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» Hatrack River Forum » Active Forums » Books, Films, Food and Culture » My journey into the American health care system

   
Author Topic: My journey into the American health care system
Jeni
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Iíve had many adventures since I stopped Hatracking, but one in particular has changed my life enough to be worth writing about.

About five years ago after a minor surgery I found myself back at the surgeonís office with a possible skin infection. He handed me a handful of antibiotic samples and rushed me out the door as I tried to ask him whether there was anything I needed to know about the medication. ďNo,Ē he said. ďItís a great drug."

At first everything seemed fine and I took the first two doses without problem. After the third, though, I started feeling sharp pain shooting down my spine. An hour later, every joint in my body was on fire and I couldnít stand.

I called the doctor and told him what was happening and asked if it could be related to the antibiotics. ďItís not supposed to feel good, itís supposed to make you better,Ē he said of the medication. He told me to continue taking the meds and add max doses of ibuprofen for pain.

In the five years since, if Iíve learned anything itís that not all doctors are created equal, and some are just plain incompetent. But at the time it never even occurred to me to question my doctorís instructions. I later learned that his response was negligent at best.

The pain never went away. The joints kept aching and the sharp pain turned to tingling and numbness and weakness. I had problems standing up quickly, remembering words, concentrating, and I started having tremors and migraines. The antibiotic I took had given me small fiber neuropathy, tendinitis, and autonomic dysfunction. The doctorís poor instructions had made it permanent.

It took two years, 12 doctors, and a new FDA warning before I was officially diagnosed. No doctor would accept the idea that a medication they trusted could cause so many problems for so long. I was accused by several of being crazy, drug seeking, attention seeking, and whiny. None of them did any diagnostic testing until I found a fantastic neurologist who had treated patients with the same problem, and worked to rule out other causes and give me an official diagnosis.

I thought treatment would be easy after that. I was a fool. Being a patient with chronic illness is a full time job.

My life now consists of waiting at doctorís offices, ferrying scripts about, sorting pills, and arguing with insurance companies. My employer of 16 years forced me out after I applied for intermittent FMLA, so I am not currently working. (Donít worry - I didnít take that sitting down - I took out 2 top HR managers, a district manager, and my immediate supervisor with me before being offered my job back.) I moved to the DC area to stay with a friend who does a lot to help me. (a former hatracker as well.) And I am simultaneously trying to find work that accommodates my job as a patient and looking into disability pay. (Which I never knew it can take three years to get approved for. Itís a myth that the system is easy to abuse.) I am also suing two Big Pharma companies!

Anyway, being reminded of Hatrack this week and my time here as a high school and college student made me think about how different my life is than I expected then. A handful of medication changed everything. But, at the very least I am now a professional at navigating the American health care system, and that is no easy feat.

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JanitorBlade
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Wow....that is something else, Jeni. What sort of work are you looking for? I'd like to help.
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Bob_Scopatz
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Oh no!
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PanaceaSanans
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I'm so sorry, Jeni. [Frown]

There are numerous antibiotics with possible severe side effects, which doesn't mean we cannot use them, but ...

quote:
Originally posted by Jeni:
I called the doctor and told him what was happening and asked if it could be related to the antibiotics. ďItís not supposed to feel good, itís supposed to make you better,Ē he said of the medication. He told me to continue taking the meds and add max doses of ibuprofen for pain.

I wonder how he didn't even seem to care. I would be worried out of my mind if a patient told me they experienced what you had!


quote:
Originally posted by Jeni:
It took two years, 12 doctors, and a new FDA warning before I was officially diagnosed.

Which drug was it? There are too many...


quote:
Originally posted by Jeni:
But, at the very least I am now a professional at navigating the American health care system, and that is no easy feat.

It is indeed a great feat, and something many people need help with. Maybe turn that into a job? There are "outreach service"(?) people employed in every German hospital to help patients with "ferrying scripts about, arguing with insurance companies", applying for healthcare services and even getting back into their job at part time or a slowly increasing rate of hours (2-4-6-8h/d each over a few weeks). Is there a position like that in hospitals in the US?

[I do not know what job you worked in before. I hope not to anger you by suggesting a job that might feel 'below' you. But the above is a real skill, and so many people struggle with it - doctors included.]

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Heisenberg
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I'm extremely sorry to hear about this, yet at the same time I'm not surprised.

About two years ago, my father started experiencing severe back pain. He went to the ER, to his GP, but they all just assumed that he was drug seeking and diagnosed him with back spasms.

As it turns out, he had lung cancer that had spread to his spine. It wasn't diagnosed until he woke up one morning without feeling or function in his legs. They removed the tumour, but it was too late. He never walked again, and he didn't really even get a bucket list, due to being bed ridden.

If I could get away with it, I would gleefully cut that GP's throat. He KNEW my father. He knew he wasn't on drugs. And yet he didn't order even the most basic of scans.

People place entirely too much trust in doctors. I once had a GP ask me why I was on insulin, for Christ's sake.

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ClaudiaTherese
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Jeni, I'm so sorry this happened to you. It sounds simply awful.

--
Edited add: And you and yours as well, Heisenberg.

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Jeni
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Thanks everyone.

JanitorBlade: I used to manage a large, busy retail store. It was physical work and 60 hours a week, which is the industry standard, so I won't be doing that anymore. However it included all HR functions for 300 employees, and I have hired over a thousand people, so I will probably look into something in human resources. However I have not worked in over a year so currently my plan is to find a (probably low paying) part time job to see how much I can handle. I appreciate the offer, though.

Panacea: I actually had that idea for a job too! I'm not sure how feasible it would be. The antibiotic was Avelox. There have been additional warnings put on it since this happened, and enough people have experienced the same thing that the FDA even coined a name for it: "fluoroquinolone-associated disability."

Heisenberg: Sorry to hear that... these days it's all to common, especially it seems with younger doctors, for people to be written off as drug seekers. There are really great doctors out there, too, and I have learned not to settle for anything less. My favorite story from my experience is when a rheumatologist actually brought up google and typed in my symptoms right in front of me! I couldn't believe it.

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ClaudiaTherese
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I really don't like the Fluoroquinolones. Ciprofloxacin can be the only reasonable choice for certain soft tissue infections in someone with other antibiotic allergies, and it's safer than the newish one you were on, Jeni, but ugh. You only need to see it once. [Frown] So sorry that happened to you.
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Jeni
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I do wonder if that doctor would have gone with the same medication if he didn't have samples on hand. I am very anti-samples since then. If I had gotten it from a pharmacy with the warnings on paper they give you, I might have at least known his instructions to take high doses of an NSAID with it was potentially disastrous advice. I think it's ridiculous that many doctors use these for very minor infections when it's not necessary.
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