I have been having a very rough time, more so than usual, these last 4-5 months. Especially the last 6-8 weeks, I have been locked in my shell again and communicating has been more difficult.

It is with a grateful yet heavy heart that I post this.

For years I had no idea what was happening to me (or what caused it) and my Doctors were equally as confused. I had issues and symptoms in so many systems at the same time and worse still, my mind was so heavily affected that I couldn’t understand, much less relay what was happening to me. In the early years, I held tightly onto the hope that I’d at least live long enough to tell my story and warn others. That time has finally come. On 30 March, CBS Denver aired my story.

I fought hard to make it to this moment, and to me it means more than I can say. I made it to a milestone, and I made it further than I ever thought I would. For over 6.5 years now I have lived with the understanding that I may not live until morning or that best case, I may never recover enough to speak intelligently about what is happening to me and/or get the help I desperately need. But with a lot of help, I did it. 

Both Nikki and my mother helped me prepare by role-playing which allowed me to practice getting some of the words out. I’m still in here somewhere, my intellect is mostly intact – albeit slow when my batteries drain lower. But I get lost easily and my brain seems to run out of power just like the rest of my body does. I had to use cue cards to keep myself on track and even then at times I still became confused when the reporter would ask questions. I liken my brain issues (some of them) to trying to watch a youtube video on dial-up. I know what I am trying to say and I start talking, but soon I reach the end of the buffered part of the video and it gets all choppy and stops. Or like someone is turning the sheet music too fast and I just draw a blank.

I knew there would be no way to convey the entire story of what these drugs can do to a human being – or what they’ve done to me. Very few of my issues/symptoms were covered in the interview, but I knew going into it that I’d only have 60 seconds or so to cover a tremendous amount of issues – that after 6.5 years I still don’t know how to summarize effectively. I’m grateful to have gotten as much out as I had, and I’m equally grateful that Kathy Walsh was so gentle and understanding. She took her time and didn’t rush me, her patience was and is deeply appreciated.

One of the questions she asked was “Do you think you’ve lost your ‘fight’?”… That’s where you see me choke up a little. A perfectly appropriate question I suppose, but it totally blind-sided me, I felt somewhat incensed by the implication that I’ve lost my “fight”. I’ve been through far too much torture, more than I’ll likely ever have words for. I will never lose my “fight”… I may lose the fight, but never my inner fight. My inner fight is the only thing I have control over anymore.  I’m a father now, my life no longer belongs to me. I fight for my son and I will never let him down.

I cannot thank Kathy Walsh and CBS enough for helping to get the word out and warn as many other as we can. It’s been my experience (echoed by many others) that most in positions of power do not want to discuss what a multi-billion dollar per year drug class actually does. It’s a minefield that few will step into. That includes Doctors, Politicians and I assumed media as well. Luckily the time has come for the truth to be told. Thank you Kathy and CBS for your efforts in warning the public about the serious dangers of this class of drugs.

My life has been hijacked by this drug. Coming up on 7 years later and I’m still battling intense progressive entire-body weakness, multi-system issues and an unimaginable amount of pain. I am a small fraction of the man I was before Levaquin.

Warning the public and educating prescribing/treating physicians is top priority. It is my hope that the exposure across the nation recently will save many lives. Thank you to all who have had the courage to come forward to tell their stories.

Your Brother in Fight,
Michael

We’ve moved the blog from Blogger to WordPress and we’re continuing to work on it. Organizing my thoughts or capturing them has been difficult at best. That’s why I wrote on scraps of paper, later used a recorder. But with help, I now have a place to write that makes sense to my brain a little bit.

When I have scattered thoughts I can easily organize them with tags and categories. This really helps me. Although I might not publish most of what I write, at least now I have a place to get the fragments out. If you’re reading this and your brain got whacked hard too, take note. With a private blog (just for me) I can start to get thoughts out and it organizes them for me. If I want to see what I wrote about my brain or heart over the years for example, I just click on the tag. It’s a big help to me so far. If you’re having similar cognitive issues, consider setting up a private blog that only you can see. Maybe you’ll find it easier to get thoughts out too.

I realize a lot of what I write – this included – will likely only make sense to those of you who suffer similar issues. The rest will think this sounds crazy. But we have to fight back in any way we can. It’s the only way.

Please, take the time to wander the site and bear with us as we update or tweak things a little. Just because it’s set up so I understand the organization doesn’t mean it’s readable to others – which is the whole point of the blog! So suggestions are always welcome.

I need to rest. I’ve been having a much harder time lately. I hope to post again soon.

Your Brother in Fight,

/M

From my Facebook post – 6 September 2013

Yesterday was a very rough day, some people’s souls are just so ugly.

As you know, I rarely get to leave the house. These last 10 months or so have been rough as I’ve experienced some fairly big setbacks, but I’ll get to that another time. 

Yesterday, Nikki had a root canal and had 2 wisdom teeth pulled. She was a mess, and it was time to pick Aedan up from school. There was no other option, so I drove her to the school. Besides the physical challenges I face daily, I would have been mentally unable to get through that on my own, it’s too much for me to process. The world still happens too fast and my mind and eyes both become quickly confused and overwhelmed. Just like many of you are experiencing.

I parked in a Handicapped space and made it about 50 yards to the door Aedan comes out of. For the last few days, the light tremors had come back. I was already shaking a bit. I made it back to the car, clearly having a difficult time. This was NOT one of the many times this might appear invisible to others. Once I got back to the car, there was an older woman walking around my car, clearly agitated. She asked who’s car it was. I responded that it was mine and I started to try to get in.

She stood in my way and demanded to know if I had a Handicap sticker/placard. I said no. I have permanent Handicap plates. Two of them in fact, front and back. I expected that to be the end of it. But apparently ugliness knows no bounds.

Instead of walking away after seeing my plates, this woman actually had the audacity to block me from getting into the car and proceeded to tell me how I took the spot of a little girl in a wheelchair and how that since I decided to park there, they had to wheel her further. She went on and on… I was stunned. 

In front of me was this woman who was hell-bent on badgering a clearly and severely handicapped man (with PERMANENT handicap plates) for parking in a Handicap spot.

First, my brain was too confused to respond. My brain knew what it wanted to say, but once again, I couldn’t speak. That in and of itself is a hugely frustrating part of this sickness. But worse still, is that instantly all my electrical pain, shakes, confusion, etc all became dramatically worse. I immediately found myself in an electrical storm of intense, shaky pain. This is how my body responds to even minor stressors now. I learned about stress/anger and it’s horrific effects within the first 6 weeks of becoming “floxed”. Now 5 years later, it still has the same effects. 

I wasn’t then and still am not too upset about what happened. I wasn’t even that upset at the time, just more in shock I suppose. But even minor stressors will trigger an instant and massive increase in all types of pain, mental/visual and mobility issues. Almost 24hrs later and I’m still shaking and trying to cope with the substantially increased difficulties and pain. Thankfully I’ve learned how to control even small amounts of anger most of the time. If I did allow myself to get angry or more upset than I had been, I would be in a far bigger physical nightmare than I am at the moment. 

This is less about that woman and more about what I’m left to deal with in the aftermath. She struck a chord though in that like the rest of you, I have fought to be believed since day 1. So to have yet another ignorant person insinuate that I’m fine struck a nerve I’m sure. Like most of you, having Doctors be entirely unwilling to believe that something this horrific can possibly happen has taken a toll. And I’m sure subconsciously that bothers me more than I realize. But the black and white of it is here I am, almost 24hrs after one person made brief but insensitive comments, I am paying dearly in tortuous pain and a frightening increase in symptom intensity. For no reason. 

I remember this, this is what I’d feel after every single Doctors appointment. This is one reason I had to give up on Doctors. I could no longer afford the intense increase in symptoms and difficulties after Doctors arrogantly dismiss all that we try to tell them. 

I’m not sure this makes sense or that there was a clear point. I don’t want this to be my first post in 3+ months, but I have to get this off my chest. This is how my life has become, and how easy it is to get physically hurt now. I think most of you would understand or have similar experiences. Thank you for reading, and I hope I’ll be able to post more soon. Until then, thank you all for the kind words. 

Love for you all.
Michael
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