Overwhelmed by Doctor's Appointments
I first started dealing with chronic pain and illness in 2015. Each year since then, I’m determined that this will be the season of my life where I don’t have to constantly go to the doctor. So far, every time I have been wrong.
When I was diagnosed with lupus and hypertension in early 2017, I had all sorts of doctors checking on me as we tried to figure out exactly what was going on. I also was going to twice-weekly physical therapy for my muscle pain.
Just when I thought things were close to being under control, I unexpectedly became pregnant with my first child. While it's not recommended for people with lupus to get pregnant without proper planning, thankfully, things went well for me overall. Of course, I had many, many doctors’ appointments during my pregnancy.
Seemingly endless appointments
It’s always something, isn’t it? Last summer I had 4 Benlysta infusions over 2 months. I’ve been in a physical therapy program 6 different times since my chronic pain journey started. Over the past year, I’ve seen a specialist for eye inflammation issues 14 times, sometimes coming in weekly when I'm flaring. During my second pregnancy, I traveled to Duke University Medical Center 4 times to see specialists. I also needed twice-weekly appointments for my high-risk pregnancy starting at 32 weeks and even had a hospital stay at 36 weeks for monitoring. After delivery, I developed complications and, after 4 appointments, the issues are still not entirely resolved.
Who else can relate to the never-ending and overwhelming issues that cause you to have to keep returning to the doctor?
However, it’s not just me that has a lot of doctors’ appointments anymore. My 3-year old has 3 appointments a week for speech and occupational therapy, plus appointments with specialists to help navigate his medical complexity. We were thrown for another loop when my youngest was born with a rare disease; he had to see a geneticist before he was even 2-weeks-old.
How do you find the time to go to the doctor?
Before I had kids I just made my appointments and went to the doctor. It was hard having so many appointments and feeling unwell, yet I had no idea how much harder it could be. Before COVID-19, I would occasionally take my first child to appointments with me. It was extra work, though, and I’d be exhausted and in pain afterward. But I wasn’t allowed to take him to any of my appointments after COVID-19. Currently, there’s no way I can take both kids with me and still have a productive appointment.
So I have to arrange childcare for nearly all my appointments. I have to figure out when my doctor and my childcare are both available, which is quite difficult at times. The hardest part is sharing just how many appointments I have with my family or babysitters because my poor health isn't something I'm always ready to talk about. Lately, when my doctor recommends an appointment or procedure I ask how important it is – because I have no time to waste on something that’s not absolutely necessary.
I didn't realize it would be so complex to go to appointments as a mom. I thought more issues would be resolved, yet here I am still needing to see doctors all the time. I also didn't expect that my kids would need so many appointments. Sometimes I need childcare for one kid while the other goes for an x-ray, lab work, or an especially in-depth appointment. Don’t even get me started on the extra work of insurance approvals, filling medications, or messaging doctors about follow-up issues and care.
As hard as it is, I wonder how people who work full-time could manage it? At this point, I couldn’t go back to work full-time even if I was physically able to because I spend so much time each week on my care and my 3-year-old’s therapies.
Attempting to have a positive perspective
I’m eagerly waiting for the day when I have fewer appointments. At the moment, my body clearly has other plans. I will have to adjust and make the best of it - as many of us with lupus have learned to do.
What are your experiences with going to the doctor as a parent?
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