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…


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)

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,

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