When I finally fell asleep around seven AM I dreamed that I had something on my tongue.
I took my fingers and pulled out a spider from my mouth. And then another, and then another.
And that was the lucid dream that started my day on Tuesday morning.
To say it’s been a trying few days might be putting it mildly.
It started on Monday morning. I had a doctor’s appointment down in Hollywood. R.J and I woke up early so we could make the hour’s drive in traffic. I was seeing an endocrinologist to try and get some insight into what my liver, thyroid and blood sugar were doing while I jumped from one medication to another. No results yet.
I was tired through the appointment, and I thought maybe that was why I was having such a hard time explaining myself. It’s always hard to explain my disease to new doctors, but I was literally having a problem speaking that day. Like I couldn’t push the words out of my brain and down to my mouth.
On the ride home I fell asleep in the car (I wasn’t driving.) But R.J kept trying to wake me up, but that’s not really the way hypersomnia works. So after we got home I grabbed my laptop and went to my mom’s house with Happy to rest before my second doctor’s appointment of the day. I fell into a deep sleep at her house and when I woke up I felt worse. My mom was trying to talk to me and the TV was on and I couldn’t seem to separate both sounds at the same time. I moved past her trying to find my keys which I usually drop into my purse or on the front desk when I walk in. But I couldn’t find them.
After a frustrating twenty minutes my mom finally found them…on her bed, in her purse where I must have dropped them when I came in to say hello.
Now ten minutes late to leave I got in my car, already feeling weak and frustrated. Then I got to my doctor’s building and was met with the decision of taking the stairs of the elevator. With POTS–my body doesn’t really adapt to elevation (or movement in general) so well. When I move too quickly I get almost sea sick where the floor swims like waves, so I try to avoid elevators at all costs. But I was too tired for the stairs that day so elevator it was.
I was seeing a new neurologist in a practice I once went to about a year ago. The new neurologist was great. She immediately knew what POTS was (always a good sign) and was very patient as I struggled to talk through my brain fog.
I told her about how I hadn’t felt the same since the last round of migraines and that I was worried something was seriously wrong with my brain. I talked (and showed) her how I was struggling to find words and felt confused most of the time–how I had lost my ability to concentrate on more than one voice or noise and how my sleep had progressively gotten less restorative since my party. I also told her about my skull-cramping migraines and TMJ pain.
She admitted that she didn’t really know what was going on, but that I should have an MRI on my brain to rule out a stroke/TIA, that I was a great candidate for botox treatment. I agreed to come back to the office next week to do an allergy test with the botox to make sure I could handle it. I’m also going for an MRI tomorrow morning.
By the time the appointment was over I was beyond exhausted and I stumbled over to the receptionist to give my co-pay and make my appointments. I decided to take the stairs back down to my car and then sat there for five minutes with my head against the steering wheel. Then my phone rang. It was the receptionist saying I’d left my insurance card in the office and I’d have to come back up.
Elevator up. Elevator down.
I got back to my mom’s house and fell into another deep sleep.
We had dinner scheduled with Devorah, a family friend–and artist who painted a beautiful piece for R.J and I to celebrate our engagement. I wanted to get her a nice thank you card and some flowers and so my mom drove me to Publix to get them before we went out for dinner.
By the time we got to dinner I couldn’t talk at all. I don’t think it helped that all I’d had to eat that day was two bottles of Ensure. So we sat down to dinner and after I had some soup I started to wake up again.
My day didn’t until close to ten, when I finally got the energy to get up from the couch and upstairs to take my blood pressure which was somewhere near 80/60 and my pulse at 140. So that was probably a contributing factor to feeling like shit.
I fell into bed and was asleep immediately. And then I woke up three hours later and was UP. Like awake. WIDE AWAKE. And remained that way until about seven the next morning. I finally was able to get back to sleep for two more hours and then rushed to get to my IV appointment. It was really a bad day to drive. I was seriously overtired and my brain was just not having it anymore.
I got to the office and curled up in a ball in the recliner.
I actually started crying while getting hooked up to the IV (a little trouble finding the vein, but nothing too unusual) But it was total waterworks central. Couldn’t stop for a good half hour. By the way–it is REMARKABLY stupid and counter-productive to have a weepy, over-emotional episode of public crying while you’re trying to get hydrated.
But I have to say, as soon as I was done having my ugly Kardashian cry, I felt much better. It kind of felt like my brain finally said, “Alright. I get it. I’m not working today. And that’s okay.”
I even tolerated the radio on the drive home. It was R.J’s last day of “vacation” so he was there to help me when I came home and collapsed on the couch. In an hour I had food in my mouth and a Bear on my lap and things were much better.
Since then I’ve taken it a little easier, staying home–away from elevators and needles. I’m sorry–I thought there was going to be a greater and more upbeat point to this post–maybe something about overcoming pain or handling brain fog and confusion.
But it really just turned out to be a lot of complaining, didn’t it?
Here. Have an inspirational quote:
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