CIDP AND TURTLES

My eleven-year-old tells me Facebook is for old people. I just laugh. It’s true, I don’t use Instagram, TikTok or Snapchat. And Facebook is a lot of unrealistic posts of “perfect” pictures, but it is also a good way to connect with others. The first thing I did, before I even left Rush, was search for a group about CIDP. After I requested and was accepted, I hungrily read every post on there. I learned a few things.

1)     CIDP presents as a wide range of symptoms

2)     I was one of the lucky ones

3)     A turtle is the mascot

The turtle represents slow and steady. A variety of members in the group talked of being in wheelchairs, using walkers, falling, or stumbling frequently, and being on disability. Some people have been on infusions for years. You could have home health come do them at your home, you can do Sub-Q, which you do yourself. A lot of them constantly fought with insurance for their treatment and were even denied. A few had no support from family and friends who were ignorant or intolerant.

The majority of people have no idea what CIDP stands for or what it is. Guillén-Barre syndrome is the more common little sister of CIDP. What I have is the chronic form of that. One or two people in 100,000 are affected by it. It was certainly never on my radar before I got it.

After reading the posts in the FB group, I realized I was one of the lucky ones. I would find out in the coming months that I could live a relatively normal life. I showed very few symptoms between infusions and though my blood pressure would rise when I had to deal with insurance, I still managed to get all my treatments covered. My neurology team seemed to know what they were doing and had a plan for me. I definitely had the support of my family, friends, and employer. Despite the horrible disease I was diagnosed with, I still felt blessed.