Never give up, never surrender. No matter how defeated you might feel, know that there are so many moments like this where you will find strength. But only if you learn to look for the small wins… Even the smallest of wins add up over time to create momentum. And my friends, momentum is all you need… I love you all. – Michael

Facebook – 06 June 2014, 8:36am

Dad – vs. – Chapter Three

I spent the first few years hiding from my family. I was filled with so much shame about what was happeining, and shamed over all the things I couldn’t do. I didn’t want them to see me as weak, and in the early years I didn’t want Aedans last memory of me to be as a severely crippled and weak Man. I still fight it, as my ego wants to show my Son that I’m Superman, capable of anything and I would have wanted him to see me as big and strong. Always. Perhaps some of you can relate.

Through this journey, I’ve been forced to learn far more humility than I imagined, and I’ve learned that I have to be honest with my Son now instead of hiding it. Or at least more open than Id like.

If you read my last post, I spoke of my inability to read chapter books like Mama does. But Aedan knows that trying something you can’t do almost always makes you better. During that last conversation I told him we’re going to read a chapter book. We might not get through much, but we’re going to do it.

He, being my Son, turned it into a game. Like the TV show ‘Man vs Food’.

He brought the book Mama was reading, she left off at Chapter Three.

As I started to read, he noticed I was struggling and moving the book (my eyes change focus continualy) to see. He asked what happenswith my eyes, so I told him. They hurt from strain to see the small letters, the double-vision becomes very noticable when focusin on smaller things and my eyes get tired, so soon the page looks like nothing but a black blob. He said ‘It’s okay Dad, we don’t have to read this, let’s go back to ‘Hop on Pop…’ he’s so sweet.

No I said. We may have to keep taking breaks, but we’re going to read until I can’t read a single word. And we did. During our frequent breaks (every half page or so) he’d chant ‘Dad vs Chapter Three! Go Dad!’

It took about an hour, we got through about 8 pages. We checked and turns out Chapter Three has 12 more pages! *%#&!

He thought it should be time to quit. But nope, we were having a good time. And I wasn’t done yet. Another 20 mins and we finished another page and a half. But we went well past the point where I or he thought we’d get.

My old ego didn’t like failing in front of my Son. But the new and real me? I loved every second. I learned that my Son sees me struggle, sure. But he also sees that I never ever quit. He is so supportive and we are learning together to make a great team. And he’s the best cheering section a father could ever ask for.

Chapter Three won this round, but I’ll be back!! Grrr…

I don’t have access to my Blog still, so I’m posting this here. I know it’s long. But I also know that I would have needed to read this when I was at my worst.

Aedan taught me a valuable lesson that I want to share.

He doesn’t care if Daddy can’t do some things, or can’t read him the books he loves. He just wants his Daddy, in whatever shape I’m in. And he’s proud to be my cheering section.

Your children love you. Sick or not. Please, take this to heart and work on losing the shame. It is a dark Evil that will eat you alive. Take my word for it.

Thank you for reading, and go out and do something today that you’re sure you cannot. I began Chapter Three convinced I could get through it. And next time I fail to finish, I will also have been convinced I could. Just live my friends…

I am the luckiest man in the world. No matter what my physical state would suggest.

I feel like I’ve been locked in a mental prison for so many years. When I have words, I’ve enjoyed posting my thoughts. Usually its filled with things I’ve thought about deep inside for years now. And usually I’m talking to myself. Reminding myself of what I went thru and/or the strength its taken. It makes me feel good inside to put out words that make sense, but also it serves as a reminder when I feel I’m ready to give up. I re-read my words and it forces me to find the strength to make it on more day. It is my hope that posts like this reach your inner fight too.

Facebook Post – 12 August 2014

Its not the size of the dog in the fight…

I am quickly approaching my 6th year anniversary of being poisoned and metabolically destroyed. Lately, I have been on a another downward cycle, my body has clearly suffered a heavy toll thru this fight. When I hit the wall and lower my baseline, each time it takes me longer and longer to get back to where I was before hit he wall. Usually I don’t mae it back to that baseline and from that point forward, the degredation is (so far) permanent.

Daily:

While my baseline can vary from day to day, or even throughout the day. But generally my mind is slow to process, the world is still too fast. I get lost quickly in a 2-way conversation and still cannot reliably care for my own needs. My vision is doubled and blurry on GOOD days, most days my eyes just hurt. There is a disconnect between what my eyes see and what my brain processes. Its fairly disorienting. Feels similar to closing your eyes and moving around, and/or closing your eyes and talking. But with images. Very strange feeling to describe.

My body is in tremendous pain, multiple types.  I can only describe the pain(s) as being in layers. Each layer distinctly different, covering my entire body in indescribable pain including all joints, all tissue, even my face and eyes hurt. My entire body fatigues quickly – nothing like being ‘tired’. My body becomes very heavy and many of my supporting muscle groups are weak, shaky and some simply fail. Once that happens and I hit the wall, I need the world to stop completely. I become unable to communicate what’s happening or communicate my needs effectively. I barely make it thru an uneventful day most of the time.

BUT I HAVE MADE IT THRU 2,120 DAYS SO FAR. It’s like Groundhog day in reverse, everyday somehow harder than the last. But I got up and I have faced it head-on, everyday.

I wake up to this reality everyday. Then, I must also fight to get medical help – which has been almost non-existant, fight to handle whatever business the world forces me to deal with. Fight to find money for Medical care, treatments, co-pays, supplements, organic foods, electricity, water, phone, etc. I am at a substantial mental disadvantage but I still try. Every day.

My babbling until this point hardly describes what I go thru everyday and the logistical roadblocks caused by my condition. But I’m trying to share what I can to make a point here.

I know many of you feel as if you can’t go on even one more day. But I also know I’m among the hardest hit by these drugs. And if I can make it thru each day, you can too.

Don’t get me wrong, it isn’t easy. And there have been many days where I would want to just give up. But I can’t. As it turns out, that isn’t my style. And it dosnt have to be yours either.

Early on I would think about the many times I thought I couldn’t possibly live until morning. Many times I thought for certain I had come to the end of my life. But, clearly the end hasn’t yet come. And the more I thought about the times I’ve lived thru impossible odds, the more I realized ‘this too shall pass’. This morning felt impossible to me, but I knew the antidote… I thought of some of the times where I was convinced my time had come – convinced I couldn’t take another step. But yet, time and time again, I found the fight. Realizing my strength helps me get through times I deem ‘impossible’.

I now know there is no such thing. I know that the only thing that will cause me to fail is… wait for it…

ME.

I realize this is long and I’m not able to make this neat, tidy and sensible. But it is my hope that through my experiences you will find hope and that you will find the light. It breaks my heart to get so many messages filled with despair and fear. I promise I am always here for you, but really. If I can make it, you can and you will.

Are you going to live or die today??

EVERY MORNING I make a choice. Every morning, I choose to live. I expect you to do the same. Know that when it gets hard, I am here. But it is YOU that first must decide.

It isn’t the size of the dog in the fight…

Its the size of the FIGHT IN THE DOG.

Decide. Right now, decide to fight.

Your Brother in fight,

Michael

This picture hits me hard. I think of myself as Superman – I feel 10ft tall and bullet-proof when I walk upright now, or when I do my own IVs… or when I read a few pages of a book to my Son. Seeing myself like this hurts. Its hard to look at this and feel strong. I have been filled with so much shame as a Man over what’s happened.

In May, I was in Washington DC to speak about what happened to me. There was about 50 of us. When I or any of the others showed this picture to the Senators, the reaction was something I didn’t expect. They saw what this drug has done to my body and they were heavily affected by this picture. I guess I either haven’t yet faced it, or perhaps its just that I’ve spent so many years noe convincing myself I’m unbreakable. While that’s served m ell, I also need to face the truth. MY truth.

I am sharing this here for several reasons. None the least of which is that I must stand in my truth. Levaquin has nearly destroyed me and unless I/we have the courage to share our stories, this will never stop.

If you’re reading this, chances are you have been poisoned by these drugs too. This is almost 6 years after my poisoning began. I have fought so hard and lived through unphathomable torture and it shows.

It is my hope that you see this and instead of sad you get inspired. This does NOT have to be a death sentence, and together we’ll get through this.

I have much more to share. I still don’t have internet access so some of the videos and writings will have to wait. But until then I can and will be sharing quite a bit. Check back soon.

Also, I have offered this picture up to the floxies on facebook to use and I extend the same offer to you. Its been used to get Dr’s to take us seriously and from what I’ve heard, its been very useful for others in getting Dr’s attention. If you feel showing this at your next appointment will help get attention, you too are welcome to use it. Leave it as is with my name on it is all I ask.

Fight on my friends.

I haven’t had internet access since January so I’ve been posting to my Facebook account instead. I’m going to try a different posting method, let’s see if this works.

Posted to my Facebook account 23 May 2014…

Lessons for my Son:

Lately, he’s been asking me a lot of questions about my body and mind, and about what’s happened to me. Amazingly, he seems more interested in how it makes me feel inside. This morning is one of those mornings.

We talk about my eyes and brain, for instance. He knows Daddy can’t read chapter books like he and Mama can. He has noticed that I can only read short books, and books with few words and big letters. He notices how Daddy gets weak or sometimes can’t do what I was able to do the day before or even hours before. He asks if I get frustrated, he’s asked if it makes me sad that I can’t do a lot of the things I used to or do the things I want to, when I want.

I want to be open and honest with my Son. I think that’s one of the most important things I can do as a Man – he will know the real me. Not give him an unrealistic image of what a Man is and therefore not have unrealistic expectations of himself. If I have a hard time, I let him know. But I also show him what it is like to never ever give up, and to try my hardest. Every time, every day. Most important I want to show him how to hold his head high through it all.

But… I then explain how hard I try and even though yes, I do get sad sometimes for things I can no longer do, I cannot let that bother me. When those thoughts come, I must let them go just as quickly.

“Why Dad?”

“Because Mijo, if I spent my energy on emotions that do not serve me, I will have already failed.”

I remind him of the earlier days when I couldn’t walk or move. Days when I couldn’t pick him up or even tickle him. And as for reading, I remind him that there was a time a few short years ago when I could only read him books meant for infants.

“Point is Mijo, I’ve come a long way. And sure, its frustrating to Daddy when I have to stop reading the book before we finish. Wouldn’t you feel sad I you couldn’t read your little boy a book?”

“Yea dad, that’d make me feel sad for sure.”

“But Mijo, what if instead you think of how far you’ve come? Things you could do now that you couldn’t before?”

“Id feel good Dad.”

“Exactly. And unless I continue to try to do things that I cannot do, or try things that are ‘too hard’, Id never get better. Always buddy, always try. Even if you’re sure you can’t. Try, but start with the belief that you can. That is where most fail. Whether you think you can, or think you cannot: You’re always right.”

This is the conversation we had in bed this morning.

My little boy broke his collarbone on Monday. Watching him go through this has been painful as a Father, but heartwarming beyond measure as a Human Being. I see him try to do things he’s sure he cannot. Like removing clothes to go to the bathroom himsef now, or drawing with one hand, or getting on/off the couch. He’s finding ways to work with what he has, and he’s not sad about his pain and inabilities. Instead, my Son is proud of himself each time he ‘makes it work’.

I DID IT DAD!!!

The lack of tears is not what makes you strong my son. It is your heart, your inner fight. And you make me proud to be your Father. I love you Mijo.

Hopefully there’s something in here for you grown-ups…

This morning, I woke at about 4:30am and the pain made it so I couldn’t stay in bed, much less sleep. This is typical and is on top of all the other difficulties.I cope well, but it gets old sometimes and there are times when it takes every ‘trick’ know to get myself into a better state. This was one of those mornings.

I was able to get myself to accept the day ahead and my eyes began to focus a bit – which usually takes an hour or so after I wake up. Rock on I thought.

But then something happened, I found myself in a situation that I didn’t understand. Which can happen easily, no matter how easy an issue or situation might be. It is a requirement that my world be slow, predictable, straight forward and simple. I tried so hard to understand and know what to say or do, but I just couldn’t follow what was happening. I used too much energy.

My available (cellular) energy is always low, but un-predictable from day to day. And its quite finite. Once I use what I was given that day, that’s it. It quickly becomes a physical and mental nightmare beyond words. So today I exhausted my available energy and I hit the wall. Hard. And as the day goes on, this will only get worse.

And it was barely 7am.

Today is one of the (thankfully) rare days where I couldn’t immediately squash my frustration over my situation. I live a life that could easily be overwhelmingly frustrating if I let it. I learned to deal with it very well, but its not a perfect science just yet.

I tried every ‘trick’ I know to help change my state. I tried the cologone trick – now I smell like I should be rocking a Mullett. I tried sitting in my quiet place, listening to calming music, etc. I even took an Epsom Salt bath with some essential oils. Didn’t help, I just couldn’t shake it off.

I say all this to add context to todays message. I don’t like to bitch, but I have to get some of this out so y’all understand a little.

My last line of defense isn’t so much a ‘trick’. But it works every time.

Some days just suck and are going to suck. Lets face it. But I feel its up to me to decde just how much I will let the aforementioned ‘suckage’ take away from my life. Today is one of those days where I just have to hang on tight to what and who I love and just know this too shall pass. Just hang on and know that while I won’t feel much different physically and my mental/visual abilities won’t improve too much in the near term, I will feel better inside. Maybe not now, or in an hour even. But I will. And sometimes, that is all you have to hang onto.

I refuse to let it ruin whatever is left of my day. I decided that I don’t give a rats ass how bad it is today, because I must live above it. If I am to live, I will not let this monster take anything more. Its taken my body, my eyes, my mind… it has made me miss out on so much of my life – and my Son’s life.

Over these last 5.5 years, I have learned to just let go. Grab onto your life with both hands and no matter how much you think it sucks, live it. Live it and refuse to let whatever troubles you steal any of your quality of life. It doesn’t have to, it only steals what we make available.

This all made more sense in my head and I’m not warpping this up well. So I hope you can find the value in this.

Let go and live for today. This too shall pass.

With love for you all.

Michael

Someone just reminded me of this post and I thought I should share it here. At year 6, I still struggle. But I fight back, hard. It is my hope that you can take something away from this and find your own ‘fight’. After all, we’ll never get these moments back. So get up and make the best of it. My life has been hijacked, make no mistake. But, its up to you to decide just how much of your life can be stolen… Today, try to find a piece of your life to take back. Even if its small moments like these, which is often all I have. But I’m grateful none-the-less.

Much love for you all…

Facebook: 10 June 2014 – 8:05am

Shame and the ‘Make Sense!’ game:

I’ve spoke on how I hid from my family. I tried my hardest to look as normal as I could, I tried my hardest to hide as much if the intense pain as I could. I tried hard not to fail in front of my Son and tried every day to keep the darkness of what’s happened from overshadowing my family’s life. Usually that meant hiding so I could take it all on myself. Nearly every system in my body has issues, my body wasn’t the only thing affected. I had far more shame over my mental challenges than any other symptom/issue.

Perceptually, the world happens too fast. I cannot process things/people/voices/conversations like I once did. Although now I’m learning to work round it better and have certainly experienced at least some recovery on this as well. I wasn’t able to think/post like this a year ago, although real-time conversations are still very challenging for me.

Often my Son would ask me questions. Simple questions like any other kid would. I was entirey unable to respond in a timely manner (if at all) and I have a very hard time getting my brain to think of the things I want it to, when I want it to – and certainly can’t always switch towhat someone else wants me to think about.

I can usually picture in my head what I want to say, but I can’t describe or say it. It has been a source of incredible frustration and I hope to describe my mental challenges in better detail later. I have experienced some improvements lately, but it can be very disheartening for me to say the least.

Recently I have been forced to be more open with my Son. I kept this from him entirely until very recently. But he needs to understand somewhat so he never thinks its him or his fault if I get frustrated with my brain. He knows I can’t always say/think what I want or do simple tasks at times. So we came up with a game.

Introducing… the ‘Make Sense Game’!!

This morning is a great example.

Usually asking me a question (doesn’t matter what or how simple), esp if its not something I’m already thinking about, causes my brain to enter into that electrical mist that’s unpleasant (to say the least) and it becomes incredibly frustrating. But my Son is so sweet and gentle, he patiently waits as I try my damndest to get thru the electrical storm to answer him. Usually, my answers don’t make sense to anyone, let alone a child.

This morning he asked what dryer lint is. I picture it in my head and also have a pseudo-picture of what my answer is. This morning I was able to respond in a way that actually made sense and I got a point! I’m at 1 now…

We started this game a few weeks ago and as frustrating as it is to talk sometimes, I think it helps. I still don’t like failing in front of my Son, and I suspect I never will. But I am so thankful to have a Son who is so gentle and understanding. We don’t play this game to make light or make fun of me or my inabilities in any way. Instead its a light hearted bit of fun that actually encourages me to try harder every day, and makes me feel less ‘defective’ and thereby a tinge less shameful about my brain too I suppose.

Last week was a better week, one day my high score was 10.5 – there was a time where I made only some sense so I got a half point. But I find now that I’m distracted by my desire to get a ‘point’ and to try and beat 10.5

I am somewhat less frustrated by the electrical storms and I try without fear of failing or shame. Or at least not as much. I just want to beat my high score of 10.5

I know that some of you reading were hit by this drug class too and likely can identify with the cognitive issues caused by this poison. Please, lose the shame. I’m still working on it myself, every day. I have the hardest time accepting the mental challenges I now have. It makes me feel defective and useless as a Man. But I’m working on it, and every day I try to do something that makes me feel strong.

I know this might only make sense to me (and I don’t earn a point for that). But I hope that by being more open, honest and transparent in my struggles and fears I can inspire thought and change in you as well.

Your Brother in Fight,

Michael

My mental abilities aren’t enough at the moment to make many of the posts I’ve been daydreaming of. Those will soon follow as I have a lot to share. Some really amazing stuff and a whole lot of things that aren’t such good news.

Hopefully I can start posting some of the things I’ve written and meant to post. See, as many of you will understand, my brain seems to work and think in fragments – even on the best days. And for me, the trick is to get as many fragments together as I can and hope it comes out as something that resembles sensible thought. My posts generally take me a very long time and take tremendous effort. Again, something I am certain many of you can relate to. So I tend to miss the opportunity to post my thoughts and updates as my brain tires throughout the day. But it is my mission to help each and every one of you. Always.

Just please know that as much as I want to help, I am still very ill. Daily tasks are still overwhelming to me, even on my best days. I just want you to know that I am here, even if I am unable to communicate at the moment. And that your messages do reach me. I will try harder to check my messages now that I realize just how many of you have been sending me your questions, admitting your fears and reaching out for a beacon of hope.

Until the day I die, I will be here to help. So please, keep it coming! It fills me with purpose and hope just the same. And I have much love for you all.

Patrick, Lucas – Your messages were the ones I saw first and some of the things you wrote really hit home for me. Patrick, your last line was haunting for me. I too remember all too well being frustrated and not understanding how come it would take me 30 mins to write 3 or 4 simple sentences. Little notes like that inspire me to write, and I suspect my writing on such subjects will be amazingly helpful to others who are experiencing it too. Maybe soon I will start to share some more intimate details and share my logs and such. My challenge here is I want to share everything, but I don’t want to scare you or make you lose hope. Which is why I usually only share the good stuff. Please, let me know if it would be too much for you to hear it all. I need some feedback here.

In the meantime, I have a message for you.

And remember: Never, ever give up. This is not a death sentence. Live. Live with purpose, meaning and intent. Even if you can only move your wrists today, no matter how horrific the pain is… NOTHING can take this day from you, and NOTHING can take your quality of life away – except you. YOU truly can control how this day will end for you, and you can control what it means to you. Live my friends. Live.

Your Friend in Fight – Michael

Last night while on Facebook, I had met a woman who was trying to support the love of her life, Jeff,  through a severe reaction to Levaquin. He is now bedridden as I was, and seeing his picture somehow brought back a lot of the pain and fear that live in shadows of memories from my nightmare.

See the thing is, I didn’t have help. For those first 18 mos or so where I was bedridden, I had no idea what was happening to me. I didn’t have a Doctor of any type who believed me, and my mind was so horribly affected that I couldn’t explain what was happening to me. To anyone – I was too confused. I couldn’t move, I couldn’t use my mind to help myself. And worse still, I lost my ability to even produce a voice. So there was a time I was completely trapped, I was unable to move, think or speak. It was like being in a coma while awake. I remember the terror and I will never, ever forget the pain.

But I was a new Father, I could not fail my Son. Every day I tried to stand. There wasn’t a single day that I didn’t fight to walk. Even if all I could do was move my wrist or shoulder. Didn’t matter, I fought back. All I wanted to do was make it to the other side of the house where he was. I could hear him playing all day. But most days, I couldn’t move my limbs. Only my wrists. But I fought. And you will too.

The point is to pay no mind to how much it hurts or what you can’t do. Fight back. I would fall, I would often black out. But I didn’t care. I fought from a place inside I never knew existed. You’re alive today. You can kiss your kids, you can smell the air and you can hear the wind. I know it sounds crazy, but that is where life is. Live in those moments you do get. No matter how brief. Those will be the memories that will carry you through your darkest times.

My mental abilities are continuing to slowly improve, I can finally start to share my story. I’d like to hear from you as well. Please feel free to use the Contact Me page at the top and certainly please feel free to leave comments. It’d be nice for me to know I’ve reached those who needed it.

Expect to see many more posts and videos. But until then, I leave you with Hope.

Maybe Michael has always been gluten-intolerent. If he has, we hadn’t noticed in the past. You see we are from Chicago, so our diet used to consist of Pizza, Italian beef sandwiches, and Pizza.

Then in May 2012, his neurologist, Dr Perlmutter, recommended a test for gluten intolerence. It came back showing that, in fact, Michael was very intolerent to gluten and that it must be cut out of his diet immediately.

So I did what any normal mother would have done- open my kitchen pantry and cry at the stockpile of whole grain pasta, crackers, cereal, and the other many various kitchen staples that has built the American diet for the past couple decades, and that we could not eat anymore. Then I went online and to the library to research how to live gluten-free.

Michael has been gluten free for months now- every once and a while I’ll tap into the gluten stockpile and offer a different meal to Michael than I do for Aedan because I don’t want the other food to go to waste. And I have to say, only good things have come from this change.

Michael still has bad days where he struggles to get enough energy to walk across the house, but overall, the removal of gluten has lessened some symptoms. It is hard to quantify because his symptoms inhabit so many body systems but I can say that relatively speaking many things have improved. On the pain scale from 1-10 Michael often existed at a 7. Now he can say that he’s down to a 5. While still too painful for me, any improvement is monumental. His brain fog that caused him to sometimes walk about the house at a zombie’s pace has been upgraded from “zombie” to “tired person”. Most importantly, his symptoms are more…predictable…He knows that if he does too much or skips out on his supplements, his body will react accordingly whereas before it was more random.

This new focus on proper nutrition is life changing for all involved. Pizza and Italian beef has been replaced by Kale and Roast Chicken. My scientific brain gets to enjoy the chemistry behind why the body needs certain vitamins and minerals. My inner child gets to be the “Swedish Chef” from the muppets as I make gluten-free bread from scratch.

Gluten-free white birthday cake for Michael’s 39th Bday was the best cake I’ve ever tasted!

In the end, I’m not surprised Michael’s body cannot tolerate gluten. For decades wheat starting being cultivated so that the strains containing the most gluten were in high demand because the American taste buds liked the gooey texture of high gluten wheat. It just doesn’t surprise me that the same culture that created these Frankenstein-like drugs also creates food that the body cannot process. Whatever turns a profit I guess.