Trying to figure out a way to word how these last few weeks has been seems almost impossible.
It is difficult to try to pull together a medical team when you’re in the midst of a crisis. It’s one thing when a doctor shrugs at you. It’s another when they shrug at you and you’re already doubled over in stomach cramps.
It hurts to eat EVERYTHING right now. I feel like I would be a good candidate for TPN (IV nutrients) but I can’t find a motility specialist down here to set it up. In fact, my mom and I have been hunting through disease databases and there seem to be no motility specialists in Florida, period.
I’ve rifled through every GI in town already and I’ve had a catscan with no obvious inflammation. The only other thing I can think to do on my own is to up my dosage of Desipramine—but that takes the gamble of both potentially gaining weight while potentially not improving my symptoms. Again, I don’t have a doctor here to manage this as it seems my internist has given up.
I had meetings all week with doctors and scientists. We have some irons in the fire but nothing that’s going to produce relief for me in the near future. I have to find someone who can manage my pain until I can fly out to North Carolina to see the GI specialist (who is going to cost me a whopping, out of pocket $600 an hour.) That’s what I get for being rare, I guess.
I went to see a pain management doctor today. Our conversation went something like this:
Doctor: You should get off the opiods.
Me: Great, I would love to! What should I take for the stomach pain instead?
Doctor: I don’t know. But you should get off the opiods for at least two months and then we can put you on something like lyrica for general pain.
Me: Okay…But I can’t physically digest food while not on the opiods right now. My pain level is past a ten when I eat. So what am I supposed to do for those two months about food?
Doctor: I don’t know, but you should get off the opiods.
No shit, Sherlock.
Does anyone in the room still seriously think that I don’t know that narcotics are bad news? Is it truly possible that my intelligence is so far undervalued that I would take a flying LEAP onto a bottle of oxycodone before trying every other single freaking alternative to it?
I’ve had exploratory stomach surgery for godsake. I’ve had cranial sacral therapy. I’ve had gluten free, dairy free, meat free, egg free diets. I’ve tried preventative medications. I have had a TUBE installed in my CHEST to hydrate myself in the hopes of preventing migraines and stomach cramps.
The blame always shifts back to me, like I must be doing something wrong. Like my medical decisions are just so insane that I snuck into my own body while I was sleeping and sewed my organs together with adhesions.
It’s hilarious. People get frustrated when they can’t figure it out and they want to slam their fists on the table and say, “well, it’s just you then! You don’t accept my solutions!”
I would kill to accept your solutions. I want to bask in the glow of your solutions. But if I’ve tried it and it hasn’t worked, or I haven’t tried it because logically I know it can’t work—then you’ve got to accept that this isn’t a medium level suduko. It’s my life. And I’m not going to run into the same walls again and again to satisfy your ego. Running into walls HURTS. I’m done “trying” that medication, therapy, or remedy just “one more time.”
- Still can’t stop listening to the Hamilton Soundtrack. I definitely have a problem.
- Fell down my staircase last weekend…Like actually fell, not exaggerting. Shocking, but not as painful as my stomach cramps.
- I turn 27 years old next week, so that’s terrifying.
- I might be moving to North Carolina.