Today I finally got up the guts to take my Inherited Retinal Degeneration or (IRD) DNA test. It wasn’t like the test in my master’s classes, pushing me to study for endless hours and lose sleep. Instead, it was simple, almost too simple. It seems weird that I can rub the inside of my cheeks with a cotton swab to better understand my personal genetic structure, and potentially give me answers about the future of my common symptoms, including, “night or color blindness, tunnel vision and subsequent progression to complete blindness”.

And I’m not sure why, but my medicine for my trigeminal neuralgia hasn’t even touched the pain this week after mostly stopping it for almost three weeks. I was getting so hopeful that the anti-seizure medicine would take care of that. I guess I need to up the dose (?) but I really hate medication, so I am fighting that choice. But honestly, as I sit here typing and going through the 5th (ish) episode today, I know I have to do something. Today I was in a meeting for the Chamber of Commerce, welcoming the new board members for 2022, and it was all I could do to keep a smile on my face while the searing pain went on for about 15 minutes.

I am very grateful for the classes I’ve taken about grounding, energy, meditation, and intuition over the past few years. It is the only thing that has helped me manage the excruciating pain. Literally, it hurts so bad that my body releases beads of sweat from pores all over my body. When I am able to implement my meditation tools, I can handle it a lot better. Then there are the times when I just pace, tap my leg as fast as I can, lean over and drool, and/or try to focus on something else.

I’m also trying to notice what things set it off. So far, I have noticed that cold food triggers it about thirty minutes after I finish eating. Ice cream is death for me, now. I’m testing my theory that spicy foods set it off because I ate spicy food the past few days and I struggled both times. Sometimes, brushing my teeth or working out has triggered my trigeminal nerve. The most annoying instances are when I start thinking about the pain and it starts the pain.

I’ve never blogged about personal health stuff, really, but it is helping me to record and understand my situation. I am really not into complaining, but as I said on my Instagram story today, I’m typically the one trying to lift others and I guess it’s my turn to let others lift me. The funny thing is, I don’t even want people to really know what’s going on, so I have to ask myself the question, ‘Why do I tell people on video and on my blog if I don’t want people to worry about me?’

I’ve lived a life of retreating when I go through hard times, and honestly, my health stuff is only a part of my life and there is plenty of stress elsewhere. But if people can see that someone who is naturally¬† UP and YELLOW, WOO, ENFP, and all those personality tendencies can feel frustrated and down just like everyone else, then hopefully it helps to normalize emotions. We all feel up and down during different times in our life.

I believe that the most important part of the equation is getting back up. It’s not easy all the time, but it is always worth it. I’ve studied resilience a lot in school, and I’ve learned that one of the strongest tools to help us fight back during challenging times is to remember the instances in our past when we made it through hard times. We can draw on that power and proof that we are stronger than we give ourselves credit for.

I really don’t think my recent health problems are a major problem. It is hard YES it is hard, but it is small in the grand scheme of things. We can pretty much plan on aging being a struggle in one way or another because as they say, none of us gets out alive! We all get to face change and growth.

The thought I want to end tonight is that life is good. Life is so damn hard, and it is good. And in the end, nobody else can save us. We have to become strong enough on our own and take better care of our needs. And by all means, surround ourselves with people who are willing to hang in through our good and bad.

I’m grateful for a husband who has repeatedly reminded me that he can, “hire a driver to take us around the town when neither of us can see anymore.” Today I found a note by my bed that read, “Yours are the sweetest eyes I’ve ever seen.” a quote by Bernie Taupin and he wrote by it “no matter what happens”.¬† He set my reader glasses by the note so I could see them…haha…

Anyway, have a good night, if for some reason you are still reading this very long post. I do have so many things I can share but right now, I need to speak truth. And when I am ready, I’ll fight like hell to reverse my diagnosis!¬† At least, I need to eat healthy enough that I am helping my situation and not making it worse. Also, (PS), I love my Peloton bike, but we can talk about that on another day.