A Sock Monkey saved me o__O

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1

I have a rather strange, somewhat scary, maybe not so inspirational, but in the end happy story about my fight with that scoundrel GBS.

I was that guy that never missed work and took every overtime shift offered to help make ends meet to help my family of three. I am a single Dad, parent to 2 daughters, whom at the time of my onset to the affliction were both just starting High School (9th, 10th grades).

In the beginning I noticed back pain that was mild at first then so excruciating I had to wear a brace and take prescribed muscle relaxer meds. Then one day while hanging action figures on the wall (toy collector) I fainted or passed out and fell slicing the back of my head open. I woke up dizzy and bewildered and scared but did not seek medical attention. The next black out was in the shower, I woke up on the floor, cold water raining down on me (all the hot water used up). Then once again at work I passed out and fainted there and after that I drove myself to Urgent Care. (My Supervisor got into a bit of trouble for allowing me to drive myself after that incident lol). The Dr's Nurses couldn't find anything wrong with me at the time. My medical history was basically just Asthma at the time. I was given IV saline and a breathing treatment of albuterol.

Over the next several weeks I experienced flu like symptoms in addition to more spontaneous black out fainting spells. Slight fevers, chills, breathing issues, again the back pain, and I visited my Primary Dr. several times and was given Prednisone, Albuterol, a portable Nebulizer and I don't recall the name of the pill but a muscle relaxer. Nothing seemed to help the condition only got worse.

On Memorial Day weekend of 2010 I became very ill. High fever, chills with sweats, harsh coughing producing phlegm and a new symptom. When I tried to stand up my knees buckled before me and I could no longer stand. I panicked and called my Mom at 0130am on Memorial Day and she drove me to the ER.

It was a sardine sandwich of ills and ailments squeezed into the ER. I was helped into a chair and waited a long time until...

I passed out again, fell to the floor and was rushed in immediately. When i woke up I was sitting in bed, it was near 12 hours later, my Mom and both daughters were there. My daughter asked if I was hungry I said yes but could barely move my arms they felt very heavy and a strange sensation was creeping up my feet and I couldn't move my legs. My daughter fed me pudding then a drink and I recall a Dr walking by asking why I was being lazy and not feeding myself. My Mom flipped out and screamed he can't move. Moments later the paralysis went up my diaphragm and I remember blacking out again and later learned I stopped breathing.

Because I was in the ER efforts were made to resuscitate me. At the time GBS was not diagnosed and would not be for several weeks of tests. I was trached and kept alive with an assortment of machines for the next 6 weeks.

(To be continued. Not sure if there is a character cut off so I'll reply and continue.)

2

NDE.

I am not a super religious person and don't want to bring up religion in this discussion but a near death experience does not necessarily have to be associated with religion. I could fill hundreds of pages of what I experienced during my own personal NDE because it was as if time no longer mattered and all the memories of what I experienced seemed to have been experienced over the course of over 50 years of time.

It was not a pleasurable experience for me. No light at the end of the tunnel. It was dark, scary, and very creepy. Enough of the Anne Rice presentation, back to the story.

I awakened several weeks later bewildered and frightened. I was in complete paralysis. I could only move my eyelids a sliver to vaguely see I was in a hospital with a gaggle of tubes connected to me. The Nurses and Doctors in the ICU were very friendly, helpful, and loving people who genuinely cared about the people they cared for. It was Grossmont Hospital ICU in La Mesa, CA. Over the course of the next few days I learned about GBS or was rather told what had happened to me because I could not answer anyone or move. They were hoping and believing I understood what was happening around me. It was a very strange experience being fully aware of my surroundings but not being able to communicate in any way. The way I was spoken to was like a child, or perhaps somewhat with limited mental faculties. It was both amusing and frustrating to say the least. I was not scared after being visited by a young Thai RN who visited me and told me she was a survivor of GBS. She instilled in me at that moment the courage and will to continue fighting with a glimmer of hope somewhere on the horizon.

A silly aside. My family, we are big fans of sock monkeys. In particular two sock monkeys named Munchies and Bananaz or Nanaz for short. We took them everywhere, in purses, backpacks, carry bags, etc and treated them like members of the family. We had a family vacation to a gaming convention in Anaheim CA called Blizzcon where Munchies sat on the Lich Kings lap and took pictures with AMD's Ruby and other celebrities including the cast of 'The Guild.' Yes some people will read this and say this guy is bonkers! But before you dismiss Munchies... he has palled around with the likes of NOFX, Misfits, Parachute, Amanda Palmer, Juicehead, Walk Off The Earth, and many others... :-)

During my stay in the ICU my daughters brought both Munchies and Bananaz to the hospital to stay with me and keep me company. It gets very lonely living in a hospital environment. Days seem to last an eternity and I was fully awake and aware the entire time yet some people were skeptical and this was evident in their behavior. I heard some really crazy racy things from CNA's and Nurses when they chatted thinking I was dead meat... o__O

Then I was informed I could no longer stay in the ICU and would be transferred to a Sub Acute facility. My family made all these decisions because I was not able to even communicate a single word or movement. It's a very scary proposition to know your entire life was no longer in your hands.

(To be cont.)

3

I was transferred by Ambulance to a Sub Acute hospital. That was one very scary and bumpy ride. I was leaving a comfortable environment and heading into what I would experience to be the most troubling, torturous, fright filled, hopeless and abusive place I had ever been in my life. For 18 months what I experienced there was a literal house of horrors.

Although I recovered very slowly there eventually later able to communicate with slight finger tap gestures, for several months I was a fully aware "piece of meat." Ritually abused by some of the CNA staff. They played games with me pulling my body off the edge of the bed so that my head dangled off the edge and laughed while doing so. I was slapped, slammed, abusively handled. Fondled (yes in that way). A pair of CNA's ritualistically performed sex rituals with my lifeless hand thinking I was not aware. I heard everything. I saw everything.

Also my breathing tube was randomly disconnected over 50 times to the point it was a common occurrence. I was gasping and suffocating and when over a minute later the alarm kicked in it was plugged back in. Sometimes the alarm never went off and I passed out due to not being able to breathe and by a gift of chance someone happened to notice saving me at the last second, and that wasn't a one time thing. There was a bleak period there where I tried my best to commit suicide by holding my breath but only passed out to awaken later, it was bad, very very bad. There were literally hundreds of incidents of abuse many which were commuicated via finger taps on an alphabet chart but not a single person at that hospital believed me. I have Memo log books filled with cryptic messages asking my family to help me every time they visited me and they did try. >__<

This period in my life scarred me for a lifetime. I continue to have nightmares of being paralyzed and abused waking up in frightful sweats.

It continued to the day I was finally transferred out. Complaining seemed to only make things worse for me I had to get out of there. My family transferred me to a rehabilitation hospital in Santee CA, where in the beginning I trusted no one and was admittedly a very difficult patient having experienced so much trauma. It was there where I finally began to heal, feel loved and return that love and trust in others. Upon arriving I had just been weened off the Ventilator but had very limited movement and every movement required aid and every transfer required a sling or two guys lifting me. Upon leaving I was able to transfer in and out of bed, on/off the toilet, in and out of a wheelchair on my own using a sliding board. To this day over 5 years later I have not recovered my ability to walk but for the most part can do things independently. I have suffered much and continue to suffer but want to do what I can to help others with GBS overcome whatever obstacles stand in their way, hopefully towards a full recovery. Thank you for reading.

PS.) Hey what about those sock monkeys? How did they save you? It was a lonely scary existence in particular that very stark period in my life. My Monkeys were there through it all and for some reason unbeknownst to me I credit them with saving me, keeping me sane, and being my little buddies when no one else was around. :-)

4

Doh!

I forgot to mention. Just prior to my first strange symptoms I had my very first flu shot. I always avoided them not because I was against them but because I rarely ever got sick. I had perfect attendance at work for many years straight. I have seen several Dr.'s and they attribute the flu shot as the cause of my case of GBS.

Also a few particulars about my recovery timeline.

I was in the ER a few days followed by ICU for 6 weeks, then 18 months in the Sub-Acute where I was hooked up to a Vent to breathe, a gastric tube in my stomach that fed me liquid food, and catheters for waste. I had a pick line on my arm for meds and saline. I looked like an anime horror cartoon with tubes all over my body like I was plugged into the Matrix. After weening off the vent I was in a Nursing Home for over 2 years.

Unfortunately I still haven't recovered. It gets depressing and sometimes you just don't want to wake up but I am here to help others with GBS if need be.

5

Your story is amazing! I am so impressed with your strong determination and great attitude during and after such a trying time. Your children are so lucky to have you in their life. I bet that was tough for them as well. I had such a mild case compared to yours though it hasn't felt so mild but I can relate. When I lost my speech, I had my husband rush me through the night to an educational hospital three hours away because my local hospital had failed to address my medical concerns and I kept getting worse. When I got there, I was spoken to like a child with limited mental abilities, told nothing was wrong, that I was doing this on purpose, and sent home where I cried in the back seat holding my head and suffering with tremendous pain and pressure that no one should have to endure without medical assistance. I ended up in the local hospital the next day and treated worse by the doctor there. I was never paralyzed and that was horrible how you were mistreated. I did have someone mistreat me too once during this and though it was not the level of abuse that you endured, it still bothered me. They had me though because I was labeled with anxiety and had no credibility. The most I felt I could do was move on, be stronger, and try to laugh back at the tough times. It's really only funny because it was so bad that you can't believe that people can get treated that way but it was scarier that a horror movie. I am still fighting as well to recover. I have not given up and will not. I have turned away from negatives in my life including negative doctors and medical staff. You are an inspiration. Good luck to you and thanks for sharing your story!

6

Thank you for the kind words tarhealing :-)

It's amazing the situation of being an alive and fully aware 'piece of meat.' It seemed to bring out the best in some and the worst in others. You really don't know what people are truly like in their hearts until being alone with them, they thinking you were oblivious to all that they did. I was not able to really go into detail about all the cruel things I experienced because it would probably be much too shocking to say publicly. My experience could definitely be a script to a very scary movie.

7

I understand the abuse of unkind doctors went to the emergency room twice and was told there was nothing wrong with me. (Not sure why this is double spacing)
It wasn’t till I called for medical transport and insisted I be taken to a trama center. I notice you and others here lived very active lives. I was once like that. Thankyou for sharing.