A Shot at Hope

I sat there jiggling my leg up and down as I looked around at the first building I had been inside in a year. Literally a year, I realized. A year ago to this day, I had an important meeting that was canceled because their offices were shut down due to COVID-19. March 16. The day my life ended.

Not really, a bit of an author’s exaggeration, I guess you could call it. My life really ended, or at least the life I once knew back in 2017 when I got sick. I got a cold, and I never really recovered. My ability to simply exist became a chore. I would walk as if walking through molasses, as if I was walking in one of those cool slow-motion montages only it wasn’t actually cool.

No, my life ended back then. The life I knew. I was presenting at 15 academic conferences every year. I loved it, traveling all over the country. It was wonderful. It made me full of hope every time I spoke to humans. Because maybe, just maybe, one person would hear and treat disabled people better. Create classrooms that are designed for abled and disabled people alike.

As my energy waned, as I started developing new symptoms, more and more things were taken away from me. I barely passed my classes that semester. I was thinking I wanted to keep going, but then my whole apartment went in a flood from my neighbor upstairs. I started having allergies and sneezing. I couldn’t stay where I had lived for that year. So, I moved home to live with my parents who were completely encouraging and accepting.

But what 27 year old wants to live with their parents when they used to be writing and publishing things, presenting at conferences all over the country, 1 out of 500 people to be accepted to present at an international education conference in Scotland. I don’t even remember much about when I first came home because I was sleeping so much. Sleep, wake up to pee, sleep, wake up to eat, sleep wake up to stare at the wall, sleep.

My life and body kept deteriorating and I was losing hope. Every doctor I went to would follow the same pattern. 

Appointment 1: “I will figure this out.”

Appointment 2: Doctor shrugs their shoulders, “I have no idea what it is. Maybe try this doctor.”

Doctor after doctor after doctor, a revolving door of “I have no idea.” Meanwhile, my body kept deteriorating, I developed severe agony in my spine if I got overheated. It radiated from between my shoulder blades to my shoulders to my neck to my forehead. I stopped sweating.

I went to a heart doctor because one of the doctors found something weird going on with my heart. They did an echo cardiogram and said, “Everything’s alright. You’re good to go.” 

A few months later, another doctor looked at that echo cardiogram and said, “They weren’t able to see anything. This was a useless report. We don’t know what your heart is doing.” 

So, off I went to find another heart doctor. “We’re off to see another doctor, who may finally be able to find something.” They found something alright. 

“Sam, you have heart failure.”

WTF!? The other doctors said that everything was fine. But apparently they didn’t know anything because I have heart failure.

I felt such rage, such completely impotent rage. As patients and humans, we look to our doctors to know what they are talking about or at least try to know what they are talking about. Not making up BS about “No heart failure, everything’s okay.” That’s shit that could kill me. Several years out and on medication to treat it, I can say that as of my last echocardiogram, my heart failure is relatively normal now. So, that’s good.

Then, I went to a highly prestigious medical place. One where I knew that I was going to get the best treatment because they communicate with each other. The first doctor told me I was fat and I needed to get bariatric surgery and I would feel better. The next said I was fat and needed bariatric surgery. The next said the same thing. They refused to look at my symptoms, they just looked at the fact that I was fat. 

Don’t get me wrong, I believe bariatric surgery is a viable option for many people. I know from my history that my body has a very difficult time absorbing any vitamins through pills. The way they explained it to me was that vitamin pills was the only way to get the vitamins you need because the gastric bypass would skip over a bunch of vitamin villi in the small intestines (the part of the body that absorbs vitamins from food you eat).

At that point, I was so low in testosterone that I was low even for a female, but they didn’t care about that. I had heart failure, but they didn’t care about that. I had inflammation rates through the roof (supposed to be 5, I’m 94; in case your interested, obesity increases the number slightly to about 10, instead of 5. But 94? The fatness cannot, I repeat CANNOT be the cause of that much inflammation), but they didn’t care about that. They just said, “Lose weight and have surgery (that will kill you because inflammation and vitamin malabsorption).”

Finally, I did what we can do as patients, I got a second opinion. That is our only means of agency when we have terrible doctors or doctors who aren’t right for us (because I believe some of the doctors I went to weren’t terrible, they just didn’t know what to do, so they just shrugged their shoulders). I went to an endocrinologist who didn’t bring up weight in our first appointment. Didn’t bring up weight in our second appointment. I finally asked about my weight and she told me, “Your weight would play some role, but not as big of a role as what you are experiencing.”

I wanted to find out if my brain fog and fatigue were caused by a neurological thing. I practically got laughed out of the room by the neurologist I went to. To his credit, he did order an MRI despite foo-fooing me. It didn’t show up anything. I didn’t much trust for that doctor, so I got a second opinion again. I went to a different neurologist…who ordered another MRI and found a freaking brain tumor. A microadenoma on my pituitary gland. A tiny tumor, but a freaking brain tumor. That was missed. Heart failure that was missed. Brain tumor that was missed.

Finally, finally, finally, I started getting somewhere. Around this time, I stopped sweating. Like anywhere. I had to run from one terminal of the Atlanta airport to another (I hate running) because my incoming flight had been late and no sweat. I mentioned this several times to my new neurologist, but it didn’t quite click until my second to last appointment with him. “Wait, did you say you don’t sweat?”

“Yeah.”

“I’m going to order a dysautonomia testing for you.”

A few months later, it was revealed medically that I don’t sweat. The normal sweat expectation number is 10 on the test they gave (which involves shocking a part of the body and seeing the amount of sweat that is exfoliated from your skin), I tested at 0.1. That is less than the 1st percentile. I don’t sweat. That means that I am at a much higher risk of heat related illnesses.

Then, I got the dreadful news that my new neurologist was leaving to go to Ohio. So, I lost him. I had seen several rheumatologists to try and see what is going on with the inflammation. My neurologist had said many times, “Your weight can’t explain the inflammation being that high.” 

It turns out that my endocrinologist’s husband was a rheumatologist, so she gave me a referral to see him. In the very first appointment, he said he thought he knew what it was. He did a bunch of tests. He came back with, “You tested negative for what I think you have, but there are some times where it comes out negative, but the patient does still have it.” He thinks it is Sjögren's syndrome. They did a lip biopsy because Sjögren's syndrome is an autoimmune disease that goes after the liquid secreting places like the mouth and eyes. It came back negative. But it still could be Sjögren's syndrome because it could be that the exact nodules in my lip they ripped out weren’t affected by the Sjögren's syndrome. 

Just as things were looking up, just when it looked like something good was going to happen, just when it looked like I might get a diagnoses and a treatment. COVID-19. Covid-fucking-19. Everything ground to a halt. My body continued to decay, to break apart. I chipped 6 teeth (after having only chipped one in the previous 29 years) and I found out I had erythromelalgia (feeling like extremities are on fire).

So, there I sat jiggling my leg up and down as I looked around at the first building I had been inside in a year. “Ready?” The shot nurse asked me. Was I ready to have the COVID-19 shot that would put me back on track to feeling better? To finally getting out there. To finally living life again?

My life will never go back to normal. Normal is just a setting on the dishwasher, and it is hard to actually accept that most of the time for me. But right now I have a shot at hope. Not just the vaccine, but going to back to doctors, finding out what is going on with my body, going back to the land of the living. To stop hibernating through this life.