Rexy’s Ink

My first batch of kombucha is complete 🙌 It is organic and delicious! Kombucha is fermented tea that has probiotics, antioxidants, and organic acids. These can help the gut, immunity, and may help lower blood sugar. I bought the kit and I’ll link it below for anyone who may be interested. Now that I have the SCOBY, I can continue the batch indefinitely.

To update with my health, I am happy to say I am doing some better! I had a hospitalization for a few days and we adjusted medications. It has been a couple weeks and I am improving and decided to hold off on the craniectomy for as long as possible. My neurologist is one of a kind and I am so thankful I found him! He and my primary doctor saved my life and I will be forever grateful. I have been searching for 8 years for doctors to listen and I finally found them. Unfortunately, my neurologist is moving out of state, but I feel confident his colleague will be just as good.

I am so thankful for this progress and am hoping it continues. 🤞Thank you to everyone who has prayed for me and kept me in your thoughts. It is working. It has been a long road. 🙏💜

I found this dragonfly sitting outside my shop door shortly before I closed my shop. It had a broken wing and was no longer living when I found it but it had to be sitting there to bring me good luck. 🧚‍♀️ Today is a beautiful day! ☀️

I have not been out much due to my health and I needed this sunshine. I didn’t feel like going out today at all, but it was for my child so I did. I put real clothes on for the first time in a long time and pretended I felt better than I do. It’s not hard to mask and pretend things are fine. I’ve been doing it most of my life. Put on a smile and no one will ever know what you’re really going through. No one would ever know the pressure in my head has me so off balance I’m focusing hard on every step so I’m not walking too crooked. My head swirls inside randomly and I feel like I’ll fall over. My eyes see double no matter how hard I try to focus. The pressure in my ears makes it hard to hear everything clearly. My voice is hoarse so people can’t always hear me, a super fun side effect of chiari. 🤣 I’m weak and shaky and just want to lay down. The seats hurt my hips and back so badly no matter how many times I readjust. The electric shocks I feel in my hands and feet that make me want to jump out of my skin. But I sit there and smile and pretend I’m ok for as long as I can, and that is enough.

I feel like this dragonfly with a broken wing. I imagine it kept pushing its body and flying with its wounded wing, suffering, as long as it could until it just couldn’t anymore. My body is giving out on me and I resonate with this wounded warrior. I think it is beautiful and I’m keeping it as a reminder that even broken things are beautiful too. I was actually given a very sweet compliment today. I was told I was beautiful and it completely caught me off guard as I do not feel that way at all. It made my day and I greatly appreciated the compliment. They have no idea how much their kind words would lift my spirit.

I have an appointment with my neurosurgeon soon and I’m scheduling a craniectomy with duraplasty. They will be cutting a hole at the base of my skull to give my brain extra room and adding a patch to the brain covering to also give extra room. This is not a cure as there is none, but the goal is to slow progression of symptoms of chiari malformation. My neurologist says what he sees is 50/50 outcomes, it helps some and the others it makes them worse. I am so bad right now that I feel I don’t have any other option than to risk it and have the surgery. I never planned on this, ever. I always said there was no way I would have the surgery. But when you live in bed and have no quality of life at such a young age, well I think 45 is young 😜, it now becomes a risk I’m willing to take as this life is not living. I miss living life.

I considered making a page about my chiari journey. I could start a new page or I could change this one to that new journey. What are your thoughts? Would you like me to share that journey here? Or should I start a new and separate page as it is completely different than tattooing?

Thank you all for supporting my tattoo journey and being a light in my life. I hope everyone has been well. 🙏💜

I shut my shop down the end of last year due to my health but I found a great use for my stool! Cooking is extremely hard for me as it hurts to stand at the stove (or anywhere for that matter). I just started using it and it is helping me to have the ability to finish cooking a meal. The weakness and pain I experience is crushing. I am only remnants of my former self. I have always been so independent, strong, I build things, move heavy objects, and now, now I struggle to move light things and can’t perform a fraction of what I used to. It kills a part of my soul to see what domestic violence has done to my body and taken from me by activating my chiari malformation and neurological issues. It has stripped away so much of my strong identity. I no longer feel like me. I’m trying to discover what the new me is with these ongoing limitations.

This is a slow hell I wish on no one. I’m aware I look fine. And that’s the most insulting of it all. Not many believe what they can’t see. No one can see how hard it is to think, just how much energy it takes to try and focus and stay on track in a conversation, or the pressure in my head, you can’t see the weakness in my extremities, how do you quantify dizziness? And the crazy part is, I’ve worked since I was 14 but I keep getting denied for social security disability. It feels like such a slap in the face.

But today, I am thankful I can finish this meal and will make myself enjoy eating it. I will be thankful I was able to nourish my body with healthy food and appreciate the time I have with my kids.

I share all of this to show the side of disabled you may never see of others. And to let others dealing with these or other issues know that they are not alone. That there is nothing wrong with them. That it isn’t their fault. Life isn’t fair and we got the short end of the stick. It’s ok to be sad and feel that. We just can’t stay there forever. Here’s to finding a new normal and new adventure. 🥂 I can say, I do love an adventure! And I can also say, I know I have so many capabilities that I can somehow turn this mess into something worthwhile. I’m not sure what that looks like yet. But I have faith in myself that I can do anything I set my mind to. And that part is a little exciting, what can I do with such a disaster and turn it into something beautiful? Much love 🙏💜