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jefa

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Posts posted by jefa


  1. Hi, Kamlesh - glad everything is working so well. It is great you have a local office to deal with.  I had to do everything remotely through the US Embassy in London.  I couldn't even do it online.  It is also good you have that much information and that you have already been approved privately (though they specifically say in their documentation that being approved by another agency is no guarantee you will be approved for SSDI.)  I wish you all the luck in the world on a speedy approval process.   :)


  2. Just want to offer my experience on the topic: All of my teeth were removed. The decision was made because of severe erosion of the enamel and the interior of the teeth were crumbly making restoration impossible. I originally thought the erosion was from acid reflux but my rheumatologist said that Sjogrens was more likely the culprit as the dryness creates perfect conditions for the destruction of the enamel. They placed full dentures at the time of extraction, but these were more or less temporary as the mouth can change drastically after everything settles down and the underlying structures heal and find their form. Once this happened, I was able to get properly fitting dentures which look really great. I can eat some things with the dentures in and it is a slow process - certainly good for my diet! For the most part, however, I take them out when I eat and pop them back in after I have rinsed my mouth. It is amazing what you can actually eat without teeth. The idea of everything blended into pap is certainly not a necessity. Of course there are some things that are difficult or impossible to manage. The things I miss most are crunchy raw fruits and vegetables. I can east salad made with the softer young leaves and the firmer lettuce shredded fine. I can't eat nuts, tough meat, hard biscuits (unless they can be dunked) and hard breads. I can eat some crisps (I find I only want one or two, mostly for the flavour. I can handle a bit of toffee with a cup of coffee. Biting is an issue, but I have learned to cut things into bite sized pieces. My husband and I (he had his out at the same time) make our sandwiches and cut them into sixteen pieces with a few good whacks of the knife and invert them onto the plate from the cutting board. It looks posh! I find myself tearing bits of cake or bread off with my thumb and forefinger or cutting up my food on the plate before I start eating. In other words, you adapt. Unfortunately, because of the dryness, leaving the dentures in for a long time can be uncomfortable. With or without the teeth, I suck on sugarless mints throughout the day which helps keep up the moisture. The artificial sweetener in them can cause diarrhea, but as some of the drugs I take cause constipation, it balances out quite nicely. If I had it to do again, I might have considered having a few strategic implants on the lower jaw as an anchor for the bottom plate, but I don't know whether the bone structure would have supported it.


  3. Yes, I have. Not sure if that is the exact mechanism, but it sounds like plausible reasoning. It's like the relative change is important. My worst attack ever was in mid-July a couple of years ago - it was quite hot, but windy and I went outside to pick up the wheeled trash bin the wind was tossing around. The wind across my skin triggered the attack.


  4. Ann, so sorry about your mother. You have received some very good suggestions here - Sheryl, yours are particularly good. Very sensitive. While the body language clues work really well in normal situations, in an atmosphere of mutual grieving and offering of condolences it becomes important not to risk making the proposed hugger feel like their affections are unwelcome.

     

    As for the sticks on the plane, they have been very helpful in letting everyone know I might need an extra bit of assistance. Good luck and soft virtual hugs - the kind that never hurt.

     

    Perhaps you can ask your doctor for a stronger painreliever for that day.


  5. Hi, Piperpetpete

     

    Good to see you in chat tonight. First let me say that I am not a doctor and can only offer what I have experience personally. Last year I had some problems with black stools which turned out to be from bleeding in my stomach from long term use of nsaids (Non-steroidal anti inflammatory drugs). My gastroenterologist explained to me about some of the changes in the colour of stools. He explained that bile is green and that green stools occur frequently when bile travels through the intestines too quickly before it has time to turn the stools the normal brown colour, but that it can be caused by other things. If it is in fact your sports drink causing the problem, try not drinking it at all, rather than diluting it.

     

    Here is a MedicineNet article on Stool Color & Texture Changes (Black, Red, Maroon, Green, Yellow, Gray, Tarry, Sticky) It doesn't seem to indicate any serious worries about green stools, but I would check with my family doctor if you are concerned. Always the best thing in any case. Let us know what you find out.

     

     


  6. So interesting to read all of your comments on knitting. I admire those of you who have the skill and patience. I have tried it off and on over the years, and my mind wanders too much, so counts are always off. ALWAYS. Fortunately, I am pretty good at faking it when I goof up, but I never got to the point where I could say I enjoy knitting. I have made a dozen or so scarf and hat sets, a small baby blanket, and about 50 pairs of slippers made with multiple threads. When I finished the last pair of size 13 slippers with three threads for my father-in-law I gave all my equipment away.

     

    Hubby just bought me a pair of lovely hand knit fair isle style socks and I have been wearing them every day for the past couple of weeks - that is until the right one developed a hole in the toe and a small one on the heel. It seems to be worn through the threads, not stitches undone. I am going to have to **** them and figure out a way to add a reinforced sole because I love them.

     

    I have also been imagining how nice a cowl thingie would be. Something like a big tube that covers head and shoulders but is soft and light enough to wear around the house. I would guess that would be easy for the circular needles. I did the baby blanket on circular needles - it took forever as it was a tiny gauge.


  7. Hi, Vanessa. Thanks for your very thorough post. The NHS (UK's National Health Service for you non-UK readers) does not seem inclined to venture a diagnosis in the absence of hard clinical evidence. Since it is early in the process and these symptoms could be caused by other things, I wouldn't let that bother me. The fact that your rheumatologist is referring you to the Royal suggests that he feels their experts will be more likely to be able to judge whether or not you may have scleroderma.

     

    I am not a doctor, but I am a patient in the NHS system who also does not have a direct scleroderma diagnosis. My symptoms at the beginning were similar to yours. The swelling in my fingers has subsided considerably, though I still have pain in the joints. After six years I have been able to get out of the several rheumatologists I see that I have 'some kind of connective tissue thing.'

     

    I do hope you get a more definitive answer at the Royal, the recognised centre of scleroderma expertise. What is most important, though, is that the various elements of your disorder are treated effectively. In my case, I feel that the use of Plaquenil has reduced the severity of my complaints and my Raynaud's is under control. Good luck.


  8. I look forward to Wednesday evenings when we can get together, but tonight the chat room does not appear to be working. Well, for me anyway. I could use one of these new emoticons and throw a hissy fit:

    :temper-tantrum:

    That felt better.

     

    Hopefully things will be working again soon. Hope all of you regulars can find something else productive to do for the next hour and that the rest of you will join us next week, or Sunday night.


  9. Hi, nata1979

     

    Welcome to the Forums. I am not a doctor but it if you are running a fever, you should see a doctor. Perhaps you can get seen in a clinic. Over the counter pain relievers may temporarily reduce the symptoms of fever, but you need to find out the root cause. There are aches and pains associated with many rheumatic diseases (such as scleroderma) and you should work with your rheumatologist and your primary care physician to determine what treatment is appropriate in your case, but there are many other causes of fever and pain. Good luck with this.


  10. Thanks, Snowbird.

     

    It does look lovely. Shelley has jumped through some hoops of fire in the past couple of weeks during the transition. Once things settle down and we all get used to the new features (and the new ways in which the old features now work) it should be even more wonderful than it always has been.

     

    Thanks to all of the support staff for learning everything along with us and continuing to provide the helping hand they are so good at giving.


  11. Hello, Georgioz and welcome to the ISN Sclero Forums. I am sorry to hear that your medical teams did not spot the renal systems sooner. I am glad that you found us and hope you will find it to be a refuge of information and support.

     

    It is important for all of us to be aware of the signposts for these issues and keep an eye on them with our medical teams. Regular blood pressure checks are important.

     

    Here is our page on Scleroderma Renal (Kidney) Involvement. There are a number of patient and caregiver stories at the end of the page.


  12. Hello, Theresa,

    Welcome to the Forums. I am sorry you are having problems with your head getting hot. I have combined all of your posts into one thread including the one from your post on an older thread posted by jaateach on the same subject, since he has answered your question with more recent information on this thread.

    Jaateach's old thread on Hot Head.

    I am not a doctor but this is an unusual symptom for which we won't be able to help you much with. Do you have a diagnosis of scleroderma? I would advise that you follow up with your doctors sharing joe's experience with them for reference.

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