Missing the Big Picture!

Do you ever feel like the dots are not connecting, the pieces are not lining up, or you are missing something? Odds are, you are focusing on the little stuff and not connecting the dots.

A fractured healthcare system

Our U.S. healthcare system is fractured. We go to a primary care physician for earaches, a gynecologist for "women’s exams", a rheumatologist for rheumatoid arthritis (RA) and all its friends, a cardiologist for our heart, an orthopedist for our joint replacement, etc.

All of these are important pieces of our healthcare needs. Unfortunately, our pieces do not connect well.

The original intent of the primary care physician (PCP) was to be the "ringleader" and keep track of the whole person. This worked well when there were adequate numbers of PCPs. According to the Graham Center in 2020, the percentage of physicians in primary care practice has dropped to 31 percent.¹

Keeping track of care from all my specialists

I have noticed a steady decline in my PCP’s ability to keep up with all my “stuff.” Don’t get me wrong, I have an excellent PCP.

However, it is hard enough for me to keep track of appointments and results from all my specialists, let alone for my PCP to do that with all his patients.

So where does that leave us? How do we figure things out? How do we connect the dots and pieces and come up with the big picture?

Advocating for your health

We have to take ownership of our own health. Advocating for ourselves is not easy, but it is essential. Learning how to describe our pain, fatigue, and other symptoms in a way that makes physicians listen is important.

Tying our symptoms to how it affects our daily life is one of the best ways I have found. Instead of saying, "I’m so fatigued," make a comparison. "I used to be able to walk to the mailbox, but now I can barely make it to the front door."

Being specific helps your physician to understand how your symptoms are impacting your life.

Keeping a record of your visits and questions helps to figure things out as you go along. Some people keep a written journal; I prefer to have my notes on my phone. I am much more likely to remember my phone than a journal.

Having this record proved invaluable to me this year.

Investigating pain and fatigue

December 28, 2020, I was diagnosed with sleep apnea and began using a CPAP. My sleep doctor told me to wean off my fibromyalgia medicine because it was no longer considered useful and was harmful to my sleep cycles. I discussed this with my doctor who prescribed it and went on a weaning program.

Late January 2021, I got COVID-19 despite all my best efforts. It was a brutal case and I required IV antibody infusion. The fatigue and pain reminded me of my worst ever RA flare.

Three months later, I finally began to feel like myself. After I got my COVID-19 vaccines, my taste and smell came back, but the fatigue and pain lingered all year.

Staying diligent in my search for answers

December 3, 2021, I saw my new rheumatologist for the first time. He listened to me at length and ordered x-rays and lab work. He felt that my pain and fatigue were caused by my fibromyalgia. The initial lab work and x-rays showed no sign of RA and the Vectra was still pending.

As you can imagine, I was frustrated. In reviewing my notes and praying for guidance, I suddenly realized that the pain and fatigue started when I weaned off my fibromyalgia medication. The COVID-19 infection was coincidental.

After a discussion with my doctor, I resumed my fibromyalgia medication at a lower dose. Within 2 days, I felt relief. On December 22, 2021, my Vectra results showed that my RA had indeed worsened and a new medication was added to my regime. After 1 week, I can now wear rings again.

Being your own advocate and investigator takes time and effort. The results are well worth it.