Falling Off the Medical Compliance Wagon
The last eight years have involved a countless number of doctor and lab appointments. My Crohn’s disease relapse started way back in 2012 and I've been fighting to come back from it ever since then.
Back then, I scheduled and went to doctor and lab appointments without hesitation. I went regardless of how awful I felt. I used to panic if faced with an appointment cancelation due to my or a doctor’s scheduling conflict. I’m about to admit to doing something I usually advocate against. I am guilty of falling off the medical compliance wagon.
Falling off the medical compliance wagon
I stopped taking B12 shots last year. It was a mix of fighting with the pharmacy for proper needles and a long drive. My B12 level fluctuates from mid-range to low-end normal.
My doctors prefer me to be in a mid-to-high range of normal. After jumping through hoop after hoop to try to get the right needles, I was over it. The pharmacy repeatedly gave me insulin needles and needles that I couldn't draw the serum with. So, my PCP told me I could get the shots at her office as I had done in previous years.
A long drive to the doctor's office didn't seem worth it
Then I moved to places me even further away from the PCP's office. The drive which once took 15 minutes, now takes an hour due to traffic and is about 45 miles round trip. There was a time where I was driving to the PCP's office weekly for the shots. It felt ridiculous to go through the drive and sitting in traffic just to get a B12 shot bi-monthly, let alone weekly.
Eventually, I felt well enough to say, “No, thank you.”
Some may see canceling because you are feeling well as the pinnacle of health success. However, when you are living with complex chronic conditions, frequent check-ins with doctors and labs can help spot trends of decline before you may feel it.
At times when front offices would call about canceling an appointment, I found myself saying, “Okay, thank you.” But I wasn’t asking to rebook immediately either.
Changes in different providers
Looking back on things, I know I fell off the medical compliance wagon with my rheumatologist due to some changes at her office. They were merging with a medical group and the training sessions interfered with an appointment. Then, my schedule interfered with another appointment.
There was also a transition with my GI and IBD specialist. One IBD specialist was leaving her practice and the other was planning to leave by the end of the year. I had to shift everything to my local GI in that interim. I felt accomplished in this arena because I finally went and did my colonoscopy.
Here’s the kicker. The one office I thought I had been the most compliant with, was the total opposite. While working on some insurance paperwork, I had to call the PCP’s office for visit date info. According to the nice lady on the other side of the phone, I had canceled quite a few appointments and attended only two appointments in all of 2019. My lab visits were also abysmal. I stopped coming in for B12.
At one point, I was in the PCP’s office every eight weeks. As things improved, we moved appointments to every 12-16 weeks depending on symptoms and labs. While my labs have been stable over the past two years, I was in for a surprise when Decembers came back pretty wonky. There was data to review from 2012-2018. But not much for 2019.
It's frustrating now to not have much to look back upon in order to understand what may be going on.
The reasons I stopped being compliant
I sit humbly before my keyboard asking where I went wrong. Well, I know where I went wrong. I tried to take a full-time job, grew tired of appointments and needle sticks, my mom got sick, and I was too comfortable.
I think the last point is the most important. Prior to being told my Crohn’s disease was in deep remission, I was very sick and debilitated. During those rough, early years I still went to all appointments. I did not hold myself accountable, so this lack of data is on me.
Health is a gift that no one is guaranteed. As someone who’s fought hard to come back from a ridiculously intense Crohn’s disease, psoriatic arthritis, and psoriasis flare, I do feel dumb.
Beginning to hold myself accountable again
I can also feel smart by fixing this.
January is barely over and I already canceled a doctor’s appointment due to a work travel conflict. To mitigate this delay, I pushed for the closest next appointment and requested lab orders in advance. I put a date on my calendar to go to the lab, with enough time for results to make it back to the doctor before the appointment. Most importantly, I went.
How do you hold yourself accountable and fight fatigue in order to keep from falling off the medical compliance wagon?
What is your comfort level disclosing your IBD to your employer?