When I first learned I would not be able to work anymore I was terrified. I was raised with a strong work ethic. I stupidly worried what other people would think of me. Disability is still seen as a lazy person’s way out of working by quite a few people. Even some people in my own family.
There are people who abuse the system. This makes it harder for those who really need it. It seems to be a big problem in my state. It is often on the local news where someone is caught lifting heavy objects when they are on Disability for a back or shoulder injury. Again this makes it harder for the people who need it and adds to the stigma of being on Disability.
There is a misconception that the money you get every month is a large amount. It isn’t. At least not for me. I started paying into it at the age of 14 and receive $1360 a month. I still have to live with my father. There is a wait list to get on the wait list for housing. The estimated total wait time before you get help with housing is 5 to 7 years. That is if you qualify.
Medicare is an entire different problem. Trying to get anyone to help you is so frustrating you give up. My drug coverage suddenly changed on January 1, 2016. When I first enrolled there was no deductible. Now there is a $2,600 deductible. I found this out when I went to refill my Topiramate. The copay was $79. I needed my inhaler too and that was $56. I couldn’t afford both. When I tried to ask Medicare about a better plan they were no help. They referred me to my local Social Security Office.
I know from experience that Social Security will refer me to my local DHS office. The same office where I have been laughed at when asking questions and had my stutter mimicked. I refuse to deal with them.
My medical bills are mounting from the 2 Hospital stays I had when my kidneys failed. I still have no answers from any Doctors as to why my kidneys keep failing.
I went to my General Practitioner today hoping she could help find a Doctor in Boston. After waiting over an hour to see her she wanted to do blood work that I had already had done. She also wanted me to have a bone density scan, a mammogram, and other tests I didn’t need.
It’s already in my file that I have Osteoporosis, Osteoarthritis, Spinal Stenosis, and other bone issues in my back, hips, and pelvis. She’s the one that sent me for the MRI. So why do I need to have these tests done again?
I’m not going to. The bigger issue is finding out why I keep going into kidney failure. I think that is more important at this point. Medicare isn’t going to pay for tests that I’ve already had done. She kind of brushed me off. I’m tired of being a Guinea Pig.
My biggest fear is ending up like my Uncle Jimmy. I don’t want to be found dying alone with no one who cares about me. I don’t want Doctors that give up because I’m on Medicare and Disability for a mental illness so they feel they don’t have to try as hard. I don’t want to be forgotten. My family is so used to me being sick that it’s just another thing for them. No big deal. They don’t realize how bad it is. How scared I am. How what little money I had has gone to medications and Hospital bills.
When I apply for help they tell me I don’t qualify because I receive too much. Live in my body for one day and then tell me that.
Watch the wads of hair fall out as you wash it, feel the hellish pain on both sides of my back that keeps me awake all night, the constant headaches, the trouble breathing, the weight loss, wanting to eat but after 2 bites being full, the bloody noses, the constant fatigue, the pain in my tailbone because there is nothing left to cushion it, the blurred vision, the change in personality that keeps people away even more than before, the fear of dying, the feeling no one notices or cares, the constant anxiety over money, being cold all the time to the point you want to cry. This is how I live everyday. Actually this isn’t living. This is dying.