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Everything posted by barefut

  1. barefut


    It’s one thing to not be able to sleep. It's another thing to also not be able to do anything else while you lay awake hour after painful hour counting body parts that ache and burn and cramp and sting. There can’t be any greater aggravation than being so sleepy and bone tired, exhausted and spent that you aren’t even able to get up and do anything pleasing or productive with all those sleepless hours. And knowing that the reason for your bone tired exhaustion and fatigue comes not from the hard work of being a productive member of society, but rather from an autoimmune disease where your own body has betrayed itself by attacking all that is good and useful and necessary for life. While my heart screams, “I’m not done!” my body screams, “Yes you are!” And so the battle goes. Day after day after day. And so I look for meaning in all of this. What am I supposed to do? I am supposed to do something. Because there is a good reason and a higher purpose for everyone and everything on earth, good and bad. There is a silver lining, a lesson to be learned. Even in the wake of the most terrible disasters there is good to be found, if you look for it. And so I look for it. Everyday. I look for it. And I count my blessings and I add to my list of things to be grateful for. Everyday. And somewhere in there lies hope, sometimes big, sometimes small but it is always there. Hope for a better day, hope for my children who are also affected by their mother’s disease, hope for those who are affected with this disease way worse than I am. Hope for a cure.
  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 Buttons! It's good to get caught up on you but wow! I am sorry you are having to go through all of this. Best wishes for the best possible outcome and I will be keeping you in my thoughts! ♥
  4. All these hugs are making me cry! I especially loved North Star's poem. What a wonderful place to come when when one is feeling down! Thank you Shelley! (((((((((((((BIG HUGS TO YOU!))))))))))))
  5. Hi North Star Hope! Love that screen name. Looking forward to getting to know you! Glad you are here ♥
  6. I am so proud and touched by my oldest son. It was all his idea to do his 7th grade culture fair project on scleroderma. Then we saw the link for students here and found all we need for his research. Thank you for putting that together Shelley! It's awesome. Now....to get all that information onto a 2' x 3' cardboard stand-up!
  7. 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?!
  8. (((((((((((((((((((((((HUGS!!!))))))))))))))))))))))))))))) :emoticon-hug: To ALL!!! Stay Healthy Happy Safe and Warm!!!
  9. Hi Jeni, I have had a couple of regular body massages but no stone therapy. Sounds wonderful though! I'm with Sheryl, I can't afford massage. I think more insurance plans needs to cover it because it is SO helpful! Anyway, welcome to the forums and let us know if you get one how it goes!
  10. 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.
  11. 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)))) Barefut
  12. 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!
  13. barefut

    Six Jobs!

    Welcome back Six Jobs!!! Boy I have missed your blogs.
  14. barefut

    Update on Me

    After 4 1/2 years on it, I took my last dose of Cellcept this morning. I started Azathioprine (Imuran) a few months ago and doctor said it's time now to quit the Cellcept since my lungs have remained stable and my skin "looks good". Its nice to be eliminating a med for a change. The Azathioprine is supposed to be able to do a better job at handling my myositis - or at least that's what the plan is. Hard to tell any difference yet since I am still (again) tapering off of Prednisone and am currently at 3mgs. I started tapering from 5mg and am going down by 1mg a month. I think I may need to taper even slower as I wake up every morning feeling like I've been run over by a bus. Today my hands are painful, stiff and swollen. My fingers swell up to the point where the skin around my nail folds cracks and bleeds. Amazing how such a tiny thing could hurt so much. The rest of me is in hobble mode and battling some killer fatigue. In mid August I am having an upper gastrointestinal endoscopy with a possible esophageal stretch done at the same time. Some of my meds have been getting stuck and dissolving in my throat. I discovered that I am not eligible for SSI due to lack of "work credits". I must have worked at least 5 out of the last 10 years and I have been stay at home mom most of that time, only working or I should say, only having an employer, for the past 2 1/2 years. I have 4 months left to appeal my long term disability denial from the private insurance company my employer provided. I have an attorney willing to take my case on contingency but they will take 40% of any monthly payments (a minimum of $10,000). My approximate monthly income would be 60% of my gross wages and then 60% of that, leaving me with about $800/mo. I guess its better than a poke in the eye, especially since I am still receiving no child support and most likely never will.
  15. barefut

    Suck It Up!

    Wah Wah Wah. Even I get tired of hearing myself complain. Not that that's all I do or anything, just that if there's one thing I am more weary of than my daily ailments, it's hearing myself whine about it. Nobody wants to hear it, and it really does not make me feel better so what's the purpose and the point? I suppose it's just a bad habit now. Not to mention a knee jerk reaction to any kind of pain: "OWWW my aching legs! OHHH my feet are killing me! OWWW my right shoulder!.....I sound like I'm 95 years old. In fact, my 95 year old grandmother complains less and she's now in a nursing home and entitled to complain! SUCK IT UP! My other voice says. You have been through the wringer and are tough as nails, otherwise you wouldn't even be here. I hear my boys' coaches telling their players to "suck it up" and "walk it off". I think I need a coach. Someone to help me get out of bed in the morning. Actually it may take more than a coach. It may take a drill sergeant.
  16. 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?
  17. barefut


    Hi Dianehd, I saw my doctor 2 weeks ago and she told me my feet problems are tendonitis. I am so sorry you are having to deal with all of that! I'll bet those cortisone injections for your hip help a lot as the one I had in my shoulder was wonderful. You take care! Thanks for your comments to my blog. Stay Healthy, Happy, Safe and Warm!
  18. Best wishes to you Amanda. Keeping you in my thoughts!
  19. 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!
  20. 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.
  21. barefut


    I didn't think it was possible at this point but I think my mouth is actually getting even smaller. And my face is itching like mad! The cobwebby feelings are back and driving me nuts! Chewing is fatiguing on my jaw. Eating a granola bar is a total workout! Forget about gum. My jaw and neck and shoulders are so tight I have had a tension headache for a week. Sleep? What is sleep? A spot on my left thumb itched so badly yesterday that I made and popped a blister by rubbing it and I didn't even realize it. My feet cramp up all the time and after an hour of grocery shopping, my heels feel so tender and bruised I can barely walk. My right rotator cuff is messed up pretty good and I can't raise my right arm so I can't put on a bra or brush my hair, and brushing my teeth left handed has left a lot to be desired in the oral hygiene department. So here I am, a small mouthed, itchy faced, sore thumbed, crabby, sleep deprived, hobbling, braless, bedhead with bad breath. I just want to hibernate. :emoticon-bang-head:
  22. 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!
  23. 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!
  24. Hi Cathy, Welcome! Sorry to hear you are suffering from SFFS. I am glad to see it has not affected your sense of humor as laughter is the best medicine. Thanks for my daily dose of humor! Be well,
  25. 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,
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