Being disabled is not my fault, but society doesn't see it that way.

Disclaimer: Please don’t feel bad for me. I’m not looking for sympathy, but I’d happily accept your help with suggestions for finding financial, medical and housing help!!

I’m honestly not a fan of shopping for the sake of shopping, but mainly because I’ve always been cheap. Well, I do believe in treating yourself with nice things when you have some extra to spend, but I am now in a situation where that isn’t an option. I do enjoy buying and making gifts for others, but that’s another tale. My mother is a compulsive over-spender, which also played a role in my bargain hunting ways. I hated wastefulness as a child and freaked if something I owned was broken or otherwise ruined (finished a coloring book, shirt gets accidental bleach stain).

No one sets out to be poor and disabled. I had a career plan and intentions of working hard to have a home of my own. Instead, I only get a small amount in the form of SSI each month due to my lack of income from being severely disabled. If my dad wasn’t gracious enough to cover my medical copays, it would easily exceed that amount. After personal care items, occaisional clothing and my cell phone bill, I sometimes have nothing left. I didn’t grow up this way. My dad had a good upper management job and although we lived in a modest home in a mostly middle class town, I often got whatever school supplies I needed, brand name shoes and clothes and nice gifts on holidays. My brother and I always voted in favor of material things over small vacations because we couldn’t afford both even at the best of times. Side note: he apparently resents this fact, I think it’s awesome I sometimes had stuff my other friends didn’t!

My only other help is SNAP which is food stamps. I’m able to buy most of my own groceries and I’m thankful for this assistance. I wish more stores that carry inexpensive food items (like Big Lots, for example) accepted SNAP. I’m currently on a letter writing campaign.

But why then do you see me buy from Amazon or IG thrift stores? That’s simple! I don’t drive and disabled transportation (known as AbleRide here) is expensive and sometimes unreliable. I’m lucky that my best friend Melissa and my dad will often offer to take me to a store to pick up essentials (and the occaisional fun purchase). I really do have to depend on the internet for things like clothing, makeup, pens, shampoo, books, etc. I search out the best deals and take full advantage of Prime.

I have no savings nor any other assets despite working since I was legal. I attended college and graduated from esthetics school. Any savings I had paid for the books, supplies, uniforms and graduate classes not covered by my scholarship (thousands!). Some holiday money and giftcards really helped me “splurge” this holiday season and buy things like makeup, scarves and other fun purchases. I try to trim my own hair in between real hair cuts which my stylist has been helpful in suggesting I skip the blow out to save money (she’s great).

My mom tends to buy me the least practical of things, but often pretty items and of course I won’t turn down a thoughtful gift. Although, if she helped me pay for my contact lenses instead, that would be far more helpful and appreciated. Like I said, she likes to shop, so I guess it brings her joy to do that instead. Not my preference, but no judgement.

Am I below the poverty line? Yes, very much below. Do I have somewhere to live? It’s a roof over my head with heat and a bed, but is not handicap accessible nor safe for someone in my condition. Can I pay bills on time? I always do. I never spend beyond what I have each month. Do I go without things I need or want? Yes to both. I’ve washed my hair with bar soap, I’ve worn “dirty” clothes, I sell my belongings and cry when parting with some of them, I’ve gone without medications,… OK, this is getting me down. You get the picture. Would I like a job? YES, PLEASE! Do I need a wheelchair accessible place to live? Desperately! I’d do anything! ANYTHING.

One last note is that I have looked into medical treatment out of state since there are no doctors who treat Ehlers-Danlos Syndrome in a 200 mile radius. There are 3 possible options, but I could never afford the travel nor the related expenses. I fear money is what stands in the way of living rather than barely existing, but what can I do? It’s true, money talks… and makes people actually listen!


3 thoughts on “Finances

  1. Although I do not know much on how to help on your situation I would maybe looking into the site Your story is incredible and if you get the word around maybe this could assist you? The fact that no doctors that can help you are in your area is just outrageous..


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