Now What?
That’s a good question. Another good question is why did I just trauma dump all over the internet? Well, first, let’s answer the second question.
I wrote this whole series of posts in the hope that someone with Retinitis Pigmentosa finds it and realizes that though it’s a rare disease, they are not alone. In fact, there is a writer named Andrew Leland who published a book about his journey with RP. It’s not just a great read for anyone who wants to understand blindness and RP, but for family and friends as well.
There are also influencers out there on social media with Retinitis Pigmentosa. One example is blind makeup influencer Molly Burke. I follow her trials and tribulations on her YouTube channel and Instagram feed.
Along with them, a blind judge with RP named David Tatel just published his book called Vision: A Memoir of Blindness and Justice. So to anyone reading this with RP, you’re not alone. Its a shitty disease, and we’re here to share our struggles with you.
As For Me
Well, I finally hit that acceptance stage, and I’m ready to face this thing head-on. It’s a part of me now, and I’m not just going to manage it; I’m going to own it. But, what does owning an incurable disease mean?
According to Dr. Tsang, one thing that can slow the degradation of my retinas is lactic acid, which occurs naturally in the body. How do I get my body to create more of it? By working out, of course! So, I went on social media, discovered Athlean-X.com, and now I’m a member. I gotta get Swole for Sight, yo! Follow my social media for that. You can find links at the top of this page.
I’m also supplementing my diet with vitamins and herbs to keep the migraines at bay and to reduce the deterioration of my eyesight. I take Feverfew for my migraines and Lutein and Bilberry for my vision. NAC has shown some promising results in studies in curtailing RP patients’ loss of vision.
I’m also going to keep up with this blog. Hopefully, it will reach a few people out there who want to understand more about RP. The good news is I don’t need a white cane yet, and I still have pretty decent vision, but that will change. When that happens, I’m sure I’ll have some new and maybe fascinating things to say about it.
But for now, cheers!
