Month: November 2018

The World on a String

Prior to chronic illness – my old norm!

I suppose we all reach the point of questioning our qualities of life; more specifically, when the health mountain we climb continuously increases.

Prior to chronic illness, I fell in love with the world; there were borders worth crossing, friends to meet and I wanted to capture as many sights, sounds, smells and memories of foreign lands and concepts as possible. I traveled the world, with a good job and complete self-reliance to fill my own bank account. I envisioned growing old, with those memories, a pooch or two and a tattered tartan blanket wrapped around my bony knees, as my friends in the The Black Watch Pipe Band performed on the Esplanade on a cool, August night, back when I had the world on a string.

Reading previous posts, you know I’ve struggled living in the moment, it was a foreign concept until recently.  You have read how my wise parents taught us to be independent and financially savvy, of which I am neither, now, due to Crohns, Colitis, perianal disease and arthritis. My life is a foreign concept!

As of now, this viewpoint has altered; this world has little to offer me. Nothing appeals, perhaps because I know it is all temporary and that I cannot take anything but my rich memories with me. Perhaps my body is tired of incessant fighting to regain my health.

These last few months, my symptoms super sized. A change in anti-MAP therapy is one part, the other half is that traditional medical community has but one biologic left to offer, I’ve failed all others.

The med change caused stomach acid increase; with silent reflux, I had no idea damage was occurring. One day, soft food became lodged in my esophagus for 4 hours, which happened multiple times over the following days. Having an idea what was happening, I began having diluted soup only. Despite watery consistency, it still met resistance. My strong meds, like bored trapeze artists at a freak show where I was the star, lodged in my throat and burned once they burst.

GI #8 diagnosed Shatzki’s Ring, an esophageal narrowing just above the stomach, resembling bands, with a weblike flap which traps food. That explained the odd burns on my tongue, plus the day I woke with an unusually smooth tongue; my taste buds had been burned off.

Antacids helped but the GI tract went into uproar. My holistic minded friend Drew suggested apple cider vinegar, and soon after the hiccups subsided, the coughs weren’t as frequent. Food felt like sandpaper until I halved my ACV dosage, which aggravated the scalded tongue and I grasped a thread of optimism from this remedy.

Slowly, I ate a bit more than soup, but still chased most bites with water. Meds stuck if I didn’t chase them with a drenched cracker, vitamins sat unused, too large to swallow. The small ones unpleasantly rolled around in the webbing before reaching boredom and taking the plunge. The webbing had a spin cycle and I felt each delayed passage.

Eventually, things seemed better. Then the society of narcissistic perianal disease decided they needed recognition and held a fistulae membership drive, not sure if stomach acid increase caused the mayhem.

I couldn’t sit; a fistulae bruise that didn’t want to heal took over, and it belly laughed when I took a fancy to sit. My skeletal system was highly offended at my awkward stances, slants and too much time favoring the more delicate side. I hate having delicate sides.

An old ankle injury from my time as a toe ring model flared, and there was me – barely able to swallow, sit or walk. You’d have thought me gone mad had you seen me during this time of gracefulness and tender words.

My blood pressure has been dipping and I almost passed out at not a good time. Joint and muscle pain are daily vendors again and they give ample free samples.

Needless to say, those precious pounds are falling off despite increasing my caloric intake. Buying tartan suspenders would be rather nifty. My friend Pam and I are considering growing beards for the winter too. Perhaps this season of life won’t be so bad.

My plan now is to decrease the acid increasing dosage and up the dosage on the non-acid increaser. I had to read that a few times too.

Posted by kristaevans, 2 comments