Page 1 of 4 1234 LastLast
Results 1 to 10 of 34

Thread: Wow, I really AM disabled

  1. #1

    Wow, I really AM disabled

    The Spoon Theory, courtesy of The Hip Crip

    http://butyoudontlooksick.com/naviga...poonTheory.pdf

    An amazing analogy for having a chronic disease ^^

    Yesterday I was busted by my medical insurance company and will now be forever forced to use Medicare for my primary insurance. With that, I finally realized that SCI didn't whup me, but SCI and Graves disease did. I am officially unemployed and unemployable, basically. I thought I knew it but man that was a kick in the ass.

    For those that know someone that had Graves and it was no big deal-there is a 1% sector of ppl that aren't candidates for the magic "Fixes Graves Disease" treatment. (Which isn't magic, is often life-destroying, but that's another rant.) And of course, I'm one of them. It attacks my eyes and lower legs and my poor thyroid. The thyroid is manageable. For the rest, no treatment exists. Every 6 months I ask my endocrinologist if there is a specialist that works w/ autoimmune diseases like this. The answer is no.

    Good diet, low stress, pain management, temperature regulation, stay out of the sun...all these things help. It's a balancing act.

    But no way will I ever again be reliable enough to commit to being at a job every day. My health doesn't allow it.

    So if you are one of those that tell us to just get a job and re-build...STFU, dude. (It's always a dude.) Some of us don't have that luxury.

    For those of you that have done so, I admire you fully and am pleased for your good fortune. First among your good fortune is largely being blessed with drive and ambition, some of you really ARE inspiring. (cspanos, Rhino, LizBV, cass back before it caught up w/ her, so many others-I'm looking atchoo.)

    But before anybody pops off about people sucking at the government teat, lazy gimps, etc., remember your good fortune.

    Sorry, this went all over the place. I so often feel the need to apologize for my unproductive life and that Medicare phone call kicked me bigtime. Unfortunately, those that really need to read this won't, or if they did they wouldn't get my point.

    If anybody hears of a part-time job I can do from home, that won't cause me to make so much money that I lose these all-important paltry benefits that a middle-class dog can't survive on, let me know!

    Better yet, if you hear of an illegal gig that doesn't get reported to the gov't, I'm your gal.

  2. #2
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Location
    Wisconsin USA
    Posts
    11,007
    Coming soon to a bookstore near you: The Life and Times of a Kick Ass Gal by Betheny W.

    I have my copy reserved.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  3. #3
    Senior Member cali's Avatar
    Join Date
    Sep 2005
    Location
    where everyone knows your name
    Posts
    4,608
    when my mom retires, she's thinking of starting another little mail order business like she had when she was raising us three kids. she also has it set in her head that i'm helping and may even keep it going for some extra income on the side.

    i don't find myself to be a sticker-slapper.

    but, maybe you can be an aspiring sticker-slapper for some extra cash!
    Never take life seriously, nobody gets out alive anyway

    Frank's blog:
    http://www.franktalk-scurry.blogspot.com
    My regular blog:
    http://www.ithinkithinktoomuchblog.blogspot.com

  4. #4
    Moderator jody's Avatar
    Join Date
    Jan 2004
    Location
    east o the southern warren
    Posts
    8,530
    your life isnt unpreductive. though it does suck being labled unemployable. it doesnt mean you are less valuable. what is graves disease? I thought it was a side affect of thyroid disease. and about the gimp thing, we all want to be valid not invalid. I didnt consider myself so much a gimp, but a divorce, and now the departure of my sweetie of four years, the way I just cant carry out farrie maid service, or provide more income, or keep my kids behaved and on the golden road, just tells me that it is what it is. no respect, so self respect sometimes is thin. still here we are.
    dont you know though betheny that you have been for many years very important to care cure. so many learn so much from what you write and especially your way of saying it. because you been there and well, this is care cure, and were all kinda gimpy in one way or t other. so what is graves disease. what is it like? you may be the lady to educate the world.

  5. #5
    Moderator jody's Avatar
    Join Date
    Jan 2004
    Location
    east o the southern warren
    Posts
    8,530
    id do it cali.

  6. #6
    Moderator jody's Avatar
    Join Date
    Jan 2004
    Location
    east o the southern warren
    Posts
    8,530
    id still be scrubbing others toilets for income if I could. a job is a job. and honest pay is something I worked hard at having. I had a little landscaping business when I wasnt cleanin stalls and grooming horses. as well as the five houses I vacumed mopped and wiped up. also thirty to eighty hours a week depending on the season as a deli clerk at a union store. I majored in biology(pre-vet) and was a music minor. still, no vr and not a single job after my dance with the drunk car. so Iv made room for things that I put away when I was obliged to be invisable and unapreciated and when my squashed heart heals, and I can breath without aguish, im going to just be a creature sitting on the world with as much right to be as anyone or anything has a right to be. employable or not.

  7. #7
    Senior Member Jeff B's Avatar
    Join Date
    Sep 2003
    Location
    Ontario, Canada
    Posts
    1,402
    Quote Originally Posted by betheny View Post
    But no way will I ever again be reliable enough to commit to being at a job every day. My health doesn't allow it.

    So if you are one of those that tell us to just get a job and re-build...STFU, dude. (It's always a dude.) Some of us don't have that luxury.

    For those of you that have done so, I admire you fully and am pleased for your good fortune. First among your good fortune is largely being blessed with drive and ambition, some of you really ARE inspiring. (cspanos, Rhino, LizBV, cass back before it caught up w/ her, so many others-I'm looking atchoo.)

    But before anybody pops off about people sucking at the government teat, lazy gimps, etc., remember your good fortune.
    What many of those who are "independent" or luckier still "productive" don't yet realize is how much of their independence and productivity is due to luck. Yes, hard work and stubbornness will help you get there but if you are not lucky enough to have bowels, bladder and skin that will cooperate enough to be predictably managed or maintained, then you are not going to be getting as much done as they can.

    If you have to spend 4 hours every morning dealing with your bowels, even with hired help, and still have a pretty good chance of crapping or pissing yourself later in the day, or if you have relentless pressure sores, you are just not going to be able to go into the office every day just like anyone else. It won’t matter “how much you want it”. Add other health conditions to the mix and for some people being "independent" or "productive” is not going to be an option. Just trying to stay as healthy as their situation allows may take all of their free time and energy. Sometimes someone who is just hanging in there is actually working harder than someone who appears to be doing it all. The effort put forth by some SCI’s to stay in the ‘productive” club is often impressive but it sometimes also leads to them neglecting other needs, like diet, health, skin, exercise and other things that we need to pay more attention to than ABs.

  8. #8
    Jodi-In most cases Graves is an autommune disease where the immune system attacks the thyroid, making it overactive. So they kill the thyroid with radiation and give them synthetic thyroid hormone for the rest of their lives. Theoretically, that is it fixed. In reality, there are thousands that regret permanently destroying their thyroids, because the thyroid substitutes don't work or they aren't given enough to make them feel well.

    The thyroid hormone is the only one that has a receptor in every cell in your body. Too much thyroid, and your metabolism is hyper. You can't sleep, you're skinny, oily skin, hair falls out, emotions all over and worst of all is "brain fog". You can't remember anything. I know my thyroid is out of control when my utilities get shut off because I kept meaning to pay the bills but never followed through.

    So I take a "thyroid blocker", which keeps your body from converting iodine into thyroid hormone. It's pretty safe, people take it for decades. But the dosage is impossible to get right, because it has so much to do w/ stress, diet, rest etc. And your body interprets exercise and pain as stress, so I have to moderate both of them.

    If I take too much thyroid blocker, I get low thyroid. Low metabolism, gain weight, really achy muscles and joints, all you can do is sleep. Low thyroid SUCKS.

    But in the fortunate 1%, the Graves antibodies also attack the skin on feet, ankles and shins. They swell, it is painful. Also the antibodies attack the optic nerve-my eyes get so swollen and red, and vision gets blurry. Recently my eyeball CRACKED, b/c my eyelid wasn't closing all the way over my eye as I slept. If I take the radiation to kill my thyroid, or have it removed surgically, it will make the antibodies attacking my eyes/legs worse, a thing I learned myself on the internet. It's so rare my endocrinologist didn't even know it! (Endocrinologists supposedly specialize in glands secreting hormones. In reality, they specialize in diabetes, because it is usually the pancreas that goes. For Graves patients, they automatically try to nuke or remove the thyroid.)

    My endocrinologist wanted to nuke my thyroid immediately, saying "I don't see it in your eyes." But my mom had said "What's wrong with your eyes?"

    LOL. Who would you trust? At least after my eyeball cracked the endo quit nagging me to kill my thyroid...because it is OBVIOUSLY in my eyes.

    THANK YOU for asking. Nobody usually wants to know that much, it's a lot of info.

  9. #9

    heartbreaker

    Sorry Betheny, you have been a positive influence for me and so many here. I've found your contributions to be balanced and compassionate yet honest.

    Another one of us gets the rug pulled. I've been on and off disability and it sucks and waiting for the day I can't work and my life goes into the crapper.

    Some of the folks here while afflicted are better off than others. To be honest it pisses me the f off to read some of the shit they write, pompous arrogant fools so self absorbed with the with thier wonderment at their lofty achievements. I hold them not grudge as I recognize the work it takes but they haven't walked in my / your moccasins so speak from their viewpoint and presume others to be malingerers

    I've paid my dues, my trial by fire in Nam and several wounds and injuries. I am no wuss but would glady give my legs for the pain to go away. I'd be a terror then too. But living in pain 24x7x365 for 5 years at a level of 8-10 you can't do squat.

    I'm rambling too. You worked and paid into the system let it do its paltry best for you.

    Hopefully you'll find something illegal really profitable and FUN

    Keep your head up and your heart open you're special.

    Warmly,

    bill

  10. #10
    It's a shame you can't get paid for simply having bigger balls than most (I think only certain porn stars qualify)
    C5/6 incomplete

    "I assume you all have guns and crack....."

Similar Threads

  1. Outdoorsmen seek access to game lands for disabled hunters
    By Max in forum Recreation, Sports, Travel, & Hobbies
    Replies: 0
    Last Post: 04-06-2003, 12:48 PM
  2. Get up & Go
    By antiquity in forum Recreation, Sports, Travel, & Hobbies
    Replies: 0
    Last Post: 02-19-2003, 12:27 AM
  3. U.S. disabled dancers create new world of movement (SCI)
    By antiquity in forum Ability & Disability News
    Replies: 0
    Last Post: 01-27-2003, 06:13 PM
  4. Replies: 0
    Last Post: 11-08-2002, 04:52 PM
  5. Replies: 0
    Last Post: 02-06-2002, 01:37 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •