I'm a knitter, spinner, writer, poet, teacher, and mother. But all of that is changing quickly. This blog is about life with chronic pain from rheumatoid arthritis and fibromyalgia. It's about leaving work and going on disability. It's about possibly becoming an empty nester. But mostly it's about knitting. I will design patterns in response to life and all of the unexpected changes that it brings.
Friday, February 2, 2018
Incomplete Resurrection
After playing the ritual insurance company/doctor's office/specialty drugstore game of telephone, I am finally back on my miracle drug.
Actually, that depends on your definition of miracle.
Commercials for biologics definitely portray miracles. Last weekend, after spending a day in and out of fever dreams, I crawled to our favorite local restaurant for takeout. While waiting, I watched a Humira add on TV. A woman was happily inspecting and hauling crates of produce. Apparently, thanks to Humira, she could open her own restaurant. (Humira is not my current medication, but one of many I used for about a year before it stopped working.) Other biologic commercials are similar--people paint their houses, play soccer with their children, jog with their dogs.
Biologics do make a difference. For me it's the difference between spending most of the day in bed or being able to putter around the house. Biologics helped me teach for about fifteen years after my diagnosis. They also protected my joints, so after almost 20 years of pain, X-rays show very little damage.
These medications have only been available since the nineties and they have made a huge difference in the lives of RA patients. If I had gotten sick 20 years earlier, I would have expected rapid deterioration, multiple joint replacements, and a shortened life.
So I am thankful for my miracle. I'm back from the dead. But it is not a biblical resurrection, a complete renewal of life after death. I feel more like Frankenstein's monster--a movie version--lurching around in obvious disfunction. But at least I'm lurching.
In other news, I've used my renewed energy to get serious podcast work done. The first one is recorded. I have three in almost final draft form and one as a rough draft. I'm to the point now that I can work with my husband this weekend on the technical stuff and start submitting episodes to podcast providers for approval. I'll let you know when they are available.
I've also come up with a couple of fund-raising items to cover podcast costs. I've designed a hat based on one of the poems I'm talking about. Once the podcast is launched I'll sell the hats, and the pattern to make the hats. Also, my artistic mom has agreed to make Emily Dickinson coloring pages for me to sell as PDF files. They will also be available through my Etsy shop.
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I hate those commercials. By and large people who are part of those commercials do not reflect me. They are not male, ill or retired. Hmm yeah not like me
ReplyDeleteI'd love to see even one with a sick person in it. Testimonials by real autoimmune sufferers would impress me.
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