Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Aug 9, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i am looking for some opinions.

    i have had CFS for over 15 years and am very sick. i started antiviral treatment and am about 8% better i think, depending on the day. i am still really sick, though.

    my problem is, in order to afford the drugs, i have to keep my insurance, which means i will have to go back to part time work next march. it is about 20 hrs/week. (although i can do about 5 hrs of it at home)

    as it stands now, i need a nap even after a walk and my fog is still VERY bad.

    i am planning on renting a room in a shared house near my work to shave off the 3 hrs/day traveling time and my mom says she will help as much as she can with food, etc.

    i am really worried. the mornings are the worse for me and that is when i will have to go to work.

    i am sure my doctor, dr. lerner, will tell me i will not recover if i do this. i dont know what to do.

    disability, even if i am approved for it, will not pay for valcyte, which is considered experimental treatment. (roche will not give free valcyte to people in canada)

    does anyone out there work and take antivirals at the same time? it is still helping your CFS get better?

    thank you!
  2. simonedb

    simonedb Member

    can you talk to your workplace about accomodating your health needs? breaks where you can lie down somewhere or do what it is you do to help yourself? you could stay at work longer but rest in between stuff, thats what I do, or if I can do some work lying down like phone calls I do.
    Your doctor could write a letter supporting the need.
  3. ladybugmandy

    ladybugmandy Member

    thanks for the responses:) hope you guys are hanging in there.

    my boss is very very nice. he is a cardiologist. they don't know much about CFS here but he seems to be sympathetic and might let me come in at 10 AM instead of 9 for a while.

    i have thought a lot about stock piling meds...i could just tell my GP that dr. lerner wants me to take more and he would write the prescription, but then i would end up feeling guilty. i used to condemn people who commit insurance fraud before i got sick...i would feel like such a hypocrite lol.

    my job is only protected till march, so even if i stock piled a few months of valcyte, i would eventually have to find another job with insurance as good as this job's, which is it takes 3 months at a job for insurance to kick it wouldnt be of much use to stock pile unless i could get 4 years worth!

    i will try and stop worrying about it until next jan. i know i won't be well enough to work in march...i haven't even attained a 10% sustained improvement so far. but...if i live close by and spend all my free time sleeping, maybe i can pull it off, who knows...i will do what i have to!

    i have psychological issues too, one of which is codependance. i have never lived alone in my life...i have tried, but always became suicidal. perhaps this will force me to face my fear. God works in mysterious ways.

    thanks for all your support, guys.

    love you

    [This Message was Edited on 08/09/2008]

    ALEESLP New Member

    I'm taking Valcyte and am working 40 hours a week. The Valcyte appears to have helped my brain fog but the fatigue is overwhelming. I have a wonderful boss who understands and allows rest breaks. My CFS may not be as bad as yours but I pass out at the end of everyday and sometimes don't lesve my bed on the weekends. I have great friends who try to help me but don't really understand. I went to a psychiatrist who has given me anxiety medication due to my anxiety about chronic illness and the possibility of long term disability.

    I think that the most important thing is to develop a support system. Your mom sounds great as are my parent's but they are just as scared as you are about your illness.

    I wish you the best ib your work situation.

  5. ladybugmandy

    ladybugmandy Member! 40 hrs! i am glad you have a good boss and are able to do that. perhaps you're CFS isnt as severe as mine and being treated before you are bedridden is best! sounds like you have a great set of friends and family, too. i hope things continue to improve!

    nink...thanks for the suggestion, but unfortunately, roche does not have the same assistance programs here in canada, as there arent as many people and it isnt as worthwhile for them.

    kelly...yea...i am dealing with more than i let on...much more lol....fact is, i have a host of psychological issues that were put on the back burner for years, both because of the urgency of the CFS and because of the brain fog "muting" my emotions, even the bad ones. it's like a lobotomy of sorts.

    my job is 3 days a week. i thought perhaps moving into a shared house for 3 or 4 days and going back home the rest of the time would be doable (of course, this is assuming the roommates and friendly and quiet - thats a big IF).

    i have tried this idea out before and it always sounds great in theory..but when i attempt it, i seem to slide into a dangerous depression. still, i have never in my life faced a life-or-death situation like this before, so perhaps something will change in my's do-or-die time.

    thanks for listening!