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Patty1

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About Patty1

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    Senior Bronze Member

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    Massachusetts
  1. Hi Amanda and Lil Dee, Amanda had a very good suggestion, which I second...I have been in counseling for all of the last several years, dealing with this disease, and other factors, such as having to give up working and a good chunk of what I used to be able to do for relaxation and fun is a mourning process, and dealing with it is crucial. Not to mention your self esteem which takes a beating; it is a constant struggle to keep it "in the day" especially this time of the year when forced to stay indoors allmost all the time. It helps a lot to be able to talk to someone who can give you coping
  2. Hi Lil Dee, I too like many others have been plagued by Raynauds for years, even before I was diagnosed with Limited Scleroderma. I suffered attacks, but back then, it was in my knees and feet of all places, but I just chalked it up to bad circulation due to smoking. Never gave it any thought. But then when my hands started to go numb and change colors, and I started to develop spots on my left index finger, and my right middle finger that looked like old blood blisters did I get concerned and went in for a visit to my primary care doctor. He knew what it was right away, and sent me to a Rheu
  3. Thanks Jeanne,I am so looking forward to at least a reduction of the pain..Doc tells me not to expect to be pain free, the best outcome would be if they could cut the pain in half. I will be happy to at least be able to bend when I make the bed, and not grind my teeth to stop from groaning too loud! If the Baer Hugger is good as it sounds, I want one. When they did my neck surgery a few years ago, I vaguely remember them wrapping me up in warm blankets. The operating room was so cold, I started turning blue before they knocked me out. I don't remember getting a Baer Hugger then, but who knows!
  4. Hi Folks, I haven't posted in a while. Been going thru a little bit of a rough spell with health and disability issues. Still waiting for my hearing date with the Admin. Judge. I was also recently diagnosed with Lumbar Spondylolethesis at L5/S1-grade 1-2 (slippage of the vertabrae). MRI showed quite the deformity. After 2 injections, and 2 months of physical therapy, and still no pain relief, I am scheduled for surgery (2) at the end of this month and the beginning of next month. I am scared wittless, needless to say. The surgeon tells me the procedure he is doing, anterior/posterior lumbar i
  5. Hi Eos, Sorry for the late reply, I missed it, due to being out of town for a few days. I have the Prostglandin IV every year for my Raynaud's. My doctor thinks it could end up being more frequent (like Lizzie) than just once a year so far. All I have to do is say "Uncle" and she sets the wheels in motion. The side effects can be quite nasty as Lizzie mentioned,. I have the higher rate drip, they start it slow for twelve hours to start, and then the bump up the rate..which is supposed to get me out of the hospital after 72 hours, but last year, I had a complication of extremely low blood p
  6. Hi Craig, We are in the same boat, so to speak. I applied in February. After reading almost all of the threads here on Disability, I didn't mess around. I went straight to an Attorney that specializes in Disability. To me it is worth it. Especially after reading all of the horror stories, and then the paperwork they ask you to fill out. I am on my "Reconsideration" after being turned down the first time. My attorney told me to expect this, and then to expect to be turned down on the Reconsideration. He said, at least in this state (Massachusetts) they almost always turn you down, all the w
  7. I can vouch for Dr. Alkasab at UMass Memorial in Worcerter. I have seen him, as well as several other dr.s in the Rhematology Center. They know me well! Just coming back to the forums under a new name. I was layed off in February, and had to give up my work computer. Patty
  8. Hi Karen, Not so much on the fatigue and stiffness but my Rhem. thinks that the combination of the Plaquenil and Methotrexate are slowing down the disease progress. I have to have faith in what they tell me, as the few times I have had to come off of the two, I have felt alot worse :( I also know that at the time of my diagnosis of Limited SSc. my fingers had swollen enough to have my wedding rings sized up two sizes, the swelling had started the previous year, and I just put it down to water retention! HaHa!! But I haven't had to have them resized again yet. The down side to Plaquenil, is I
  9. Hi Tangie, I heard some people say that Plaquenil helps with the fatigue and overall sense of feeling ill. However, I take it, and I don't achive that benifit from it. Wish I did! Hope you feel better. Patty
  10. Hi Catherine, Welcome, you have found a good place to ask questions.l have found everyone here most helpful, and though I don't chime in alot, I check in a few times a week. It has saved my sanity more than once to know I am not alone, or imagining things. I have what I think is the same kind of rash as you describe. I asked my Rhem. about it last month when I saw her, and she says it is Sclero related. I have had it for the last year. It showed up last winter, subsided a little last summer, but is back in full glory! It reminds me of when I was about 16 and had many pimple breakouts. It is
  11. Patty1

    Kids

    Barefut I feel your pain too! Mine are about the same age as yours, relicmom, 24 and 17, and both still at home.It is pretty much the same deal. I gave up trying to clean their rooms even before I got sick. I used to take a trash bag or bags up to my son's room and bag everything that was on the floor. It didn't bother him a bit! I have tried every threat and punishment allowable by law ;) The only thing that worked was revoking privileges. If they wanted to go to a friends house for a sleep over, or a special trip, the deal was they didn't go anywhere until the room was clean. That only wor
  12. Hi Sam, I had an epidural steroid injection in June for neck/arm pain. I have stenosis in my neck from degenerating discs and bone spurs. I see the surgeon again tomorrow to discuss surgery. My reaction to the shot was awful. Four days after the injection I started having what turned out to be muscle spasms in my upper back/shoulder area near the injection site. The ER doctor said it was most likely caused by the injection. I have not experienced that much pain in a long time. It was bad enough to send me to the ER at 9:00 in the evening. I didn't find out about that possible side effect unt
  13. Hi Celia, Interesting. I have heard this before, and I have to wonder. For five years I worked at an Abrasives manufacturing plant here in the US. They made grinding wheels. My husband also works for a big company that manufactures/tests materials for similar applications. He calls it dirt, but most of them contain silica. It gets on his clothes no matter how careful he is. Part of my job for the manufacturing plant was going around the factory several times a week, collecting time cards and posting notices from the HR dept. I had to wear safety glasses, but now I wish I had worn a res
  14. Hi Betty, From experience with my Dad, Home Health Aids are NOT bums! They are a truly wonderful group of dedicated people. I allways marveled at how caring and special my Dad's health aids were. They allways went the extra mile. How do you do it? Especially when you loose one? Take Care, and don't sell yourself short, you are very much appreciated! Patty
  15. Hi Lizzie, Hope you are feeling ok after the "anitfreeze" treatment. It usually wipes me out for a few days. I wish it were more common practice here in the US, last winter I had to wait for two months for the bed in ICU, and in the meantime, my rhem. put me thru the ringer with tests, an Angiogram on my hand, EMG's for hand numbness,(which has turned out to be yet another problem all together) etc. Not to mention all of the meds they added. They used Alprostadil for my infusion. My rhem. did say some people need to have this infusion every three months. I hope I don't get to that for a while
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