can't miss because the port is bigger than a vein. Also, they have ones that are called low profile and are small, mine is the size of a dime. I also see that I was the only one not put to sleep for the procedure, I guess it depends on the doctor. Good luck. Karen
  22. Hi, I got a port placed after my recent trip to the ER where they tried 12!!! times to get an IV started and I was having a heart attack! 2 hours wasted! My rheumatologist said "never again" and I got a port. You are wide awake, it's no big deal. They numb the area, usually in your upper chest, mine is about 3 inches below my collar bone. They make a one in slit and also thread the catheter through your neck, near the collar bone. The whole thing takes about 20 minutes you go in and go home soon after. They use mine for iron infusions and blood draws. Some places will not access the port unless you insist. If they won't, I go elsewhere. I even had another ER team give me a hard time, saying "oh we do IV's all the time" blah blah blah, yeah right, you haven't tried ME! Hubby finally got them to use the port. You have to get it cleaned out with heperin every month if you don't use it. I love it. Except that you can see a little bulge it's not so bad and if you are a difficult stick it's wonderful. One little stick and you are giving blood like a pro. Good luck, Karen
  23. Thank you Sweet and Smurfette! I guess the frustration also comes from trying to be happy and carefree for my family and then feeling like I have to reassure them that I'm ok, or that I'm not on my bad days. I know, it sounds confusing. I guess it's just that I am a very happy positive person most of the time. I hardly ever think of myself as "sick" and then something happens, even something small, like a flight of stairs at a concert or I can't eat at the Chinese restaurant everyone else loves becaus eof celiac, and then I feel like everyones looking at me and thinking either, "oh poor Karen", which I HATE, or I think they are frustrated with me, which I also hate. I am very very lucky my hubby is awesome, but he gets tired too. Then he feels bad if he feels sick or tired or something, because he says "well, it's nothing like what you go through". I don't want to be a sick person! Anyway, thanks for listening...I don't know what I'd do if there wasn't this site.. Peace all. KAren
  24. Thanks everyone for your kind thoughts and understanding. My doctor says the bacterial overgrowth would be unlikely to happen to me since I usually go 8 times a day. I don't have a colon at all, the whole thing was removed 13 years ago due to severe Ulcerative Colitis. I have a reconstruction called a J-Pouch formed from the lower end of the small intestine. My rheumatologist thinks it was a pure pseudo-obstruction, which he describes as a sort of 'charlie horse' in the gut. The small intestine opens and closes to push food along. In scleroderma, for some unknown reason (GRRRR again with the 'unknown reason!) the guy closes and fails to re-open causing a build up of gas, digested food and bile to build up behind it. Since I responded relatively quickly to pain medication, he thinks that was the cause. I'm so tired of scleroderma. It seems like none of our body systems are free from fear of attack. One thing gets better another starts up. I have just gotten my finger under control, (it started to turn black last winter) the nail is dead and ready to fall off, and already the weather is getting cooler at night and another winter is impending. I know the saying "I may have scleroderma, but Scleroderma doesn't have me" but today, it feels like a burden. Sorry to be negative I know positive thoughts will help. I'll be better soon, I'll be back to my happy self. Just another set-back. Peace, and thank you for being there! Karen
  25. Well, I was in the hospital ER yet again last Thursday night. I looked like a pregnant lady and was even having "contractions" that were amazingly labor-like. I hadn't had a bowel movement in 38 hours and for me, since I have no colon at all, is unheard of. I usually "go" about 8 times a day. They diagnosed me with a bowel obstruction after x-rays and gave me two heavy doses of pain medication. (an aside here, I hate going to the ER!! They don't know anything about you and to get them to listen is a nightmare. They didn't want to use my port, insisting that they COULD get an IV in me, even though millions before them have failed. I finally convinced them to use the port with hubby's male-growling help. He'd watched as 12 times they tried before when I was having a heart attack!...then they wanted to insert an NG tube even though I wasn't vomiting--I also opted to wait on that...blech) So...after three or four hours of severe cramping and a medication induced doze, I finally passed tremendous amounts of watery stool and gas gas gas. They pronounced me fixed and the next day sent me home. They said it was probably adhesions and told me I'd need surgery, go home and call my doctor. I still can't eat much and it still hurts. I am horribly aware of movement through my gut and still distended, although not as bad. Liquid diet with some mashed potatoes. Enter my amazing lovable joyful Rheumatologist! I had a call into his office because he's supposed to be finding me a new GI, my present one is brain dead. He called me at 9:30 last night and springs into a dialogue about something very rare, but for us scleroderma folks, a reality--pseudo-obstruction. Apparantly sometimes our guts don't know how to move food along the intestines and we get this dismotility thing. Of course with me, it isn't quite that straightforward, having had major bowel resection, it could also be adhesions pulling on the intestines causing a kink that needs to be corrected. Sooooo, what to do? Wait and see if it happens again? Do a barium swallow which may cause the thing to happen severly again? I know you guys can't tell me, I'm just pondering aloud here. Anyone else have this thing? Let me know. Peace to all...hope you are well and not on a search engine looking for rare problems that no one knows about...sigh. All I want to do is hide my head and sleep. Karen :(
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