To understand why I write so much about disability, you need to understand or at least know, how much it has impacted my life. I am of the school of thought that says you can adapt to any disability, and that is why I am out here, writing and trying to keep going. Some days, I think I am wrong. Here is the list of medical ailments that are currently plaguing me.
1. Ehlers-Danlos Syndrome – A supposedly rare connective tissue disorder that causes everything to be stretchy. I am so flexible that I can barely move without dislocating something, but, I don’t have the super stretchy skin. Who woulda thunk?
2. Reynaud’s Syndrome – A circulatory disease that causes your extremities to lose their blood flow if you get too cold, too stressed, and sometimes if you don’t eat right.
3. Celiac Sprue- An auto immune disorder that effects your digestion and is triggered by the gluten found in Rye, Wheat, Spelt, and food like that. It can cause debilitating pain, malnourishment, and is dangerous. It also has the side effect of missing Pizza.
4. Oral Allergy Syndrome – This is the umbrella term for my massive allergies that the doctors gave me, as I react to foods but not outdoor plants, and I do not react to blood tests or the skin prick test yet I go into anaphalactic shock with most of my allergies. I am unable to eat vegetables, except some corn, Grain, except rice sometimes, Most fruits (Even Grapes), and Milk. I can have processed milk products such as yoghurt and cheese, even ice cream, but straight milk makes me sick.
5. Multiple Chemical Sensitivities – If I am around it long enough I become allergic. Medications such as Tylenol now cause severe reactions including hemorrhaging. Febreeze is the worst though, I stop breathing and react about the same as I do with a freshly sliced cucumber, the particles in the air are out to get me.
6. Multiple Breaks in my Back and an SCI- I have multiple vertebrae that have slipped, some are broken, and a few are crushing through my spine. My sacral area is the worst, I have a gnawing claw shaped break that cuts into my spine and will eventually sever it. Due to the location and my other disabilities it is untreatable. The other break is between my shoulder blades. I sat up straight in December and had two discs crack under the weight of my chest. I use a scooter but at this time, I do walk some. I can go about ten feet before I collapse.
7. Nueropathy- Before my back injury I was assaulted over a candy bar in my college art class and had a student twist my arm so hard that the bones turned around and the nerves tore. I had to work to hold a pen and a pencil, and suffering from Dysgraphia before this occurred, has added to my pain greatly. I no longer draw though I have begun to paint with my mouse again.
8. Post Traumatic Stress Disorder- I have had a very traumatic life by most standards. At this time it has been a week since my last flashback, though before that it was almost a year. I consider my self management of my psycholigcal condition mostly under control, though, at times even I have trouble fathoming what I have experienced. Details might come out in this blog, but, I will share a few here. My biological father is a sociopath. He used God as an excuse to try and kill his children daily, and the EDS (Ehlers-Danlos Syndrome) was all that saved me some days. This is just one small example of the things that have caused traumas in my life, though, they do not rule me any longer.
9. Hidradenitis Suppurativa: A rare, genetic skin condition that may be triggered by environmental things. The disease has several stages, starting with small boils and ending with giant networks of constant infection. The only treatment is often surgery. The condition is identified by it’s boils, abscesses, and excessive sweating.
10. Autism Spectrum Disorder. -It effects communication, socialization and has explained a lot of my quirks and eccentricities. I am still learning about my autism, and coming to accept it. The information I share here may be updated as I become educated further.
11.There are more things that will be added to this list, I am in the process of testing for Cushings Disease, I have had skin cancers removed, as well as strange tumors that my doctors aren’t sure what are yet, and I have even had rare reactions to medication such as Purpurah. I think that is how you spell it, I just remember how it felt to be honest with you.
This is not a short list, and, a lot of the disabilities are hidden. Most of the time, if I am not in my wheelchair I look just like anyone else. This caused some problems with my childhood, because you cannot be in pain if you aren’t bleeding right? Someday, I will post about Hidden Disabilities.