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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    1. Lol, I wish I just needed a chiropractor. You’re the 1,532 person to ask me that. For some reason, people have it in their heads that chiropractors can cure everything. Sadly, they can’t. I have gone to multiple chiropractors and they haven’t been able to help me at all.

      1. That’s fine. I don’t think chiro’s work for lots of stuff, honestly. I just heard a girl talking about really bad rib pain that ended up being that subluxated ribs and apparently they fixed her up. I brought my kid to one though and I thought she was full of BS.

  1. Thanks, Darrell, for your helpful reply. I must upatde you with news of Nancy. After 2 days of (in my view, and I am her mother and also as a mother of 4 have seen a LOT of tummy bugs) average tummy bug symptoms, i began to get suspicious. Having done my research and this site was an important and helpful part of that, I called the doctor as I was convinced she had Appendicitis. In a nutshell, the doctor whizzed us off to hospital (I had packed a bag in case)in an ambulance and then Nancy underwent several hours of tests (a lot of painful prodding by strangers progressing up the food chain to the High Priest Consultant surgeon who, interestingly, made Nancy prod herself ) She was white, shut off from the world and in deep pain. As she had not eaten properly for 48 hours she was dehydrated and had a high temperature so before they would anaesthetise, they put her on a UV drip. She responded immediately and so BANG, the whole process started. I should explain that my biggest fear is that they would open her up and there would be a perfectly healthy little appendix. Not so. It had perforated and her stomach was full of pus. She was washed out with 10.5 litres of water and the horrid Gentromicin beads (nasty antibiotic) that I am deeply suspicious of were put in. It turns out that being a little trojan isn’t always a good thing. As a result, she is currently on morphine and antibiotics by IV. On a positive note, she is progressing really well. No temperature, and today, less than 48 hours after the op, she ate some food (it was 2 days prior to the op when she last ate and she has a body like a whippet anyway). As I suspected, their food was rubbish. They offered cordial but I checked the bottle and it was chock full of terrible ingredients. This is a hospital! My dog would turn his nose up at the stuff they offer sick kids. People; take in your best sustenance! My pal Charlotte made her green soup (spinach, watercress, garlic, etc)and I gave her water first then organic rice milk. She had a banana this evening! (Deliberate as her potassium read as too low)Also I am trying to get her to take child’s Floradix as it is packed with goodness especially Iron. I will tackle rebuilding the liver (after the drugs) once she is out of hospital. I have no real advice to parents; inform yourselves, feed your children well, even massage their feet when they are sleeping. (I checked a reflexology chart and tried to stimulate the bowel that way as i couldn’t massage her tender tummy)We are not out of the woods yet as she is still septic but the signs are quite promising. We shall see. I look forward to tomorrow when she may make it into a chair and be wheeled out of the room to look at the fish in the tank! Your words of advice really really helped me. I send my best wishes to all parents out there reading this. Trust your instincts. Thanks, Darrell. All the best, mate. Charlie

  2. I’ve never had much faith in acupuncture, though I’ve had better results with physiotherapy for some of the nerve problems I’ve had lately (a trapped femero-genital nerve, which hurts where it sounds it would!) Medication-wise, have you tried gabapentin and/or a methylprednisolone nerve block?

    Congratulations on making it through the two years. Yes, it’s tough, but you’ve been doing an impressive job coping with it all: it hasn’t beaten you yet!

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