My last visit to emergency was three months ago this day. I gasped for air while my entire body went numb. For the first time, the doctor said there was nothing he could do. It was hopeless, hearing those words from the head of Intensive Care, but going home was at least something I could look forward to. However, when the results of my blood work came through, my potassium levels were dangerously low…
Rewind to three years ago, no, four, when being diagnosed with heart failure. I was admitted to ICU and immediately put on cardiovascular medications. Initially, they worked great, at least for the first few years. Function shot through the roof in 10% increments and it came to a point where I was only 10% away from being like an average healthy person.
Unfortunately, it was back in October of 2012 when my body started going out of whack, especially in the number two department. I couldn’t figure out what was happening as I changed nothing in my diet, but for one reason or another, found myself using the bathroom twice every day, sometimes more. It was incredibly frustrating and exhausting, both for my parents and me, but I never expected things would become much, much worse. At the time, numbness and pain in my buttocks and legs developed, and I had to be assessed for a new wheelchair.
By the time 2013 came into the picture, everything was falling apart. I frequently aspirated on food and was in the hospital on four occasions, nearly dying of suffocation from all the choking. I thought it was the end when I finally encountered a female paramedic. It didn’t help that the agony began getting to me.
Ten years ago, my stoma was enlarged significantly because of a mishap by a male nurse (I like women better). As a result, there was a great deal of air leakage that rendered me breathless. To solve this, a cuff was attached to my trach tube to block it, basically a balloon that inflates with water. I couldn’t talk with it, so another cuff was added at the top that went above the vocal chords.
Every cuff has a water line that connects to the outside of the tube, which allows for inflating and deflating via a syringe. Yet the water line from the top cuff has an inlet that protrudes on the right side of the tube and hits the stoma. It somehow irritates a nerve, hurting worse than a son of a bitch. The bottom cuff already causes a great deal of soreness in my back and chest, but this one feels like the constant pouring of alcohol on an open wound.
For years, I’ve had tubes made with the inlet smaller and smoother. Some of them were perfect, and some caused immense pain. During that period, the manufacturing policies changed and I could no longer work with a particular engineer, so my customized versions weren’t precise anymore. When I was down to my last good one and had to use the final backup, a part of me died that evening. It was utter torture.
The thing is, I was almost always positive with a very optimistic outlook, but the excessive pain gave me suicidal thoughts that consumed my mind. I desperately needed an answer and eventually turned to neuropathic painkillers, which worked, only the dosage had to be upped significantly. Sooner than later, I was taking 2100mg on a daily basis.
Coincidentally, while the increase took away a fifth of the pain, it made me terribly lethargic, worsening my bowels and aspiration issues. For months, I wanted to throw myself down a lake. I couldn’t take it, but when push came to shove, instead of refusing all fluid intake, I decided to forfeit the Gabapentin.
Going off the drug provided for many miracles, following the stomach flu I caught, in addition to withdrawal symptoms of diarrhea. I had to readjust my routine, and resulting from those changes, I was getting better. It made absolutely no sense at all, but I suddenly remembered those 10% increments and realized why I could still use the bathroom without Miralax and Benefiber. The better my heart became, the less help I needed for digestion. My original dosages transformed to overkill.
For a while, my routine reverted back to years ago because my strength had apparently returned, but little did I know that it was because the aforementioned aftereffects counteracted with the self-induced constipation. I needed electrolytes that were lacking in my system from dehydration and drank loads of orange juice. When the ulcer came about, alongside intestinal blockage, I knew I was screwed.
…three months ago today held my last visit to emergency. Since taking the potassium supplement, I’ve been trying to resume a relatively normal life with much difficulty. I lost so much weight because of starvation and can’t seem to get any of it back. I’m visibly weaker than before.
Right now, I’ve been transferred to palliative care, mainly for pain management, but I have the option of being taken off life support. I take synthesized marijuana in capsule form and am tired all the time. I’m thin as a rail and my body aches everywhere. I go twice a day, every day.
I’m no superhero, but if I were, this would be my Batman symbol:
This is the concoction that allows me to defy the impossible and speak. My skin is itchy 24/7 without much relief, while it breaks with scabs all over the place. These are the sacrifices I make to live a luxurious life with Duchenne muscular dystrophy.
I’ve stared death, straight in the eyes. I’ve had my world torn apart. I overcame, walked through, was brought to my knees, and am dealing, still. In fact, I’m no ordinary hero either. I simply endure all that this disease comes at me with because other options break my spirit.
I was getting better too quickly. I took care of myself too well. Get too good at living, spend all your life dying. When it comes to this illness, there is no “better”, only lesser evils and the hope for nothing worse. Freedom exists, solely within my lonely mind.
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