TJ903

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About TJ903

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    Silver Member

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  • Location
    Merritt Island, Florida
  1. Sorry to hear about your situation, but you have come to the right place. Not only will you find a wealth of valuable information, but you will get a wealth of love and support. We know or have been where you are now and those of us who were we you are now will tell you, not to overload on researching. You will tend to fixate on the bad and the stress will not be good for you. Find a Rhuematologist that you are comfortable with and one that will listen to you and address your concerns. You will need to be an informed patient as well. Gather your support team around you and take charge. I have been there and obsessed over the outcome rather than finding a good doctor who understood this disease and the different ways it presents itself. I am now in my third year and still taking charge. Everyone on this site you can count as a friend and don't be embarassed to unload. Many times I've needed extra support and virtual hugs and always found them here. I'm sending warm, gentle hugs your way and would consider it an honor to be one of the first members of your sclero.org buddies. TJ903
  2. Congratulations!!!! There is hope for us and you are our shining example. Many thanks for your help and inspiration for me personally. My strongest hopes and dreams for you and your family- TJ
  3. I've just been diagnosed with polymyositis (PM) and have systemic sclero. It is great to see all of this information, esp. the problems with speaking. I go the the physical therapist (PT) this week for evaluation and hope she is knowledgeable. Sorry to hear that you are suffering with both, it makes it doubly hard to get a work out that isn't too hard on the heart (I have problems there as well.) Will follow this post; great inforomation to take to my doctor.
  4. I'm in as well, might be just the thing I need to boost my emotional meltdown--
  5. Many thanks to everyone---and just as I thought it is not a dream. To make matters worse my night was spent trying to calm the cramps in both of my legs- sometimes I wish that it would all come at once so that we would know-okay this is it- this is what I have to work on. Start that -to-do-list. Check 'em off one at a time, what a party we could have, A mini celebration for every bit of food consumed without pain, or gagging, every joint that freely bagan to operate, every dentist office where they say 'looks so good we don't even need to clean!' every bodily function that actually started to function, people who would actually understand what we are going through and--this is a biggie- Dr's (without egos) who research Scleroderma because they actually want to help us! That is the real dream I guess. Thanks guys!
  6. So sorry to hear all of this. I too have alternating cold and stream sweating. I have to change my clothes, sheets and my hubby's. Just joking here, but he's made comments about the amount of sweat. On the other side, when you get a chill and you have extensive skin issues, does it feel like needles are being stuck in you but from the inside out? I having blood work to confirm a diagnosis of polymyositis. Oh, just what I needed. That will probably explain that issue. My skin is so hard and looks like and feels like orange skins. I'm losing hope. The more rigid my body becomes, the more imprisoned I feel. The view outside of my window is my world now. I keep hoping that the next time I awake, it'll all be just a dream. I'm on disability and we got word today that my husband is losing his job. Sometimes it just doesn't pay to be positive and hopeful when nothing is in your control. Sorry, got off-track. Thanks for the virtual shoulders! Soft, warm, chilly, absorbent hugs coming your way, TJ
  7. Sorry to hear about so many of us with migraines. Is it brain fog, pill effect or sclero? We may never know. I am so surprised to hear others have the 'shock' syndrome. I've had it for about five years, if this is sclero related it may be one of those mis-interpreted symptoms. I was diagnosed 01-04-07, maybe it should be 01-04-02?mmmmmmmm. Gives us pause to think. We don't need any more issues than we already have. I hope that everyone can find relief for those migraines - mine are doosies, but can't seem to pin-point the cause. I'm lucky in the fact that they don't last longer than 24-48 hours. After reading the posts, there are now things for me look out for. Love this site and the folks in it!!!
  8. Back from Johns Hopkins, with more information, some good some not so good. I am not eligible for SCT because I've had cancer twice in the last eight years and they are adamant about me not receiving the stem cells because the chances are very good that my cancer will come back with a vengence. But, there are other treatments like IViG that I can get. I was a bit upset, but then again there is another option. So all is not lost. Thanks for the info. on IVig. I feel much better about receiving it. Will have to fight for it I am sure, and now after fightin my insurance company for 18months to participate in the SCOT trial, I shall have to cancel the hearing at the state level, makes no sense to fight and lose for something that I cannot receive anyway. What are the possible side-effects of IVig? Also, any new information on Gleevec or Revimmune? Now that I'm back home in Florida, I do not envy those who suffer with this disease who also live up north. Must admit tho' I found the bracing cold air - refreshing!!! Made me miss my home in PA. Lots of warm hugs coming to everyone!!!
  9. My skin is so tight that they cannot get a needle in- thank goodness for the port. However this is my second port, the first one became useless after the sclero warped it's position and it got infected. Seems my new one is headed for the same outcome. On my last flush, the could just barely get a blood return and after the labs were done, my skin had closed around the needle making it hard to withdraw. The nurse was beside herself. Any new ideas or options out there that I can draw upon? Sorry for the numerous postings- I have an appointment at Johns Hopkins on Tuesday and want to get all of my questions in order. Many thanks and tons of warm hugs to everyone!! TJ903
  10. IVig keeps popping up- I can't really understand what it is or how it works. Has anyone had treatments? Does it help, and what is it exactly? Many thanks again for letting me pick your brain-pans! -TJ
  11. Thank you everyone! To those who think they have nothing to contribute- please write. As I mentioned to one of the other forum participants who has offered to help, I feel like a female version of Don Quixoti! There is just me fighting this and trying to string even a sentence together is hard on my brain. I've cut down on my pain meds a bit until I can get through this. A clear head is needed. Unfortunately for me Health First Health Care is a self-funded insurance and as such is protected by a state agency called the Agency for Health Care Administration which protects these self-funded companies from having to pay large claims. And- I cannot afford to hire an attorney. My chances of winning are slim, but I've been riding this horse for almost two years and I've been known to continue beating a dead horse if need be. Thanks again for all of the support and helpful information! TJ903
  12. Thanks for the quick replies, my hearing is next month on the 11th so I have more time to prepare. Many thanks again and any advice is welcomed. tj903
  13. Can any of you let me know what insurance companies have covered stem cell transplantation? I'm on my final appeal at the state level here in Florida and need to present them with names of other well-known health providers. So far - I have United HealthCare, Blue Cross Blue Shield, and Humana. I was diagnosed 01/04/07 with Systemic Sclerosis, Diffuse Scleroderma - what is the generally accepted name? Included with the sclero, there is the hearburn (GERD), interstitial lung disease (ILD), congestive heart failure (CHF), severe skin involvement and a host of other ailments yet to be named. I need your input and advice, it will be a teleconference so using my physical appearance to help me argue my point is out. If you can offer me any advice no matter how small or insignificant you may think it is, I may not have thought of it. My pain meds I try to keep at a minimum, but my brain is still handicapped by fog and pain. Thinking straight is a real challenge. Thank you all so very much!!!
  14. Thanks for the quick response, the fact that you are familiar with the pain from TMJ makes me feel better, sorry that you have itm, but you can understand what I am going through. I had a couple of splints made, had a GELB appliance, and blateral arthroscopic procedures done. My mouth is so small that the child size mold will not fit in my mouth and I have boney growth on the roof of my mouth and behind my teeth on the bottom so making splints are difficult. My dentist has informed me that the orthodontist has truly wrecked my bite and he doesn't know what to do. But by all means, please PM me and give me the name of the doctor in Orlando!! It's just a short drive for my husband and if he can help -the travel time doesn't matter. My problem with my jaw other than having it repaired incorrectly after I broke it in a car accident is that the miniscus sits anterior to the condile on both sides, thus I have no cushioning or very little. I'm already on a couple of pain killers and don't know how Neurotin would help, but I will sure as my pain management doctor. Maybe, they can do a mouth piece for me, It's just really painful for them to do it. Thanks again for the help and the doctor's name. ---TJ
  15. Does anyone know of a good dentist in Florida? My oral surgeon dropped my when he found that I had sclero. There are days when the TMJ pain far outweighs the sclero pain, if you can imagine it. My mouth obviously will not permit a lot of activity to go on, and I'll probably have to hit the gas for my annual cleaning. Any information will help. I did find toothpaste and mouth rinse that do wonders for the dryness. Of course, nothing lasts forever, but every little bit helps. Thank you for you insights, as always- they are precious little diamonds of hope!!!! Tj903