Reflecting on my 2 year ‘Pain-niversary’

It took me two years to figure out that I could paint the top of my prescription bottles with nail polish so that in the middle of the night, when all I have is the light of my phone, I could find my morphine faster.

Two freaking years.

That’s how long I’ve been sick now. That’s how long it’s been since I woke up with crazy, horrible, random rib pain on my right side that never went away.

It’s the worst kind of anniversary. There’s nothing to celebrate. It’s just a chance to look up at the sky, shake your fist, and say, “I’m still here. I haven’t given up yet. This thing has not beaten me. I will never surrender! Or, at least I won’t yet!”

I feel war-torn. I am tired, I am broken and I am clinging on to only a shred of hope.

I have so many medical bills that I pretty sure I’m going to die before I’m able to pay them all off. All the pills I take for breakfast (and lunch, and dinner) have made me gain about 50 pounds and, perhaps worse than that, they give me hemorrhoids. I barely drive anywhere beyond a four-block radius because it hurts too much. And, showering is so painful I can only manage it twice a week, max.

That’s not to say I haven’t had some victories along the way though.

So many times I have wanted to give up and just be dead already, but I’m still here. So many times I wanted to just down handfuls of pills to make the pain stop, but I didn’t. So many times I wanted to just stay down, but I got back up again.

Then there were the smaller things. Like surviving a week-long trip to Brazil, bonding with my family in a way that wasn’t possible before I moved in with them so they could help me cope with my pain, and discovering the Genie Bra, which doesn’t try to kill me like underwire bras do.

I’ve also found a new tea that gives me enough energy to counteract the overwhelming feeling of “wanting to do nothing” that comes with my medications. And, I’ve discovered the perfect dry shampoo for all those days I go without showering. Batiste is cheap, it really does get all the oil out of your roots, and it smells like a fresh shower mixed with body spray.

Don’t get me wrong though, the pain still sucks. Even when I do smell like a fresh shower mixed with body spray. It sucks so, so much. And I still want to get better — so, so much.

I’ve tried all the things people with rare illness are supposed to try when they get sick in America though, and nothing seems to work. I’ve been to a chiropractor, an acupuncturist, and even the Mayo Clinic. But the chiropractor was a quack, the acupuncturist was a swindler, and the Mayo Clinic just wanted me to pay $35,000 for a pay clinic that my insurance refused to cover.

I’m not exactly sure where that leaves me.

I Google things about rib pain like most people Google sports scores and the weather.

Sometimes I find things that sound legitimate, like a neurectomy, and sometimes I find stories about crazy people giving themselves coffee enemas and going off all their meds while they spiral further and further into horrific pain hoping it will be the magic formula they’ve been searching for.

But, in all those hours of Googling, I have yet to find a single person who has had intercostal neuralgia (what many doctors think I have) and gotten better.

And from there, it’s hard not to think that I’ll probably be in pain for the rest of my life. What does that look like? How will I survive that? How many more pain-niversaries will I have to shake my fist at the sky babbling on about how I haven’t given up yet?

A part of me hopes the answer is zero. I hope I never have another pain-niversary again. I hope that by this time next year, I’m completely cured.

But a wiser, more jaded part of me knows it’s probably a way higher number than I could have ever imagined. It’s the same wise, jaded part of me that also knows that I’ve got this.

I mean, I’ve made it this far haven’t I?

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