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Everything posted by barefut

  1. barefut

    Ear problems

    Hi Lizzie, I get that too - never knew it had a name. I also have recurring bouts of vertigo that can last anywhere from an hour to days and vary in intensity throughout the episode. Once had it so bad upon waking I crashed into the hall wall, slid down to the floor and that's where I stayed until my mother in law came to the rescue. Really weird! And not fun when it triggers vomiting too. I will have to look up labrynthitis to learn more. I'm sorry you are suffering with it. Dizziness and nausea are awful! My doctor advised over the counter motion sickness medicine, Meclizine. It helps me some. Hope you find relief soon!
  2. barefut

    Holidays Overwhelming

    Ahhhh thanks so much everyone! My sister will be here in 2 1/2 hours and I am working on a combination of Shelley and Jeannie's methods this morning. Not gonna waste energy on a shower as I took one yesterday and my hair doesn't look too bad this morning. Gonna put the boys to work on the living room while I tackle the kitchen and bathroom but first I gotta have that cuppa! My weepies never did turn into a full blown cry yesterday. I hate it when I "feel like crying but the tears won't come" - that is in a song isn't it? Anyway, thank you all for your replies and support. I've enjoyed reading them this morning. You all have given me just what I needed to get through my day! Love love love to yous!
  3. barefut

    Update on bowel problems!

    Welcome Julien, Thanks for the reminder to be proactive and vocal regarding one of the most embarrassing and debilitating of symptoms. It is a hard one to talk about.
  4. barefut

    Update on bowel problems!

    Hi Summer, Boy some days I feel like that too. I have all the restrooms in my town mapped out. The worst thing was when I was still working at the bank, in the mezzanine of a funky grocery store in a busy uptown location, our only restroom was also the public restroom in the hall! At least there was a mens and a womens and I never thought twice about using the mens room! Still, sometimes I had to wait. When I was not waiting, someone was waiting on me. It wasn't fun to come out of the mens room to a line of impatient men! One day though, a man came out of the women's room and I smiled. He says, "Hey, any port in a storm" cute, as we are a seaport town. I would always return to a line at my teller station and/or dirty looks from my customers and co workers. One of the big reasons I am no longer working. My heart goes out to you and I sure hope you find a solution that fits you very soon!
  5. barefut

    Restless Leg Syndrome

    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.
  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. 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...
  8. barefut

    CT Myelogram test

    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! ♥
  9. 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!))))))))))))
  10. barefut

    Welcome New Members!

    Hi North Star Hope! Love that screen name. Looking forward to getting to know you! Glad you are here ♥
  11. barefut

    Welcome New Members!

    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?!
  12. (((((((((((((((((((((((HUGS!!!))))))))))))))))))))))))))))) :emoticon-hug: To ALL!!! Stay Healthy Happy Safe and Warm!!!
  13. 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!
  14. barefut

    Welcome New Members!

    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.
  15. barefut

    Fecal Incontinence/Bowel Control

    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
  16. barefut

    Welcome New Members!

    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!
  17. 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.
  18. barefut


    My seven year old caught me crying over my keyboard while reading the John’s Hopkins website on Myositis. "Mom, it says, ‘medical treatment’, what happened?” I hear his sweet, innocent little voice say. I wipe my tears and tell him, “Nothing happened, it‘s just that my hips and my shoulders and my elbows hurt and I’m just reading about how to make myself feel better“. That seemed to satisfy him. He gave me a hug and went back to his cartoon. About 50,000 Americans have myositis; apparently even rarer than scleroderma, this autoimmune inflammatory muscle disease is also incurable. I will soon start another immunosuppressant medication to try and bring the pain and inflammation under control. I am waiting on DNA test results which will tell me if I am susceptible to a rare and dangerous side effect before my rheumatologist will proceed with treatment. In the mean time I am back on prednisone and bummed because I just finally weaned off of it 3 months ago and it took a long time at a reduction of 1mg/month. Now I have to start all over. Prednisone, although a precious miracle of pain relief at the right dose, comes with a host of unpleasant side effects like weight gain, irritability as well as dangerous side effects like kidney failure. So not a good thing to be on long term especially at doses higher than 10 mg/day. What I learned about myositis on the John’s Hopkins’ website is that there are important lifestyle changes to make. For example, they recommend following a doctor-prescribed exercise program which might include physical therapy, whirlpool baths and gentle massage. Resting and pacing, and limiting activity is very important. Working with a nutritionist can be beneficial. And my personal favorite, reducing stress is vital, such as with yoga or biofeedback exercises I’ll order my Jacuzzi tomorrow, right after I quit my job, see my therapist, go to yoga class, see my nutritionist, have my massage, buy a lottery ticket and stop at the food bank.
  19. barefut

    Six Jobs!

    Welcome back Six Jobs!!! Boy I have missed your blogs.
  20. 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?
  21. 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.
  22. 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:
  23. 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!
  24. I love, love, love hearing everyone's ideas on life made easy. I propose we try to turn this thread into a manual of sorts and each of us contribute one Tip, Trick or Shortcut to making life with sclero, (and life in general!) easier. Some topic ideas: cooking, cleaning, travel, parenting, schooling, social life.... I will start #1. Buy a spiral ham and it will last you a week of meals in many different ways. Ham: and eggs sandwiches and pasta salad and cheese/macaroni and cheese & vegie casserole And the dog will love you for the bone! :wub:
  25. barefut

    Bad news...may get worse!

    Best wishes to you Amanda. Keeping you in my thoughts!