TWJEN - I am so sorry....

Discussion in 'Fibromyalgia Main Forum' started by opala, Dec 7, 2002.

  1. opala

    opala New Member

    I totally understand what you are going through. I've been battling doctors telling me "it's all in your head" and "it's just stress" and "it'll go away" before finally getting diagnosed by a Rheumatologist (which I had to fight my doctor to get referred to). Meanwhile, I've been on Short-term disability for two months, and haven't been better enough to even drive yet.

    Since day one, I was given form upon form upon form to fill out and have the doctor fill out. My (former) doctor couldn't understand why I couldn't work. Or walk without aid. She actually told my husband that filling out these forms would "cut into her sleep time". I was just floored when I heard that.

    After filling out all the forms, I was informed through mail that these were never received and if I didn't get them sent immediately I would lose my disability. So I resent. Weeks later, got another call. Still haven't received, and oh, by the way, here are more forms you have to fill out. Resent forms again. Tried to get the new doctor to fill out the new forms. He refuses to do disability reviews. Told me to get the rheumatologist to fill out the forms, as this DD was his "specialty". Rheumatologist says he doesn't feel comfortable filling out these forms as this is the first time he has seen me and he won't see me again for 2 months, and a lot can happen in that time.

    Meanwhile, company reviewing disability claim calls and says my doctor (pcp) won't approve disability. Then says my rheumatologist won't recommend disability. Then says she was told I have FMS, but it is her understanding this is a "garbage pail diagnosis" as it is "given when the doctors can't find anything else." And she will recommend two more weeks of ST disability, but no longer than that.

    So I'm stuck with the situation of having no sick days or vacation days left (they've all been used on doctors appointments, specialist appointments, tests and physical therapy), and I have to either return to work in two weeks (whether I'm better or not) or I have request an unpaid leave of absence (which they are not likely to grant). If I return to work and have another major flare-up (the I-can't-get-out-of-bed-because-every-single-muscle-in-my-body-is-charley-horsed days) and can't come to work, I'm taking an unapproved day off (too many of which will get me fired.)

    And between medications, doctor bills, mortgage payments, car payments, bills, food, a step-son in college, etc. there is no way I can afford not to get paid. And don't get me wrong, I would LOVE to go back to work. But my hands are pretty much tied and I HATE this DD.

    So, twjen, you are not alone and I completely empathize. I am so sorry to go on and on like this, but I am not used to being so helpless....I have days when my husband has to carry me into the bathroom and dress me.

    Employers, insurance companies, even doctors can't understand what we are going through. And describing it does not help. There is no way without actually experiencing this DD that anyone will ever be able to understand. The thing that's been bothering me from day one is people (doctors, friends, family) always saying "well, it could be a lot worse" and "hey, at least it isn't fatal."

    Well, that doesn't really help. It just doesn't make me feel any better, really.....sometimes I feel like being dead would be preferable. Luckily, those moments are few and far between, but I think you all know what I mean.
  2. opala

    opala New Member

    I totally understand what you are going through. I've been battling doctors telling me "it's all in your head" and "it's just stress" and "it'll go away" before finally getting diagnosed by a Rheumatologist (which I had to fight my doctor to get referred to). Meanwhile, I've been on Short-term disability for two months, and haven't been better enough to even drive yet.

    Since day one, I was given form upon form upon form to fill out and have the doctor fill out. My (former) doctor couldn't understand why I couldn't work. Or walk without aid. She actually told my husband that filling out these forms would "cut into her sleep time". I was just floored when I heard that.

    After filling out all the forms, I was informed through mail that these were never received and if I didn't get them sent immediately I would lose my disability. So I resent. Weeks later, got another call. Still haven't received, and oh, by the way, here are more forms you have to fill out. Resent forms again. Tried to get the new doctor to fill out the new forms. He refuses to do disability reviews. Told me to get the rheumatologist to fill out the forms, as this DD was his "specialty". Rheumatologist says he doesn't feel comfortable filling out these forms as this is the first time he has seen me and he won't see me again for 2 months, and a lot can happen in that time.

    Meanwhile, company reviewing disability claim calls and says my doctor (pcp) won't approve disability. Then says my rheumatologist won't recommend disability. Then says she was told I have FMS, but it is her understanding this is a "garbage pail diagnosis" as it is "given when the doctors can't find anything else." And she will recommend two more weeks of ST disability, but no longer than that.

    So I'm stuck with the situation of having no sick days or vacation days left (they've all been used on doctors appointments, specialist appointments, tests and physical therapy), and I have to either return to work in two weeks (whether I'm better or not) or I have request an unpaid leave of absence (which they are not likely to grant). If I return to work and have another major flare-up (the I-can't-get-out-of-bed-because-every-single-muscle-in-my-body-is-charley-horsed days) and can't come to work, I'm taking an unapproved day off (too many of which will get me fired.)

    And between medications, doctor bills, mortgage payments, car payments, bills, food, a step-son in college, etc. there is no way I can afford not to get paid. And don't get me wrong, I would LOVE to go back to work. But my hands are pretty much tied and I HATE this DD.

    So, twjen, you are not alone and I completely empathize. I am so sorry to go on and on like this, but I am not used to being so helpless....I have days when my husband has to carry me into the bathroom and dress me.

    Employers, insurance companies, even doctors can't understand what we are going through. And describing it does not help. There is no way without actually experiencing this DD that anyone will ever be able to understand. The thing that's been bothering me from day one is people (doctors, friends, family) always saying "well, it could be a lot worse" and "hey, at least it isn't fatal."

    Well, that doesn't really help. It just doesn't make me feel any better, really.....sometimes I feel like being dead would be preferable. Luckily, those moments are few and far between, but I think you all know what I mean.