Photo by Seth Macey on Unsplash. [Image description: A woman holding an analog clock. The background is blank and her face is covered by her dark hair blowing against her face.]
A couple of Tuesdays ago, my mom and I made the hour-and-fifteen-minute drive down to my cardiologist’s office, who also treats dysautonomia. It was our first in-person discussion since the Northera incident
so there was a lot of ground to cover. But we’ll get to that in a moment. If you’ve been a reader of my blog over the past year, you know full and well that these appointments don’t always
go as planned. Tuesday’s story starts in the waiting room.
First of all, I picked the chair directly under the air vent. Why? Because I’d been standing in line for far too long behind a guy who was waiting for something. I don’t remember what he was waiting for, but I do remember it wasn’t necessary for him to be smack dab in the middle of the front desk area. All I needed was to fill in my name on the check-in sheet, which he was blocking. Thankfully I had Egbert the Quad Cane with me, but I was feeling the effects of the long drive, so what I really needed was a seat.
After scribbling in my name, I located my mom and sat in the first open seat I found beside her. Directly underneath the vent. At first it was nice because it was in the high 80’s outside, and cool air helped with the dizziness that came from standing for so long. Until it wasn’t so nice anymore and I was painfully reminded of last summer, at the Lady GaGa concert, where I froze and my joints locked up and I was in the worst joint pain I’d ever been in… This waiting room wasn’t nearly as triggering as the concert was to my sensory issues, but hoooh boy was I cold!
Nearly four hours of waiting later, we finally got into an exam room. By that time, my mom and I were exhausted, starving, and in pain. Our brains were foggy, my blood was pooling, our stomachs were empty, and my mom was convinced the Mona Lisa painting on the wall in the exam room was tracking her with her painted-on eyeballs. The appointment hasn’t even officially started, mind you.
Waiting for us in the exam room was a young doctor, I’m assuming fresh out of medical school. Let’s call him Carl. Carl sits down at the desk and starts flipping through my very thick file, trying to familiarize himself with my case. Immediately, alarms are going off in my head… Where is my doctor? Who is this guy? Does he even know anything about POTS? Did we just sit in a waiting room for four hours to be seen by a guy who is not my regular doctor and can’t even help me?! Deep breaths, Danielle!
Carl was very nice, and even knew a bit about dysautonomia already, which was incredibly refreshing. He was interested in my complicated case, trying to come up with solutions and asking questions about what has helped and what hasn’t. The usual increase of salt and fluids came up, to which I brought up gastroparesis, and he seemed to understand why that would make increasing my water intake difficult. Every time I mentioned another medical condition, he would sigh, defeated, and it made me giggle because it made me think of my case as extra credit at the end of a test. I give Carl a lot of credit for trying as hard as he did to help me because my undiagnosed years were full of much more experienced doctors who gave up far too easily.
It restored my hope in the future of medicine.
At one point, Carl left the room because he was locked out of my electronic file. My mom and I looked at each other and burst into laughter. Not at Carl, of course, but at the predicament we were in. Did we really travel over an hour just to wait four additional hours in a waiting room and not see my regular doctor? And poor Carl, who had no idea what he was getting into when he sat down to flip through my file that day!
It turns out my mom and I were wrong. My doctor was indeed in the office! Later on, after Carl gave in and we got to talking about TV shows and books instead of my case, my doctor burst into the room with the nurse practitioner by his side. Let the chaos begin!
We discussed Northera and the events that led to me switching back to Midodrine. He upped my Midodrine to 10mg from 5mg and increased Propranolol to twice a day instead of once. I’m now on a handful of supplements, as well, like L-carnitine, beet root exract, CoQ10, and Foltanx RF. Prior to that appointment, he had me taking alpha lipoic acid.
He also prescribed Zoloft. My mom and I were a little apprehensive about it because the rheumatologist he referred me to misdiagnosed me with depression and tried to give me the same drug. When my mom hinted at her concerns, he assured us he’s giving me a lower dose to help with something else, not as an antidepressant. He went into detail with his explanation of what the lower dose of Zoloft would actually be doing for me, but my brain said, “See ya!” around hour two in the waiting room… I’m just hoping future doctors don’t see Zoloft on my medication list and write off whatever I might be experiencing. Maybe it seems like a ridiculous thing to be worried about, but it happened far too often when I was a kid and back then I wasn’t even on any drugs that could be used as antidepressants. Only time will tell.
I think that about covers it! We had to go back to the waiting room for a few minutes until they were ready to do my Ansar Test, where we discovered they’d ordered pizza. My mom and I were so grateful because very few things were open in their town at 9 o’clock at night, so we had no idea what we would’ve ended up eating otherwise. After my Ansar Test, we made our next appointment for September and then headed home. There were still people in the waiting room when we were leaving!
My friends are always shocked when I tell them I’m still in the waiting room, or just leaving the office at 9:45 P.M. when my appointment was scheduled for 4 o’clock. Half of my life has been spent in waiting rooms. Hell, I’ll be in a waiting room on my birthday for a dermatology consult. This is just life with chronic illness.