I’m a bit late, but I’ve been very busy this past week with documentary footage. I have a goal ahead of me. I would like to have all of the interview footage transcribed by Oct. 26th, before I head back into teach for a week at Royal Caribbean. There is over 24 hours of footage and 15 mins = 1 hour of transcribing. Yikes, right!? I looked into a dictation device but it takes just as long, especially when voices overlap, or it spells things wrong, or it freezes, or it just can’t make out accents… so I get left with the old age typing it out.
I got about 37 hours done Friday-Friday since I sadly never got called into work. That has been another stressor. I was a substitute last school year and got some time in, enough to sort of break even with bills, but lately, I have just been eating into my savings. So, this past Friday, I started the process of switching to another school (I am with charter schools so it works differently than public), and it takes a few steps, but I’m hoping to be working by the end of this upcoming week.
Today, it marks one whole year of launching my website for the documentary, Preventable: Protectiong Our Largest Organ! I can’t believe an entire year has passed. I am filled with so much gratitude that so many people believed in me to do this. I may not have the project complete, but to know I was able to shoot all of this (and surviving through it all) means THE WORLD 🌍!
But, on to the update!
Physically, I have been up and down. The hurricane that came through Florida really threw my nerves into a twist. Emotionally, I was also dealing with some personal things so that, too, can play a role in our skin.
I have also been Vegan eating for 2 months now to see how it works for my health. I haven’t seen a change, only in my waist size 😩, so I may switch it up. There is so much to think about, especially when it comes to nitric oxide lives, which could be playing a game as well. I know my NO methylation side is impaired, which means I probably carry higher amounts that normal in my body. So, with a vegan diet, you eat more vegetables, which is great, but things like spinach and arugula, and some other leafy greens, carry the high nitric oxide supplementation for the body. What do I love the most and have in my fridge? Arugala lol or rocket as it’s called in the UK. So, I have been trying to research different things. Now, this isn’t for TSW per say, but for my body, in general. I may add egg whites and small amounts of chicken back in, and perhaps tuna or seafood. Some meats, including red meats, carry higher levels of nitric oxide, so it’s good for me at the moment to steer clear of those. And, I don’t care to go back to dairy, ever.
I’ve been flaring a bit. I’ve always had some pretty constant areas, but I know for a good week after Hurricane Irma, my skin was very unhappy.
Also, Ive been having a very flaky scalp, mostly on my right side, which has been leading to hair loss. You can tell which side is more affected. It makes me antsy since I shaved my head Month 4 of this and would never want it to progress to that (which, I don’t think it will). But on the self-esteem, it’s not nice.
Again, arms and hands not exactly happy at 32 months, but hey, that’s life. Gotta keep trucking along.
My stomach has been affected as well. It comes and goes on there. Trying to figure out what triggers it, or if that it’s just what it is. And the sides of my mouth for a whole week were really red. Very frustrating.
Emotionally, it’s very hard to still be in this place, especially after this whole year passing and pretty much being in the same place. A lot of people try to tell you, “well, at least your aren’t where you were like the beginning.” Yeah, that’s a great thought, but when you are flirting around the 3 year mark, you’re kind of done living a half life. At least for me, that’s how it feels more and more. I wasn’t someone who held a desk job, or was just skirting by with the bare minimum, or who didn’t do much outside their home. I was a performer, and active, and loved to be out and about. I still don’t have much of that life so it gets a bit old, the whole ‘at least you aren’t were you used to be’ because, frankly, this limbo life sucks, too.
I am always grateful though, even in the rut of it all. But chronic illness is no joke. It plays a huge mental toll on you, especially after enduring it for so long and losing things along the way. So, if you are going through this, be gentle with yourself. Some days are going to be harder than others. And for those caring or are friends with a sufferer, remember that their skin is not the only thing that is healing.
Keep going strong. Muster through the rough days and celebrate the good! 💋
Love, B. R.
2 thoughts on “32 Months TSW”
Thank you so much for your posts. They are always eloquent and informative, and I really sympathize with your pain…but I’m so inspired by what you’re doing to raise awareness and finish the documentary! You are truly a warrior. I hate the limbo life too – I was/am a musician, though since I’ve had to take a leave of absence from school and move back in with my mom, that life feels very far away. I’m now considering a different career in music, something where I won’t be performing as much, if at all. It is so frustrating to make concessions to this illness, and hard not to feel cheated. I hope things start moving faster for you healing-wise, and that something starts to help!!
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I feel for you so much. You’re right about the concessions and having to change things around because of our condition. But one day, we will see the ultimate gains of this