A Dizzying Array of Doctors Appointments

If there’s one thing that continues to amaze me 9 ½ years into this journey of chronic – often disabling – pain… it’s that there are still medical tests to conduct, procedures to perform, appointments to attend. It can be downright dizzying.

Over the past several weeks, I’ve been in the doctor’s office at least once a week. Primarily because I’m part of a long COVID clinical trial (by choice). It’s a blind research study where for nine weeks you get an IV dose of the FDA-approved medication they’re testing to determine its impacts on relieving patients of some of the lasting COVID complications.

The other nine weeks, you get a placebo IV – a saline solution or something. You don’t know which you’re getting when but everything is carefully tracked from symptoms after the infusion to regular bloodwork to monitor the basics (and much more) to cognitive functioning tests. It’s quite an experience.

I’m yearning for relief from the excruciating fatigue, shortness of breath and irregular and racing heart rhythms I’ve dealt with since having COVID in March of 2020. If I don’t see any benefits at all, I’ll still relish the opportunity to have given something back to medicine.

I’m seeing a new neuro-muscular specialist in early 2022 and cross my fingers that fresh eyes on my symptoms can offer a new pathway to relief. I hope to discover what’s causing the more recently diagnosed small fiber neuropathy.

I’ve also been through a slew of cardiology testing to get to the bottom of what’s causing these heart issues: EKGs, an echocardiogram, a CT scan, 48 hours with a heart monitor followed by 30 days with a heart monitor, follow-ups, a cardiac stress test, a tilt table test to come and of course, bloodwork. Always, lots of bloodwork.

For someone who was once so terrified of needles that when I had mono in high school, I ditched the lab something like four times (literally, checked in and snuck out in fear) before I was returned to let them draw my blood. Now, a single sitting may involve up to five attempts to get a good vein – and I don’t mind much at all. I imagine my veins have had it with all of this.

That said, the worst part remains the waiting… the fear of some terrible diagnosis, yes. But also, the fear of yet another dead-end with no answers. That’s the part I dread the most – when a doctor says we see all of these things wrong but have no solid explanations as to why or what to do about them. That’s when I lose hope, if even temporarily.