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Posts posted by barefut

  1. I've been on 2g for a year. I'll be asking to go up to 3g at my appt on the 30th regardless of my PFT's because of the increase in my other symptoms.


    I'm worried that because my other symptoms have increased, my PFT's will have decreased.


    Good question because I have wanted to know how common a 3g dosage is too. I have also noticed that a lot of lupus patients have started on Cellcept.

  2. Many years ago for no aparent reason I lost complete mobility of my right toe for about a week. It was so strange. I could stare at it, telling it to MOVE and it just sat there. Oblivious. It wasn't numb. And of course by the time I got into a doctor, it was back to normal. Yes, I am a medical mystery at times it seems. Or else just crazy. I haven't figured out which yet.


    I have also had patchy areas of tingling and numbness in my arms, legs and feet. When I mentioned this to my doctors, along with all my other strange symptoms, they have never been too interested in it. I have never gotten any answers. It is not a real bothersome thing, just weird.


    I'm sorry yours is causing you a limp. I hope you get to the bottom of it and that it is nothing serious. Keeep us posted.


    Take Care,


  3. Welcome Eliza,


    So sorry to hear about your diagnoses. You have come to the right place for information and support.


    Try not to read too much too soon - easier said than done when you have so many questions, I know.


    I found it more helpful to read about people's experiences here than to read too much of what's out there online, even though it is good information - too much too soon is not good.


    Ask away too, so many knowledgable, experienced, educated people here to help you out. (though I'm not one of them! :lol: )


    Glad you found us. Take Care,


  4. Hi Heather,


    I have been looking and I haven't had much luck finding anything online about tendon friction rubs. I'm guessing we will just have to live with them from here on out.


    I just wish I knew if there was something I could do about them. I have an appt. with my rheumatologist on the 30th next month. I'll let you know what she says.


    Welcome to forums.


    Take Care,


  5. I found out today that my best friend from college passed away a few months ago. I'm having a hard time dealing with it.


    She was one of the greatest people I have ever known. She was legally blind and she lived her life like she had no disability at all. She was an inspiraton to me and to so many other people I know. I admired her strength, courage and her perserverance.


    She was a beautiful, beautiful person inside and out. She was fun and funny and warm and caring. Just a lot of fun to be around. Five minutes after I met her I felt like I had known her all my life. She made everyone around her feel so comfortable and at home. That's what I remember most about her, how when I was with her, I felt at home.


    After graduation we lived 2 hours away from each other but kept in touch through letters and occasional phone calls and get togethers but as time went by, our contact became less frequent.


    A little over a year ago she sent me a card. In it she talked about relationship problems. She also said that I was special to her and she wanted to keep in better touch. I never replied to that letter and it was her last. Losing her address was no excuse because I could have sent something to her mom who always made sure she got her mail. I was a lame friend.


    She was there for me through one of the darkest times in my life and I was not there for hers. I could have been. I SHOULD have been.


    I always thought she'd always be here. I thought I could get in touch with her anytime I wanted and we could get together again. How selfish of me. How long does it take to write a letter or make a phone call? I don't think I'll ever be able to forgive myself for not staying in closer contact with her like she wanted to. I was not there for her because it was not convienent for me. I was a self-absorbed, lame, lame 'friend'. She deserved better from me.


    There is nothing I can do now. Nothing I can do to make it up to her. Oh I will miss her so much. What a colossal waste. She was gem.


    Please, go call a friend tonight.


    Thanks for listening,


    Be well,


  6. I have to agree with Sweet, Janey. You are an inspiration to me too. You deal with each hill and valley of the roller coaster with such a positive attitude and you seem to take everything in stride.


    I'm sorry you have so much to deal with all at once. My head would be spinning and I would be a total basket case. I'm so glad you can still be our rock ( one of our rocks:) here on the sclero forums in spite of all you're dealing with.




    Hug your hubby for me - what a great guy.

  7. Symptoms flaring. New and old.


    Hands are hurting, getting cold.


    Reading doesn't ease my fears


    When callous researchers count my years


    1, 2, 3, 4, 5, 6.


    Hurry up and get your kicks


    6, 5, 4, 3, 2, 1....


    Wait a minute......I'm not done.......


    I retreat again to all that matters


    Sticky kisses and pitter patters


    Innocent, trusting big blue eyes


    Look to me to be thier guide


    Look to me to keep them safe from harm


    Look to me to keep them warm


    Give me time to raise them right


    Give me a cure for scleroderma tonight.

  8. The insurance plan administrator customer service agent had a hard time answering my simple question and she kept putting me on hold to talk to their "prescription dept." (Why couldn't she just transfer me and let ME talk to them?) :angry:


    I stumped her and she was annoyed by this and really wanted to get me off the phone. She practically hung up on me while I was saying thanks for her "help"


    They haven't heard the last from me. I will take it to our local TV station's consumer reporter to help me with getting answers if I have to. :o


    The last time I did math, 30% of $614 was LESS than 30% of $700+.

  9. I had my Cellcept Rx transfered to a pharmacy which quoted me a MUCH lower price (over $100) even though that meant driving 1/2 hour one way to get there.


    Yet I was charged the same amount when I got there.


    The best answer my insurance comapany could give me is that they have a "contracted price" with the pharmacies.


    SO, from that answer, what I understand to be true is that it doesn't matter what the pharmacies pay, or what cash price they would charge you before insurance, they will get paid the same amount from the ins co.'s and there is no savings passed on to me.


    How fair is THAT?!


    Pharmacy A quotes me over $700 before insurance


    Pharmacy B quotes me $614 before insurance





  10. Hi Danelle,


    Wow, such great advice and support - you came to the right place. :)


    I too had to modify my plans when I was diagnosed. I was applying to graduate school to get my masters in education - something I really, really always wanted to do. I have since realized, that was going to be just too much for me.


    Now I teach preschool out of my home and it has been very rewarding. I'm looking forward to expanding my class size and days of the week next year.

    I know I can still take a class here and there whenever I feel like it.


    I always think that everything happens for a reason though we may not know what for or why. But if we just roll with the punches we may be able to find out later when looking back at the path from where we came.


    Don't mean to sound preachy but this approach always helps me to cope with life's punches so I don't end up with permanent black eyes :lol:

  11. Hi Laura,


    I'm sorry for your embarrassing problem. No, I've never had that happen...not sure EXACTLY where you're talking about either :P But I have a general idea.


    Is it very painful? Does it heal quickly?


    I'm glad it hasn't come back for you in awhile - hope it NEVER does!


    Be well,


  12. Okay, my last words on Prilosec.....the surgeon who removed my gall bladder told me that the Prilosec I was taking at the time has a possible side effect of abdominal cramping and loose stools.


    Incidentally, there are NO possible side effects listed on the package. My surgeon said that most people don't know this about Prilosec. (maybe that's why! :rolleyes: )


    He brought this up to me because I was still having cramping and loose stools 6 weeks after surgery. He said that 6 weeks is a normal recovery time but if it continued, even with acidophillus, then he wanted me to stop the Prilosec for awhile to see if that was causing it before he went back in surgically to look around. This was 8 months BEFORE my Diffuse scleroderma diagnosis - so now I assume my GI problems are that.


    Has anyone else ever been told of this side effect from Prilosec? When my surgeon said I may have to go off it I was a little concerned because there's no way I can survive without it! Heartburn and reflux too, too bad.

  13. Went to my general practitioner today for the pain in my calves. Of course it hasn't bothered me for almost a week. Seems all I have to do sometimes is make the appointment and I'm cured :lol:


    Doc said to reduce salt intake, use ice and anti inflams when it flares, and try some B-complex vitamins. Possibly later try diuretics.


    Also he's sending me for a lower extremity arterial evaluation which I guess is done by ultrasound.


    Has anybody ever had one of these done?

  14. In reading this thread I realized that I may be able to get my insurance to pay for part of my Prilosec - couldn't I? As long as it is prescribed by my doctor right? I never thought to ask about coverage for prescribed meds off the shelf.


    Then again is it considered a "prescription" if it comes off the shelf? Or is it only a "prescription" if it comes through the pharmacist? No matter where it comes from, doc says take it - you need it, so what's the difference?


    I'm sure my insurance company will find a difference!


    It's late and I'm rambling here I know - okay :blink:


    Good night.

  15. Hi Mike,


    I take one Prilosec in morning and one at night just because rheumatologist told me to take it that way and it works for me. I have no heartburn but I still do occasionally have night time reflux - maybe 3 x in the past 3 months? I think it's because I either ate something I shouldn't have, didn't have a totally empty stomach before I went to sleep, or I had the nerve to actually want to sleep lying down for a change! :o


    Take Care,


  16. My hips hurt so bad a cane would be nice......

    My wrists hurt so bad I can't use a cane. :(


    My wrists hurt so bad some ice would be nice....

    My Raynauds flares so bad I can't use any ice. :huh:


    My body is so stiff some stretching would be nice....

    My body hurts so bad I can't stretch much. :blink:




    I'm sure the rest of you have more to add......... ;)