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Everything posted by KarenL

  1. Hi Karen, Nice name ;) First off, mittens work way better than gloves. In gloves, your fingers don't have each other next to them to help warm them. Don't bother. I buy by the bulk glove warmers, like hunters use. They are little rectangular packets, and I carry them everywhere. At school I put them in my pockets and when I get cold, put my hand in my pockets. They do make battery operated gloves, but I found them to be too cumbersome and heavy, you have to use 9 volt batteries! Plus, they never really got warm enough for me. You can google "battery gloves" and search. Good luck, unfortunately, I'm an expert at this. Oh, and ask someone else in the family to food shop with you to get the cold and frozen foods! :) Peace, Karen
  2. Wow, I never connected my hard as rocks nails with sclero....get thee to a podiatrist, (I know, ANOTHER doctor!!:( ) S/he will clip them safely for you and they have special tools and pain killers if you need it. Good luck, Peace, Karen
  3. Hi Peggy, Appealing is NOT a waste of time. I know how frustrated you feel right now. For one thing it's so wrong that we, the patients have to take this on! Secondly, that insurance companies are allowed to govern our fate...grrrr!! I recently went through the appeal process. There was a level 1 a level 2, and an independent review. I had to send them all my records, articles from peer reviewed literature on the treatment, my doctor wrote and we sat in on a panel discussion and got to present our case. STILL they said NO!!! So, then my wonderful, amazing doctor called the company directly. It took him 4 nights of calling, luckily they are on the west coast and we are on the east, so he sat down after work and waited on hold until he finally got through to an actual rheumatologist and was able to convince him. After 6 months of hard work, I got my treatment. Sad end to the story, the treatment didn't work, :( but DO floow the entire procedure, you may get lucky. I know, it's exhausting, but do a little each day and keep at it. Good luck, Peace, Karen
  4. Great tip Peanut, I use neosporin and a band-aid, but as soon as I stop, it comes back. Also, nitro-bid cream applied to the base of the finger helps. I do it at night and wrap it in a band-aid as well to keep it in place while I sleep. Doing it at night also helps you sleep through the headache that often accompanies nitro-bid use. Good luck. Peace, Karen
  5. Hi there, I just started Iron infusions and B-12 as well. They are really helping! I go every week, and while it is a pain, I have to sit for an hour and miss work, it's worth it. My B-12 was off the charts low as was my iron, I'd already had two total blood transfusions! The doctor says that with sclero, your red blood cells can be slow to regenerate, OR too big, making the transfer of oxygen difficult. That's why we are so tire and breathless. Good luck, again, it can't hurt! Peace, Karen
  6. Just another possibility since you mentioned carbs and chocolate, you may have celiac disease. My Rheumatologist says is very prevalent with scleroderma patients and I do have it. The symptoms sound all too familiar. You can find out with an endoscopy, they will look to see if the villi in the duodenum are damaged. Good luck but in the meantime, try going gluten free and see for your self how it feels...it can't hurt. Peace, Karen
  7. Hi Barbara, My hubby uses a CPAP (since Aug '07) and still has issues on and off. Forget the full face, it made him claustrophobic. He uses a mask called the hybrid since he too, is a mouth breather. it covers the mouth, and has two little "pillows" that sit in the nostrils. It's far from perfect, but he keeps trying. There is a yahoo group dedicated to this issue, you should join! They talk about all sorts of problems like yours and there are tons of members. Good luck. Peace, Karen
  8. Hi Martin What a sweetie you are to inquire about your lady. I can tell you, my husband is a lot like you in that he wants to help. It's a fine line between helping and hovering. I was always so independent, that sometimes it's hard for me to ask for help and hard to accept it. My best advice is to ask your lady what she needs help with and to back off if she seems to feel smothered. Ask her if she wants help or if she needs some space. It really helps for my hubby to come to the doctor visits, as he takes notes and asks good questions. He also remembers things that I forget and can listen for me. Two heads are better than one. Keep her warm! Especially when you want to be intimate. Be patient. With all of the meds and the fatigue and pain, it's hard to be in the mood for love. We discovered the wonderful world of electric blankets and it really helps. I usually start off in my "cocoon" as hubby calls it, but eventually I can stick out a leg, an arm and so on, till the heated blanket is up against my side to hug and warm me and hubby is on the other side. Turn up the heat in the bedroom before hand. No matter how warm you are she will always be cold, there's no need to say, "but it's 80 degrees in here!" It doesn't matter, if she's cold---she's cold. A hot bath, some nice scented oil rubbed on the sore shoulders, and patience go a long way toward a successful evening. Take your time! We have a heated blanket on the couch where we watch Tv and another on our bed. I also have a scarf that heats up in the microwave, an automatic car starter was a lifesaver and a much appreciated gift. You can also shop for groceries with her and get all of the cold and frozen foods so she doesn't have to. Those are just some of the things my amazing husband does for me. Good luck to you, you sound like a sensitive loving man. You guys will be fine! Peace, Karen
  9. I know how you feel. Sometimes I ahve to pull the car over and nap so I don't crash! Make sure you have your blood levels checked. I recently found out that I am seriously anemic and also have a B-12 level that is undetectable, both of which cause fatigue. The doctor says they are usual in scleroderma patients. I had a chest port put in on Tuesday and today I will begin infusions of iron and B-12 shots. Otherwise, just nap when you can, the sleepiness seems to come and go for me. Best of luck, Karen
  10. Hi all, I'm back. :) The port insertion went without a hitch, the novacaine shots to numb the area were tough, but then the conscious sedation was nice. I'm still quite sore, they made two incisions and I can't shower for a week...blech. The flolan didn't work, :mellow: and so now the battle between my doctors begins. The rheumatologist wants to put me on revatio, but the cardiologist says no. So, they will be talking. Also, they found out that besides me being extremely anemic, I am off the charts low on B-12 and folic acid which I will now have to give myself shots of. Hubby is hoping I will become an active tornado, with iron, B-12, and revatio running through my veins! Anyway, just catching you up. Thanks for all the support and good feelings...I sure do need them! Peace, Karen
  11. Thank so much ladies! Every single one of your posts made me smile. Wow, I needed that. I am currently seeing a therapist for talking things over and she's been very helpful helping me see that I need to concentrate on myself. It's just so unusual after 23 years of mothering and 25 years of teaching. I'm used to being the caretaker and not very good at being the one who needs care. I am learning though and so very lucky that my husband adores me and loves to care for me as well. He had to flush my line this morning and it was so touching. Anyway, I'm a little scared about the port tomorrow, but I have an excellent medical center and an awesome doctor whom I trust 100%. Whatever will be, will be. Thank you all again, this site is my sanity. Soooo glad you are all out there and we can help each other in times of need. I'll let you know how it goes...nitey nite. Karen
  12. Hi Netta, I just went through a YEAR of appeals etc to get approval for flolan. You need to check with your plan administrator and see what the verbiage is on your policy then talk the way they do. Call the actually parent company and see what their appeal process is. Get your doctor to write as well, get ALL of your records and get lots of information that is valid from the internet. (look for sites that are edu. as opposed to dot-coms) Print it all out, make a copy for yourself and one for your doctor, send it to the company. Prepare for a battle. Prepare for emotional telephone conversations, and the possibly long appeal process. Follow their instruction to the letter. If they say call them, do it, and have a prepared speech written in front of you. many companies require two appeals and an independent review. Don't be discouraged. At the end, when all of my options were used up and they still said no, my doctor tried for four days to talk to an actual doctor at the insurance company. Once he got the right person on the line, they said yes! But it took a lot of blood sweat and tears and as I said a whole year. Get started now, and don't give up. Best of luck keep us posted. Karen
  13. Hi there, I don't know the actual mechanics, but it's happening to me too. I can see where the skin is kind of pulling away from the nail on some fingers. Ask your doctor, he/she should be able to explain. I think it's the loss of blood flow, after awhile the vessels actually shut down and no blood gets delivered. Usually it results in gangrene, but maybe this is a lesser (thankfully) form? Maybe it's LESS blood flow instead of NO flow? Maybe someone else will know..mine are also tender and sometimes numb. Hope you're well today. Peace, Karen
  14. Hi everyone, I know, I'm usually upbeat but this is really getting me down. First of all, I just spent 4 days in the hospital getting my long awaited flolan infusion and it doesn't seem to have worked! :( My doctor is disappointed too, but my Raynaud's is no better. They used a PICC line, and I came home with it. It was awesome, not to have to get poked so many times, at least now they all realize I have no veins. Now, it seems my iron is so low, I'm not making red blood cells and I'm close to needing weekly transfusions! No wonder I've been falling asleep at the drop of a hat! Anyway, the plan is, tomorrow they are putting in a port so I can start on weekly iron infusions. I still have hope that it will help with at least some of these symptoms. I remember when I was diagnosed 2 years ago, the rheumatologist said I'd eventually need a port, and It seemed so far away. Now, it seems eventually is here. :o :unsure: I fear I'm becoming clinically depressed. I am 50 years young chronologically. Mentally I feel about 12. Physically about 70. I'm in the midst of so many treatments, I can barely work part-time. I'm a teacher and I NEED to teach. It's my vocation! I am currently substituting per diem and am taking my tests to transfer my certifcation to another state. Some days, I think what do you think you're doing? You can't have a full time classroom! No way. Yesterday I had to sit down three times after standing for just a half hour! A simple food shopping is some days too much. I get these horrible lower belly pains that "they" think are adhesions from surgery. I'm being treated for that as well. On top of everything else try to schedule in special time with my husband or time with my 16 year old and I'm reduced to a crying mess feeling sorry for myself and it's not pretty, nor is it ME! I've always been the happy smiling optimistic one. Where is that lady in the picture? :unsure: Any words of wisdom, hope, or optimism is needed here. Hubby thinks I shouldn't spend so much time looking at and reading about scleroderma as he comes from the school of positive thinking. While I agree, I also NEED to KNOW. I can't go through this blind. Oh, and what to expect getting the port put in, recovery from that and long term care? Karen
  15. Hi Susannah, Thanks for the reply. I had a central line once that was in my neck, and was a triple thing for taking blood, putting in meds etc. This will be put in my arm I believe. Thanks for the reassurance. I just feel so awful all the time, I'm willing to try, but it just seems like another thing to take care of, and yet one more thing to explain to people that makes me feel like somethings wrong with me. I just get weary of all the care I need, wish I could be normal--ya know? Peace, Karen
  16. I got the call from my wonderful wonderful doctor who has been appealing my flolan case for months now with me. He finally got to actually talk to someone and they said yes! Now I have to get a PICC line and I'm dreading it. Am I being silly? My veins are so bad, the last infusion I got they had to change the IV 9 times in 24 hours. The poor little guys just shut down. Plus, I have to get iron (ferritin) infused, I'm hoping it's going to help with the sleepiness and leg cramps. Just writing this, it sounds like it's gonna be worth it but I'm a little scared. How to care for the PICC? I HAVE to do this, my one finger is about to ulcerate and another is about to turn black, both are very painful. The doctor hopes the flolan will reverse it before they get too bad. Hope he's right! Peace, Karen
  17. Hi "Cold" and welcome, My brother lives in Rice Lake, so I know all about your cold winters!! Yikes, Raynaud's in WI....that's tough. Read up on this list to see if you have any other symptoms. The thing with Scleroderma is that it is a collection of symptoms, rather than any one specific thing. There are many many different "faces" to this disease, and no two people seem to present in exactly the same way. Read up on CREST, or Limited Systemic Sclerosis. That is usually slow progressing, or sometimes never progresses. The "C" stands for calcinosis, or tiny calcium deposits usually in the fingers. The "R" is Raynaud's. the "E" is esophagus usually maniests in acid reflux disease, the "S" is for sceradactly, or skin tightening. Many people don't get this one, but some do. and the "T" is for telangiascias, or little red dots on the face, hands, neck and inside the mouth. They are tiny broken cappillaries. That collection of symptoms may cause you to test 'slightly positive'. You are going to want to find a specialist. At least get to a Rheumatologist, they are the ones who usually deal with scleroderma. You best defense is knowledge. Don't take that sentence lightly. Read as much as you can and ask a million questions. Everyone here will help you. STAY WARM...get a car starter, use hand warmers in your shoes, heated blankets, whatever keeps you warm. Stay in touch, we'll help as we can. Peace to you, Karen
  18. Hi Tracy, My pouch is fine. It's not 100% great, but if I watch my diet, things are acceptable most of the time. I get up twice a night and have probably 6 BM's a day. If I eat too much, or something that disagrees with the pouch, I pay with frequency and urgency, but I'm pretty careful. The gluten free diet has done wonders for me in that department. It took about 3 months for me to really notice a difference on the diet. If I were you, I'd consider the sores on the feet to be the worst problem and try to get that under control ASAP>>>Good luck... Karen
  19. Hi Tracy, What's the carbohydrate specific diet? I have a j-pouch, and have had it since 1995. Never had to have a bag, gladly. Take care, Karen
  20. Hi Tracy, Welcome, glad you found us! I too had ulcerative colitis, and then the raynaud's started. I've recently been diagnosed with Celiac, (gluten intolerance) so they can be related! The rash may be from celiac. Do a google on that too, see if your symptoms overlap. They say scleroderma is not genetic, but the autoimmune aspect does seem to run in families. Once you have one (ulcerative colitis) you seem to get more. I am not qualified about the tests to ask for, but you can search the medical guide on this site and I hope some of the medical people will answer you. Don't talk to people who are negative, often family members are scared of the unknown and just want you to be ok, so the way they deal with it is to deny. I'd be glad to talk to you anytime, since our stories are so similar! Get good care, and do a lot of research, you are your own best advocate and researcher! Peace, Karen
  21. Hi Kiwi, I haven't tried the cialis, wish I could but if the ulcers get better why stop? Not getting a period is not a bad thing. In fact, they've decided that the fewer period we get in alifetime seem to offer some protection against breast cancer! Since breast feeding moms tend to get the cancer way less often than women who didn't breastfeed, they have made a coorellation between fewer periods and less cancer. Ulcers are way worse than no period. I can't imagine why that would make you stop taking the cialis? curious... Karen
  22. Hi Lauren, It's so frustrating in the beginning. I have CREST, even though it's not really called that anymore. It's limited systemic sclerosis. You may never progress any more than you are now. I have almost no skin involvement and was diagnosed two years ago, and have had raynaud's , GERD, and telangiascias for 10 + years. If you have limited, it generally progresses slowly or not at all. Good news for the most part! Get the book "The Scleroderma Book" by Maureen Mayes. And get a good doctor who specializes in scleroderma. You need someone who will keep up with the varying symptoms of this multi-faceted disease. If you need more info, this site is excellent. Also check out sclerodema.org, where there are lots more articles. Good luck, Peace, Karen
  23. Hi Phyllis...wow, how could anyone, least of all a doctor say this is in your head? Get a new doctor --TODAY!! Search the site here and find someone who is knowledgable. Those ulcers are serious and can result in digit loss! Do not put this off. Ask for a prescription of Nitro-bid ointment and apply it to the base of the affected finger. Good luck, you are in a frustrating position. Karen
  24. Thanks for checking in on me... I am desperately fighting to not let this poor little guy ulcerate. I have a crack that is very very sore. At night I put neosporin with pain relief gel on it and a band aid to keep it moist. By morning it's a little better, but once I take a shower and it dries out, we're back to square 1. During the day, at work and all I forget to care for it, and when the Raynauds attacks come, and the tip is purple, the crack looks a little shiny. So I real quick warm it and so far so good, but it is threatening. I sooooooo don't want an ulcer or , gangrene again!!! I lost the tip of a finger two years ago over an extremely painful 8 months, it was horrible!! I became immune to all pain killers and wound up on a pain medication patch. During that time I was alo hospitalized for a thoracic sympathectomy and a heart attack! Anyway, enough about me...I need to think positively an imagine pink happy healthy fingers. peace everyone, hallelujah, sping is coming!! Karen
  25. A year after being diagnosed with scleroderma, I was also diagnosed with celiac disease, or gluten intolerance. It's been so prevalent in scleroderma patients that my rheumatologist is doing an in-depth study of the correlation between the two. He's found four cases just this year of overlaps between the two diseases. You may want to be checked for celiac. Your symptoms sound like it's a possibility. Karen
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