Author: admin

may 4, 2025

I didn’t realize writing this blog was going to be so exposing, and personal. But, you are either all in or all out. I believe the only way to truly have an effect on people is to be completely honest. That’s how you truly heal. So nothing will be sugar coated.

So, yesterday got a little hairy. Prior to surgery my hands were completely numb bilaterally. Now I feel pin pricks in my ring fingers and pinkies. Pain was pretty significant.., but these opioids make the bowels slow down and not perform as nicely, and make the important neurotransmitters in our gut not be released as well.

I wonder how many of us use alcohol,marijuana, anything to change our state of mind….so we don’t have to feel the pain? I think if we all looked a little deeper into ourselves we would connect to some kind of discomfort, pain that we’re trying to manage or cover. I don’t mean everyone…let me make that clear.

I remember looking to those narcotics because they made the sorrow, the hurt, the embarrassment, and the pain among other things decrease at least temporarily. No one wants to grow up being a drug addict. If you are in enough pain I believe you can and will do anything to stop it…even with those little white pills.

May 2, 2025

So it’s 6:30 am. I have to include in this that I am NOT using AI to write this! All my own words they are.

I have to be at the hospital at 7:30 I wanted to blog pre surgery and post surgery. My Blood Pressure is 162/107. This is probably nerves, somewhat physiological due to the circumstances of my spinal cord, and 100% because I’m a lunatic. Having worked in the OR gaining and learning almost too much. Everything is modest and prim and proper until the patients are intubated, then the circus begins…….

9:30 PM I’m home! Everything went well. Pain in check. I guess I was being a drama queen. lol Left with another really “cool” neck brace made of high density plastic right up to my chin around my neck, up to my mid hairline. So my hair is staying in so I don’t damage it.

The Milwaukee brace-so many memories. Made of two steel bars going down my back, wrapping around my mid section in plastic right down to my pelvic area, coming up the front with another beautiful steel bar, reaching around my neck to connect to the back with steel screws. The best I could compare it to was Quasimodo. Oh how I tried to hide the back of it with my hair, but it became shredded and broken off. My butterfly wings were shrinking, I was becoming more withdrawn, more full of anxiety, more full of embarrassment, I was not good enough anymore. And the pain, sitting in those damn school chairs. I could not concentrate. Nothing mattered except the way I looked. Then started my deep descent into controlling “SOMETHING”. Yes my body……..I finally had something I could control. I was going to become that butterfly. No one could tell me what to do anymore. Even though i was supposed to wear this monstrosity 7 days a week, 23 hours a day ……….change was ahead.

May 1, 2025

Well, tomorrow is my c5 c6 decompression and fusion. To say I’m scared would be an understatement. Please God, help me just one more day…..

Waking up each day in high school had been more and more of a challenge. The snooze button was becoming my awful friend. the stiff coldness of how the button felt was becoming too familiar, almost automatic. I couldn’t set my alarm for 2am, get up, and pretend I was ill. My parents were on to that, and it was too late. The walls in my room were closing in on me. Not only did I have to wear this barbaric metal contraption to school, but I was feeling this pain. Not physical pain that I was feeling, but this emotional dark hole, this void in my heart called Depression. Excruciating it had become. Who could I run to? I wanted to cry out, but it would only fall on deaf ears. Where could I run from? I could always take a couple shots of vodka to make the darkness lift briefly. I got used to the burning sensation as it poured down my throat. But that was only temporary. God, please make it stop! Get me through…….one more day……..

April, 30, 2025

I can’t imagine what it feels like to have your brain being taken over by disease…And there’s nothing you can do. Lewy Body disease. Those words stung and I knew it was the beginning of the end. As soon as they put my mother on a major tranquilizer/anti psychotic, I knew I was going to lose that vibrant, yes sometimes combative, personality. I had seen it in the group homes I had worked in. Zombies! They were all zombies. My mother became flat, no affect. I was starting to grieve that relationship I had once had with her. I was losing her

First day with my monstrous brace, It was bad… Bad as it could have ever been. Walking down the thin hallways I could feel the stares, hear the whispers. I was ugly, different. No One could see ME!–that underneath I was crying out, no one could comprehend the butterfly I was becoming. Under these thick metal bars, this plastic contraption, I began to sink into that dark hole. That was the day I lost myself.

April 29, 2025

So Today is Tuesday. Three more days before my surgery is to be performed. Please God …guide the surgeon’s hands. Let them take their time, have control, but mostly really care…

There’s a disconnect so many times between the doctor and patient. My orthopedic doctor that I had for my Scoliosis didn’t really “care”. I was just another number in a line of many terrified spectacles. Scoliosis was in its learning phase at that time. I remember taking off the stockinette that I wore underneath my brace. The bruises had gotten so bad, consisting of dark blue pale yellow markings – almost like a rainbow. “Those will lessen and dissipate ” claimed the doctor… Like it was no big deal. I was tired of sweating, smelling, and being in excruciating pain from the pressure points. Care? He hardly had that in his vocabulary. It was just another Tuesday to him.

April 28, 2025

I’m beginning to understand why I’ve felt so invisible. Shall we say it goes way back to age 12 at that moment…..

I was half naked. All I was wearing were my bra and underwear. Miscellaneous, nonchalant, and frivolous chatter filled the room. What was I a statue? The slaps of thick paste- wet paper mache molded around my body. Couldn’t they hear me? I was screaming inside. I was trying to get out but no one was hearing me. Tears streamed down my face with low silent sobs. They were trying to make light of it. This process-this process of making my Milwaukee brace for the future. It was cold and messy.
“It will take about 4-5 weeks to make the brace”. ….the technician blurted out. Oh My God. 4-5 weeks of my last freedom. But what about what “I” was feeling? Did it matter? No one was really listening or hearing my tears.

It took a while to transcend into the darkness of my eating disorder, but all I could think about at that moment was the Jelly Belly store right next to the Center. My dad had promised we could stop there on our way home.

Today I choose to be heard.

April 26th 2025

it’s so frustrating wanting to reach out to family and friends, but the push button on “go” doesn’t run. The intent is there but the motivation is silent. Oh there’s so much I wan.t to say, So I start…… I want to affect people in a positive way and if I can do that for just one person well then it’ll be worth it. I have to get over my feelings of isolation of not being good enough and stand up with my head high and my shoulders back, even if I have a crooked spine (scoliosis) thus my title Cindy with a Twist. I don’t know what a happy medium is, I always go over the top. This feeling of desperation of excellence has always ruled my life. Perfection Perfection Perfection,……, never enough.
In these pages I will write my lifelong story and my struggle with scoliosis addiction, an eating disorder, social phobia, and Depression.This won’t be a chronological structure but rather a diary of sorts bringing together my everyday struggles

April 27th 2025

So I’m thinking should I wait? Should I wait to write this all down before my decompression and fusion. This is all part of my scoliosis Journey. My bowels are random my blood pressure is up and down high and low. I think this is all due to the symptoms of the compression of my spinal cord. Couldn’t even bring Quincy to the dog park this morning because I wasn’t sure if I would have to use the bathroom. Got my Fantastic bottle right by the toilet….along with my scale ……

oh the memories ” Cindy do you know how much you weigh? You’re getting fat. Step on that scale “. My memories go back to my childhood. i was battling not only the scoliosis deformity thing but also my body developing. I was 13 and oh how I wanted to be loved how I wanted to be accepted it-And the right I gave him to make me feel bad, to make me feel like I was something less than subhuman. Not only did I have scoliosis, but I was disappointing him with the development of my body, with the development of the muscles of my body. It was like the skinnier I was the more love I got. The skinnier I was the more control I had. the skinnier I was then maybe the scoliosis would go away.

This is so hard and I’m terrified, Of course I am!! But I wanted to start writing my blog before my fusion and decompression of c5 c6. it was important to me that you had a glimpse inside what it was like before surgery, and then what it will be like after surgery. Oh what a story I have to tell…….