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Posts posted by jefa

  1. Hi, emmie. So nice to hear from you and especially to get such a thorough report. Glad you are settling in with your new set of doctors. It took me two years to get changed over when I moved. Wow, the encephalopathy sounds like a handful all by itself without all the other stuff. It must be incredibly frustrating to deal with. I wish you boatloads of patience with your returning family members. Not sure how well I could cope with that. Please stand your ground when it comes to carving out quiet space for yourself and let them know your limits. It is so easy to do just one more thing until you are doing it all.

  2. No joy, Sweet. I thought it might be in the old MSN forum so I had a look over there, too -- wow, I can't believe how much nicer this one looks and feels. At the time I was reading it, it didn't seem that bad.


    I keep my hands in pockets or sit on them when it's cold. My feet are just as bad. I have a couple of pairs of very fuzzy socks - one pair in bright purple which are quite toasty. Sometimes I drink a cup of hot water just to having something warm to hold onto.

  3. Thanks Erin and Janey for the excellent links to warnings about quinine.


    Hi, Margaret. A lot of people don't get enough potassium, but it is safest to try to get it through eating a balanced diet. Potassium rich foods include broccoli, orange juice, potatoes, bananas, soybeans, avocados, apricots, pomegranates, parsnips and turnips. There are lots of other sources.


    Some people with kidney problems are advised to avoid large amounts of potassium. Perhaps Sherill could add to this. Apparently the kidneys can't process it and the buildup can trigger fatal cardiac arrhythmia.


    As you said, your physician has advised you to take the supplement. It is always a good idea to consult your physician before making a significant change even with over the counter (otc) meds.

  4. Welcome to the Sclero Forums, ChefKat. I am glad you found us, but sorry about your recent diagnosis of scleroderma. I don't want to sound like a wet blanket, but I do think there is a bit more to discuss here. First of all, as you mention, you have had the piercings much longer than the scleroderma, so they have presumably healed before the autoimmune process was triggered. Existing piercings may not be a problem for you, but new piercings might prove to be quite a different story. Keloid formation could exaggerate the appearance of a scar. Something as simple as a paper cut could form a relatively larger scar. Cutting out the keloid can result in a new one forming in the same location. Please read this article found on the site about keloid formation.


    In my opinion, there is as much risk from piercings as from tattoos.

  5. Barefut, living with scleroderma is a difficult enough challenge for anyone to face, but when it comes down to it, we are in spite of it all, only human beings with human frailties. You have been so strong and supportive for so many of us, here, but you have to know that we are all here for you, too.


    Yes, indeed we all feel that way at times: insecure, unsure, alone, not safe.Overwhelmed. That's why this place is such a good place to gather and exchange information, emotional support and hugs.

    Hugs to you, Barefut, and

  6. I have no personal experience with gastric bleeding, though there are a several members who have had such problems. I am sure they will join in the discussion. It is a three day holiday weekend, so there may not be too many people around, but be patient. In the meantime, you may find some useful information in our page on Gastric Antral Vascular Ectasia (GAVE), commonly known as Watermelon Stomach. There are some patient/caregiver stories at the bottom of the page which may help you, as well.

  7. Hi, Sharon. I searched through the site and didn't find any connection between scoliosis and scleroderma, though I know that isn't exactly what you asked. It seems more likely that the pain would be caused by the scoliosis than CREST, but it wouldn't hurt to ask your doctors. It could also be from something completely different. I do hope you find some relief for it. Erin has some good suggestions.

  8. Hello, Kobi. Let me add my heartfelt welcome. I am sure you must be frustrated and wondering what is going on with your son. The fact that you have come here looking says worlds--you have come to the right place for information and support. Read whatever you can, but try not to worry too much. Do let us know how the week goes and what the doctors have learned about your son's condition.

  9. So glad to hear from you, Gordon. I am pleased that your participation in the forums has had such a positive effect. Good luck with your treatments and keep us posted on your progress. Ejoy the bike riding as well, but don't over do it.

  10. Welcome to the forums, Lori Ann. The others have said so much already, I am just going to say I'm glad you found us and hope you get us much support from the group as we all have. Join in on the various discussions and realise that you are not alone.

  11. I have a problem with this has well.. the padding on my heels is very very hard, and the skin on my toes seems to be jagged. I also have a problem with the skin separating on my toes.. so I have to be careful especially when walking on carpet. Every now and then the carpet will snag some of the harder skin thats become separated and literally pull it off. When that happens it leaves a raw streak on my toes.

    I seem to have skipped over this post the first time, Diana. You are describing a different problem completely. When I first saw the podiatrist (through the rheumatology clinic, which has one on staff) she used a blade to remove some of the callous tissue. I told her I preferred to soak my feet then rub off the loosened skin with a towel. She said soaking the feet would dry out the skin, so I let her do it. After she did that, I had some of the what you described. There were thin lines of hard flesh that kept getting snagged on the carpet, leaving tender areas underneath. After those healed, I went back to my soaking/rubbing regime (just part of my normal bath process) and just added moisturiser to my feet after.

  12. Barefut, I have suffered with ingrown toenails since I was 13 years old and have had several surgeries over the years. Surprisingly, in the last couple of years, there has been less difficulty after the removal of the root. In fact, the nail itself seems less inclined to hang on for dear life and comes right out. It takes ages for it to grow back in. On the other hand, the nail itself seems to want to separate from the toe a bit at the edge and I also get bruise lines across the nail whenever I have a nasty raynaud's attack. Get the surgery - the pain is not worth the bother.

  13. Hi, Diana. The 'lost' padding is the soft tissue under the skin. You can have very thick skin on your heels and the ball of your foot, but the cushion under the skin has thinned allowing your bones and connective tissue to spread out.

  14. Hi, ladies. I have this problem, too. If you search using "Mayo Clinic" and "foot problems" as keywords, you can find an article on foot problems in women. In the article it explains how the natural padding under heel and forefoot thins and your feet become wider and flatter. It's all part of the ageing process and other things (bad shoes, posture, habits, etc.) can contribute. If you check out any image of the anatomy of a foot you will see that there is nothing actually connecting the metarsals together accept tendons, ligaments and muscles. There is no way around this shifting being painful if your feet are not cushioned and supported properly. My rheumatologist instructed the occupational therapist to provide me with leather pads attached to an elastic strap. The padded leather fits under the ball of the foot. I can't wear them in shoes, but they help my feet feel better when I walk around barefoot. I also have some socks with woven in elastic around the forefoot. They help, too - like a massage, almost. They keep everything closer together like it used to be. On cold days I put my bare feet right into a pair of sheepskin lined boots. The sheepskin really makes them feel comfy. Unfortunately, they get hot quickly in warmer weather.

  15. Taking vitamin C along with it can help with absorption of iron. Any excess vitamin C will be excreted. On the other hand, vitamin C is acidic, so when you take it may make a difference if you have a problem with reflux.

  16. Hi, Celia. Glad to see your computer problems have been resolved. It is funny you mention that you noticed your wrist tightening in the shower as I have seen several members notice tight skin in the shower first. To answer your question, fibrosis is tightening/hardening in the layers of skin, not the flesh under the skin, though edema can make the tissue seem harder than normal.


    I first experienced tight sausage fingers, but I did't know about scleroderma when this was happening. The next place was the skin on the back of my legs from ankle to mid calf. The skin is tighter, very smooth, shiny and hairless. I still get hair on my shins. More recently there is a mask of tightness around my eyes and cheeks and also around my mouth, along with radial furrows. I find myself wanting to 'wash off' the tightness in my face.


    Hope you can find something useful in the site's page on Skin Fibrosis.

  17. Hello, Diana. I presume you mean systemic scleroderma. I sincerely hope you don't have it, though morphea is bad enough. I do think it would be a good idea for you to get seen by a rheumatologist, rather than a dermatologist. Your pain could be coming from any number of conditions and a rheumatologist would be more likely to see the broader spectrum of symptoms in the right light.

  18. Welcome to the forums, Chris. I am sorry to hear about your problems with what may be a variant of CREST glad you found us. Quite a few forum members have CREST so I'm sure they will be willing to compare notes. Here is a link that gives a lot of information on CREST. I see Sweet has provided a link on Dysphagia. Please keep us posted on the results of your tests.

  19. How frustrated you must be with this news. Are you allowed to drink anything at all -- water, for example? I understand the psychological reasons for wanting to eat a digestive, but are there things you could suck on or chew on that you didn't have to swallow, just to get the feel of something tasty in your mouth? Hugs to you, sweetie.

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