Life with Chronic Neurological Issues – Always in ER Mode

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Growing up if you asked me where I thought I would be when I was 41 my answer would not have been living a life of daily torture.  I probably would have told you how I was going to be a veterinarian or possibly a doctor. I also would have told you of my great plans to save all the sick and homeless animals in the world and give them a special place to call home.  I wanted to create a sanctuary.  I might have even told you about my dreams to have a restaurant and delight people with my creative culinary gifts. Make no mistake I had grand plans to be able to help people and animals in my lifetime in various ways.  But as it turns out my path in life has turned out to be a medical mystery and a guinea pig.   Over the past 14 years I have been in a cycle that won’t stop.  My life has been a revolving circle jerk of scoliosis, back injuries, chronic back pain, chronic neck pain, and then the diagnosis of two brain tumors.  A neurosurgeon’s assistant once told me “basically your central nervous system is fucked up.”  She was trying to explain the logic behind why I have so many complex health issues that are hard to diagnose or treat.  She said it better than any doctor has so far.

 

As I’m writing this I’m fighting the urge to head to the ER due to some severe pain and stiffness in my neck combined with horrible head pain/pressure and headaches.  WebMD tells me I could have at least 99 issues some of which are meningitis, brain tumor, headache, migraine, muscle strain, cervical stenosis and so many more that are scary.   I am a brain tumor patient so everything is more complicated. We removed the Acoustic Neuroma but I still have the Meningioma and a slew of issues left over from the AN as well as brain surgery itself.  Shortly after my brain surgery I needed a Cervical Spinal Fusion to keep me from being paralyzed.  We discovered that my cervical spinal cord (neck) was being compressed.  I was starting to have major issues and early signs of being close to paralyzed.  Brain surgery alone was a nightmare and hard as hell. I’m 20 months post op and still not recovered. But to combine it with a major cervical spinal fusion well that’s just a CNS (central nervous system) cluster fuck!  Your CNS is your brain, spine, spinal cord and all the nerves combined.  It is the most important thing in your body because without it you die or all your organs and bodily functions don’t work.  Think of it as a highway that branches off to various parts of your body.  For a healthy person with no issues in their spine or brain they will have an efficient body that heals itself and functions properly.  For someone like me with a major traffic jam in my CNS well nothing works right.  Anywhere!

 

it never ends

Daily life is frustrating and painful for me.  Since I injured my lower back 14 years ago I have been in constant pain, agony and suffering.  I have had numerous major surgeries on my spine, neck and now brain. And those surgeries have created other symptoms or problems. Most days I am trying to figure out what the symptoms of the day mean or could be. I have decent days occasionally where I feel human.  But most days I have horrible chronic pain in my low back, neck and often my head due to chronic headaches of various kind. I am daily enduring so many symptoms it’s hard for my doctors to nail down a diagnosis.  So many of my conditions are made worse by other issues.  But basically, my entire brain and spine aren’t functioning properly so nothing in my body functions properly.  So today I am in what I call ER mode.  I am having symptoms that are very concerning that might be something deadly or could be nothing or they just can’t figure it out.  I must not only suffer through the horrible pain I’m having but to try to figure out if it’s worth wasting an entire day at the ER.  The place where they poke you with numerous needles, starve you to death and put you in a loud room with horribly bright lights and give you no answers.  I promise you this when you are in pain that is not what you want.  You want quiet, peace, and a comfy bed and maybe your favorite shows to binge on.  You don’t want to be poked and prodded and then wind up with no answers after its all over.  ER mode isn’t fun. It’s wasting my entire weekend because I can’t function.  I must wait and evaluate the necessity of going to the ER vs. waiting to see my doctor Monday.

 

When you have a brain tumor and are a post brain and spine surgery patient everything scares you.  If your toe hurts you worry something is happening in your brain or spinal cord that shouldn’t be.  It sparks a fear in you that no one understands except the people who battle neurological issues, the warriors.  When you combine the major brain issues I have with the spinal cord issues and back/neck pain issues every day can feel like an emergency.  Every little symptom can scare you.  You learn to know your body, listen to it and know what is normal.  You pretty much must become a doctor so you can keep up with the daily changes. Then you must communicate all these issues to all your doctors (I have many specialists) so they can process it and attempt to find answers.  But more times than not you are still left with no answers to all your problems.  Like I said before it’s a damn circle jerk! Living a life of constant pain, suffering and frustration is hard.  You don’t really worry about the little things in life anymore like what to wear, what your weekend plans are, who you are seeing, relationship drama, flat tires, traffic, work drama and stress. You are living a daily emergency.  You are in ER mode all the time. If you are lucky the planets will align properly, the weather won’t make your issues worse and you might have a few days where you can function enough to fully dress yourself and maybe run an errand.  But everything exhausts you.  Because living in constant ER mode is draining and taxing on your body and mind.  Then after the ER mode passes you just move on and try to keep functioning and being productive.  It’s a hard life and draining.  Most days I have no idea how I do it.  Friends and even strangers are always telling me how much they admire my strength.  I appreciate that so much. I don’t know if I would call this strength.  Some days I’m a total nutcase and a psychotic mess due to all this crap.  But it motivates me to hear it.  So thank you to all the people who see my struggle, my weaknesses, but also my courage to keep going knowing the suffering still awaits me.  Not knowing if it will ever get better.  People like that motivate me to fight because they see something in me that I often don’t.

 

suffering strong soul

 

“I don’t know why my path in life was chosen to be a circle jerk of daily suffering.  But I have learned to accept it was for some reason.  I must believe that reason is greater than just me.”

 

 

suffering quote

I don’t know why my path in life was chosen to be a circle jerk of daily suffering.  But I have learned to accept it was for some reason.  I must believe that reason is greater than just me.  The thing that keeps me going daily is that somehow all this suffering I endure will count.  That it will matter for someone else, if even one person.  Maybe my life as a medical mystery and guinea pig will one day be the thing that solves some neurological mystery.  So, for all of my fellow warriors who fight the daily battle of being in ER mode and constant worry.  Continue to be strong and brave.  Even when you want to give up, don’t!  Because in this great big universe that is easy to get lost in, you matter. You matter to someone and likely many.  Through our pain and suffering knowledge is gained by doctors and patients.  Through our strength and bravery, we motivate others.  Simply put you matter and I matter.  Even if that sole purpose is to help others feel not alone in their chronic health battles.  Maybe I won’t get to be a doctor or a veterinarian in my life or have that animal sanctuary.  The one thing I know I will do and am doing is help others. It may seem small most days. But even the smallest drop of water in an ocean creates a ripple.  And that is the one thing that gets me through all this suffering.

 

ripple quote mother teresa

 

 

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I’ll be back soon…”Gone surgerying”

So “Gone Surgerying” is kinda like gone fishing for those of us with chronic health issues. In sorry I’ve not been blogging lately. I have recently had another major surgery. A spinal fusion of my cervical spine/neck. Just recently home from hospital and highly medicated and exhausted. I will have more fun topics to discuss soon and get back at the blogging. I’m enjoying the meds for now and trying hard to stay awake long enough to watch one episode of Game of Thrones. That’s the bad part of the pain meds. They knock your ass out. Below is a diagram of the cervical spine fusion I had done. Not fun or pretty. And very painful. And also a picture of me in the hospital.  Hope you all are doing well and I will come up with some new posts very soon. Hugs to all my followers. 😄
This is an Anterior Cervical Discectomy and Fusion. Yeah my neck is quite sore. 

Surgery Drugs make you smile!