Cliff notes to a Life

Hello.

I am very ill and am fighting for my life. On 06 October 2008, I woke up unable to feel my legs. That was the best day I’ve had since. It went downhill. Fast.
As I write this, I am in brutal and unrelenting pain. In every single area of my body. Even my face – my eyeballs too. I have been in intense pain every single second since it began. Ranging from a 5/10 to 10/10, usually closer to the latter – every second. I am largely unable to do anything physically as I am too weak. Mentally, writing this is taking extraordinary effort (read below).

Our family’s home was lost to foreclosure. Car was repossessed. Were homeless and separated at one point. COBRA insurance expired. Cannot afford the medications I need for even minimal function, the Dr visits, the Hyperbaric Oxygen treatments I require, etc etc.

BUT… I fight. With the heart of a giant, I fought for my life. Every second of these last 1,021 days. It nearly killed me, but I refuse.  God himself will have to come get me. I will never, ever leave my Son.  Those of you who’ve known me for decades understand my conviction and understand the fury with which I’d fight for him. Aedan gives me the strength and courage I needed to save my own life, and the will to fight to get out of bed each day.

I am proud of the Man I have shown to be. And despite it all, I live a beautiful life.
________________________________________________________________________________________________________________________

I was prescribed the most prescribed Anti-Biotic, Levaquin, for a COUGH. Soon, a Nuclear Bomb went off in my body. Three days after I lost sensation in my legs, I went to the ER. Soon transferred to Rush University Medical Center for ‘elevated care’. In the Neurology wing’s ICU, I was told it was form of Peripheral Nerve Damage known as Guillian  Barre. That I would soon be paralyzed from the neck down & on life support. Days later, a new Dr. came in and discharged me saying I was having a panic attack. Really? I can hardly use my legs, numb/tingly…
I soon found myself outside the Medical System as no Dr I saw since couldn’t figure it out. 8 mos into it, I went to Mayo Clinic in Rochester. They found the Autonomic Nervous System damage right away. They all but refused to believe all the other issues I was listing were possibly happening. Even after their Psychologists examined me and told them it wasn’t in my head.
I fought, with a severely crippled mind to be heard, but was without Medical help entirely through some very scary and nearly fatal nights. But I never gave up.  It was only 6 weeks ago that the worst of it all was finally  diagnosed. This was a big deal to me to finally be able establish what had happened to me. I can now understand enough to be able to relay some of what’s happening to me.

Cliff Notes of what has happened to me:

Levaquin punctured a hole in my blood brain barrier (noted on 09 Oct 2008) and caused systemic damage. Including but not at all a complete list:
·         Brain Damage
·         Mitochondrial Damage (Toxic) – Mitochondria is  responsible for providing energy to every cell in your body. When damaged, it’s like you’re a battery that discharges too fast and/or does not charge. Your Brain has by far the largest demand on Mitochondria
·         Autonomic Nervous System damage – This is the ‘Traffic Cop’ of your body. It can manifest symptoms and/or life threatening disfunctions literally anywhere in the body.
·         Neuro-Psychological disturbances. De-Personalization and De-Realization. Substantial Cognitive issues.
·         Irregular Heartbeat, palpitations.
·         Muscle wasting (substantial)
·         Musculoskeletal damage, connective tissue damage
·         Visual Disturbances including Double and Blurry vision. Each eye blurs independent of each other and change constantly, at different rates.
·         Skin damage.
·         Circulation issues
·         Vast Neuro-Muscular issues

I have issues system wide. Including my GI, Cardiac/Circulatory, Renal, Dermatologic, Visual, Hearing, Respiratory, even Endocrine systems. All of these issues and many many more are all happening at the same time. Sadly, this is NOT as rare as we are led to believe.

I am easily confused and disoriented. I am extremely forgetful, in fact a couple days ago I lost count several times when trying to count out 4 cups of water. I am mostly unable to prepare meals for myself. I absolutely cannot multi-task at all, and can rarely complete a single task. Still to this day, the world is happening way too fast for me to process. I have difficulty thinking of what words to use and often slur my words when I do.
Although I get rare and short lived bits of strength and energy, physically I am very weak. I rarely am strong enough to leave the house with my family and have missed a great deal of Aedan’s first few years. I have watched my Son play and experience the world through pictures.  Without energy at the cellular level and the great loss of muscle, I am fragile at times. It goes far beyond tired, unlike anything any of us have experienced before.  At times I have been too weak to raise the fork to my mouth.

It was only until recently that doctors were able to conclude damage to my actual mitochondria- the parts of all cells that makes all energy for life Without them cells  die. My Mitochondrial DNA (MtDNA) is believed to have been damaged as well. MY DNA.

When the Mitochondria dysfunction becomes bad enough, besides physical weakness, one of the things that happen is my brain functions slow tremendously and I am quite often in what seems like a catatonic state. I have wanted so desperately to be able to communicate, reach out for help, talk to those who care for me. For almost 3 years. But I have been unable to even answer the phone most of the time.  Writing this has taken me many months and I intended to post something (anything) on my 1,000th  day, 3 July 2011.  I struggle for words and communication is extremely difficult for me.

This is a very condensed high level summary of events and how I am as of this writing. I have been far worse. The actual details and chain of events will leave you disgusted with the ‘Medical’ system in this country.

I have been through unfathomable torture, and to this day am severely disabled and in unrelenting, excruciating pain literally every single second.  BUT…

If I didn’t tell you, you wouldn’t know by looking at me. When I can stand, I stand tall and I stand proud. I don’t let the pain show, I don’t want Aedan to see me that way.  I have learned to handle pain, not letting it steal even one precious second I get. In the process learned true peace. I am truly grateful for every second of life I get, no matter how hard it is to use my body or mind. I soak up each moment I get with Aedan and truly live each one. I appreciate the beauty around me. The sounds of the birds, the sky. The smell of the air, the concert that the rustling leaves play when the wind blows.  Despite it all, I live a beautiful life.

Please, do not feel sorry for me. I don’t. Amazingly, I have not once felt sorry for myself. Not for a single second of the 86,400,000 seconds as of my 1000 day. I am a demonstration of what the human spirit is capable of.  My intention in writing is to finally be able to try my best  to simply communicate what has happened to me to any and all who care about me. I have fought this alone, no Doctor I could call. No ER that could help. I so badly wanted to reach out for the help I so desperately still need. I just simply could not until now.

I hope to be able to write more soon. But until then, know that I will never, ever give up.

Love and Peace to you all. Michael

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