Sunday, June 2, 2013

What Is Hard Work?

I remain astounded how many people check into the hospital expecting to be on holiday. For my friends who have also been on wards for mental health, eating disorders, etc it is implied that you will be required to face fears by sharing them, getting feedback, and having the chance to be supportive to fellow soldiers in this trek down Recovery Road.

And it is no different on medical wards, the the surprise of some. When admitted to the hospital it is because something is very wrong and the goal is to correct the problem, with a follow-up as soon as possible with your primary doctor. Unless you are fortunate enough as I am, with your primary care physician being your attending and NOT having to be admitted under the hospitalist, what the outcomes and recommendations are could get lost in translation. Any goals could be swept under the rug. Any concerns can be avoided. You could come through the ER and up to the floor, and even after the hospitalist consults the primary, the hospitalist can do anything they please; which can be harmful in more ways than one.

A big one, and this has happened to ME, in fact, this issue has JUST BEEN RESOLVED -- narcotic overuse. I use a fentanyl patch, and since I build tolerance quickly to medications, post surgery was prescribed Dilaudid. Basically, as much Dilaudid as I wanted. Normally once my resistance has built up, the med can be discontinued cold turkey. This includes benzos like Valium and barbiturates like phenobarbitol. Even oxycodone.

But not Dilaudid.

Trying to come down off as much as 8-12mg every 4 hours was pretty much impossible. The Dilaudid was prescribed by the surgeon and kept ramping the dose up due to a secondary diagnosis which causes me to acclimate to medications in as little as a few days. Narcotics have a very short half-life. After two hours I was in wracking pain once more. Waiting six hours or cutting the dose myself proved torturous.

It took a doctor being kind by appearing kind of mean. No Dilaudid push. Switch to morphine, which is not nearly as strong. I was in delirium from the fever (104-105· temps...risking brain damage), so I really did not notice except for excruciating pain in my joints when coming to. As of yesterday that was discontinued. And I am uncomfortable. But not in agony and I know that once my body calms down, I will be 100% fine.

This as well as grueling PT sessions (attempting weight bearing on my feet, which I have trouble feeling) shortly after Cubicin was started to treat the staph growing on my Hickman and the bactremia (sepsis, basically). The vertigo was awful and my joints continue to ache deeply. Orthostatic intolerance complicated this as well. And of course, food trial number ten. And when I am discharged tomorrow, I am to honor my food allergies. There is quite the list, so cooking will be essential (as in, my affinity for muffins. Pre baked aren't usually free of all of my allergies and I cringe to pay $7 for four to six muffins). I am nowhere near making meals and will be very happy if I do eventually get to the point where it is  possible to be 100% not dependent on my J tube. The G will be here to stay regardless for venting. Which alleviates pressure, as preparing a dish free of multiple allergies going to be a really big adjustment.

The point I want to get across is that to take advantage of every service, therapy, and medical treatment that makes sense and not harmful to you. You know your self or your loved ones best of course...but why not branch out and take a chance? Maybe a few chances going as slowly as possible to make sure those goals are attainable. Work as hard as you can, as reaching the highest level of wellness possible is hard work. Always remember you may refuse any treatment, but be mindful of potential outcomes of that decision. Don't blame a doctor or hospital for choices made on your part.

One last thing: those who honestly believe a check into hospital is milking public money to pay for a mini vacation...re-read my post.

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