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jefa

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Posts posted by jefa


  1. Welcome to the Sclero Forums, 2hope. I am sorry to hear of the problems that brought you into our group, but you have definitely come to the right place for information and support. Please continue to jump in with your experience and questions.

     

    Jefa <--resident expert on senior moments


  2. I do suffer from insomnia. I don't know if you could say it is a specific symptom of scleroderma, but it certainly seems to be prevalent among members of the forum. Here is a page on the site discussing Sleep and AutoImmunity. Changes in sleep patterns may be related to sleep apnea, GERD and side effects from some of the drugs we are taking.


  3. I have known several people who have had the surgery, my mom among them. They all said it was a big relief for them in quality of life. I guess how the scleroderma will impact the situation is unpredictable, as each case is so different. Do listen to Janey's advice (always good in my book) and talk to the doctor about your meds.


  4. Hi, Margaret. I am sure it was stressfull for both of you, though it sounds like it went well enough. I hope that the results allow you and your primary care physician to come up with a reasonable treatment plan.


  5. Hi, folks. Many of you have posted in our most popular thread, Getting to Know You. Some of you have not, as it tends to fall off the front page now and then. For the moment, we have 'pinned' it so that it will keep a special place at the top of the Forums list. If you haven't yet read the whole list, I suggest you do that when you have a few minutes so you can get to know the other forum members that little bit better. If you have read most of it and want to jump to the end, click on the words "Last post" in the far right hand column. This will take you to the last page. You can also click on the final page button (plain cream with no symbol in it) at the top of the topic. If you hover over this button it will say "Go to last page."


  6. Welcome to the forums, Emmie. :)

     

    No, you haven't yet married or had children, but you are alive and wondering about what is going to happen in your life. There are other young people in the forum - kobi has posted elsewhere that he is afraid of what is happening and would like to have some perspective of others his own age. Louise and Gareth are other young ones and I believe there are others, though my mind is blank at the moment. Dancing is your passion? Good thing, as exercise, stretching, keeping your mind and body challenged and active are all important ways to keep the disease from getting the upper hand.


  7. By all means, Jennifer, do NOT shut up. Appearance self esteem (ASE) is rated second only to fatigue in one study: Appearance self-esteem in systemic sclerosis--subjective experience of skin deformity and its relationship with physician-assessed skin involvement, disease status and psychological variables. and Body image dissatisfaction among women with scleroderma: extent and relationship to psychosocial function in another. It is a big deal and we need to give these seemingly superficial aspects of the disease their proper importance in our lives.


  8. Does anyone know what normal white counts are? The numbers are a bit different here - it seems there is some variation from country to country in the way results are recorded. I always thought a high white count was indicative of infection. Perhaps someone could explain it for me.


  9. Welcome, kobi -

     

    Your mother recently posted concerns about you going into hospital for tests using your id. We thought she was kobi, so it will be showing up as your 'first' post, Teenager, scleroderma help.

     

    I have linked to it in case you haven't found it already and because there are some good links in it. We have several young people in the forums, so I hope they will chime in soon with some of their own experiences. I know you must be scared, but you are lucky to have found out soon enough to take the bull by the horns early on. I am sorry you found us because of your pending diagnosis, but you will find this community a very friendly environment for informaiton and support.


  10. Ooh, sorry to hear about this new development, peanut. Sounds like you really have a good doctor. I hope the new drug is available soon. I have nothing to add on the other drugs, but Janey seems to have had good luck with the Bosentan.


  11. I feel for all of you that suffer with polymyositis along with the scleroderma, bad enough on its own. Elehos, Janey, Timo and anyone else who has this involvement, I wish you the strength to keep moving in whatever ways you can. It is heartening to hear how effective the treatments are on this illness.


  12. Sometimes it takes those closest to us the longest to see what's going on. I guess that is just first class denial. I agree with Janey in hoping this experience may open some opportunities for your daughter to embrace motherhood. Love to you all through this.


  13. Hi, Bunky. You have every right to be confused--and to seek another opinion. Perhaps you should be seeing a scleroderma specialist instead of a rheumatologist (and his cohort dermatologist). In spite of your negative ANA (I went back and read your other posts again), your positive skin biopsy and other clinical symptoms should be enough to get you in to see one.

    This link should help you in Finding a Scleroderma Expert.


  14. Hello, Sheri. I see the others have welcomed you in the Choking thread, so I will welcome you here. The Sclero Forums hold a wealth of useful information and more hugs and warm wishes than you can imagine. I am sorry to hear that you are having to cope with two major illnesses. I had uterine cancer which I believe may have been partly responsible for triggering the scleroderma, but fortunately did not have to any chemo or radiation. My rheumatologist asked me a few months back if we were ready to take the cancer off the diagnosis list (it will have been five years in October) and I reluctantly agreed. I will continue to keep it on my own mental list, however.


  15. Welcome to the Sclero Forums, eah. Glad to see you have jumped right in with helpful advice. I am sorry you are having problems with your lungs. You will find this is a great place to come for information about scleroderma and related illness and to find (and give) much needed support. Thanks.


  16. Hi, Celia. As the others have said, reading test results can be a bit daunting at times. I usually spend hours online searching, reading and weighing information against what I have already learned. Obviously you have done this, but don't panic. I would give the doctor a call, though, and ask him/her to explain the results to you to put your mind at ease.


  17. Welcome to the Sclero Forums, Lynda. I am glad to see you have found us and started to post right away. I have a diabetic friend who has been suffering with frozen shoulder for some months. His doctor said quite a few people with diabetes suffer with it, more than the general population. I noticed in your other post that you are suffering from lung involvement with scleroderma. I am sorry to hear about this, but I know you will find much information and support in this group.

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