The Next Trip Down The Rabbit Hole

I just brushed my teeth for the first time since Sunday. It’s now Friday. My apologies, Dr. Hunter, my dentist. It is of no disrespect to you or even to my own body itself. Brushing my teeth is the last thing I want to think about when I’m in the middle of a cyclic vomiting syndrome (CVS) episode. Instead you’re on what feels like a constant wave of some kind. Kind of like the feeling you get when you’ve been on a boat for a bit and are standing on the shore, but you still feel like you’re waving back and forth. That’s CVS.

When I told my ten-year-old daughter, she drew this comic strip of what she visualized CVS doing to me:

This was the schedule that I was dealing with for three weeks leading up to now the second episode that I’ve had in a month (after not having one for almost two freaking years!!):

It wakes me between 5-6am.
I almost get sick, take nauseau meds.
Have to take a hot shower.
Back to bed.
Wake groggy around 7am.
Immediately take a hot shower that gets me through until around noon.
Go home for lunch. Don’t eat. Around 1, almost always get sick.
Take nausea meds and spend lunch time in hot shower.
Back to work.
Like clockwork, around 4pm, I feel super sick.
Race home.
Nausea meds, shower, bed.

On Monday morning, when my husband found me writhing on the couch in fits of nausea after having gotten sick in the hot shower just before, he knew that I had to go to the hospital. I had not yet recovered from the previous round that had beat me up just exactly one month before. This illness has an internal clock that only it knows. I haven’t done as good a job about tracking some of the aspects of it that maybe I should. While I always worry about the changes that makes to my body, such as the 20 pounds that I’ve lost in a month, or the hairs that turn stark white from trauma in puking so much, but instead should be looking at what days of the month they fall on; how far between; what times of the day do the attacks come on; what works to stave it off; medicines I’m on at the time; delays or changes to medicines; moon patterns? I don’t know. But there’s got to be more than what I’m seeing, and I just can’t figure it out.

So normally we would wait until well into the episode to go to the hospital because that’s then what knocks it completely. Usually, if we tried to go too soon, then I would just end up there again. Jason, knowing how much we had going on this week, knew that he couldn’t have me down and be tending to me the whole time. So he took me to our local hospital, where he knew I would get the care I need, and he could keep the wheels turning in our real life. He’s a smart and wonderful man.

I remember them getting the IV hooked up so that I could get fluids started. They then started giving me medicine. There must have been some kind of sedative because the next thing I knew, I was in a dream like state having an MRI done. Lots of times these kinds of procedures and sometimes worse, surgeries even, are performed on CVS patients. They think, oh it must be a tumor in the head, or maybe it’s their gallbladder, perhaps they just need their appendix out, maybe it’s an ulcer. Truth is, it isn’t any of those things.

Then there’s the doctors who say, it’s all in her head, she needs a psychiatrist, she’s making it up and I can’t see her until she’s seen someone else. I then go to the psychiatrist, because that’s the hoop I’m given to try and get the help I need, and the psychiatrist tells me, “You’re the most self aware person that I’ve met in a long time. It’s quite refreshing actually. I don’t think we need to continue these sessions any longer.” Then I asked him if he needed to get anything off his chest, just to be polite.

Anyway, the MRI didn’t hurt but it didn’t change anything either, just another dollar or two on the hospital bill at the end of the day. They kept me on fluids and gave me anything I asked for, including moving me to another room that had a shower and brought me a shower chair that I could sit for hours in if I wanted. Even the sweet hospital CEO brought me a little gift and hand written card. Then a respected doctor in our community came in to say that he’d taken the time to look into my disease and had a conversation with my specialist at KU. He specializes in migraines, which my disease is also known as abdominal (stomach) migraines. Knowing that I didn’t have a primary care physician here locally, and had just been seeing my specialist in KU, he suggested that I switch to his practice and I agreed.

So after thinking that I would be seeing my specialist at KU Med, I now have a local specialist right here in Excelsior Springs. He’s having me continue my mirtazapine and zofran, but adding metoclopram (reglan) and nortriptylin. He’s also switching my birth control, which was an estrogen, to an IUD, progestogen. I literally pinned a chart next to the side of my bed so I could make sure I was going to be taking everything correct. In fact, we need one of those pill divider boxes that old folks use to set next to our bed and look pretty so we can keep everything organized. This is the raddest one that I could find on Amazon, but it’s only for one day. We have a local plastics maker that I might have to prototype a design that is cool and mad sell to all the millenials dealing with chronic illnesses and such.

Anyway, if you want to sleep at night while taking these medicines do NOT, I repeat, do NOT read any of the side effects that could come along with the amazing help it brings you. Because I can assure you…that I did…Not….So it’s probably best that my medicine makes me sleep because there is so much to look forward to if I had any adverse reactions, y’all.

So now I hit restart and try all over again. A new round of medicines, new doctor, and a new me. Wish me luck.

2 thoughts on “The Next Trip Down The Rabbit Hole”

  1. I have an impressive alarm list on my phone to keep track of my med schedule. I feel you and your spreadsheet. 🙂

    Boo on 2 episodes in 1 month! Yay for an in town specialist! I feel good about my half hour drive to mine. I have to say, I’m a little jealous. 😀

    1. I’m sorry that you have this, Sab. I’ve been traveling over an hour each way for the last five years to see my specialist. I’m so grateful to have a local doctor I can go to now! Hoping you find something that will work for you, too.

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