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Can't Talk | September 22, 2018

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What The Fuck Now?

What The Fuck Now?
Amelia
  • On July 12, 2018
  • http://ameliajune.net

I’m turning 40 this week.

When I turned 30, I had a near-fatal blood clot in my leg that traveled to my lungs. It is sheer luck that I didn’t just die back then.

The last ten years have been an uphill battle. I had a lot of physical damage from the clot—my leg is half again as big as the other leg and misshapen. It hurts often, though not like it did back in the first year. It likes to ache in any kind of weather, and both my feet and ankles will swell if I stand or walk or sit too much. I have to wear compression socks on airplanes, and flying can be painful due to pressure. I use a wheelchair to go very long distances, like visiting Disneyland, and I don’t go places I’ll have to walk a lot and have no option for assistance. My husband and I keep eyeballing scooters or wheelchairs to buy, but neither of us have been willing to do that yet. I can’t take hormonal birth control or hormones of any kind now, as they might up my risk of a second clot.

I also have horrific PTSD from that clot (and from a lifelong tendency toward anxiety anyway). I spent years battling symptoms both mental and somatic (I had scalp acne, brought on totally by stress and fear, for example). I had nightmares and didn’t sleep many nights. We moved a TV into the bedroom so that if I wake up in the night I can get distracted instead of focusing on my fears of death. I can’t say enough about how PTSD was limiting, distracting, and miserable. I have fought it, through counseling and medication, and I felt better. I don’t wake up as much anymore. I got an eating disorder, brought on by that same old terror of death by unforeseen medical shit, under control. I managed. I grew. I used coping skills like woah. I got pretty good, honestly. I felt solid.

Most of the articles like this are triumphant. I like to read them, the happy ending to the hard work and bad luck people experience in their lives.

I’m turning 40 this week.

In December of 2017, my life felt better, finally. I didn’t wake up at night. I felt solid, like a regular person (whatever that is).

In December of 2017, I had a weird blood test. Too many platelets. Go see some doctors. MRI, CT scan, bone marrow biopsy, colonoscopies, endoscopy, about 8 million blood draws. At least a doctor a week from January through May—some 3 hours and a hotel stay away. Surgery consults. Endless, endless fat shaming that never ever gets bearable despite all my emotional work and fortitude.

Since then, I’ve been diagnosed with a metabolic disorder, a chronic pain disorder, one kind of cancer. None of those explain the platelets, by the way. That’s likely a second kind of cancer, but we’re still waiting for diagnosis. And waiting. And waiting.

Sorry, what the fuck now?

I’m not dying today. I mean, I’m only dying a smidge more than anyone else today. But these things will shorten my life significantly. I may never see grandchildren, assuming my kids have kids. I may never see my husband grow old. I may never live long enough to see these assholes in office get the justice we all deserve.

Worse? Also? I don’t know. Another thing—I am in pain a lot. I was before, but since I figured it was all due to the blood clot or being fat, I sort of ignored it. Let it do its thing and I did mine. Now I know it’s chronic and bound to get worse over time so. That’s fun. And I’m probably not handling that news well.

I mean. What the fuck now?

Me being me, I got some books on chronic illness. They are so bad, guys. I mean. How do we cope with the fact that our bodies gain weight when we are ill and on medications?! It’s just the worst thing! But hey, focus on the positive. At least we have our pretty faces, right? (Side note: Toni Bernhard’s “How To Be Sick” is not terrible.)

Mostly though, I’m pissed off. I mean. What the fuck now?

I know I’m no special snowflake. I was not delivered immunity from disease and death when I was born or anything. I also know I’m actually pretty lucky. Friends, I have health insurance, and it’s only failed us once so far. I have a car, and I can stay in hotels. They found that other cancer, colon cancer which is devastating, totally on accident and got it out (probably) really early. I am also enjoying the looks on doctors’ faces because they keep telling me, “We’re going to check, but it’s probably fine,” and then it isn’t; over and over, it isn’t fine. And they are fucking confused and to be honest it’s nice to see those smug assholes confused once in a while.

(Side note again: Rheumatologists are assholes. What the fuck?)

I’m sure I will access all that gratitude at some point. Right now, I’m fucking pissed off. I beat the clot back with a stick and sheer force of will. I got better. I wore myself out doing it, but I did it. I was better; I was healed from my trials and ready to move into a life that wasn’t centered around illness.

What the actual fuck now?

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