Category: My Daily Kryptonite

These might be about my fight each day, or about the ugly reality of my position. I don’t spend much energy thinking about or talking about this as energy is at a premium for me – I generally choose to spend my energy on the positive. But – sometimes a brother just has to get things off his chest and I know some of you reading will understand me here.

Today is a typical day

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Today is a typical day.

Nikki just took our little boy to the playground. And as always I am at home, too weak to go. I am always weak. Although I do get minor, short-lived bits of increased energy and ability, I am still weak and slow. When I over-do it by pushing my body to move or the more I try to do, the worse it gets. I will hit the wall sooner and with much more intensity. The pain I cause myself from forcing myself to move doesn’t go away with rest. It will last weeks or months, lowering my baseline. Two weeks ago I ‘over-did’ it by simply trying to mop the floor. That caused me to hit the wall hard.

I woke up this morning in pain, my legs are more intensely painful than the rest of my body. But I feel pain/discomfort all over my body. Even have sensations of numbness and slight tingles in my face. My arms are heavy, legs heavy. Mentally I feel like I’m in a daze of some sort, substantial brain fog. It varies in intensity and as the day goes on, the pain and sensations escalate and other issues like my eye sight and mental functions deteriorate.

At some point today I will hit the wall as I always do. When I hit the wall the pain and sensations become dramatically worse and I slow down as a whole. My eyes get tired easily, causing the blurred and doubled vision to become notably worse. My mind gets softer, I become even more easily confused and disoriented.  I have a much harder time walking and my movements become much more difficult and very slow.

As I write this, I feel that pain shooting down the back of both legs (I’m in a chair with 2 cushions) plus the flesh all over my body feels numb like it’s asleep. Face and eyes feel it too. Flesh is very noticeably tight, getting tighter. The tightening of my abs, chest and arms make me feel like I’m being pulled inward towards a fetal position.  My eyes feel numb, vision bouncing and doubling a little more. Burning painful sensation all over, like I have acid for blood. Intensely painful cramped muscles in legs and outer glutes. Same with shoulders, chest etc, but at a lower intensity than my lower body. My face too.

 

 

 

 

 

… he just kept singing…

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          It’s been about a year since we left Chicago, and despite the enormous hurdles of finding and trusting health care in a different location, we accomplished quite a bit. We finally proved his mitchondrial DNA damage. He is taking his L-glutathione IVs fairly regularly. We constantly work on his nutrition. We live a beautiful life despite the medical baggage. In the morning, we wake up to hot air balloons rising outside our window and Michael gets to be there as Aedan goes off to preschool for the first time.
         Last night, though, shook me out of any piece of mind I thought we built for ourselves.
         It started like any other night. Aedan’s bedtime meant that he, Dada, and I go to his room and lie with him for a while (read him a book, cuddle, sing him a song). He loves it when Michael sings to him. Lately, his favorite song is a sweet ballad by Pearl Jam titled “Just Breathe”

“Yes I understand that every life must end, aw huh,..
As we sit alone, I know someday we must go, aw huh,..
I’m a lucky man to count on both hands
The ones I love,..

Some folks just have one,
Others they got none, aw huh,..
Stay with me,..
Let’s just breathe.”                   

                                                      

                                                             

As Aedan drifted off to sleep Michael finished with the words,

“Nothing you would take,..
everything you gave.
Hold you till I die,..
Meet you on the other side.”

These last words will forever haunt us now, for little did I know, but halfway through that song Michael started having intense pain in his left arm followed by a clenching pain in his chest. Last night, while singing his little boy to bed, Michael started having a heart attack.

But this is the thing about Michael- he is so determined to live through those few sweet moments of life that he gets, he just kept singing. He sang to that last line- until he knew his son was sound asleep- before he crawled out of his bed and stumbled down the hallway.

When I found him, his heart rate was elevated to the point of an Olympic sprinter yet he said he was freezing. He put on two sweatshirts and quickly took aspirin. The thing that really got me scared though, was that HE suggested that I might have to call for an ambulance. For a person with normal medical needs this would be a no-brainer. But that’s where it got complicated. 

I remember a time when going to an emergency room was like date night. We would go to the best hospitals in Chicago, and yet, it always seemed like Michael knew more about the medicine of his own body than the attending physicians. The waxing and waning nature of mitochondrial damage would completely confuse doctors who needed concrete results. The fact that Michael, having dealt with this for so long, could actually talk and understand doctors using technical terms tested their own knowledge and conceit. There were many instances when he even had to explain that his medicine, L-glutathione, was a tripeptide, a chain of amino acids, and not some crazy drug with adverse side effects. Because of being failed so many times, we learned how to survive a hospital visit and not to just go and trust you will be seen and helped.

This was why we didn’t rush to call an ambulance right away.

We started weighing options instead. How could Michael explain what was happening with his heart along with the rest of his 3 yrs of rare medical conditions to a completely new doctor? Can we trust that someone good will be working Saturday night on Labor Day weekend? How can we be sure nothing that they do for his heart attack won’t aggravate his other symptoms? Soon the super intense pains started to go down- thank God for aspirin- leaving Michael with a different and scary, yet manageable, new sensation.

Lucky for him, this event stabilized enough to get him through the night. I would wake up just make sure he was still breathing. The next morning he checked himself into the ER where they ran blood labs and confirmed what he knew all along.

It is frightening to think you are on an uphill climb and then suddenly get hit with something so fatal that even if you do recover from the event you will still be set back years of struggle. 

It is a wake up call for us to stay diligent about every life choice Michael has to make now.

It is a testament to what makes up a man who despite mind-altering pain, will choose instead to lay there with his son and just keep singing until he knows his son is peacefully asleep. 

the strength of a father in a time of crisis- by Nicole

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          When I first became pregnant with our son, I’m pretty sure Michael blew a head gasket. Not for reasons like, he didn’t feel stable enough or that he didn’t think that I was the one with whom he’d love to have a family. But because of deep-rooted emotions, he was certain that he simply did not know how to be a good father. And yet, he refused to fail his son. I remember him going out of his way to keep me comfortable and at the same time being completely awkward when it came to Aedan. Every time his little baby cried in his arms or preferred me over him, I saw a look that I had never seen before in Michael. For a man that always succeeded, this devastated him and brought back all the painful memories that shook him to the core. In a very humbling way, I saw his weakness, open wounds, and fear.

          Sixteen months into his son’s life- just as Aedan began really walking and interacting- Michael was given his first dose of Levaquin coupled with a steroid pack. A routine sleep apnea surgery followed soon after and then the prescription for Avelox. October 6, 2008 is the day none of us will forget. On that day, he started feeling numbness and tingling in his legs. For a new father who was finally feeling more at ease, this ripped the ground right out from underneath him.

          Still, I have never seen a man so determined to raise his son with such joy, peace and safety. Aedan never came with us to the emergency rooms. He didn’t see the tears or feel the full impact of the stress. In those darkest moments when all Michael could do was sit in an armchair barely able to speak or move his arms, Michael went so far as to “hide out” in the back room because he was so adamant about not having Aedan see his daddy like that. 

          It was like a scene out of the movie “Life Is Beautiful”. Out of all the darkness that was around us, we surrounded that boy with a stable, loving, and playful house. Now 4yrs old, Aedan remembers the wheelchair. We would give him rides around the house on daddy’s lap. He knows about medicines and how daddy needs to rest sometimes. More importantly, he knows daddy has the best tickles, always knows the coolest music, and is brave and strong.

  
Michael always says he is giving his son front row seats to watch a good man live his life.

When it comes to being a father, I am proud to know that Aedan learns about bravery and strength and perseverance from this man who transcends suffering to live for something that pain cannot touch or take away- the loving eyes of his son

Cliff notes to a Life

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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

reflections from the darkness

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I am not Michael. I am not strong enough to be Michael. However, growing up in a family of 5 kids you learn to be loud…and observant. So I will be his voice when he is too weak to speak…or write. They say when you have found your soulmate you are of one mind. So I will let him talk through me. 

My name is Nicole Frantilla. I have been with Michael for over 10 years. We have a beautiful 4yr old son and a 65lb yellow Labrador lap dog.

And Michael… Michael suffers almost every adverse reaction from Levaquin and Avelox (toxic antibiotics given to him for a cough) listed on the black box warning. This has been going on for almost 3 years now. As far as we know, there is no recovery.

But Michael… Michael proves everyday how much suffering a body can take and yet his spirit makes him an unstoppable force of nature.

He is my inspiration and the reason why on the 1000th day from the start of this poisoning we promised each other to reach out to others and tell our story. After years of doctors, emergency rooms, pills, and cross-country trips we are able to speak out of hindsight about a story of courage, hypocrisy, tenacity, and pain.

This is a story I hope our son reads when he is older and is finally able to understand why daddy couldn’t play or be with him all those times. But that when he did, it lifted his soul so much he fought even harder and loved even deeper.