Trigger Warning: Emetophobia (words, not images)
Photo found on Unsplash. [View from the passenger’s side of a car looking out onto the highway.]
Y’all, I don’t even know where to begin. I had two doctor appointments this week. One was a regular checkup with my primary doctor to get some more Zofran and a refill on my sleep medication. The other was my first appointment with the new POTS specialist. Fasten your seat belts, it’s going to be a bumpy night.
Tuesday: Primary Doctor
Before I even got in the shower (I was going to say the night before, but it was more like 5 A.M.), I was exhausted, lightheaded, and definitely developing a migraine. However, I promised I wasn’t going to cancel these next few appointments, so I powered through the shower, changed my sheets, and collapsed into bed until I finally fell asleep three hours later, at eight in the morning. My mom came into my room at around 1:30 to wake me up, but she didn’t really have to because I’d only gotten a few hours of sleep before I was wide awake again.
It took me another hour until I was able to lift my head off of my pillow without the room spinning. Finally, I got out of bed, went to the dining room where my mom was preparing paperwork, and had a hard boiled egg. I knew this wasn’t a good idea before a car ride, but I ate it anyway and continued getting ready to leave. During my last ER visit, the doctor prescribed a small amount of dissolvable Zofran. I’d never tried that kind before, but it was all I had, so I took it and then we left to pick up my grandma down the street. Before we even got out of the neighborhood, I felt nauseous and dizzy. Right then and there, I knew this trip was going to suck.
We pulled over multiple times because I felt like I was going to puke, and when nothing happened and the nausea was still there, I broke down crying. I don’t usually let myself do that, especially in front of other people (even if those other people are my mom and grandma), but, in that moment, I couldn’t take it anymore. I repeated, “This sucks,” until I could bring myself to stop crying. And it does. It sucks. I’ve had motion sickness for as long as I can remember. Since developing POTS, however, it’s gotten much worse. It’s gotten to the point where I have anxiety before trips because I’m afraid I’m going to vomit the entire way like I’ve done so many times in the past. The anxiety only makes my nausea worse. It’s a vicious cycle.
I pulled myself together and we continued on to New York, where my appointment was.
Until we had to stop again because this time I really did have to vomit.
Normally I would feel better, but I didn’t have anything left in my stomach and I knew if we stopped for food, we’d be late, and I was not about to be turned away for being late after this car ride from hell. So I tried to make it until we got to my doctor’s office. Emphasis on tried. Let’s fast-forward past the three more times I vomited, to the actual appointment.
There’s still nothing in my stomach at this point aside from a couple of saltine crackers their staff found for me. I was weak, nauseous, and dizzy, so I let my mom and my grandma do most of the talking. He looked over my blood work and EKG from the ER visit, told me everything looked fine, and then went on to tell me that there was nothing he could really do as far as POTS goes because he doesn’t know enough about it to treat it. Though we were a little disappointed, we also kind of expected as much. He prescribed me my meds and the rest of the appointment was spent catching up. (I should probably mention he’s an old family friend, dating back to before I was born.)
We grabbed a bite to eat at a fancy-looking diner, where I had two slices of cucumber, half a piece of bread, six french fries, and the tiniest bite of a chicken finger. throws confetti Gastroparesis!
We stopped by our local grocery store back in New Jersey to pick up my meds and finally went home. The next day was spent resting while catching up on TV shows I’ve missed and hanging out with Milo, who was so happy I was home that he didn’t leave my side.
Thursday: POTS Specialist
If I’m being honest, I’m not 100% sure what happened during that appointment. Getting there, I’d taken the tablet form of Zofran, so aside from a small bit of nausea, I was fine. The waiting room was really nice compared to other waiting rooms. There were two large fish tanks, a scary-looking polar bear, and Greek paintings and statues scattered around the place. Oh, I didn’t even mention the chairs! My grandma described them as ornate dining chairs. Not to mention it smelled like a hotel lobby instead of a doctor’s office. I loved this place already.
I sign in, fill out the new patient form, give them my insurance and co-pay, and sit back down. This was the first appointment, aside from the visit to the ER, where I filled out my own paperwork now that I’m over eighteen. (We’d taken a bit of a break from doctors while we figured out our next move since I was aging out of pediatrics.) I was excited!
What I found odd was there was no section for family history or previous diagnoses. Though I mentioned during the appointment my EDS diagnosis, insomnia, and gastroparesis, he doesn’t know I have early onset arthritis or sleep apnea. We’ll get to that in a second.
I was taken to a room to do the usual height, weight, blood pressure, EKG, whatever, exam, and then moved to the real exam room (that doubled as an office for one of the doctors). Here’s where things got interesting. Dr. D was waiting for me in the room, which almost never happens, and within two minutes I think I met just about everybody else that worked in the office, as well. They were coming in, going out, calling other people in, ordering tests and prescribing meds so fast I couldn’t even keep up. According to Dr. D, my previous POTS specialist dropped the ball. He found it shocking I was never put on a beta blocker, which I always thought was weird, too, and put me on Midodrine and Propranolol. He told me my body’s going to hate it for the first six weeks, but after that we should see an improvement. Needless to say I’m not looking forward to it, but if it’s going to help…
Dr. D asked about other diagnoses and medications I’ve already tried, but he would move on to the next subject so fast, I couldn’t give him my full history. We couldn’t keep up. For example, while he was leading us out of the room at the end of the appointment, he mentioned very briefly what type of POTS I had, but I wasn’t out of the room yet so I couldn’t hear him, and when I went to ask him to repeat it, he was already gone. Sometimes it seemed like he was finishing sentences he didn’t begin out loud. We think it was because there was so much ground to cover considering we were basically starting from scratch with my medical care again. Maybe future appointments won’t be so hectic.
I left the office with two beta blocker prescriptions, a prescription for higher and tighter compression socks, an endocrinologist recommendation, and the advice that I should stop taking my sleep medication so often because he doesn’t want me to have to rely on Lunesta. He prefers I take Melatonin, but as that never worked for me, I don’t see that happening. I did start cutting Lunesta tablets in half because that was his alternative suggestion, but it doesn’t seem to be as effective. I’m not sure he understands how bad my sleep pattern can actually be, which is understandable considering I didn’t really get a chance to tell him.
After the appointment, we stopped at a diner to get a bite to eat before heading home, where we talked about where our heads were at and how we felt about everything that happened. We all agreed that we left more confused than anything else, but also hopeful that this is where I’m supposed to be, at least for now. As all over the place as the appointment was, I left with the feeling that my health isn’t always going to be this way. As y’all know, I couldn’t say that a week ago. He didn’t promise a cure, especially considering how my POTS was brought on (and the fact that POTS doesn’t truly have a cure), but he did say his goal was to get me to at least be able to function, which is all I ask as someone who is currently stuck in their bed more often than not.