#med complex

Small warnings:

Not to give away any information to come in later stories, but we are dealing with a ‘wasting’ disease/FTT, meaning the body is failing and thus breaking down (musculature, etc.) to keep running all the basic functions.

Incontrovertible events related to this condition include weight loss, inability to orally eat/keep food down, vomiting, diarrhea (but we’re not highlighting that—I DO NOT write scat), diet changes, surgical procedures, stays in hospital, insertion of various feeding and drainage tubes in various places by various methods, being unable to work, being unable to stay awake, being on Rx drugs (some that are also street drugs) that really fuck you up, needing a caretaker (who can be anyone from a spouse to a home health nurse to some guy who picked you up off the floor when you slipped after dropping your coffee), needing mobility equipment, experiencing memory loss, experiencing medical trauma, experiencing abuse/negligence by hospital/home care staff, facing things like food instability/legitimate possibility of starvation when the insurance-contracted supply company doesn’t deliver the shipment of your tube-feed (it’s like little bottles or juice boxes of milky substance that’s then poured into a device that gets the feed to the person’s digestive system)—They use services like UPS, and if it snows or something, and there’s a shipping delay…. Yeah, you don’t get nutrition.

So, anyway, I know this ‘verse is very popular. As always, I invite you to ask any and all questions, reality or fiction-based, you might have about gastroparesis, chronic illness of the digestive system, tube feeding, etc. As you read this series, be aware of the medical reality of conditions such as Steve’s, and know that I’m neither torturing him for effect nor glossing things over to protect you from bad shit. Read at your own risk, for while I do my best to tag or put a warning at the top when I mention something triggering (like weight loss, etc.), I slip up sometimes. A lot of this is from personal experience, and I’m trusting you guys to take all the info if not seriously, then at least, like, neutrally? I mean, none of this is a joke. I’m not trying to glorify myself or anyone as a “fighter” or complain that “I’ve been through so much..”. Really. I’m just talking. Making some new adventures for the boys. I hope you guys enjoy. (And please, send me feedback and prompts if you have them. I’ll chat back and see what I can work in.)

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Steve wake his phone and swivels his chair slightly so he can hold it under his desk and prevent any glare from catching eyes through his office’s glass walls. He selects the app he wants, then lets out a breath of anxiety as he watches the doom circle buffer. Steve wonders if he should give up and try the web version; the setup is equally janky, unstable, and clearly endeared to Windows 98. For the number of walk-in clinics there must be in his area of Brooklyn, at least one ought to be iPhone-friendly.

Finally the application loads, and Steve quickly punches the ‘book an appointment’ option before the thing has a chance to crash. He knows that being overeager will, in fact, push the app to crash anyway, but a sense of urgency fills him. He knows exactly how to get to the form he wants. He knows it’s meant to be quick to fill out and submit, and that return calls are due within 24 hours (according to the page’s claims, anyway). And this isn’t the first time he’s tried.

Steve’s been on the point of taking himself to the doctor for… a week now, maybe? General stomachaches have been normal for as long as he can remember, but half a dose of Pepto usually takes care of them. Now, though? Steve’s had enough striking pink vomit to convince him that his body’s revolted and developed an allergy to the stuff. On the same wavelength, he’s had enough vomit of any color to start to give him the idea that his body’s breaking up with food. Something seems very wrong about that.

But, then again, Steve hasn’t lost a significant amount of weight. Maybe 2 pounds? He’s a little more tired, but he’s still working. Still functional. So, the extent of his need to worry? He’s not sure.

Steve’s phone blinks its screen, and a web-adapted PDF appears, full of check boxes marked with red ‘mandatory’ designations. The feeling of anxiety runs through him again. Nervousness passes briefly through his stomach. Steve swallows hard to make sure nothing leaks into his esophagus. He manages to stay steady, though the residual tastes of Gatorade and blood tip his emotional load into the next level. Disgust. Panic. Yeah, today’s the day to make an appointment.

Steve carefully reads the first section of the form. Name, age, date of birth, employment… easy enough.

The next section deals with symptoms.

Check the boxes beside the symptoms you are currently experiencing.

Headache. Stomach pain. Heartburn or reflux. Back pain.

Vomiting. Diarrhea. Trouble urinating. Seizures.

Dizziness. Sleep troubles. Trouble breathing. Fever.

Muscle aches. Joint swelling. Mental health complaint. Stroke.

Heart attack. Trouble walking. Loss of consciousness. Allergy or Asthma.

Steve looks blankly at the list. The order of the symptoms listed is so random that he has to think hard to remember if any apply to him. Ok, Steve thinks. Most urgent symptoms. He doesn’t think his childhood asthma is particularly worth mentioning, even if he still keeps four inhalers in four separate places. Only what’s urgently needing attention. And fixing.

Steve clicks off everything gastric-related.

How long have you been experiencing these symptoms?

1 day. 1 week. 1 month. 1 year.

Steve stumbles again, wishing he’d kept better track. Close to a week, he thinks. But the stomachaches he’s had for years…? Could they be related? Realizing he’s overthinking to the point of scaring himself, Steve selects 1 week and moves on.

The form next prompts him to fill in his insurance information. Luckily, only the name of the insurance company and the ID number for the insured party are marked ‘mandatory,’ and Steve can easily rattle off Aetna’s regional pseudonym and his digits, which are identical to the employee ID number he uses to unlock his work computer every morning.

The form automatically scrolls to a second page, buffering briefly as it completes the task. Steve’s heart skips a beat, but he’s relieved when the document comes back, and it has just two more questions.

Do you have a preference of physician?

There’s a drop-down menu of last names, none of which Steve recognize. He scrolls to the bottom and picks ‘no preference.’ Hopefully that will help him get in sooner.

What is the urgency of your need to see a doctor?

Steve knits his brows. This is the contact form for Urgent Care, isn’t it? The helpful multi-location shared network that allows people to send out one form and reach many nearby clinics, so they have a better chance of getting in sooner? Then Steve remembers the general population of New York City. Of Brooklyn alone. Of stubborn just-out-to-college kids who probably use the service as all-encompassing healthcare. Guilty, Steve thinks, sighing and slumping his shoulders. He clicks the drop down menu and peruses the options.

Emergency (no appointment will be scheduled-dial 911 or proceed to nearest emergency room)

Urgent

Soonest non-urgent appointment

Appointment can be referred to family medicine

Steve’s automatic feeling is to put himself last, giving other people the soonest, and evidently the rarest, chances to be seen. He can be referred. That’s fine. But… the lingering taste of blood. The nausea that’s gone to live in his jawbone and lymph nodes because there’s no longer room for it in his stomach. Who’s he kidding? Why is he trying to pull the wool over his own eyes?

Steve takes a breath and selects ‘urgent.’ Then he submits the form before he can change his mind.

The app buffers again. After a moment, it settles to a brilliant white splash screen.

The epidural alone is not enough to stop the pain. So we’re running into these lovely things called side effects. Like nosebleeds. Copious vomiting.

My team is doing a great job taking care of me, trying to drain my stomach and encourage my still “sleepy” bowel to wake up and do its job.

DD has been amazing, too, spending every minute of visiting hours with me and helping with the personal stuff I wouldn’t trust a nurse to do for me.

I’m Laur. BLA, CMA

Former tech writer and data manager, fiction author, artist, philanthropist, freelance art therapist, amateur ballet dancer, and entry-level home chef. That is, when I have free time around the full time job of managing my own medical care.

Disabled, medically complex, autistic, queer. Ambulatory wheelchair user, tubie, and spoonie, with a central line and no colon.

Gifted and talented with learning difficulties. Twice exceptional. Valedictorian. Young for age. Highly distractible. Extremely Bipolar. Approach with a tall hat and long stick. Very sensitive. Wildly oblivious.

Ask me anything.

Tell me everything.

Uncensored, but absolutely no bullying. “Hate” is a bad word. Use “dislike” instead. I dislike nursery rhymes, but I

But mostly I just want to hear my own thoughts banging off the walls as they make their way into the great beyond. :)