Friday morning I woke up to an extra large coffee. I was dreading it, just like I’d been dreading every cup of coffee throughout the week. Unfortunately, gastroparesis sometimes doesn’t give me the option of whether or not I’d like to suffer the consequences of caffeine. Sometimes it’s just part of waking up a paralyzed GI tract.
But I had already had migraines this week, so knowing I was staring down another cup was met with dejectedness.
I was on deadline for my book. We were at one of our busiest points of the year at work and I had hours of transcribing interviews ahead of me. Lastly, I had a phone meeting that I really wanted to be on the ball for.
Oh, and then there was that thing about having checked the calendar last night and realizing with no small amount of panic that I was a week late on taking my birth control shot.
I rushed as quickly as I could through my work and meetings, all the while feeling the slow pounding in my head build. I rushed over to Target to pick up my shot, some Gatorade, trigger food, and other medications.
Then I got back home, immediately asked R.J to give me the shot and took a heaping dose of Percocet.
And then everything just went to shit.
I had clearly gotten to my medication way too late. My head started doing all sorts of weird twists and tumbles. If I moved wrong or breathed wrong (neither of which I could seem to do right at that moment) tiny bombs felt like they were going off behind my eyes.
I told R.J I was going upstairs to take a shot of promethezine (nausea medication) and try to put myself to sleep. I’ve developed a really smart technique of taking this medication. When you take it IV it can give you one of those rushes of fatigue where you feel super dizzy. So I clear my line, attach the syringe to my tubing and then get into bed with a syringe of saline and a syringe of heparin in my hand and a tube cap. Then I get comfortable, inject, and quickly tie off my line with the saline and a heparin and cap it before I fall asleep. (Hence the bunch of empty syringes on my nightstand that would look awfully suspicious if you didn’t know me.)
Only I didn’t fall asleep this time.
I just experienced another explosion of pain behind my eyes. I broke out into a sweat and sat up in bed positively shivering in pain and called for R.J to come upstairs. He quickly grabbed a syringe of Torradol for me to inject but I was shaking so badly he had to do it himself. Then he brought me some food, but I had to sit there and pull an eye mask over my eyes until the pain went away enough to move. He sat in bed with me and waited until it started to ebb. It felt like that took days to happen, but finally it did. I blindly (literally, with my mask still on) ate and then leaned back and immediately fell asleep.
I don’t remember a migraine ever hurting so bad. I’m only one week now from completely titrating off of the depacote. I’ve gone from 1000 mg a day to 125mg a day. And the second I’m done with that—I start detoxing off of the desipramene. I’ll be going from 75mg to 62.5mg to 50mg to 37.5mg to 25mg to 12.5mg to 0. I’ll do this over the span of 6 weeks.
And I’m aware of what I can expect to experience during this process: more migraines, more painful migraines, more food intolerances—but probably still more weight gain, more stomach pain in general, joint pain, temperature disregulation, trouble sleeping…
I’m exhausted. This is easily one of the most physically enduring things I’ve ever done in my life. Most days it feels like I stubbed my entire body against the corner of the coffee table.
My weekend was mostly one giant napping marathon that concluded with a family dinner that I desperately needed for some social interaction. Unfortunately right as we were about to sit down—R.J’s coworkers called him about an emergency at the lab. So he had to leave. It was a bummer because he’s been working nightshifts which means I hardly see him (as he sleeps till noon and I generally wake up at 9:00AM or so and get started on my work/errands before the fatigue really hits.) He wakes up. I need to take a nap. He leaves for work. I wake up from my nap.
Two ships passing in the night. We’re very much ready for him to switch back to day shift, but we don’t know when that will be and it’s getting to be really stressful for both of us.
Then Monday morning I woke up still feeling out of balance from the migraines. I called my pain management doctor and he said I could come in right away. He gave me another four nerve blocks in my scalp and on my shoulders. I didn’t know how much good they would do seeing as they didn’t seem to help much last time. But what else WAS there to do?
I went home, busted through some work, and then when the words stopped making sense I went upstairs and crawled back into bed. When I woke up…I had completely sweat through my clothes. (I keep my house at like 65 degrees, so this is slightly unusual.) I showered off and changed but then found myself getting all weirdly shaky and shivery. I was also very much in pain all over. I took a shot of Toradol and then laid back down in bed. I was mulling over what to do. I felt awful. I couldn’t shake this migraine. I was suddenly feeling sick-sick, like that kind of air brain, over-exhausted sick. Not too different from what I remember my port infection feeling like.
After much internal debate I called my pain doctor—whose office just closed. Then I called my concierge doctor. It took an hour, but he finally called me back as R.J and I were on our way to the emergency room. The final straw as to whether or not we should go had been me discovering I’d broken out in a rash across my neck and chest—another not-me symptom.
The ER was packed that night. We waited well over an hour to get called back, and then another solid half-hour to see the doctor and nurse. I knew the doctor from a few weeks ago when I’d come short of breath. I told him about the port and how gross I was feeling and my concern that there still might be an infection brewing in there.
Now, I did have cultures taken already a few weeks ago when we first noticed my surgical scar looked bigger/ more inflamed than it had been. The results were negative. And if they come back negative again—that’s great. But I’d rather run the risk of looking silly and having two negative tests than accidentally miss an infection that could torpedo my life the way the last one did. I will side-eye every shiver my body throws at me from now on. I missed my sister-in-laws wedding for that infection. I almost missed my sister’s wedding MONTHS later for that infection. No thank you.
The doctor took some more blood cultures (we won’t get results for another 48-72 hours—and that’s only if the hospital has taken them correctly—something they didn’t do last time.) And they also gave me my migraine cocktail! I honestly thought after my last concierge doctor basically called and told an ER doc there that they shouldn’t give me an narcotic medications that I would NEVER be treated there again. But at least some of these doctors have a brain.
Unfortunately, we did find out some bad news. They gave me a mix of Dillauded and Phenergan. I know I’m not allergic to Phenergen. I’ve been taking it IV all week for these stupid migraines. But I was laying on my side when the nurse came in and he managed to see that my entire back was covered in hives. I had no idea because Dillauded makes me itch like crazy (it does this to a lot of people.) I wouldn’t even think to check for hives. What a crapshoot.
It took two doses of Benadryl IV to get them to calm down. The Dillauded had also made my legs cramp up and spasm. It was still a good trade-off in my opinion. I’ll take muscle pain over brain pain any day of the week.
Half a bag of fluid later I got my release papers and we headed home.
Today I woke up and called both my pain doctor and concierge doctor. Concierge doctor was worried to hear about the Dillauded reaction and brought up the idea of maybe going back up on my Depacote dose.
Not on your life, baby. I’ve just been through hell and back getting off this med. We’re ending this Saturday. I reminded him that this was expected. We knew there was going to be complications. We knew there was going to be pain management problems. But we can not go backwards. We just have to make me as comfortable as possible and keep going.
He came around, but he still wants me to get checked out by the neurologist and the high-risk OBGYN to see what kind of alternatives there might be for me as far switching to a pregnancy-safe migraine med. Which I’m pretty sure does not exist. (At least not one that I’m not allergic to.) But he’s right, I need to go back to the OB and really see where we are. I also agreed to go to the new neurologist to get his thoughts, but to be frank the thought of going to see another neuro churns my stomach. After the last neuro laughed in my face when I told him I wanted to get pregnant. (Who does that?) I don’t feel like having anyone else join my team who has negative energy about this. I’m very much settled on my goal here and I just need everyone to stick to the plan and get me through this.
Anyway, that double dose of Percocet my pain doctor told me to take is kicking in so I’m going to find a nice couch to pass out on. Peace.
PS: My alternative husband released an album this week to make me feel better. Can’t get this out of my head: