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Posts posted by jefa

  1. This would scare me, too, peanut. Not sure whether I would be more scared that I was choking and not knowing it, or because my husband allowed me to do it without waking me up. If you are going to be sleeping that soundly, I do hope you are taking all the other precautions: elevated bed, etc. Take care, please.

  2. I have one, too. My gastroenterologist said that 30% of people over 50 have a hiatus hernia (in the US, it seems to be called hiatal hernia, over here I generally hear hiatus hernia). Like Janey said, the worst for me is bending over with a full stomach. My occupational therapist gave me a very cool picker upper which has helped considerably and I now get hubby to clean up the little stuff I drop while preparing dinner. All three of my doctors have told me to lose weight as the excess poundage exerts pressure on the diaphragm. I also dress in very loose clothing, sleep on a wedge pillow and try to avoid eating for several hours before I lie down which I try (not very successfully) to sleep on my left side.

  3. Yes, thanks for letting us know the results of your biopsy, Gordon, and thanks to Janey for the link. I am sure you must be both relieved and anxious at the same time. Do keep us abreast of your treatment progress and know we are here when you need someone to talk to.

  4. All of you have such great input on this subject. I guess this group is probably the closest I am going to get to a support group and I couldn't ask for a better one. Anyway, it is nice for those of you who do have the personal contact with other sufferers. As for support from significant others, that's a whole 'nuther subject, ain't it? ;)

  5. Are you sure you want to disclose this (if it is not too late)? Not sure about Ireland, but in the UK, you are not required to disclose a disability, though if you choose not to do so and later have a grievance against the employer for discrimination based on a disability, you may lose ground against the employer. The question is how much your linear scleroderma will affect your ability to do the job and whether allowances should be made for you because of your condition. If you decide to tell them, or have already, keep it simple and to the point, giving them the information as it may affect your ability to do the job. My gut instinct says that for a summer job, it may not be worth the trouble of explaining it at all, but only you know what you have to deal with.

  6. Hi, Sharon. Calluses (or callouses) on the balls of the feet are quite common in the general populace and tend to get worse as we age and the soft tissue in the foot disappears. They are your body's way of responding to uneven pressure. I was given some othotic devices which were nothing more than a leather covered piece of padding attached to an elastic strap. They are quite helpful to wear around the house (when I tend to go barefoot), but I cannot tolerate them with shoes on. I also have some strange harder areas of skin on base and sides of my palms and on the extreme tips of my fingers which I do think is related to scleroderma (as does my rheumatologist). I can not see any connection between what I do daily with the position of this hardened tissue. Well, I type and rest my hands on the front of the laptop, but this action should not cause the degree of hardness that exists.

  7. I am not a medical professional, but I would caution anyone against increasing the dosage of their prescription medications without the advice of your doctor. It is easy to look around you and see others taking medicines you aren't taking and think, "Hey, I should have that, too!" or see that someone has a different dosage prescribed and wonder whether they should be taking that dosage, too. Many things have to be taken into consideration before a doctor prescribes for us: age, weight, other conditions, interactions with other medications. Please consult your doctor about any changes you want to make in your dosage of a prescription.

  8. Welcome to the forums, Wendy. I am glad you found us, though sorry it is because of your scleroderma. Nice to see you jump right in and post helpful information on your first day. You will find the rest of the group is quite willing to share what they know and offer support. The site is full of useful information which I am sure you will discover.


    Patty, don't worry about being a forum hog - if you don't ask, you will never know. For each person who posts a question, there are certainly others who haven't posted who may have the same question. Sorry I can't help with your bruising, if that's what it is, but I would bring it up to your doctors.

  9. If you start researching the various tests online and find tables listing 'normal' ranges, you can ask your doctor specific questions about the results. I started doing that and one of the interns asked me if I understood them. I said, "Well enough." Once I started asking regularly, my rheumatologist started routinely giving me more information. Now all of the lab results are computerised and can be accessed at the clinic. They always give me a printout when I ask. Then I take them home and look up everything I don't readily understand.


    At my last rheumatology appointment my file hadn't arrived (because it was still at the GI clinic from my endoscopy) so the rheumatologist gave me a handwritten form report to take to my general practitioner. My husband and I were entertained for a good little while decoding all of the scribbles. It was fascinating.

  10. Good to see you posting again, Dee. I hope that means you are feeling well -- I seem to recall you had to have surgery in the past few months. I am sorry to hear that your mother has now been diagnosed with scleroderma. It must be frustrating that all three of you (including sis) suffer from major illnesses when it comes to offering each other support. Do you have any other siblings? How old is your mother?

  11. Hi, Kristi. Glad to hear your test results were good. I don't personally have any experience with these issues, but there was another thread recently posted considerable discussion on your questions on PAH. In that thread, Sweet posted a link to the site's information on Pulmonary Hypertension. I hope that you will find some useful information in these two links and I am sure that others who know more will post here eventually.

  12. Thanks again all of you. As Shelley says, I have some big shoes to fill with Heidi stepping down. I must admit I go barefoot most of the time, so it should be interesting. Barbs, you have a unique and wonderful way with words and your blogs, written in your own inimitable style and voice, will always be worth reading.

  13. Margaret has a good point, Betty. I am not a medical professional, but the source of this pain could be a number of things. Examination by a doctor would be recommended. Is the prescription for prednisone something she was going to do anyway, or was this only a result of the phone call about neck pain? I would ask for an examination.

  14. Hi, Birdman's Wife


    Shelley has given you excellent advice. You may also find it useful to read the other thread on choking which is an interesting discussion of various experiences by other forum members. I was wondering when I read your post if Birdman is sleeping flat on his bed or if he is elevated to keep stomach contents from flowing back into his throat. Even a few drops of this can cause choking. Good luck with sorting out this problem.

  15. Very interesting discussion. I take a prescription NSAID regularly for the inflammatory arthritis. When the NHS stopped prescribing Celebrex, my general practitioner started prescribing omeprazole (a proton pump inhibitor equivalent to Prilosec) to counter the irritation of the NSAID. At the time, I wasn't having (or hadn't noticed) any heartburn or reflux problems. About the same time I started having problems with Raynaud's was when the reflux started. Proton pump inhibitors actually prevent acid from being produced in the stomach, which is why you should take them before you eat. I was beginning to suffer more with reflux so the general practitioner tried a second dose of omeprazole in the evening. It had no effect. Then he tried having me NOT take the omeprazole for a day or two and the reflux went wild. He had me go back to one a day and referred me to the GI for an endoscopy which found the hiatus hernia.

  16. I have found that drinking water with mouthfuls of small particles helps to get them down, though sometimes I even choke on water. It gets worse when my esophagus is more irritated, like when I fall off the low acid wagon with very spicy foods or lots of tomatoes. Good to see you back and posting, Donna.

  17. Hi, Nelly. I can't add much to the good information that has been given in this thread accept that I have also had a dry, non-productive cough which had worsened over the past few years. Like peanut and Jen say. however, mine has improved considerably since I started taking charge of my reflux problems. I take omeprazole (a proton pump inhibitor, Britain's equivalent to Prilosec), watch what I eat and sleep with my head raised. I also keep some antacid tabs nearby, which surprisingly work better to stop the cough than a cough drop or sip of water.

  18. Hi, guys. I have been following these lung involvement threads with considerable interest. It is probably my greatest worry, though like Sweet, I don't have any symptoms which would signal lung involvement at this time. I do get short of breath when I walk up stairs, but I am overweight. I have had a dry cough for a couple of years at least, but it seems to improve when I have my reflux under control.

  19. Good information, Erin. My doctor and my first rheumatologist argued about Plaquenil/hydroxychloroquine. The rheumatologist viewed it as a harmless way of diagnosing rheumatoid arthritis symptoms. He said that it works for some people and doesn't work for others, but if it did work, it was a lot safer than the next line DMARDs such as methotrexate. He said while it works on inflammation, they are not sure exactly HOW it works. My general practitioner agreed reluctantly but at the first sign of visual problems (I was seeing light flashes and had a grey rectangle cloud appearing in front of my eyes) he made me stop taking it. The symptoms showed up before I had taken it long enough to know if there was any benefit -- after about a month. The visual problems went away immediately when I stopped taking it.


    By the way, welcome to the forums, Michelle. As you can see everyone here is really good about sharing their experiences and information. While many people on the forums (as you can see from the answers in this thread) have found relief from Plaquenil, it is good to understand the risks before making a decision with your doctors about any drug.

  20. Hi, JG. Can't add anything to what the others have said -- definitely bring it up to your doctors on next visit.


    Barbara/relicmom, it probably is the macular degeneration that nixes the plaquenil. The Amsler chart I was given to check my vision against while I was taking it is the same one my mother was given to check the progress on her macular degeneration. My doctor took me off the plaquenil when I started having some strange vision problems, even though the optometrist said there was no evidence of damage. He said he would rather err on the side of caution with something like eyesight at stake.

  21. Hi, Ann and all of you.


    My hands give me a lot of bother as well. It's hard to find the right words to translate pain to another person. All of the words are so subjective. What might be a zing to one of us may be a twinge or stab to another. I find that if I compensate for one sort of pain by, say, not moving a sore joint, or resting it in a certain way, it may have a knock-on effect to another part of my body. For example, if I sit a certain way to avoid the pain in my hip, my neck will be stiff. I have found that gentle and regular stretching movement does a lot to help.


    I did a search in the medical part of the site and found a super set of hand exercises that may help: Wrist Exercises

  22. Hi, barefut. I have also had a problem with metallic taste off and on. It was really bad for the short time I took an antidepressant that was prescribed to help me sleep. I couldn't tolerate that effect, so I stopped. The Mayo website says that the most common causes are medications and oral infections and/or hygiene. They suggested regular brushing and tongue scraping.

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