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Everything posted by jefa

  1. jefa

    Applying for SSDI this weekend

    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. jefa

    Disability Insurance

    I got my fully favorable decision in May 2011 (after ALJ) and my first payment in October, the balance (past years) by November. I think the delay on mine was because of the issues of living outside of the USA.
  3. jefa

    Jo Frowde: ISN News Manager

    Congrats, lady - I'm sure you will be great as you are with everything else you are doing. :emoticons-clap:
  4. jefa

    Surgery #1 out of the way (Cervical Stenosis)

    Hey, I am glad to hear it all went well. Sometimes you wish you could just plug in a whole new body, but it is amazing what they can do to upgrade the old one these days. Big hugs to you (the virtual ones are never painful, of course).
  5. 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.
  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. jefa

    Congratulations to Jo Frowde

    Congratulations, Joelf -- you will be amazing, I am sure. Not everyone can survive that dark and scary place, but without those like you and the others who have accepted the challenge we wouldn't have this safe and wonderful place to learn, play and hug.
  8. Great news - you have been doing an absolutely smashing job. So glad to be able to relax and enjoy things. As you well know, it is a challenging position but worth every bit of the energy it takes in satisfaction. Of course it helps that you have a great team and excellent leadership on the best support site of its kind in the world. Huge hugs and a million thanks for being you.
  9. jefa

    Maybe a dumb question on Raynaud's

    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.
  10. jefa

    Hugs that can hurt?

    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.
  11. jefa

    Bowel problems

    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.
  12. jefa

    Knitting circle

    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.
  13. jefa

    Query blood test results

    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.
  14. jefa

    No Chat Tonight

    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.
  15. I miss you Peanut/Lisa in chat, too. I hope that all works well with the transplant. I will keep you in my thoughts as always and hope for all the best so that things to work out for you.
  16. jefa

    Sacral Nerve Simulation Surgery

    Buttons, glad the insertion of the stimulator is now behind you (pun intended). Hope your colonoscopy goes well also, Sweet. :)
  17. jefa

    Pet Peeves, Whats Yours?

    I can't believe anyone would be so rude as to push you out of the way -- even when my cart is blocking someone, they usually ask ME if I will move it. Wow, that really takes the cake. :angry:
  18. jefa

    Holiday Gifts for Sclerodermians

    I like that mouse muff/envelope/cozy idea, too. Think I will try to put one together and see how it works out. I have seen them online before, so maybe I will just give myself one for a treat.
  19. jefa

    Turning up like a Bad Penny

    Wow, it is so good to hear from you again! As you can see you have been well missed. I laughed when I read Shelley's reply. In Scotland to 'spend a penny' is a euphemism for urinating. :D
  20. jefa

    Low grade fever. what to do?

    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.
  21. jefa

    Telengectasia picture now viewable!

    Hi all. Just a quick note on the levels. They are related to the number of posts. Keep posting away and you will find yourself rising through the ranks. We haven't invented a diamond studded platinum level yet, so maybe you will be the one to make it happen!
  22. jefa

    New Forum

    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.
  23. Hi, Jeannie Thanks so much for this. I look forward to your future instalments. I know it must be frustrating, especially to new members, to get used to how things work around here. Hopefully this will give us all a little insight into the process. It's easy to miss things in the first read of the guidelines in our excitement to get into the forums and post. I refer to them several times a week.
  24. jefa

    Royal Free Hospital

    Hello, Bobby Just a quick note of welcome and a hug. I'll come back and read more later, but I wanted to let you know I have changed your display name (and login id, so it will be changed if you drop into chat as well). I am also from Scotland.
  25. jefa

    Also from Scotland

    Hi, everyone. I come from Clydebank, which is not that far from Glasgow, Scotland. I am going to be 62 in a couple of weeks and I have not been working since 2005. I found this site (well, it was on the MSN site back then) shortly afterwards. I have found more information about the various things going on in this one place than anywhere else, but the best thing is the wonderful warmth and support I get from all the lovely people. We share happy dances on good days and give each other a boost on the bad ones. But for me, the best part is being able to compare notes so I can go into my short little doctor's appointments with informed questions. I am really happy that Amanda is here to lead this sub forum as there are so many things that are different about the UK health system. Even the medicines have different names. I have been living in Scotland since I married my Glaswegian husband in 1997. Before that I lived in California where my grown children and grandchildren still live. I miss them, but I love the people I have met in the UK. I look forward to getting to know you all better.