• fantine9@lemm.ee
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    2 days ago

    My husband was diagnosed with ulcerative colitis in his early 40s. There was a medication that kept his symptoms more or less in control.

    Then he lost his job. The meds ran out and it turns out they cost thousands of dollars without his work insurance plan. This was just before Obamacare, and there was no way we could afford unsubsidized insurance for him on my salary.

    His colitis got exponentially worse, and was treated only spotadically when I could scrape together a few hundred dollars for the doctor visit, where he might be able to get enough free samples of the med or a round of steroids to reduce the gut inflammation.

    One night as we were lying in bed winding down to sleep, I heard him drop his magazine on the floor and start what I now know was agonal breathing. I called 911 and did my best with CPR, but his heart had stopped and in all likelihood he was dead before the paramedics arrived. He was 53 years old.

    I found out from his death certificate that he had severe ischemic heart disease. It was undiagnosed because he hadn’t had regular medical care for years because of the vicious circle of unmedicated symptoms/inability to work/no insurance.

    That’s my horror story. There’s also my 4+year quest to be diagnosed with MS, being told by multiple doctors that if I lost weight I wouldn’t be so fatigued I could barely move, or have vertigo, or fall down for no reason, or whatever symptom I had at the time. But hey, at least that story eventually ended with diagnosis and treatment… as long as I have my job and insurance, anyway.