Coming out of the woodwork

As we all have guessed, Michael doesn’t get out much. Yet, it is really starting to amaze me how, when he does go out, he starts talking to random strangers about what has happened to him and they either know someone or are directly affected by this same family of drugs. For those of you reading this who know Michael personally, you know that with his charisma- something which I have always been a bit jealous of- he instantly disarms, relates to, and then becomes insta-friends with complete strangers. Lately, his world revolves around his condition. This only makes him a laser pointed at a target. And now, when he talks, he finds that people being hurt by this drug are coming out of the woodwork.

Most recently, Michael- who is in Florida for an office visit with one of the best neurologists in the country, Dr. David Perlmutter- started talking to a couple a few rooms away from where he was staying in his hotel. As they started to learn more, there was an eerie acknowledging of all the medical details. Usually terms like neuropathy have to be defined. The couple, though, recognized many of Michael’s symptoms, because the young lady had been experiencing a lot of the same ones for 5 years. Though not nearly as severe, she experienced autonomic nervous system damage, fatigue, cognitive issues, and neuropathic pain. When Michael asked, “Did you take an antibiotic before this started happening?”, she was surprised, for they had not pieced together that the Cipro she had taken to treat her bronchitis was what caused her 5 yrs of adverse reactions. This couple was from Indiana. They met in Florida. Michael then gave them as many websites as he could to educate them for their new battle, which now has a face. I do not believe this meeting was a coincidence.

This next story I found quite moving when I first heard it and am only now ready to share it.

Michael’s father, who does online gaming told Michael’s story to a man he plays with over the computer. This man happened to live in Louisiana. Well, remember in April 2010, a little disaster known as the Deepwater Horizon oil spill happened in the Gulf of Mexico. This man was one of many fishermen who helped “clean up” those waters. Many of them reported respiratory distress due to the toxic fumes coming from the waters they were working long hours in. When this man heard Michael’s story, something struck a chord in him. He, as well as a large group of other fishermen, were prsecribed fluoroquinolones and steroids to treat their “respiratory distress”. He mentioned to Michael’s father how since then he has not felt quite the same- extremely tired, like his brain can’t work right…Here comes the moving part…This fisherman along with others who were given the same “treatment” stormed the doctor’s office and demanded they be put on something different because of what they knew this drug did to Michael. Can you imagine- you are a fisherman whose home waters have been destroyed because of big oil company negligence. You are forced to pick up this job cleaning the waters because it’s not like you can fish now. And then you are given this toxic drug that has the potential to ruin your life. What a way to kick a man when he’s down. In most sports that is considered illegal.

There have been many other people since then that have recognized parts of Michael’s story as something happening to a loved one. Whenever Michael shares what happened to him- which is with anyone he meets- there is a connection. The landscaping man’s son, the cable guy’s uncle- anyone! 

When I hear him speak to people, what I see is someone who is finally becoming ready to share his story with the World in the hopes to save lives and affect change. And I think to myself, The drug companies don’t know who they messed with. Because even being in the condition that he is in everyday, when a fire is lit under this man’s a** he is powerful beyond measure.

Before this happened, I wouldn’t say I was very progressive or liberal about my political and social opinions. In fact, I’d call myself blissfully naive. I didn’t know the influence of pharmaceutical companies. I trusted anything a doctor told me. I believed in a system that I now see does not look after me.


Inside a quiet room


“…at my worst when I was stuck in that chair. I couldn’t move. I couldn’t talk. I could barely keep my head up and all I would do was stare at the patterns in the carpet just to make sure I was still in there and alert. I remembered where each stain was. I was scared to sleep. I was afraid I wouldn’t wake up if I did….”

As Michael talks about that period of months that happened less than a year after his first symptoms of poisoning began, you can hear him well up with tears. Remembering the period of months that he could barely walk- when even standing in one place was unreliable, and at the worst, when even talking seemed to take too much from his body- is an unbearable road to go down.

In those days, the quiet room at the back of our house was his prison. He isolated himself to protect his family from his constant suffering. He refused to fill the house with that kind of energy, and mustered up the biggest smile he could anytime we went back there to visit him. It sounds completely crazy. Why would a person who needed constant care be adament about being left alone for hours at a time? To live hearing distant voices laughing and playing and yet being so far removed and unable to participate in your own life….Is that a life? It was a prison. Truly his body was his prison and the quiet room contained it.

Michael had to relearn how to walk. He does so now, but under extreme concentration and only for short distances. Indeed, some of his physical abilities came back. He’s not using a wheelchair anymore and can stand erect without it appearing awkward.



   But his mental impairment is very present. Many times thoughout the day Michael must escape to a quiet area of the house because his brain has had too much. Even trying to field the many questions that a curious 4yr old shoots at him can be too overwhelming. Sometimes he goes out to the garage. Where we live now, he has a nicer den area on the other side of the house where he can lie down. Anywhere we go, he has to have this escape route so he can quiet his mind down again and rest. Unfortunately, this quiet room is not impenatrable to our son. When he wants to find daddy he knows exactly where to look. But usually, the quiet room is his sanctuary.

On a much deeper level though, his “quiet room” can be anywhere. Michael stands outside the garage a lot, taking in the sunshine, listening to the birds, staring at the mountains. He becomes so in tune with his environment that he can tell which trees the wind is blowing through by the difference in sound. Listening to him talk is like listening to someone who has practiced meditation all their life. Even more profound, Michael deals with his pain by “becoming friends” with it. Sometimes, lying silently he becomes very aware of where pain lives and moves throughout his body. He can pinpoint one specific type and track it, and breathe through it, and live in it. Not many people I know can say that when they feel pain, they want to get to know it. Masking pain or removing it is more the norm. It amazes me how, through this illness, Michael has found this place within himself that is peaceful, and silent, and strong. To be able to access that quiet room within, is the greatest and healthiest gift he has found for himself. 

Out of the darkness comes light…

It’s said that before you die, your life flashes before you.  For most of those first 500+ nights, I didn’t think I would live until morning.  Worse still, my mind was so heavily affected that I couldn’t articulate what was happening to me very well. I hardly understood it myself. And I was all alone…

All day and all night, I was stuck in a chair in a back room of the house. Unable to move, so many intense pains and sensations starting… all of them so far beyond anything I’ve ever felt. Once the heart issues started to become more intense (roughly May/June 09), when I would try to speak, almost immediately my heart had a very intense sharp and burning/clenching pain. That pain would increase in intensity as I continue to speak and subsides rather quickly when I stop speaking. Around the time of these videos, I lost my ability to speak entirely for nearly a month and had to type to communicate to Nikki. Shortly after that, my hands became too numb and I couldn’t control my fingers enough to type. I became locked in, unable to communicate in any way.

This still happens, although now it only happens when my baseline is low enough – which is frequent now, but not an everyday occurrence as it was. The heart pains I described in the video are the same that caused my heart issues in Sept – I leak Troponin when this happens which marks the death of heart tissue and beginnings of congestive heart failure.  The Mitochondrial damage explains this…
I am still very weak and have gotten significantly weaker in the last 12 mos.
 My mind was not right, I had an extremely difficult time thinking my way out of it. My mind was then (and still is) very slow, I was so confused. So detached. I would liken it to being in an awake coma of sorts. I knew what was going on around me, but the world was/is happening way too fast for me to process.
I still have all of the same issues. Thanks to the Glutathione IV’s the intensity has gone down somewhat. Now I can walk very short distances around the house and most of the time I can walk upright now until I hit the wall. Which doesn’t make too much effective difference in functional ability as compared to “normal” and my improvements are completely dependant on the Glutathione. But it’s enough of an improvement to make me grateful.
Since this began, I have been struggling to be able to write about it. I get very confused. I am having a very difficult time summarizing this in a way that I feel makes sense and accurately explains what it’s like to be in this body.

I want so much to be able to give those like me a place where they can read the experiences of someone going through the same thing. I cannot imagine what it would have done for me early on to be able to find that there were others like me. I just sat there and let this thing impose it’s will on me. 15+ long months where I was mostly bedridden/stuck in a chair. No way to get help as I saw it. I know there’s more out there like me… just sitting there. Taking it, trying hard to fight alone because they’re confused too.

Recently I began looking through my old logs and through all the scraps of paper I’ve written my scattered/random thoughts on. In the process I came across a bunch of videos that I didn’t recall making. I want to share them with you now with the hope that if you’ve been devastated by Levaquin as I have, that you’ll find solace and know you’re not alone. And most importantly, know you’re NOT crazy and that no matter what the Doctors initially tell you, this IS happening and you WILL find help.

These videos were taken during a time where I was experiencing what I now call “hitting the wall”. Once my body becomes exhausted enough as a whole, this is what happens to me still – although to a slightly lesser extent.  Some days are better than others.

There is much context I feel I have to add to describing what I was going through at the time so that what you’re about to see makes sense. But I’ve decided to just try to write whatever comes out.

Hopefully soon I will find it easier to describe in greater detail, but I think these videos speak for themselves. Because I was having a difficult time speaking clearly, I have also provided a transcript for each video.  But don’t just read. Watch. Turn the sound up, it’s hard to understand me…
Video transcript:  6 August, 2009 – 9:10 PM
I really hope you can hear this, my voice is mostly gone. Like Laryngitis – but I’m not sick with Laryngitis. Something’s pushing in my throat. The more I talk now, the more my heart really strains and hurts.  And I’m trying to record this now because the last hour or so, I think, I very rapidly became like this. Everything is real heavy in ways I’ve never felt before. Every bit of my body – everything – instead of just like arms and legs or whatever. It’s hard to move and…(unintelligible) – It’s almost as if my body is covered in lead, all – all of it. Like a suit.  My face is heavy, my skin is heavy. I’m very slow. Like moving through molasses kind of slow. And up until a little while ago, I wasn’t able to move myself at all… too heavy. Arms too heavy, my body too heavy.  What little I could move made my heart hurt so bad. Which is kinda how it’s been…
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Video transcript: 6 August, 2009 – 9:20 PM

(unintelligible) …


Even my Brain is slow.


… My chest hurts so bad.  Right here. Right here is where it really hurts. And my breathing is very shallow. You can see I can move my arms a little bit. But they end up flopping around like they do when they’re asleep.

 

The pain just got very sharp. Right here…

 

I should have made a lot more of these videos. There’s a lot of times like this. Mostly since the 23rd of June at Northwestern.  It’s been almost always like this. But I did have a brief period of improvement  from that, a few weeks ago. This is different. As it always is. It’s always worse somehow.

 

My actual eyeballs feel heavy. And I want to move my arms and body… I can move a little bit, but…

 

I don’t understand this. As you can see, I’m pretty calm about it. This is about as hyper as I get.  It’s all – clearly this is happening.

 

You just get kinda numb, you know? You don’t dwell on it, you just go with it. So I’m coping with it, not causing it. That just might be the hardest part of this whole thing. Doctors being lazy or arrogant.  Just throwing everything you tell them is wrong into the big abyss of “Neuropathy” – so they can go onto their next patient and not be challenged. They don’t like to be challenged.

 

Not that I ever really call the Dr much. I did for the heart thing, and the upper airway obstruction that I didn’t just develop.  It just took me almost 8 weeks to get a Dr to believe and listen for themselves.

 

I’ll make another one…(video)
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I still have a long way to go. I require a lot of care and have a Nurse that comes 3 times per week to help me.  But if you take the time to enjoy what you DO have, you will find a way to live through it all. In my case, my Son has been my reason. Looking at these videos is hard for me, I can’t believe I lived through it (so far). There is strength in momentum. Get some. One giant lesson I’ve learned through this is that it’s exponentially more important to feel strong than it is to be strong. It is up to you to find your strength in the love around you. Hold on with both hands and never let go.

Love and peace to you all,
Michael

Today is a typical day

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.