September brought a long awaited visit from my mommy. The current state of the world makes everything unnecessarily complicated. The week went too fast but we were so happy she was here.

Wk 4…. PALILA Hawaiian forest bird

I completed a watercolor challenge which I have not been drawn to do in sometime. Just one a week instead of one a day but I’m already in for next months one-a-day on all things fall!! I love fall. The weather suits me.

I completed two oil paintings. Sunflowers! They were a surprise in our backyard this summer. I took hundreds of photos in which I set the composition for a painting… then I have to choose. I have sketched out a third sunflower painting. It is on my easel waiting for me to begin.

In the small victories I feel like me. But standing at an easel sets off a pain flare. But so does sitting, walking and laying down. So I rotate.

I let myself be inspired and taken away by my joy of painting. I’m gonna have to deal with the pain later anyway, might as well be in my meditative state of painting.

It’s not easy — constant pain with no real answers. The chiropractor has a machine that uses barometric pressure, yes weather pressure, to beat me up. The treatment is done on my lower back and upper glutes. It doesn’t hurt – maybe a little rubber band snap over and over but that is nothing. It may be SFN killed those nerves and I just don’t feel it. Thing is, later that day and overnight I am in all sorts of pain. I can’t get comfortable and two weeks in a row I didn’t sleep…at all. This week he only did one side. I had an allergic reaction to an injectable medication in my left hip/glute. It caused injection site pain along with immense swelling, nerve irritation that went right down to my ankle and neuropathic itch. Things going wrong gets exhausting. I adapt and overcome. This crazy machine might destroy my body for 36 hours but a few days later the muscle feels mildly but noticeably different. Slowly but surely it is initiating healing! I currently can’t bend at my hips. Try it. Bend over, sit down, Lie down — but don’t bend your hips at all – it is throwing everything off. It is not the only thing in constant pain but it is the one in the forefront throwing me off balance.

I am very aware that my pain is not the same as every chronically ill person in the worlds and yet the majority of the “spoonie crew” think they must all love “spoon theory” (I can’t stand it – eye-roll) and that they must all think exactly the same.

By the ninth month of the year I am beyond tired of online chronic illness pages – yes, I just ignore or delete them but there are ones that have resonated with me with truth and humor but have gotten out of hand. Of course it relates to the “plandemic” and blaming able-bodied people for not caring and that “they“ all chronically ill/disabled people will die due to ableists. This narrative is exhausting and harmful. If I dare to post along with a few others to say no this is not correct, this is not my life, this is not my experience, I get attacked. No worries, I can take.

Dear chronically ill people, we are not all the same! Negative Posts are not the least bit helpful and full of anger and fear to boot.

Stop living in fear! You’re already sick so why are you making it worse?

When someone has fear, show them kindness, compassion and grace. Fear helps no one. The chronic whiner does not need a choir of whiners. 

Pull yourself up by your bootstraps or your slipper socks and find some joy.

I believe that having a few chronic illness acquaintances is a good thing but the negativity mob is harmful — all the way to the doctors office.

The healthy people posts are more inspiring. They do leave people like me out but I am more than my pain so why not learn something new. Some days I have to give into the pain and rest. Some days I just squeeze some paint out onto the pallet and just begin.

Why don’t people just begin instead of complaining?

Deep breathing works. Learn a few techniques.

Try some chair yoga. I’ve recently found one that actually accommodates someone with my issues. I can’t do the 10 minute sessions every day but every other day-ish is better than nothing.

Go for a walk. I can’t go more than 3000 steps without exasperating my pain level. Maybe your goal is 500 steps. On bad days I have between 150 and 300 steps. That’s only because I have to get to the bathroom on occasion. Let healthy people take 10k to 20k steps. Good for them but I’m not them so I don’t compare myself.

Sketch, draw, paints, journal, read a book — can’t read a book due to migraine or inability to hold a book, try an audiobook. I like Chirp. Great sales and no membership required.

Watch a silly show or movie and laugh.

Eat chocolate – my preference has become a 90% dark chocolate mint bar. It’s an acquired taste because everything else is so sweet but it’s actually very enjoyable.

Take a shower and put on clean pajamas. A typical day is changing from pajamas to clean pajamas. I have no issue with this. There are theories on getting “dressed” but just to lay at home …why be more uncomfortable. There’s certainly silly advice out there. Take it with a mindful grain of salt.

The world is a mess. I am my own mess spinning on my axis. One thing I know is there are too many lies and too much bullying going on and you never know who you may harm. 

Choose your words wisely.

Every year I withdraw more and more from what one may call an advocate. Not that I’m not an advocate for myself and for others, I am, but I don’t fit their narrative. I find as more diagnoses are made and new treatments tried the most I can do is tell my story. There’s more to life than illness but illness does engulf your life. There’s no shame in that. It does define the parameters of my life but I’m going to push the boundaries of those parameters everyday. No, scratch that, not everyday because somedays I just need to rest.

I will always continue to strive for better health. I will always continue to support others. I will always be creative, it is my nature. And if you know me, I’m gonna call you out when you’re wrong, when you’re hurting someone else and when you just need to hear the truth. Makes me very unlikable …the whole truth thing. I make no apologies.