Unexpected goodness

This has been a crazy week. Watching the news and all the information regarding COVID-19. Of course the first known person in Pennsylvania happened to live about 4 miles from me. I heard as I was pulling into a gas station to fill up my tank. I found napkins before picking up the nozzle and promptly tossed them before dousing in hand sanitizer. The good news is that I can now identify each and every paper cut on my hand by name. They are ready to revolt! I must have purchased 6 bottles of hand soap to have on hand, too. I’ve decided to follow the CDC guidelines and to avoid going to crowded places. I normally attend a big event in Philadelphia this time of year, but I chose to not go. I’m still debating on attending my middle school’s play. My immune system isn’t something I can take risks with anymore. I’m not going to stop living life until it’s gone, so I will make sure to be as cautious as I can be at all times.

So here is a wrap up of my week. I’ve written many times about my dermatological issues. I have a skin disease called DSAP (disseminated superficial actinic porokeratosis). It’s a benign skin disease that causes red, scaly circles-shaped lesions all over areas exposed to the sun. It’s basically the breakdown of keratosis in the skin from sun damage. If I let it go for too long, it looks like I am covered in chicken pox. There has been no effective treatment over the past 19 years I have dealt with it. I’ve resigned myself to getting anywhere between 50-200 lesions burned off each and every year. It’s like bee stings all over my body and it always throws my arthritis into a flare. Plus, I have to do it only in the winter/fall because after the treatment, I’m left with dozens of visible blisters on my skin. The scars fade to look like large sun spots or freckles. It’s a good thing I have red hair because it looks natural. This past week, I entered the dermatology office and my dermatologist gave me the biggest smile. I returned it and got ready for my whole body skin check. When she finally entered the exam room, she came in with a medical journal and the cover held clear arms pictured. She smiled at me again and said, “I have exciting news. There is a new treatment for DSAP and it works!”…..no joke, I laughed because I truly did not believe her. She showed me the journal and then explained it is a combination to topical cholesterol and lovastatin combined that breaks down the lesions. It’s not covered by insurance, but still affordable. I was in a daze. She completed my exam and called in the prescription to a compounding pharmacy. It was the first time in 20 years that I left the dermatologist office with a smile because I wasn’t burned, scraped, cut, or biopsied. When I told my mom, she teared up. You see DSAP is a “cosmetic” issue in the skin world. It can become cancerous in less than 11% of the cases. It’s relatively benign. To those of us who suffer with it? It’s depressing. You feel like a leper when people notice the ugly lesions. There is no money to research DSAP, so patients have always been out of luck. I even asked my dermatologist if it was an “oops” discovery. She just chuckled and said, “Maybe.”

I got home and posted on my AMJT’s facebook page about my excitement of a new treatment. Suddenly, my messenger was blowing up with questions from patients all around the world and even texts from friends who never knew I had the disease. They too, had DSAP. I’ve been sharing the information far and wide now, so if you are suffering from DSAP, you may now have hope. According the the Journal of of the American Academy of Dermatology, “Treatment with topical cholesterol/lovastatin (but not cholesterol alone) resulted in near complete clearance of disseminated superficial actinic porokeratosis lesions after 4 weeks of therapy…” It also works for other conditions. What is the treatments? It is a compounded Topical cholesterol/lovastatin treatment. According to the pharmacy, it’s flying off the shelves and is so popular because it actually works. Here is to trying something new! I’m glad my random post on FB will potentially help others.

Finally, I stepped out of my comfort zone. I wrote a book back in 2018 about my dog, Georgia, called “Making Lemonade with Georgia Grace“. I’ve done some small promotional visits but this past week, I was asked to speak to a large elementary school’s 5th grade class. There were between 400-600 kids. I have sat through many a boring school presentation, so I worked really hard on a slide show to keep the average 10-11 year old interested….plus, I brought my best girl with me. Georgia is a hit no matter where we go. I had to laugh because when I told people I was invited to do an author visit, people (who knew I wrote a book) asked, “Why?” It’s okay. I think most people believe only my friends and family purchased the book. In reality, I’ve sold over 500 books in 9 countries. Not overly impressive for a book, but for someone who never planned on being an author, it is a success. Best part?? The kids read the book and they loved it. They listened almost the entire time (that is a feat in itself with that amount of 10 year olds!) I had an experience that I never predicted I would have and I think I did a good job. Georgia peed twice….turns out she has a UTI. So my next goal is getting her over this medical hump. One step at a time. Until then, here are some snippets of our unexpected goodness.

My advice on being an author. Never be afraid to edit.
Senior dogs rock, even when they pee on the floor.

Stepping out of my comfort zone to talk about DSAP and to be an “author” reminded me that my life, although medically challenging, is good. Thanks for reading.

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

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