Category: My Daily Kryptonite

These might be about my fight each day, or about the ugly reality of my position. I don’t spend much energy thinking about or talking about this as energy is at a premium for me – I generally choose to spend my energy on the positive. But – sometimes a brother just has to get things off his chest and I know some of you reading will understand me here.

Missing Parts: Amputation

3 Comments

Today is the surgery to amputate. I didn’t push the issue when I got back, I put it off as long as I possibly could. The gangrene was progressing, but slowly. We did more testing on the area to see if there was any useful data to gather or rule out certain root causes. But mainly for me, I needed to try to recover as much strength as I could first. This surgery and recovery will take a lot more energy than my body has available, causing my baseline to go down further. I simply cannot afford for that to happen, especially since I’m already much weaker – too weak.

biohazzardPictures of my feet, ankles and legs can be found HERE. I have them hidden since, while not at all grotesque, it’s not exactly pretty. I am sharing for those who may have similar issues or are otherwise morbidly curious.

I still have not nearly recovered from the FDA, my baseline is still much lower than before I left. That means my daily best is much worse than it was, and so is my daily worst. My entire body is heavier and I am still much weaker, slower with less charge in my batteries. I drain much faster now and recharge slower and a list of symptoms/issues are far more severe. I am in intense pain, layers of pain. I feel more easily lost or confused and I strain to read or see tv since my vision is more doubled as I tire further. Typing this is a struggle, and getting my words to make sense has taken 3 days so far.  I have little stamina – I struggle more to get through a minimal activity, housebound day and small tasks like making my morning eggs are now much more difficult, if not impossible. In fact, I’ve only made my eggs once in the two weeks since I’ve returned from the FDA. By early to mid afternoon I am completely spent even though I have done nothing all day and the pain is unbearable. I am further removed from my family and from my life.

I absolutely knew this would happen, but I did it anyway. This outcome is nothing new to me, I go through this often after I spend too much energy. Sometimes worse than others. Clearly my energy was well spent though, it was worth it and I would make that same choice again without hesitation. But I’m in rough shape. The thing is, this really is a simple surgery that a normal body could handle just fine. But my condition/baseline is fragile on my best days and I get much worse for months from even a simple cold I catch. Anything that causes my body to use more energy can have unreasonable consequences. This surgery and recovery will cause my condition to deteriorate much further and I will suffer brutal difficulties and pain that are on top of and unrelated to the surgery. I assure you that what I experience on my best days goes far beyond a healthy persons worst nightmare.  So… this is going to suck. No doubt. But this is just what happens when the body’s cellular energy factory is broken. This is the beast that I fight. Every day.

I am an exotic species now. “Modern medicine” is still at it’s infancy in understanding screwed up amputationmitochondrial issues, special techniques/care needed and the implications on the human body. In fact, today I have to bring the protocol for mitochondrial patients to the Anesthesiologist to ensure I am not permanently harmed – this is just not something they know about or know how to deal with. I no longer feel safe in a hospital or around Doctors. Especially as my energy drains and communication becomes even more difficult for me.

While I know that I am in good hands, and these Dr’s are the best in the area, I still fight the fear that something will go horribly wrong. A realistic fear for mitochondrial patients, and let’s be clear – Like most in my position, I haven’t had too many comforting experiences with Doctors since Doctors first poisoned me 7 years ago.

The gangrene only got one toe, so that’s great. But the Levaquin induced micro-vascular issues that caused the tissue to die in the first place also covers other toes and are all over my foot and legs and to a lesser extent my entire body, face included. So now I face the very real fear that I will lose more to amputation in the near future. After 7+ years of daily torture, I now fight to remind myself that I haven’t lost just yet. But somehow the thought of even a small amputation really makes me feel as if this is the beginning of the end. In my head and heart I know that’s not true, but it sure can feel like it if I let it.

One of the reporters I spoke with shared with me a story of her father who battled significant illness and lost a considerable amount of body mass, and how that was hard on him. Obviously I too understand that mental battle all too well. When I accidentally catch a glimpse of myself in the mirror now I see how much smaller I am. How much weaker and more fragile I am and that does really make it hard to keep my head up at times. It’s hard not to think I’ve already lost. 

But I must remember that I have fought way too hard and survived through way too much to let something this simple get to me, I must remind myself of my strength. I must remind myself of all the inner fight I’ve routinely demonstrated and all I’ve overcome so far. I must not falter, I must not let my fight fade. I must remind myself that I am Superman to one beautiful little boy.

I must not fail my son.

I don’t know that I have a clear point today. I am not doing well and I am struggling to keep my head up at the moment. I will do just fine, I always come out with my head held high. I guess I just needed to get this out and mark yet another moment in my fight. Thank you for reading and I love you all.

Your Brother in Fight,

/M

Live long enough to testify before the FDA to ensure that NO ONE ELSE will end up like me for a cough ever again… Check

6 Comments
Michael Kaferly in front of the FDA

Michael Kaferly set to testify at the FDA HQ in Silver Spring MD on November 5, 2015 – preparing to unleash 2,585 days and nights of torture.

On November 5, 2015 the FDA’s Antimicrobial Drugs Advisory Committee (formerly known as the Anti-Infective Drugs Advisory Committee) and Drug Safety and Risk Management Advisory Committee held a special hearing on the safety of Fluoroquinolones, especially when used as a first line of defense. This hearing lasted all day and included a team of Dr’s, Scientists and Execs from Bayer, J&J and Pfizer who were on hand to give hours of testimony that their drugs are safe.

The intent of the committee was to revisit the issue to determine if the benefits really do outweigh the risks when prescribing for sinus issues, bronchitis, UTI’s, colds/sniffles/coughs.

I heard about this hearing about 3 weeks in advance, giving me time to rest and save energy to attempt to make the trek to the FDA HQ in Silver Spring MD. I should have been having surgery to amputate at least one toe from the damage Levaquin has caused. A few days before I was set to leave I cancelled on going to the FDA. My baseline was far too low and getting lower, I was weak and getting weaker. My foot was in so much pain, as was the rest of my body. On top of my condition, logistically I didn’t think we could do it. The world still happens too fast and while my intellect is in tact, my mind gets slower as my energy drains. Michael Kaferly just before FDA testimony There would be no way I could do this without significant, constant help. I needed a seeing eye human to help care for me and keep me safe and it started to look like there was no way for me to be safe, no way for me to be able to stop the world once I “hit the wall”. But this was far too important to miss, no matter the cost. My mother accompanied me and pushed the wheelchair, made sure I ate, made sure I knew where I was supposed to be and what was happening.

I was already becoming weak from the trek to the FDA and beginning to have tremors, my energy was draining so fast – and I’m sure the stress of knowing the people who did this to me were in that room had a huge impact. Stress and anger immediately make my symptoms worse in a way that I would only describe as a violent reaction in my body. I tried to keep myself as calm and grounded as I could, but there’s no doubt that had a huge effect. This is a known issue for severe mitochondrial patients as the body uses so much energy when in a stressful state, and for those like me it is more energy than we have available and an “energy crisis” is triggered.

Between the help from my mother and the help of all of my fellow warriors, I was able to make the trek.

My testimony was a compilation of many “scraps of paper” and recordings. It was an enormous struggle to get words out and arrange them so they made sense. But that day, the universe guided me and allowed them to flow. The complete transcript is found below.

Full Transcript:

Good afternoon. My name is Michael Christian Kaferly. I have no affiliation.

In Sept 2008 I was prescribed Levaquin to clear a chest cold before a minor surgery. There was no testing done to determine if I had a bacterial issue. It was given to me JUST IN CASE. Soon a nuclear bomb detonated inside my body. I quickly went from an intelligent and healthy man who worked out almost daily to being bedridden, unable to understand the world around me and in horrific pain not of this earth. For much of the first 18 months my entire body would become too weak and too heavy to move – not even to use the washroom. At its worst I was so weak I could not hold my head up, chew food or even produce a voice to tell my little boy I loved him.

Our search for help took us coast to coast. Among my list of diagnosis are Autonomic Neuropathy and mitochondrial damage. Testing shows my body has suppressed cell replication, which is the explicit mechanism of action of the drugs that we’re here to discuss today. My full list of diagnosis and symptoms spans across multiple systems and is far too long to list here.

I have fought this monster for 2,585 tortuous days and nights, but I am hardly improved. While I have good and bad days, I am never well and I rarely leave the house. I am like a defective battery that discharges far too quickly and doesn’t recharge correctly. I have a minimal and unpredictable energy supply to fuel my muscles, systems and organs. That means as I tire, my entire body gets progressively weaker and heavier. My vision worsens and I can become confused, frail and weak many symptoms become unimaginably severe including layers of unspeakable pain. Even though I’ve rested for weeks to be here today, this trip is dangerous for me and I will suffer devestating consequences for the energy spent.

Abandoned by the very medical system that did this to me, I have been forced to give myself over 475 IV’s to help manage some of the horrific symptoms Levaquin has caused.

I made videos of my IV process to help other victims – one of which has over 15,000 views. There are many more like me.

Modern medicine offers no cure for my mitochondrial disorder that began as a result of taking Levaquin. It is imperative to manage symptoms to prevent this disorder from progressing, but the only known therapies are not covered by insurance. I can no longer afford the extensive supplementation and IV’s that helped me to fight back. I have been forced to go without and my condition has deteriorated significantly as a result. Until a few weeks ago my family was homeless again. When I get home to my little boy, I face immediate amputation from the damage Levaquin has caused.

In 2008 there was no warning about Autonomic Neuropathy or mitochondrial damage. Just tendon issues. If the FDA protected me and allowed me to make an INFORMED decision, I absolutely would have chosen to keep the cough. The salesmen are here today to tell you their drugs are safe, but you already know this class of drugs CAN cause mitochondrial damage, I came all this way to look each one of you straight in the eyes and tell you that in fact, it DOES.

My little boy was 15 months old when my life was hijacked. Now 8, he has never gotten to know his father as a healthy man. He has been forced to see things no child should ever witness. My life and his childhood have been stolen in the pursuit of profit. I am here today for the hundreds of thousands like me, labeled as crazy who still don’t know what is happening to them. I am here for my son and for his entire generation, to implore the FDA to rethink how these powerful biological weapons that we call “cures” are labeled and monitored. Levaquin has unquestionably cut my life short by decades. There is no sane measure that makes this level of metabolic damage an “acceptable risk” except to those whose sole directive is to sell more pills.

Media outlets were on hand to cover this historic event. Just before I was set to testify, I met with a wonderful reporter named Jacqueline who aired this in Charlotte NC and another version on 10 more stations in 9 states. Below are two of the many stories, there were far too many for me to keep track of.  I will try to add the rest and update the media section as energy allows.

Michael Kaferly testifies before the FDA

Michael Kaferly Testimony_FDA_Media_Coverage 4

I began to hit the wall hard after my testimony and many of my symptoms were becoming violently worse. Luckily my seeing eye human noticed – as I would have been unable to articulate my immediate need – and wheeled me out of the room immediately following my testimony. I desperately wanted to stay to support my fellow warriors, but I had no choice but to eliminate all energy expenditures in attempt to stop the progression of symptoms/issues.

No matter the physical cost, it was clearly worth it.

After a full day of testimony by the Pharmaceutical industry,  the results were a landslide victory for all of humanity. The FDA voted unanimously, deciding that in fact the benefits do not outweigh the risks.

FDA Voting Results
I couldn’t be there for the end, my body forced me to leave immediately after I spoke. The FDA panel read their justification for their votes, below are just a few quotes from the FDA panels. Including the need to officially acknowledge “Fluoroquinolone Associated Disability” as a diagnosis to cover the constellation of strange symptoms that millions suffer.

“Education is important for the physicians”
“Uncertainty about the safety”
“Does not provide sufficient guidance for practitioners”
“Business as usual is not acceptable”
“Misuse has to be addressed immediately”
” FQAD-legitimate warning for this”
“Relying on the labeling alone is too passive”
“We have to act now”
“Need to extend who is at risk”
“Remarkable testimony today”
“No first line of defense use”
“Black box should be expanded-highlighted-raise alarm”
“Serious safety concerns-a flawed tool-need red flags-BIG red flags”
“The black box does not look serious to me.”
“Thank you to the Press and patients”
“Learned a lot today”

Again, the intent of the committee was to revisit the issue to determine if the benefits really do outweigh the risks when prescribing for sinus issues, bronchitis, UTI’s, colds/sniffles/coughs. They answered NO unanimously. To me, this means that I have lived long enough to fulfill a mission that I’ve had ever since these drugs caused me to be bedridden and unable to communicate. NO ONE will ever be poisoned by these drugs the way I was – for a cough. These drugs will no longer be allowed to be the first line of defense for minor issues. Which was far and away the bulk of the prescriptions . The drug companies lost hundreds of millions of dollars on Thursday, and I am proud to announce to my son and the world that we did it buddy. We did it.

WSJ Friday Nov 6 2015

Wall St. Journal headline, Friday Nov 5th 2015

I returned home safely, but I am in rough shape. This trip took far more from my body than I had available. I am far weaker than I was before I left,  layers of pain are exponentially worse and my baseline is far lower. The infection has spread further, but so far it doesn’t look like it’s gone past my toe – so I got that going for me. But the pain in my foot is so much worse as well, on top of all of the other symptom and pain increases across my body and across systems. I don’t know if I will ever recover to my previous baseline, or if so how long that might take. But this was a victory for every man, woman and child. I haven’t yet had the opportunity to process all thats happened, I’ve been slow the last few days. Right now I am still overwhelmed with gratitude that I was able to use my words for those 3 minutes. I couldn’t make that same speech today, nor on most days. But when it counted, I had words. And nothing can ever take this moment away from me or my son…

Thank you to all of my fellow warriors who testified and for all those who made this moment possible for me, and for all of the innocent and unaware who just dodged a bullet because of our sacrifices. Make no mistake, my hand has already been dealt. I have no dog in this fight; Johnson and Johnson decided my fate for me on Oct 6 2008. Nothing good can come of this for me personally, in fact, nothing but suffering will come for me after this. But I can look my little boy in the eyes and say that day buddy, we made a difference. And I taught my son that sometimes, you just have to take a stand for what’s right – no matter the consequence.

I love you all.

Your Brother in Fight,

/M

Note:

Leave a comment

In order to comment on a post, please click the post title. There you will find the comments area for each post.

My Story, My nightmare: Fragments of Memories

Leave a comment

This was recorded during part of the most severe portion of reaction in that my body was so heavy that it was impossible to move out of the chair – not even to use the bathroom, and it felt like my body was shutting down completely. It repesents a good day during that time in that I could produce a voice and I could move my arm and hand to click record or to think well enough to make this. I was rarely this lucky. I was generally unable to move my limbs, hold my head up, swallow food, speak. Saying words wasn’t always the issue, communicating my thoughts and needs as my brain intended was the issue. I was unable to write any sensible thought due to the severe brain issues, besides the weakness. And when I lost my ability to produce a voice, I was truly locked in, unable to communicate in any way. My entire existence would dim like a light bulb. Brain got very slow, problems with my heart, eyes, breathing, progressive weakness of my body included. All these symptoms happening at the exact same time, I had no way to understand. I would describe it as like being in an awake coma.

I still ‘dim’ and weaken similarly today and almost 6 years later I am still hardly what you’d call functional, but at least my lows aren’t this low. I can walk upright most of the time (short distances) but I am generally too weak to leave the house, and fatigue very quickly even though I do nothing all day. Simple things like walking to the washroom or even showering can wear my batteries quickly, but I’ve been able to keep my batteries from discharging enough where I get this dim at least.

Even when I had a voice, it was soft and quickly my voicebox fatigued as did my heart and speaking caused horrible pain in my heart which would stop quickly as soon as I was still or quiet. I could not scream out in pain. I coult not move my body to even react to the pain. I couldn’t dial 911. I couldn’t tell Nikki – (or anyone) what was happening, and by this point I had already been kicked out of ICU. Been to the Mayo Clinic where they found a few important issues but they seemed to think no one could have a symptom list as long as I did, in so many different systems.

I had no idea who to call, or more importantly, what to say. I was so confused and unable to escape my own mind enough to communicate the thoughts in my head. And it was (and still is) like living in a movie, or a dream-like state. The world seemed so far away, so foreign, and communicating was/is like being intoxicated in some way, talking to voices in the dark – but I can see. Sort of. How do I find help? What do I tell them?

I had no other choice but to sit there and take it. I didn’t understand what was happening enough to say much, couldn’t communicate and was too weak to even move my arms or head most times.  I faced pain, I faced terror. I faced myself here, in this chair – far away from my family, at the very back of our house. I learned shame beyond all reasonable description through this whole journey, but without a doubt this is where I began.

It is in this chair I faced the most indescribable, excruciating, horrific pain that is not of this Earth – including but no way limited to several layers of sharp/intense electrical pain from head to toe.  Pounding heart beating at 120+ w intense chest pain, weakness causing me to even be unable to hold my head up, chew my food or swallow without choking. I couldn’t scream for help or tell my family I loved them. A Nuclear Bomb had just gone off in my body and medical help of any meaningful type was impossible for me to find. So many symptoms at the same time… and my mind was so slow. I spent many months in this condition or worse.

I like to think I’ve come a long way, but the reality is that I’m not too far way from being back in this chair. And I’m continually wasting away. But I fight hard in every way I know how, every single day.

I have too much to say about the chair, what I’ve written hardly describe all that was happening at the time. But right now I’m in a state where I MUST get momentum. And looking at this video forces me to see that I’ve come far by sheer will alone. And that reminds me that I CAN do this.

Please, watch and see why I’m so very grateful for the smallest of moments.

*Audio boosted so you can hear me. Actual audio is so low as my voice was so soft. The original untouched versions can be found on this site here *

I’m alive. And so are you.

Your Brother in Fight,

/M

Bactericidal Antibiotics Induce Mitochondrial Dysfunction and Oxidative Damage in Mammalian Cells

Leave a comment

These drugs target Mitochondria in Humans and alter our DNA.

Below is an excerpt from research published last summer. Source URL included so you may read the entire thing for yourself. This and my last post may be helpful for you to bring to your Dr appointments – be sure to show them these if you’re getting resistance from your Doctor on the serious side effects of this class of drugs.

This study explicitly lists Quinolones – the class that Levaquin, Avelox and Cipro belong to. This is not the only study, just the most recent.


US National Library of Medicine – National Institutes of Health

Source URL:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3760005/

“It has been suggested that bactericidal antibiotics induce the formation of toxic reactive oxygen species (ROS) in bacteria. We show that clinically relevant doses of bactericidal antibiotics—quinolones, aminoglycosides, and β-lactams—cause mitochondrial dysfunction and ROS overproduction in mammalian cells. We demonstrate that these bactericidal antibiotic–induced effects lead to oxidative damage to DNA, proteins, and membrane lipids. “

 

LEVAQUIN and all FQ’s target HUMAN MITOCHONDRIA BY DESIGN

3 Comments

Here is an excerpt from a Citizens Petition asking the FDA for yet another Black Box Warning on Levaquin and ALL Fluoroquinolones. This new Black Box Warning is for MITOCHONDRIAL DAMAGE –

This is just one of the things Levaquin has done to my body. I am like a battery that discharges too fast. when they drain, I am left very weak with breathing and heart issues, visual issues, cognitive issues… the list is seemingly endless after this Nuclear Bomb went off in my body. All my issues intensify as my ‘batteries’ drain.

This is how Black Box Warnings get created. This will be just one of many warnings on this class of drugs. Let’s hope this finally gets them to pull this poison from market – stop feeding it to our livestock – it’s in non-organic Beef, Chicken, Pork – its in our eggs, cheese, milk – you name it.

And most importantly: Stop giving it to our CHILDREN

The excerpt is as follows:

The Southern Network on Adverse Reactions (SONAR), submits this Citizen Petition (Petition) under section 505 of the Federal Food, Drug, and Cosmetic Act (FDCA). SONAR requests that the Commissioner of the Food and Drug Administration (FDA) require changes in the professional labeling for Levaquin in order to specify a more accurate benefit/risk profile for this antibiotic.
A. ACTION REQUESTED
This Petition requests that the FDA change the professional labeling for Levaquin under Section 505(o)(4) to FDCA or other appropriate FDCA section(s), in response to new safety information. This action will also strengthen the quality of the Levaquin science base and decisions based on it.
Possible Mitochondrial Toxicity
 
Fluoroquinolones, including Levaquin, may cause Mitochondrial Toxicity
due, in part, to an insufficiency of ATP. Mitochondrial conditions that are
due to an insufficiency of ATP include developmental disorders of the
brain, optic neuropathy, neuropathic pain, hearing loss, muscle weakness,
cardiomyopathy, and lactic acidosis. Neurodegenerative diseases, like
Parkinson’s, Alzheimer’s and amyotrophic lateral sclerosis (ALS) have
been associated with the loss of neurons due to oxidative stress generated
by reactive oxygen species (ROS) related to Mitochondrial Toxicity.
Peripheral neuropathy, hepatoxicity, glucose disturbances, and
phototoxicity may result from Mitochondrial Toxicity.

Desperation and the Shirt, God and the Nightlight…

2 Comments

 

I made this nightlight for my son 2 years ago or so. It was intensely difficult and took me a very long time – a project that would only have taken an hour or two in my old life. But I did it.

Aedan turns this on at night when he is scared, he says it let’s him know Daddy is with him. And with it he feels safe.

I literally don’t have much energy to spare, physically or mentally. This fight against MetLife has really taken a toll and worn me down. No matter how hard I fight, without my disability payments I simply cannot survive this much longer. I think that realization really rocked me. I don’t allow myself to get or feel defeated this completely. In 6 years, this is the second time I had been that state. The first was a year ago – but for the same reasons. I’m simply not getting the help I need. I haven’t cried, not over the bad moments anyway. Nor have I allowed myself to get knocked down so bad that it breaks me or my will. That would only serve to cause a cascading effect.

But there are some things that are legitimately far out of my control. And being unable to afford medical attention, my treatment(s), medical supplies, utilities, food… it’s been almost 3 years now since my benefits have been paid to us.

I had a conversation with God. He reminded me that I wasn’t wearing my shirt. He told me to put it back on.

But that just made me feel worse at first. I didn’t need more fight, I have more than enough fight in me to share. That’s not the issue. I’m in an unfair fight and am powerless against this portion of my nightmare.

I’m not scared anymore – I’ve stared death in the face many times. And each time I gave it the finger – and got back up. But I guess I needed to feel safe.

I have alone time now, so I went into Aedans room and crawled into his bed. I turned the lights out and turned on this nightlight that I made for him. Usually when I see it on the wall, I feel strong. It reminds me of when I made it, what I was fighting against to get my hands/eyes/brain to work and reminds me I did it. Despite the struggles. Even if it did take me a week to do an hour or so of work, I was so proud that I did it.

Today, I sat in dark solitude. I turned this light on and I allowed myself to feel a little vulnerable for a moment, in terms of the fight I’ve been in for 6 years. And then it came.

I found myself sniffing his ‘blankie’ and staring at this light. The love and protective energy I built into this light rained down over me. And I felt what I imagine he does when looking at it. And it changed me.

I found myself standing tall, just like I did when I built this light. I found my ability to at least FEEL strong. And this light reminded me that I MUST survive this.

He doesn’t need a nightlight reminding him of his father. He needs me to be his father, and I can never give up.

So far I am still losing my battle. I am becoming weaker and weaker – my best days fewer and farther between and each best day is never as good as the last. My high water mark keeps getting lower and lower and my body continues to erode.

But…

I’m alive. And as long as I’m alive, I can tell my family I love them. An ability I had not always had – there was a time I was too weak to even speak. I can smell his head now, I can hear his sweet voice say ‘I love you Dada’. I can see his eyes and feel his hands while he studies my face as we lay in bed at night. His hands reading my face like braille.

I don’t have much, but I still can have these moments. And as a dear friend just pointed out, he needs me. Even if I am wasting away.

This light has magic powers – it replaces hopelessness with hope. Defeat with strength. Fear with love. Its rays shine strength and will forever continue to remind me of who I am.

He feels safe during his nightmares because Daddy is always there, even if only through a light. So by the same measure, I too am made stronger by the man who made this light.

I love you all, and thank you for standing by me while I take a knee here.

I won’t let my Son down. I just need a miracle.

Your Brother in Fight,

Michael

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

2 Comments

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:

Leave a comment

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

1 Comment

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.