Filling in a puzzle with a yellow piece to represent making a potentially hazardous change to your body.

The Hazard of Becoming My Own Doctor

The year 2020 has been many things, and for people with RA, it has been a year when timely medical care has often been challenging.

This year, my every six-month infusion has been delayed both times and my body has suffered for it. Physical therapy and routine visits for RA-associated issues became ten times harder to access.

I’ve found myself using kinesio-tape for my painful ankle hoping I’m doing it right. I’ve been googling ideas for some new symptoms that are puzzling me in hopes that I can spare myself a visit to the doctor. This year has reminded me of something I experienced fifteen years ago, which had nothing to do with a pandemic and everything to do with me.

My doctor was out of ideas for my RA treatment

Back then, I was fed up. My body was an inflamed mess. I could barely walk and my doctor was aspirating my knees every couple of months to give me a bit of relief.

There is a certain look you can see when medical professionals know they are out of ideas, and I was seeing it too much. I could tell my doctor was getting weary of my lack of progress. I’d failed four biologics in two years and was tired of the feeling of wanting to itch my skin off - a gift from the last biologic I had taken. I was 34 years old, and I wanted nothing to do with the situation I was in.

I decided to treat myself

So I stopped going. I told myself that medicine had 32 years to heal me and it had failed. I decided that I would treat myself. I researched every natural treatment I could find. I started taking supplements from a multi-level marketing company whose motto was, “If it doesn’t help, take more.”

I went to an acupuncture doctor and a naturopath. I spent a lot of money I didn’t have to begin with and learned that a few of the things I learned about actually helped. My acupuncture doctor was the most helpful in being able to calm my painful body enough to get a few hours of sleep at a time. My massage therapist specialized in lymphatic massage, which calmed my knee inflammation a bit. My biggest risk worked well - an expensive far-infrared sauna which turned into my best pain reliever yet and something I still use today.

My RA remained as active and stubborn as ever

The problem was: my JRA stayed as active as ever. I was able to get myself more comfortable, but my stubborn disease continued being stubborn. After about a year, and another hand surgery, I decided to find a rheumatologist again. 

The value of treatment from a medical expert

I learned some very valuable lessons from this experience. I learned that rheumatologists may not have a magic bullet, but neither does the complementary medicine arena. I learned how much I appreciated the honesty of my acupuncture doctor who told me how hard RA is to treat.

I learned that I can use my experience to help my body be comfortable and strong enough to handle many of the smaller challenges that inflamed, painful joints bring to the table. But for attempting to alter the course of my disease, the medical experts have the best shot.

Grateful for the help I do have

Once I established myself with a doctor who helped me turn a corner, I realized the biggest lesson. There is a level of comfort that eases everything in life when you have a well-trained, inquisitive, and caring doctor to call upon when things get hard. Now when I get frustrated at my RA and want someone to help, I remember to be grateful for the help that I do have.

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