I Grew Sick of Being Reminded I'm Sick

The last eight years have involved a countless number of doctor and lab appointments. Between Crohn’s disease, psoriatic arthritis, psoriasis, and some pre-cancerous skin issues, I became sick of all the doctor appointments.

I grew sick of being reminded I’m sick. There, I said it. Looking back, one could also argue that I grew comfortable. These chronic conditions were mostly under control. Sure, I experience blips here and there but have been very lucky over the past year.

When I got sick of being sick

During the spring of 2012, I had a massive flare-up of Crohn’s disease and an unknown type of arthritis. A little later in the year, I began experiencing skin issues. The inflamed burning itching skin was under my arms, in between the area where groin meets the leg, and in between and around the buttocks region.

My gynecologist actually pointed it out during my annual exam. It was slightly embarrassing, yes. However, I truly suffered in silence. I feared to mention it to my other doctors. Since it started a little while after my last colonoscopy, I desperately avoided being probed.

My sickness story

I consider this a result of trauma from the crappy doctors I had when I first got sick in my teens. Anyway, in the early days of this awful flare, I was at my specialists’ offices quite often. I had more lab visits than I care to remember. And all I have to show for those years is a chunk of medical debt that I’m still paying off.

Back then, it wasn’t out of the ordinary to have a lab visit every few weeks and a doctor’s appointment every 4-to-6 weeks. Even with appointments staggered, it was easy to accrue four appointments in a month.

From 2016 through 2018, I was on B12 shots, and that had me at the doctor’s office almost weekly. Arthritis affects my hands and makes it difficult to draw the serum into the syringe and then self-inject. The ladies in the lab at my PCPs office would administer the shot for me.

Fighting the pharmacy

As my health began to improve, I wanted to take more autonomy over self-administering certain meds. So, I asked my PCP to order my B12 from the pharmacy and the needles to go with it. This turned into a ridiculous joke. They provided insulin needles of various sizes and I ended up skipping shots for months.

I grew sick of fighting the pharmacy and bothering the MA to reissue a prescription for needles. It really irritated that I was forced in a sense to go back to the PCP’s office for the weekly shots. In the summer of 2018, we moved to our new house. It put me about 40 minutes out from my PCP’s office.

The drive from my old house was 15-20 minutes without traffic. I eventually felt well enough to space out shots to 1-2 times a month. After a while, I stopped them. This is probably where I started to slack off on keeping appointments.

Reminding myself of my sickness

When I was attending my appointments properly, I utilized them as a secondary check-in with my medical care team. Sometimes casual questions would help trigger a response that would cause them to test for something in order to change dosing. Or look at a strange thing on my skin that turned out to be precancerous and remove it.

For example, my skin is a great indicator of inflammation increasing in my body. Should I suddenly have an emergence of psoriasis, it’s generally a good indication I am not doing as well as I think I am. I then bring up the new presence to one of my care team members and they act accordingly.

Looking back, the decline in my attending regularly scheduled appointments also came when my rheumatologist moved her office. She manages my PsA and Pso. I only see the dermatologist a few times a year. The office closed for two weeks and it caused a shift in the entire schedule for a couple of months.

When reality set in

Something similar happened with my IBD specialist leaving her hospital and having to transition my care back to my backup general gastro. I canceled quite a few colonoscopies before really committing to one because I was long overdue.

My first reality check occurred when I was filling out some paperwork for an insurance program that pays me for my compliance in attending medical appointments. When we started searching for dates to fill in, the drop off grew clear.

Having these regularly scheduled appointments is what brought me to a stable place of health. They gave me more days with less-painful and clearer skin, as well as improved psoriatic arthritis and Crohn’s symptoms.

Why laziness doesn't pay off

This laziness became even more obvious when I had an autoimmune thyroid issue pop back up. This shift threw everything off from my psoriasis to my heart. In the past, whenever one of these thyroid attacks occurred, I’d review lab reports to try to spot the trend.

Some of the online lab portals now provide an algorithm that creates a chart where you can spot trends. There’s just one problem, I didn’t have trends to spot, because I only went to the lab twice in 2019 for my inflammatory and thyroid testing.

The importance of prioritizing appointments

Health is a gift that no one is guaranteed. As someone who’s fought hard to come back from a ridiculously intense health crisis, I feel incredibly stupid.

For now, I’m back at a square one with inflammatory and thyroid testing. I’ll have to test regularly and log symptoms regularly in order to build a profile back up to figure out how to optimize treatment.

For those of you who feel worn out from going to your appointments, I hope this will resonate. It’s these appointments and tests that can help save us in the long run.