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Rated: E · Article · Biographical · #2274232
A response to a common question I get asked...A LOT
I recently started a GoFundMe   for myself because my chronic medical conditions have been getting progressively worse and I am desperately trying to find a way to get back to at least some semblance of "normal"

Since March 2020, my health has been eroding. Part of it was being unable to continue the self-care I needed to do because of the lockdowns. I had all of my conditions under really good control back before lockdown. My a1C (blood sugar) was at an all-time low. I had virtually no depression or anxiety. I was extremely happy with my job and felt very positive in general. (I still love my job and am thankful for how accommodating and understanding they have been through all this.)

Over the past couple years, my IBS symptoms have become increasingly difficult to control. With all the crazy political and social turmoil and watching our rights being systematically reversed in many areas of our country, my mental health is extremely fragile now which directly affects the inflammatory conditions in my body, including arthritis and diabetes. Excessive stress hormone production also increases inflammation which makes painful conditions worse and makes it extremely difficult to lower blood sugars, even with medication.

I've had to start using a walker at work due to how bad my knees have deteriorated. I'm not even 50, this really messes with my self-confidence and self-esteem. I feel like I'm walking around in an 80 year old's body.

I am on medications.
I go to therapy.

I miss a lot of work due to flareups. Unfortunately, I don't get paid for using FMLA leave most of the time as you have to have earned PTO to go with it for that. So, that means my job is safe. They do reasonable accommodations so I can't get fired for being sick, but I'm also struggling to keep up on bills, pay for my medications, and continue to eat healthy so that I can get my A1C back down to at least pre-diabetic levels.

I can't just get another job. For one thing, it was extremely difficult to find the one I have. Most places in this area will not reasonably accommodate and good luck proving that's why they didn't hire me. I have FMLA protection now and that does not transfer to a new job. I'd be fired the first week if I had a flare-up at work or had to call in sick because of one. This is just reality. I get amazing accommodations at my job. I can sit. Other people help me if I need something I can't reach or lift. They do an amazing job, but there's really no accommodation for the IBS symptoms. I don't want to get into TMI territory, but I almost had an accident at work a couple times. I also had to turn back while on the way to work numerous times because of almost having accidents in the car. This is not something that can just be dealt with, unfortunately. (and no, medications do not work. Diet changes help a little, but not enough)


My medical team feels that taking a few months to relax, de-stress and focus on myself and my health could very well calm down my symptoms to where I could get back to an average 1-2 flareups a month instead of the 2-3 flareups a week I'm dealing with now.

Now, to the disability question.

1. You can't just apply for disability and get it. It can literally take years. I'd end up hospitalized long before I'd receive it...and that's if they eventually give it to me. I've applied in the past. I was told by my lawyer last time she'd get it for me no problem because I have several qualifying conditions and she's won cases for people who only have 1 of my conditions. She was wrong.

2. I do not WANT to be on disability. I don't even like asking people for small amounts of money to help me with gas or bills, etc. I do not want my life, health, and well-being to depend on our government! I do not trust that Social Security will even continue to exist with all the political turmoil going on. I absolutely want to continue to take care of myself and work for my money. I just need to be able to take a short breather to get my health under control. I do not want to permanently rely on others for my survival.

3. If I do end up on disability at some point it will mean being told how much money I am allowed to earn on top of my benefits and it will mean living below the poverty line. I have worked too hard to end up in that situation and I will fight it until my health has deteriorated to the point where I can no longer fight. I will not give up.

I hope this helps people to understand why I can't and won't just "go on disability"

Thank you.

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