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Posts posted by barefut

  1. Hi Pur,


    I take generic Mirapex for my RLS. No side effects whatsoever and it does a great job but takes about an hour to go to work. :emoticon-insomnia:


    My RLS started with the indescribable creeping crawly feeling that I needed to tighten my muscles to make it feel better and now has turned into uncontrollable jerks and involuntary movements.


    Before I went to meds I tried the soap thing - does not work - too bad :(


    Good luck to your cousin! Hope she finds relief soon but I wouldn't be afraid of the meds.

  2. Thanks Shelley,


    We are in the beginning stages of the project right now. I have an informational meeting tonight at the school regarding the Culture Fair.

    One of the things I will ask is, would it be okay (not tacky?) to have an ISN donation box on the table with his display? If so, can you tell me how to get one? We also want to have some bracelets available. Hey! I need to get us ISN T-shirst too! I'd better make a shopping list...

  3. Hi Annie,


    Thanks for sharing!


    "It's funny because all of my symptoms are just my new "normal" so I forget that other people aren't like me and are bothered with the symptoms I have every day."


    How very true! Isn't it amazing how we adapt?!

  4. Hi Annie,


    30 in the world?! Wow and I tought I was special :) Glad you have come to join us. What can you tell us about Grzybowski syndrome? What were your first symptoms and when were you diagnosed? I'll bet you had your doctors in a quandry for awhile with such a rare one.


    Welcome! And I look forward to getting to know you better.

  5. Oh Dear Jeni,


    Yes. I have experienced the same. My diagnosis is diffuse sysemic scleroderma (systemic sclerosis. My gastrointestinal doctor says that one or more of my medications may be causing my abdominal cramping and urgency but the incontinence issue was never directly addressed. I can't assume that the incontinence is also med related so I blame it on the disease because don't they seem to be two seperate things? Before my illness I never had incontinence with diarrhea, nor did I have the urgency.


    You hang in there! And best wishes for a speedy diagnosis - hope your doctors can nail it down soon - and get your treatments tailored to what will be best for you.


    ((((Big Hugs))))


  6. Hey Everyone!


    Boy it's been awhile since I've been on here. I think I'll have to blame it on facebook and Scrabble! :blush:


    I have missed everyone and now can't wait to get caught up with old friends and meet all of our new members too. If I have not met you yet, here is a brief-ish rundown on me:


    I was diagnosed with diffuse systemic scleroderma in January 2006 after going for 6+ years with a "probable Lupus" diagnosis. I am a single mom to 2 great boys, ages 12 and 8. If it weren't for them I probably would not even get out of bed most days. My main symptoms are muscle/joint pain/stiffness, fatigue, and gastrointestinal issues. I also have Raynaud's, skin and lung involvement. I believe the best medicine is humor and ISN. They both have SAVED me!


    I joined ISN in October 2006. Some time later, I spent about 8 months as a Support Specialist until my personal life became full of divorce papers, IRS woes, and the like, I decided to "retire" since I was not able to give it my 100%. I was also invited to be a blogger early on and have enjoyed torturing you all with my "barefut impressions" on life with scleroderma. I have not blogged in awhile either - shame on me! So I'd better get to it!


    Looking forward to catching up with you all and hearing from new members too!


    Stay Healthy, Happy, Safe and Warm!

  7. I just contacted the leading attorney in my area who specializes in SSI and was told I need to apply and be denied before they will do anyting for me. Are there attorneys who help you apply?


    I am at a crossroads as to whether I should pursue an appeal with long term disability or just go ahead and apply for SSI. I could use some advice on that too. Even starting the application process for SSI seems like a daunting and overwhelming task for me. Surely there is someone who can help?

  8. Hi Miocean,


    I am glad to hear your body is accepting its new resident! About your diarrhea, I am taking Cellcept (which was actually mainly used as an anti-rejection drug before it was discovered that it also helps with sclero lung and skin symptoms). I have had the problems with chronic diarrhea ever since starting it, BUT proton pump inhibitors are also a culprit of diarrhea as is sclero's gastrointestinal involvement itself, so it is hard to tell where it comes from! I am glad Imodium has helped you. I also started some heavy duty probiotics and it has helped with the lower abdominal cramping.


    I wish you all the best and do take it easy although I know that is hard to do sometimes!

  9. I injured my shoulder last week moving furniture for the carpet cleaners. Just pulled on my storage trunk which I have moved 100's of times. Well, I don't remember it being that heavy, or I don't remember being that weak. Anyway, it hurt bad the next day and worse the next - probably because I kept using it...So off to my doctor's office to see a nurse practioner. She was convinced by my level of pain and immobility that I had torn something and ordered X-rays and refered me to an orthopedic surgeon. She was positive I would have to have an MRI. Unrelated to the injury, X-rays showed "calcific tendonitis" good to know...I guess?


    Today was my appointment with the ortho doctor. He immediately diagnosed "frozen shoulder" (happens from not moving it when you're in pain)and did a sonogram. Thankfully, the sonogram showed no signs of a tear! So no MRI needed either. I was so happy to hear that I would not have to spend this beautiful spring and probably part of my summer recovering from a shoulder surgery!!


    Instead I got a shot of cortisone and 4 weeks of physical therapy. I also got 'diagnosed' with a "low tolerance for pain" when I said, "owe, owe, owe that hurts so bad" in reaction to the cortisone shot. "You have a low tolerance for pain. That should not have hurt at all. I was in exactly the right spot and it went in perfectly". Okay, next time I won't say "owe". I wanted to see what HIS tolerance for pain was but with my shoulder injury, my right hook isn't up to par.


    Pain is pain dude! Don't take it personally. I'm sure you did do a perfect job with your injection. My reaction to what my body perceived as pain is not a direct reflection of your abilities to administer a shot. And just because other patients may not have reacted the same way, does not mean that it was not painful to them, nor does it mean that I have a low tolerance for pain. If anything, after giving birth to 2 kids, au natural, passing kidney stones, gallstones, having migraines and putting up with all that scleroderma has done to my body, if anything I surely have a HIGH tolerance to pain. I certainly have a low tolerance to arrogant doctors. Oooo I should have said that! (no not really)


    Anyway enough venting. This subject of "pain tolerance" is intersting to me. I think I'll do some research.

  10. Hi Kira, Welcome!


    So weird (timely!) you brought back this post at this time. I may be able to use it to help me with my disability appeal.


    Anyway, glad to meet you! I can't believe it's been nearly a year since that post! I am still having the same symptoms and more nerve pain in my feet. For the past couple of weeks I have felt heat on the top of my feet, like someone is holding a blow dryer really close to my foot. It happens once or twice a day for about 5 - 10 seconds - another strange one to add to my list. :wacko:


    How long ago were you diagnosed with multiple sclerosis (MS)? I hope it has not been progressing for you. What things do you have to deal with? I know I'm probably grabbing at straws but the 'investigator' in me needs to keep looking for answers to the symptoms I have that aren't fitting into the sclero profile. Not sure an MS diagnoses would make any difference in the treatment I am already receiving for sclero anyway? What is used to treat MS?


    I will PM you soon!

  11. Hi Susie,


    I have had my fair share of bouts with vertigo. My doctors have never related it to sclero but ya never know. I have had it so bad upon waking that I slammed into the hall wall and slid down to the floor and could only just stay there. My oldest, then 4, brought me a bowl and the phone and I called my mother in law to get me. By the time I got to the doctor's office it had subsided but WOW! It was like being on a carnival ride.


    I still get it from time to time and strangely usually upon waking. I take motion sickness medication for it. It may help or it may coincidentlaay subside on it's own which is usually an hour or two but sometimes lasts 1/2 a day.


    I have never thought of antihistmaines, might be a good thing for me to try next time. I can't imagine going for days on end with vertigo. Hang in there and I hope you are feeling stable again SOON!

  12. I just spoke to them a minute ago. It is in review with their Dr.'s. When it is denied I can appeal. In my interview I should have spoken more to my fatigue and muscle pain and weakness rather than my bowel issues.


    She said she spoke "at length with my employer" and HR told her I had "childcare issues". Although that's true. What does that have to do with scleroderma and my disability? She's making it look like I quit because I couldn't find a babysitter. What a maddening process!


    Thank you for asking,

  13. I should have studied harder I guess. There is even a helpful 'study guide' offered here on ISN in the form of a forum discussion. I was also caught off guard. It was like a pop quiz and my mind went blank. I stammered and babbled and said all the wrong things. Who knows though, maybe that will actually help me? If I am lucky, my interviewer will think, "This woman is an idiot. There's no way she could hold down a job."


    I'm just sick about it. I can't even go into the details about it right now. I have not been officially denied yet but I will be. At first I thought I'd get a jump on things and start working on an appeal but I don't know. Maybe it's just not meant to be and I ought to instead work on accepting that. If I was receiving any child support or even had any hope that I ever would, it would be easier to accept. In fact, if I was receiving any child support I probably would have saved myself the headaches and not even filed a long term disability claim. I have learned to live quite frugally over the years.


    One of my greatest fears though is losing my Medicaid coverage. If I am forced to go back to work outside my home, even part time, I could no longer be eligible for this assistance due to an increase in income. And because of preexisting condition exclusions, I will never again be eligible for any kind of health insurance plan through an employer or even as an individual if by some miracle I won the lottery. And since I can only even hope to be physically able to work outside my home, part time, at a sedentary job, I would not be eligible for any health insurance plan anyway since you have to work at least 32 hours a week to qualify.


    My last card is Social Security Disability Income. I suppose I can look at this long term disability denial as the midterm and SSDI as the final exam and study harder next time. I'd better not wait too long or it might not even BE there TO apply FOR!

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