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jefa

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Posts posted by jefa


  1. Welcome to the Forums, Gordon. Glad you found us, but sorry to hear about your illness. I am also from the UK and understand the frustrations of waiting for a proper diagnosis and the length of time it takes to get test results back. Do let us know when you get your biopsy results. Hopefully you will be able to find the information you are looking for in this page on Autoantibodies in Scleroderma. The section called IgG Antibodies (about 3/4 of the way down the page) should be useful.


  2. Hi Sue,

     

    Sorry to hear about your recent diagnosis of morphea. I don't have anything more to share about this form of scleroderma than the folks who have already posted, but I do sympathise with you trying to decide how much to share with your parents. I think the first thing we all do when we get a diagnosis is to panic and think of worst case scenarios. This in itself causes stress which is no good at all for us. I have found that maintaining a positive attitude, assuring myself that I will beat any odds thrown my way, goes a long way towards making me feel and live better. My own parents are 80 and 83 and while I have talked to them several times about my illness, they keep forgetting everything, confusing what they do remember and telling other people that I have things I never heard of. Needless to say, I don't share technical articles with them! Kids on the other hand seem quite good at handling an honest approach to illness as long as it is presented in their terms.


  3. Welcome to the Forums, Kristi. I am sorry to hear of your recent diagnosis of scleroderma, but glad you landed in such a great place for information. The members of this forum are very good about sharing and giving advice and the site itself is full of excellent information. For starters you can read this link on CREST which should answer a lot of questions.

    Sorry about your sister's lupus, but at least you were able to find our about your own illness. You are lucky to have quickly found a rheumatologist who is on your side.


  4. Thanks so much to all of you for the warm welcome. Of course I have already felt quite warm and welcome here on the forum. I hope I can continue encouraging that environment. I have so many wonderful role models, it shouldn't be too hard to learn the ropes, even on the night shift!

     

    As for my name, you can call me Jefa or Carrie. I was christened Jefa by one of my production crew (the feminine version of jefe, or chief) and it stuck.


  5. My husband had quite a bad case a few years back and is still suffering from post herpetic neuralgia. It is rather risky around the eyes, so it is recommended that you see a doctor right away if you think you have shingles around your eyes. You can find several sites with good pictures if you use a search engine for shingles or herpes zoster.


  6. "Welcome! In the more social setting of the Fun and Friendship Forum (formerly known as the Sclero Den), please feel free to share personal news and get to know each other better. Please continue to adhere to all Forum Guidelines."

     

    We hope you enjoy this new forum in which you will be able to let down your hair a little bit and talk about the things in your life that don't necessarily have anything to do with ANAs and Skin scores, but still have an impact on your life.

     

    Please feel free to post freely on any of the forums. Hugs to all.


  7. Yes, welcome, Joel--and all of the other new people. There is much information and support to be gathered on this site with its very thoughtful and competent leaders and passionate participants. I have noticed quite a few new folks joining lately (or finally coming out of the shadows) and while I'm sorry that means there are more people suffering, its still good to hear from others who may be experiencing the same things. Please forgive me for failing to acknowledge each new person separately. My brain is unfortunately not what it used to be. I think of extending a welcome to when I finish reading, and then...well, you know how it goes. I look forward to seeing and hearing more from all of you.


  8. I don't know if it is the same brand, but I have also found some great gloves that are made of nitrile which is thinner but stronger than latex and are lined in cotton with extra long cuffs. Dishwashing becomes a heat treatment. :)


  9. Glad it wasn't too bad for you, Peanut. At my clinic the restriction was no food or drink from midnight the day BEFORE the procedure, so I felt hard done by. The only meds allowed were for heart, thyroid or diabetes and then with restriction. A great deal of advice was given on the options of local spray anaesthetic vs. sedation. The statistics were that 80% of the patients chose the local. I chose this option because of those who chose the sedation option were advised of 24 hour short term memory loss and much longer recovery time and after care restrictions. The statistics given didn't seem to match practice as most of the other patients in while I was there seemed to be opting for sedation. I waited for nearly an hour and half in the endoscopy suite so I heard all the other patient stories. They had to switch my slot with another patient who required a special procedure and only one of the doctors could do it. When I finally got seen, the local was applied only a minute or two before the procedure. I was hardly aware of any anaesthetic and the gag reflex was simply horrible. I seemed to be gagging , crying (tears, not sobs) and burping endlessly. Two nurses held my hand and talked sweetly, reassuring me and telling me how well I was doing, but I wasn't buying it. I was hoping I would be able to see what was going on but the screen was positioned behind my back. Even though I had seen pictures of the tube prior to the appointment, when he actually brought the thing up to my mouth, it seemed huge. If I have to go again, I will definitely opt for sedation. The result, btw, was that I have a hiatal hernia. I guess I will have to wait until my general practitioner appointment on the 18th to get the full details as I was not in much of a receiving mood on the day.

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