Perception: A Tale of an Ordinary Man in a Funny Red Cape…

I have been having a very hard time physically and with my mental abilities. Not to mention that we’re destitute now. And at times it wears on me so much that I can’t see the light anymore. But its times like this where choices, yours and mine, come to shape how the story ends. I hope this reaches those who feel as if the end has come, and I want you to know that only YOU can control what happens from here.

My story is not going to end yet. And to that, I leave you with this…

/M

Facebook: 04 September 2014 2:35pm

Perception: A Tale of an Ordinary Man in a Funny Red Cape…

This morning was another one of those mornings where I woke up and the first feeling (other than intense pain) I had was one of hopelessness. It isn’t often that I feel that way anymore, but it does happen. And I get the impression that there are some who think that I never have these feelings.

I do. We all do. But its more about what you do with and about it, than it is whether or not you still have a human reaction.

I’m just a father who refuses to give up and/or die in front of his son, that’s all.

Aedan loves taking my shirt to bed with him after I’ve properly ‘recharged’ it by wearing it all day. This morning was rough, really rough.  But instead of letting that darkness take over, I picked myself up and put on this shirt.

You see, this shirt has powers. My Boy cuddles on it at night and looks forward to me giving it back to him at night. When I get it back in the morning, after HE recharges it for me, it serves as a reminder of sorts. It reminds me that he is counting on me, reminds me how I’m needed in this world. And I refuse to fail him. It makes me feel 10ft tall and bullet-proof, and sometimes I wonder if I really CAN fly. At my weakest, I still feel strong.

I haven’t done my Saline drip in a while. I only have a few supplies left and I’ve been stretching what I have available so my supply lasts longer. When I feel weak, I don’t feel like doing this. Especially not an NSS Drip (Saline) as is far more involved than just my Glutathione IV push, and many days I just don’t feel I have it in me to do it anymore. As if the fight has been beaten out of me after 6 years.

But this morning I put this shirt on, and I forget how I actually feel – I am filled with purpose, strength and fight once again.

I’ve been weak, my hands shake and I don’t see very well at the moment. But I couldn’t just lay down and give up for the day. I’m wearing this shirt after all, and I can’t charge this shirt with weakness now can I?

You can see I CHOSE. Its always a choice, and instead of surrendering to the darkness today, I chose to fight. Even when I’m nearly certain I have none left. Today is an example, not an exception.

I don’t know that I have a clear point at the moment, perhaps other than just to be open with y’all and let you know Im human too. I can lend you all the fight in the world, but I think also being open and honest about the fact that I too struggle is equally as important.

Healthy or not, we all face times where you’re not sure you can fight anymore. And I just want you to know that’s not only normal, but you should expect it.

Times like this I remind myself I have to EARN the right to be Aedans’ Hero. He’ll look up to me no matter what, but I believe I should first earn it. Every day.

It doesn’t matter what your ‘struggle’ is. Maybe you’ve suffered from a severe reaction to FQ’s like I have. Or perhaps you struggle is to simply look at yourself in the mirror and see yourself in a positive way. Whatever it is, know that you can overcome – but you must first make a concious choice, find something – anything – that makes you at least FEEL strong… and do it.

You can see what choice I made today. I ask you, whats your choice going to be? Let’s build momentum… most times you’ll find that’s all you need.

I hope my senseless rambling here at the very least gives you something to think about.

My drip is almost done, I did 750ml of NSS, albeit expired, but it should still be okay. Drip rate of approx 120dpm. In a few mins I will be giving myself a Glutathione IV, 6000IU. Deep IM B12 shot to follow.

Walk beside me my friends. I have nothing that’s not also inside every one of us. At best, I’m just an ordinary man in a funny red cape. This gift is in us all.

Until next time…

Your Brother in Fight –

/M

PAIN, Sheer Determination to LIVE and the Power of the Human Spirit:

A few weeks ago I posted this to Facebook. This is nowhere near a complete description of what I feel, but I think this is a pretty good summary. I haven’t had a single second of a single day without pain. Not to mention chest and heart pain, eye pain, joint pain, cramping, etc.

This doesn’t at all even address the functional difficulties I have nor does it at all describe the brutal fatigue that makes me unable to leave the house most days. I am hardly functional and heavily depend on Nikki to ensure I have at least some of what I need to continue living. And I would hardly call it ‘living’. I do nothing, literally nothing. If I actually attempt any activity most days (vacuuming, showering, anything) not only does the pain exponentially increase, so does the fatigue. And once I use whatever energy I have for the day – it’s over. And I need significantly more help to complete the day.

I don’t like talking about this stuff anymore – after almost 6 years I’m just over it. If I am going to continue living, I sure as hell won’t be complaining. All that does is make me more miserable. But I have to start getting some of this out or I’m going to lose my mind.

Like most things I write, this took me a long time. About an hour and a half. But I’m grateful that I have been able to start writing something. Writing is easier than communicating in real-time, but still not easy at all. My truth will be told, if its the last thing I do.

 

Facebook – 07 Sept 4:38am

PAIN, Sheer Determination to LIVE and the Power of the Human Spirit:

One of my Neurologists commented, during one of my EMG/NCV’s… “Wow, your ‘pain dial’ is broken”

It’s 3:20am and I can’t sleep. This isn’t a new issue, I haven’t slept much in nearly 6 years. I am in so much pain, layers. And the pain has gone from a 6/10 to 10/10. Every single fiber of my body.  I tried laying down in bed, but kept kicking and moving my arms. So I got up and tried to lay with my Boy. But I quickly realized I couldn’t control my body and I’d wake him, so I got up. When I did, I noticed my vision is not just far more doubled – my right eye seeing images higher than my left as well which is very disorienting. I stumble and lose my balance. Feels like I’m stumbling drunk.

I really tried to sleep. I always do. Most nights I just try to lay as still as I can,  I gently hold and softly smell Nikki’s beautiful long hair. I’ve laid there quietly for years doing just that.

I hate bitching, focusing energy on the negative only serves to give it more power. I don’t want to bring my family down or make them feel the torture either. The pain belongs to me, not them. But no that I have words, if I don’t start getting this out somehow, at least a little, I’m going to lose my mind. When I write here, I’m usually imagining I’m talking to myself. Let this be my release…

Right now every layer of pain has intensified. I cannot put words to this well enough nor can I possibly over-state it. Nothing like any pain I’ve experienced as a ‘normal’ Man. My face, my chest, abdomen, arms, legs. All my joints including my jaw even.

One of the layers is an intense, shooting electrical pain. From my hips, shooting down my legs. From my shoulders, shooting down my arms. Makes my arms and legs move against my will. I have gotten out of bed or stayed out so my kicking doesn’t keep Nikki awake, for years. I can’t control it, my limbs move against my will.

Another layer is an intense elecrical pain that if you were able to see it, I imagine it to look like the ‘snow’ you’d se on the TV back in the day when you turn it to a channel it doesn’t get.

Another layer is an intense ache that just throbs unlike anything I’ve experienced and an intensity unlike anything I could describe.

Another layer is an intense, squeezing, compression. Over my entire body, front and back, including my face.

There’s a layer that is Lactic Acid, more accurately, Lactic Acidosis, which a byproduct of my malfunctoning and damaged Mitochondria and Mitochondrial DNA (MtDNA). Feels like I have acid running thru my veins instead of blood. A very intense burning, searing pain that feels like my tissue is disolving in acid. *This is why I do the NSS (Norma Saline Solution) Drip as seen in my last post.

Then there’s the layer I know to be Oxidative Stress – very destructive to tissue. Oxidative Stress is precisely what causes a peeled Apple to turn brown. Feels like my entire body is dissolving, rusting away like a sunken ship does in the Ocean. Hurts like something not of this Earth, and covers 100% of my body in yet another layer of pain. ** This is ONE of the benefits of my Glutathione IV’S, makes this an order of magnetude better.

Then there are separate pains all over that move. There’s the tender tissue, constant Nausea, pain in my eyes. My lips, throat… my HEART, etc., etc.

The (different) pain in my swollen left foot – on the outside edge of foot, the ball of the foor and 3 smallest toes that started about 2 months ago and has yet to go away. Like walking on a bruise. Hurts like hell.

Speaking of bruise, I have bruises on my left leg that have been there since late April, at least, and have not even begun to change color like a normal bruise does when healing. They look like brand new bruises and just hurt.

Then there’s an uncomfortable (at best) electrical action causing my chest and abdomen to contract, causing my body to double over. Fight that all day too.

I know these are separate layers because they intensify or improve separately, my injections and/or supplement routine has a positive and distinctly separate effect.

When I lay own, immediately an additional layer of intense pain develops on the area I’m laying on. So for example, if I lay on my side, any area where my tissue is touching the bed/couch/etc becomes increadibly painful. My arm, shoulder, HIP (especially), leg… The pain continues to intensify until I move again. Like a ‘Charlie Horse’ or a terrible cramp over a bruise, this quickly gets to a 10/10 and is just one more layer.

Then of course there’s the shakes, Fasciculations and tremors.

This is NOT at all a complete list of what I’m feeling or going through at this moment. There’s far too many symptoms to list. But this is only about pain, and even at that I haven’t covered it all, by any stretch of the imagination. And I haven’t even begun to talk about the actual difficulties I have on top of just pain.

And all this is when I’m not doing anything. Moving, any physical exertion, tickling my Son even causes a significant and ugly response from my body which is on top of all the above.

Over the last 6 years, I have slept an average of 4-5hrs per night at best. And that reflects a considerable improvement since I got a Sleep Number (type) bed.

I take NOTHING for the pain. In the very begining, around week 3, I was given Neurontin for the Nerve pain – which is only one layer – but that gave me brutal headaches and caused other side effects. I knew then I’d have to face the pain someday, so I chose to face it on my own from that point on.

Let’s be clear: The ‘Medical’ system STILL can’t tell me exactly what the last pill they gave me did. There’s no way I’m taking more of their mystery pills. Nothing. Right?

Often, many people don’t seem to understand that the reason I can come across as intense at times is because I’m living thru something incredibly intense. Every single second of every single day, for well over 2,000 days and night now. I have become hardened. Galvanized even.

Somehow, despite not getting a single second of pain-free life, I have learned to transcend. I have learned not just to live, but learned to gently love through this torture.

I’m mentally blurred, my mind got whacked real hard too. I can’t see well enough or keep my balance enough to move from the spot I’m in right now.

I have been far worse, but this is still too intense to beat at the moment.

I don’t have a point, and I don’t expect that anyone actually read this whole thing. But if you have, thank you…

Your Brother in Fight,

/M

 

Dad vs. Chapter Three

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.

It’s not the size of the dog in the fight…

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

Recorded scrap of paper – 22 August 2014 7:50PM

It’s like being on a mental tight-rope. I’ve said this before. It’s very easy for me to get thrown off, or to lose my track, or even… like my brain isn’t ‘buffering’ enough information. And I stumble. I’m thinking about a conversation, for example. A conversation that causes me to think and not be the ‘funny/schticky’ guy.  Um. But that’s why I use this recorder even. I can’t seem to access uh, parts of my brain while I’m busy – distracted by the immediate. So I’ve kind of thought for years in fragments. And I’m only now getting better at starting to record and say these things in a way that I think makes sense. But that’s about as far as I’ve come in 6 years.

Shame and my Truth

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.

Lessons for my Son – a reminder of sorts

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…