The Pathetic Diabetic (Part 2) — My Game Plan
There’s something immensely cathartic about a good, hard cry. When I was finished, I convinced myself to step back on the metaphorical field, desperate for a literal win. In time, I became my own doctor.
First Quarter: I booked an appointment with an Internist.
The Internist ran some additional blood tests. My a1c had dropped slightly, likely from the medication I was no longer taking, but a new scare had popped up: High cholesterol. He recommended I start taking a statin right away. Not being particularly keen on starting any new meds, I told him I’d rather wait to see if it went down on its own since I’d always had normal numbers before taking Invokana and one of the side effects of the drug was higher cholesterol.
He told me to book a follow up appointment in six months.
I was suffering from crippling anxiety among a hundred other things that would come and go, and I was supposed to wait another six months before I got any answers?
Fuck that.
Second Quarter: I booked an appointment with a Neurologist.
The Neurologist ran some tests that included having me wear a helmet infused with the gel they use for ultrasounds and those dots you see on motion capture suits if you’ve watched any of the behind-the-scenes footage from Avatar.
All clear.
Still, the symptoms persisted.
Third Quarter: I booked an appointment with a Hypnotherapist.
At this point, I gave zero fucks about where my salvation came from, just as long as it decided to show up.
I was hoping it would show up on a Tuesday night at the hypnotherapist’s apartment in Astoria, Queens, which is where we had to meet since the only time I had available was on the weekends and he worked out of his home then.
I knocked on the door. As it opened, I breathed deeply scanning the room for any trace of burning incense or sage. There was none. No door beads as I passed through the hallway into the living room. To my surprise, everything was completely normal, decked out more in Ikea than Bohemia. He even had a Silicon Valley-esque two-screen monitor display set up so that he could record the sessions.
Reasonably secure in my decision and desperately hoping for some reprieve, I sat on the white leather recliner reserved for the session and we began.
He started by trying to get me to relax as much as possible. The seat was a little small for my 6’3” frame, and I had to adjust a few times, but after I found a decent position, I was able to follow along. I never fully went under, but he’d told me that was normal before we began and mentioned that I’d still get all the benefits from the session.
For the most part it was straightforward. A list of positive reinforcements I could use when I was caught in the loop of negative thinking. Even without being “hypnotized” in the sense most of us think about the word, I was enjoying the process and found it comforting.
Then came the part about me imagining myself as a scientist with a lab surrounded by vials and vials of powerful potions that I was supposed to use to concoct the perfect insulin to rid myself of diabetes.
Perhaps there was a reason for this. Maybe it was another way to transcend the conscious mind and work on myself at a deeper level. But the truth is, I found it all a bit ridiculous.
The rest of the session consisted of me trying not to laugh as I pictured myself running the laboratory of Pinky and the Brain.
Fourth Quarter: I booked an appointment with an Acupuncturist.
The acupuncturist was a dream. On our first meeting, she sat me down in the office and proceeded to ask questions about my condition. We spoke for 45 minutes before the session began. She felt like an old friend.
During the session, she dutifully explained every point of acupuncture and the functions in the body it was related to. She didn’t pretend that this would cure me, only that it might give some release from the stress I’d been feeling for the past month.
I always felt better leaving her office. Even if the treatments hadn’t resulted in any tangible evidence of improvement in my diabetes, she truly seemed to care and would listen with an open mind as I lamented about my predicament.
In between sessions she would email me with tips and articles she found online. I finally felt like I had someone in my corner willing to fight this thing with me. In each of the sessions, she seemed as puzzled as me when I’d reflect that, although I was feeling less anxious, my condition had yet to improve.
Unfortunately, a few weeks in, the company I work for switched health insurance providers and acupuncture was no longer covered.
Terrified of how much money I was spending on experimental treatments, I decided to take a break from the sages, shamans, and specialists I was seeing.
Without something to distract me, all the nasty symptoms reemerged.
High blood sugars. Edema. Dizziness. Brain fog. Vertigo.
I couldn’t even sit through a whole movie anymore. My favorite past time became a test of endurance. Every other minute I’d think of something new to look up and when I wasn’t researching, I was constantly checking my body.
How fast is my heartbeat? Are my wrists swollen from holding onto too much fluid? What’s my blood sugar? And why the fuck is Leonardo DiCaprio sleeping inside of a horse carcass?
Midway through New York’s frigid winter, the weather turned just enough to warrant a stroll through Central Park over to my favorite theater on the Upper West Side to see The Hateful Eight. If any one could take my mind off of diabetes for a couple hours, it was Tarantino. Since I was a few minutes early, I decided to stop by Starbucks for a tea.
As I stood in line for the bathroom, my field of vision narrowed and the room began to spin like the hallway fight in Inception. Fearing I might lose consciousness, I reached for the wall, finding it just as the room turned upside down. I held myself up and struggled to orient myself.
I feared my blood sugar might be dangerously low, but I checked and it was actually a little high. I decided I might be suffering from low sodium due to my low carbohydrate diet so I walked to the milk station, found what appeared to be salt, shook some in my hand and threw it in my mouth.
It was sugar.
I spit it out and grabbed a napkin to wipe the excess from my tongue.
Caffeinated patrons started to notice my erratic behavior. I waved off the concerned crowd with an okay sign and a smile. But things were far from okay. My brain struggled to form a coherent thought. Terrified I wouldn’t be to navigate the NYC subway system back to Queens from the west side of Manhattan, I decided to cab it home.
I did my best to hold myself together in the backseat of the cab, but knew I was on the verge of falling apart.
As I walked through the door of my apartment and sat down on my bed, all the ways in which I was breaking finally turned to broken.
And the rainstorm began.
There’s something immensely cathartic about a good, hard cry. When I was finished, I convinced myself to step back on the metaphorical field, desperate for a literal win.
Overtime I Become my own doctor.
It had been three years since I was diagnosed with diabetes. In that time I’d accumulated enough knowledge to have an MD tacked on to the end of my name.
I could tell you that orthostatic hypotension is a form of low blood pressure that occurs upon standing. That HDL is the “good” form of cholesterol and LDL is “bad” and the ratio between the two is more important than whether or not your overall number is high. That an a1c of 7.0 translated roughly to an average glucose reading of 154 and was considered “good control” for diabetics, but that damage to your internal organs tended to start at glucose levels over 140. And that Creatinine helps determine normal kidney function while Tatooine is a desert planet in Star Wars.
One additional thing I discovered while cramming for my appointment was that there is a small percentage of diabetics who are initially diagnosed as Type 2’s that are actually Type 1’s, with a slow-progressing form of the disease called LADA (latent autoimmune diabetes in adults). LADA often presents itself like Type 2 initially but eventually needs to be treated with insulin instead of diet and exercise.
Could this be what I had?
To confirm whether or not this was the case, a doctor needed to order a C-peptide test to determine how much insulin my body was producing. In the three years since I’d been diagnosed, I’d had roughly six blood tests and twice that many visits to the doctor. All three endocrinologists I’d seen knew of my exercise routine as well as my carb-restricted eating plan. I was at a healthy weight and they all seemed at a loss for why I wasn’t able to better control the disease.
Surely one of them would have ordered this test by now.
I looked back through all the health portals that housed my past blood test results, scanning them for any mention of C-peptide.
Nothing.
Was it possible each of these doctors had overlooked this possibility?
I thought about that question for a long time. At first I was angry. These fuckers are letting me die! All they care about is how many people they can see in a day. They’re not interested in patient care, just maximizing profits.
“Try this prescription and schedule a follow up in three months,” was the script they’d been given and they’d acted it out so many times Meryl Streep couldn’t give a better performance. They no longer dealt with an individual, but with the collective biases they’d built up after years of being trapped in the system.
But then I went a little deeper…
How many times had their patients swore up and down they were the pillars of health only to grab a six pack and cigarettes before hitting the MacDonald’s drive-through on their way home to do their preferred method of exercise — quarter-pound curls while watching Cake Boss?
When 10 out of 10 patients are telling you they’re following all your suggestions and only a couple are getting better, I guess it’s safer for them just to assume the others are lying and prescribe more medication to deal with the symptoms. If you assume the worst in people, on occasion you’re pleasantly surprised. But to always assume the best can be deadly when you’re in the medical profession.
The last thing I wanted to be was a diabetes expert. My dream was to write and all this worrying about my real life was stealing my creative energy away from making up stories. But I couldn’t be mad at the doctors. Sure, the system was fucked and made it difficult to get individualized care, but the people who worked in the system were just like me, dealt a shitty hand and praying that the river card would turn their luck around — anything to give them a reason to stay in the game.
In a last-ditch effort to figure out what was wrong, I booked an appointment with a new endocrinologist, finally prepared to take control of my disease.
When I arrived, I peppered him with a laundry list of questions. Chief among these was, “Can I get a C-peptide test?” He seemed pleasantly surprised and agreed that a C-peptide test was a good idea given the issues I was having.
Once my questions were answered, the nurse came in. She proceeded to draw enough blood to feed a village of vampires, but I didn’t mind. Leaving the office that day I felt like a weight had been lifted from my shoulders.
A week later I returned to the doctor’s office. The results confirmed that I was, in fact, Type 1. My new endo prescribed me long-acting insulin to treat the disease.
I had every right to be enraged at the system and how it had failed me. For three years I’d killed myself trying to perfect a diet and exercise routine that would allow me to manage my condition, only to realize I’d received an incorrect diagnosis and all that striving was destined to fail from the beginning.
I probably should have been depressed knowing that Type 1 Diabetes is more difficult to control and leads to increased complications in the long run.
But the truth is, all I felt was relief. The hamster wheel had stopped turning for a few moments and I could finally rest.
And now that I was getting the treatment to keep me alive, I could finally get back to living my life.
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