Wednesday, November 13, 2019
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Accepting the Word “Disability”

I’ve known that something was wrong with my body since I was able to think.

I fought against this theory for a LONG time, especially when I was younger, and had more fight left in me.  Sadly, after I finished my education, it was time to face the fact that I was, in fact, unable to work to support myself.  I will forever be grateful that I have the most amazing and supportive family, as well as a wonderful partner.  They kept me alive when I didn’t think that I was going to make it.

Thankfully, with a change in doctors, and subsequently medication, my Fibromyalgia is behaving better.  I recently got a diagnosis of high-functioning Asperger’s, which has helped me realize just why I’ve had such bad luck with work.

Yesterday, I became a member of the PEI Council of People with Disabilities.  I’m a health activist with a lot of skills, and I want to be able to use them.  By having a case worker, it’s possible that I can find employment where the employer knows exactly what obstacles I face.  I’m feeling optimistic, as I would love to be able to help provide for myself and my massive medical costs.

I can’t guarantee it will work out, but as it doesn’t seem like I’ll be able to get disability allowance as of yet, it is my best option.  Plus, I want to contribute in any way that I can.

How many of you work with disability counselors?  Who has successful jobs where their employer is flexible?  How do you all feel about the word disability?  I’d love to hear more!

xoxo,

Annie

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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4 comments

  1. Annie, This is a great article! I feel the same frustrations as you, not being able to work or contribute to my medical costs. Watching my boys grow into fine young men has been the only “job” I have had for 11 years. I have succeeded at that, which I think is much more rewarding tahn pulliing in a huge salary.

    The PEI will be better now that you are involved. You are so enthusiastic, smart and your brain never stops thinking of a better way for everything.

    You are on the right path Annie, and I’m positive that your “inner Radar” will lead you the place you are intended to be.

    xomo

  2. Melissa Mathieson

    Hi Annie! I’ve just started having problems getting thru a workday. I have pushed through each day for the past couple of years. This past week I had to leave work due to new med side effects. Yesterday I hit a wall and had to go home, nap for a couple hours, then return to work to complete my tasks. I’ve always been allowed to leave early, come in later or take an extended lunch to go to doctor appointments. I consider myself very fortunate to have such accomodating bosses. I fear they may tire of my unpredictable attendance so I decided to apply for an intermittent leave of absence to protect myself when I’m absent or tardy due to my diseases.

  3. Anne, This is a great article!
    I got sick with liver disease (PSC and auto immune hepatitis) when I was 19 while I was going to cosmetology school in Santa Monica, CA. I had my first liver transplant on 4.18.02. After my first transplant I started getting pain because of permanent nerve damage. I then got sick again because of chronic rejection, chrons, and liver failure due to auto immune hepatitis, my spleen was also grossly enlarged so I had to have it removed 3 months before my second transplant ( my spleen was 7 1/2 lbs) I had my second liver transplant on 12.23.09. Because of my chronic pain and chrons and over all health issues it is hard for me to work a 40 hour a week job because I have my days when I don’t feel well and can’t make it to work so I started selling Mary Kay as a independent beauty consultant and it has been a wonderful job for me! I make my own schedule and if I don’t feel well it’s no big deal.
    If anyone is interested in becoming a independent beauty consultant with Mary Kay I would love to tell you about the business and the fabulous ways to make money and support yourself and be your own boss. If anyone has any questions you can contact me @ lhughen@gmail.com

  4. I had a difficult time saying the words I am disabled. I was a professional in the insurance industry, I have several designations and was a licensed agent. As a matter of fact I became disabled just a few months after I obtained my license. I was Very proud of my accomplishments, and I thought I was a rising star.
    I have not worked for approx. 7yrs due to Fibromyalgie, Spinal Stenosis, and Arthritis. When people look at me they say “you look so good, no one would ever think that you feel as bad as you do.” I had a lady tell me that I should leave the handicapped parking for the people that really handicapped.” needless to say I gave that woman a ear full of expletive, and I showed her my surgical scar on my right knee, she was totally embarrases and stated that I taught her a valuable lesson. I think the worst part about having Fibromyalgia is it is a faceless disease. What I mean is that until someone famous is diagnosed, I don’t think the general public will begin to understand what a horrible disease we are dealing with. I would give “ANYTHING ” just to have a pain free day.

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