I joined another short story contest. This one seems really interesting. We have to judge other stories. They will send us two stories at a time, from a genre where we aren’t signed up to compete. We have to read the two stories and choose one that’s better than the other. These battles continue until there is a winner. It’s a cool concept and I’m psyched to write my entry and then read the other entries. It’s still a competition where I will find out the topic which must be heavily included in the story, at the last moment. Then I think it’s 3 days to write the first story in February. Then there’s another round with different criteria in a couple months after that one. It goes on all year until the final battle in November, I think.
I wrote a story for my best friend. We were talking about Christmas gifts and she loves to make gifts. She is a very talented crafter, knitter, and crocheter (Is that a word?). She was saying how much she likes to make gifts and receive homemade gifts. I realized I could write a story for her. She’s a trooper and read my book even though romance is not her thing at all. She thought it had too much sex, lol. She absolutely loved a fantasy short story I wrote for a competition. So, I decided to write a fantasy story for her.
I wanted to incorporate things from her life. I messed around with her first and last name until I was able to make it into a fantasy heroine worthy name. Then I added her husband and kids, changing their names slightly. I added her other best friend, one of her dogs, and me! Her other dog will make an appearance in the next installment. The character in this story that represents her one dog is a mouse. Her other dog will be a horse in the next story. I decided, if she likes it, I will add to the story for her birthday and Christmas each year. Lucky for me her birthday is in June. So that means an installment every six months or so.
I also painted a cover for her story. I haven’t been able to paint for a long time due to my hands. I struggled a little but not too bad. I printed out an outline of a dragon and I used watercolors to basically fill in the blank spots. Very similar to paint by number paintings from decades ago. It does look nice from a distance. Up close the mistakes are obvious. My father-in-law always says, “It looks good from afar, but it’s far from good.” That about sums it up.
I don’t think I’ve talked about my disability with you yet. I have fibromyalgia, I was diagnosed in 2000. I also have a rheumatoid type of arthritis called psoriatic arthritis, or PsA. It’s not like the osteoarthritis your grandmother got from her years baking or cleaning with a repetitive motion. This arthritis is a degenerative autoimmune disease. I’m really lucky that I don’t suffer with the psoriasis part of this illness. My mother has it too without psoriasis. PsA can affect, damage, and destroy, bones, tendons, organs, eyes, and hearing.
The most heartbreaking discovery for me was when I learned that children get PsA and RA. It’s known as an invisible disability because you can’t always see everything that’s going on with a person who has an autoimmune disease. Please don’t ever attack a person who appears healthy but has a disabled parking permit. I don’t always need my wheelchair, but that doesn’t mean I can walk across a big parking lot.
I was in the best shape of my life, healthwise. I was walking or jogging about five miles a day, I was vegan, I worked out at the gym four times a week, and I did Zumba every day. One night I was changing into my pajamas when my thumb bone snapped. It didn’t hurt. The top part of my thumb just hung there in my skin. I thought I had dislocated it somehow. Not wanting to deal with the ER I taped it up and went to urgent care the next morning. They x-rayed it and the doctor informed me my bone had snapped from deterioiration. I had arthritis. I didn’t understand what it meant and I thought it was osteoarthritis. I also thought my mother had osteoarthritis, she never explained. (They want to rename it to lessen the confusion.)
I had no idea I was starting a lifelong trip through hell, or at least purgatory. I had to get my thumb fused. There are screws holding it together now. It no longer bends at the joint. I had to get carpal tunnel surgery. Trigger finger release surgery. My neck is fused, there’s a metal plate holding it together and I can’t move it like I used to. I am on my 11th PsA medication, yes, 10 have not worked or stopped working. I have to see the rheumetologist every three months. I have a weekly injection of a “chemo lite” drug meant to keep my immune system in check so it doesn’t attack my body. I have a monthly injection of a PsA specific biologic also. I take about eight pills every morning and eight more at night. Oops! I forgot I had knee surgery too. I have to deal with medication side effects. The chemo lite causes full chemo side effects, nausea, vomiting, dizziness, exhaustion (can’t stay awake the next day), etc.
As a result of the medication and conditions, I have gained weight, lost hair, can't drive anymore, require a wheelchair for anything longer than a five-minute walk. My pointer finger points the wrong way and is twisted, it’s creepy. Both of my pinky fingers are bent and I can’t straighten them. I have a lump on my wrist and terrible wrist pain. My neck hurts all the time too. Before the surgery I tried three failed attempts at an epidural pain block. I’ve had excruciating tests. I’m always in pain unless I’m asleep, sometimes even then. I have terrible insomnia. I can’t totally call that a negative. I do a lot of reading and writing in the wee hours.
My ring finger nails are misshaped. My thumb nails aren’t right either. I’m currently wearing a silver splint on my other thumb because it has become destabilized and very painful. That silver splint is connected to a chain, that is connected to my wrist. Why do I make this spectacular fashion statement, you ask? Because my splint doesn’t always stay on. In the shower, it gets soapy and would go flying if it wasn’t attached. The chain also likes to get hooked on things. Not only can I not always hold things without dropping them, but I get hooked on things and knock them over, onto the floor…
There are many other daily difficulties I struggle through, but I’m used to them, I’m used to the pain. I have to say, no matter how much I struggle, I never give up. I never stop smiling. I have had a moment here or there where I felt sorry for myself, and I needed a good cry and a hug. But those moments are rare. Usually, I always have hope. Hope this medication will work. Hope this surgery will work. Hope this will be the day I won't need an assistive device. In general, lots of hope.
I didn’t tell you all of this for any reason other than to educate and advocate. Sorry, it’s not exactly about writing, per se. But it is for me. My writing journey has been with, despite, and because of my health. For more information check out these links:
https://www.mayoclinic.org/diseases-conditions/psoriatic-arthritis/symptoms-causes/syc-20354076
https://www.arthritis.org
As always, thanks so much for reading!