howdy, y’all. I’m gonna tell you a story about the American Medical System and how I almost certainly have permanent neurological damage from being brushed off, minimized, and ultimately committing the cardinal sin of not being rich in America.

I know, this is very long. But it’s important, andif you’re unable to donate, please read my story. Especially if for some reason you or someone you know, think that our medical system is working great.

My parents? Not rich, not comfortable, but we almost always had what we needed. At the very, very least, what I needed. That included hospitalization for migraines when I was five years old, which is where my Neuro issues began, I guess.

I went to college, have TWO degrees, and spent 22 years as a state, licensed veterinary technician. I volunteer my time to help other marginalized people, have hobbies that allow me to get exercise on my pace (since I can no longer run – I ran the Houston Marathon in 2019 and my dream was to run it again, which is impossible now). According to the people who make the rules, I should be doing fine, running a house, putting money into savings, making investments.

I’m not.

I am an autistic, queer, self-employed,trans guy struggling to get out of bed every day due to fatigue so deep that I can doze off while talking to another person. I walk off and on with a cane to balance myself and support a damaged fee I was unable to afford to have repaired. I also use the cane to help with my muscles are weak. I was recently overjoyed because my doctor put me on a new pain medicine that took my pain down to a three for the first time in years. I live with pain every day of my life. I drop things because of weakness in my hands, diminished sensation in my fingers, often have to have my husband help me cut or open things because ripping can hurt my hands. I can’t sleep in the same bed with my husband because his mattress causes me pain, and my mattress causes him pain. The last almost 20 years of my life has been making increasingly detailed accommodations so I can live and work independently, and it’s frustrating to know that it might not have had to be this way.

According to the people who have been installed in our government, I am either lazy, have somehow done this to myself through poor living, or my current favorite not doing my patriotic duty by just being healthy. No tips or tricks on how to get healthy or a chronic illness, just magically supposed to be healthy.

About 16 years ago, for no reason that any of us could figure out, I lost all the reflexes in my arms. My doctor tapped on me with a little hammer until it was physically painful and got no response. Muscle weakness, nerve pain, fatigue, and Trevors came after that, and we did various tests, none of which helped get us any closer to figuring out what was wrong. After about a year I improved, my reflexes came back, but I still had the weakness and tremors.

Since then, it has been a never ending battle against fatigue, balance issues, pain, vertigo, numbness and tingling, inflammatory responses that cause sores in my mouth and ultimately problems with bladder function. I cannot get out of the bathtub by myself. I invested in a bidet because I can’t always turn my body properly to do basic hygiene. Sometimes in my car when nobody can hear me, I’ll just scream as loud as I can.

I’ve been told it’s because I’m fat. I need to lose weight. I’ve been told it’s mental health issues related to my bipolar disorder and I need therapy. At least one doctor has suggested physical therapy, which would be great if I could afford it. It wasn’t until one Dr. finally listened to me and suggested that I might have what my mom did which was fibromyalgia. We did testing, and he sent me to the neurologist, who confirmed that she also thought that I had fibromyalgia simply because we had excluded other possibilities. A few months later after my symptoms had worsened she recommended we test me for MS.

To confirm or rule it out, we needed to do a series of MRIs. In spite of having insurance that would’ve cost me $1600 because I had not yet made my deductible. Like most Americans I don’t have that money just laying around and diagnostic places generally do not do payment plans so we continued to treat me for fibromyalgia. A couple years and several falls later, the neurologist nurse practitioner basically told me that unless we can confirm or rule out MS there’s not much more they can do for me.

MS is a progressive disease with no cure. There are several stages to it and if it is indeed what’s going on with me, I am at the third stage. It has been clinically proven that permanent neurological damage can happen from the first episode. There is no reversing it. It can go into remission temporarily with treatment but will never be completely gone.

If I had been able to afford testing, if my top tier health plan hadn’t had a $3500 deductible,if my original pain hadn’t been treated as “drug-seeking behavior,” if it hadn’t taken over a decade for a doctor to just LISTEN to me I might have been able to slow the progression.

yesterday I fell again. I had just recovered from a fall last month. I fell on the knee that I was never able to have repaired. There’s no point in going to the doctor for it, they’ll want to give me pain medicine I don’t want andI can’t take if I want to work, and they’ll tell me what I already know: it’s damaged, I’ve done more damage to it, and I should probably have surgery. I’d rather save that $50 to put towards MRIs

The money I receive will go toward the cost of testing for MS. Four different sets of MRIs to start, along with a spinal tap, which will be probably around $16-$1800. The rest is for additional testing and medication. I’m going to do my very best to find the cheapest options. My first expense is going to be $160 to see my neurologist next week so she can reevaluate me and get the orders. I’m tired, friends.

I know I’m asking for a lot, and I know that money is tight for everyone so please don’t feel obligated to help if it will make things difficult for you! Just reading this and understanding that this is not something I wanted to happen or did to myself, and that my story is not unique, and there are thousands of people in this country in pain, getting sicker, and dying because the greed of corporations and politicians ensure that only the “right“ people have access to quality medical care.

Thank you for listening. Here are some cats.