Month: January 2013

a mark in time…

2 Comments

This is a good representation of my current nighttime baseline. I think I should start posting these from time to time. It would be a good way for me to look back at my progress.

Like many of you other “floxies” know, the intensity can vary. Some days (or months) are better than others so this can change for the worse very quickly. When I do have improvements, it’s very gradual. Even just returning to previous baseline takes months after I’ve pushed too hard or got sick (or stressed, angry, etc).  Not an all-inclusive description, but here is a brief note on where I am now.

Below is a transcript of a recording I made on the 14th of this month.

“Its about 9:30 PM, and I wanted to try and record what some of my typical days or nights are like. Right now, as usual I’m very… I’m just short of breath. And my breathing is very shallow. And like my Nurse pointed out, I don’t seem to breathe too often. And when I do I have a very hard time getting a full breath.  And it feels like there is that closing in my throat that I went to Dr. Li about a few months after this started – 4.5 years ago.

My heart rate is up. My heart doesn’t hurt like it used to. That hasn’t happened since about April or so of 2012. My heart is definitely tired and it does strain, it just doesn’t hurt.

My body is incredibly heavy, and tingly. I have a burning sensation all over my body, including my face. My muscles feel tight. Very very tight. Even to the touch, my leg muscles are extremely tight. And they’re very painful. As are my joints. My hips especially. But my knees have started hurting again. And my body just feels tired. Like I had a workout where I went past muscle failure. My body just sort of shakes.

My eyeballs feel numb, but they also hurt. They sting. My mouth is so dry. Very dry. My nose and my eyes are very dry. So much so that it hurts. And its not the humidity in Colorado, it’s been like that ever since it started and Chicago is a very humid place.

Feels almost like an electrical pain running through my body. And everything feels slow when that happens. My thinking gets slower. My eyes, they are a little blurrier than usual. They seem to strain as I hit the wall.

Saying I’m tired isn’t the word. This is so far past tired. I’m just heavy. My chest is heavy. It’s tight. All my muscles feel tight. Even my biceps. Noticing my hands feel tight… and I’m starting to slow down a whole lot.

This is generally an improvement. Until about June of 2012, it was always far worse than this. The way I feel now is how a single good day would have been back then. It’s just my body is so weak. I’ve become so weak I’ve lost so much muscle. I’m at 137lbs now. And while I’m experiencing some improvements with the intensity of the symptoms, I can do far less because my body is so weak. It’s just really taken it’s toll on me.  But I fight every day. Every day I fight. “
 
What I recorded that night is typical for me lately. Far better than it was at night 6-8 mos ago, same issues and sensations, just not as intense. There is so much more I want to add that explains what it’s like to be in this body and what it’s like to work through the mental challenges I now have thanks to big pharma. But I will have to make do with the fragmented thoughts as they come.
I recently had the chance to speak with several more people who have been “Floxed”. It felt great to relay the progress I have made and relay as much of the science and remedies I have learned as possible. I found it incredibly helpful for me as well as I was able to simply say the things that I go through. Even though only another “Floxed” person could truly understand what I was saying, the point is that I finally got to speak and be understood. All the symptoms and issues that I have a hard time describing were simply understood as they too are experiencing it.
Best of all, we got to speak about some of the mental challenges we now face. Levaquin (Avelox, Cipro and ALL Flouroquinolones) cause brain damage amongst many other major issues.

How much can a Man take? Devistating news today…

4 Comments

I have been thinking a lot lately about this blog and it’s purpose. I think it has many, but I started to realize this can/should be a place I just let it all out. Maybe some days I’ll post random memories of my journey. Or others I’ll post how I was that day, good or bad.

For the first 4-5 months, I kept logs describing as best I could how I felt and what was happening. While my mind was already experiencing brain fog and my thoughts were slower, I was still able to write somewhat. Around month 4, the Dr’s at the Mayo Clinic suggested I stop keeping logs as that wasn’t helpful they said. I believed them thinking I might just make myself crazy. So I stopped keeping daily logs and soon found myself worsening quickly.

Soon unable to understand the world around me, unable to produce a voice or keep my head up as my head was too heavy. I couldn’t swallow food, breathing became shallow and forced. Heart problems, vision problems… far too much to write.

Soon, my body was too heavy to move at all and I was stuck in a chair at the back of our house. For nearly 2 years. I wanted to cry out for help so badly, but I simply could not.

I have since tried hard to write about what was happening. But up until recently the cognitive issues had been too debilitating for me to have more than minimal function, so very little made sense to me. Good days have been few and far between. I did make a bunch of audio recordings on a handheld recorder. I haven’t listened to any yet, I hope I recorded in good detail as I don’t want to forget even a single day of what I’ve been through.

Since I became “floxed” and severely disabled, I have been almost obsessed with being positive for those around me. I didn’t and don’t want to be a downer. I keep a strong face despite the pain, heart/visual/mental and mobility issues and I try hard not to let it show. I don’t talk about this much and try to think about it even less. I want my family to live outside of the sadness and struggle of my every day life. I too wish to live outside the sadness and struggle.

While perhaps a theoretically unhealthy way to ‘cope’ on my part, that has had some amazingly powerful unforseen side effects. I have become stronger and yet more peaceful. I have become truly greatful for each little moment of life that my body allowed me to participate in – however small or brief. I am told that I’m an unusually positive and funny person to be around. So while this has taken everything else, it has not taken my spirit. Yet.

I hope to write a great deal more about that aspect soon as I want to share the other side of this journey, the good side, with all who care to listen.

But I also need to start letting this out. Even if it makes sense to no one but myself. I don’t talk about the details of this much. Not even with Nikki. I mean, she is well aware of all that is going on. But I just don’t see the purpose in continually reminding those around me how much this really sucks to be in this body. EVERY second of EVERY day is an excruciatingly painful struggle for me, in every concievable way.

And today it hit me. Just write… it doesn’t have to make total sense. Just write.

So, I ask you. How much can a Man take before his will and spirit are broken?

Those of you reading who have been poisoned by Levaquin (or Avelox, Cipro, etc) will understand this all too well. Getting Medical help has been all but impossible. I have seen countless Dr’s who completely dismissed what I was trying to tell them, and even more who just wanted me out of their office as fast as possible. That all took physical and mental energy that I couldn’t spare and would cost me dearly in added pain and weakness for weeks or months afterward. Not to mention the added mental stress of trying to figure out how to explain ANY of this to a Dr in the 15 mins you’re given before they nudge you out.

Sadly, I have mostly given up on Doctors. But, I didn’t give up on my survival. It simply isn’t an option.

Not able to find a Dr (or afford to) to help, or to even do IV’s for me early on?
Fine. I’ll do it myself.

But wait, I have no clue how to do it and no one to show me? Only one way to figure it out. Keep sticking until you hit a vein.

Terrified of needles? Blurry and doubled vision? Have tremors and shaky hands?
Don’t matter. Do it anyway. Be Aedan’s hero.

I cannot afford proper Medical treatment for what Levaquin has done to me. I cannot afford to eat properly as, thanks to Levaquin, my food costs have almost trippled. I must eat only organic and/or natural foods because that sh*t is in OUR FOOD SUPPLY too. In all of the Chicken and Beef you find in every supermarket. In fact, an estimated 70% of the sales of Levaquin and those in it’s class (Fluoroquinolones) is to… wait for it… THE AGRICULTURAL INDUSTRY!

So I must eat only Organic Grass-fed Beef, natural pasture Chickens, etc. to avoid re-poinsoning myself. Further, I can only eat organic produce as well. The pesticides and chemicals used in regular produce is more than my body can process.

When was the last time you checked the price of food that isn’t synthetic, tampered with, genetically modified or chemically altered for profit??  Not cheap. But no use getting angry or upset right? Right. I just eat what I can. Keep my chin up.

Statute of Limitations ran out before being able to find a Firm willing fight Golliath? Suck it up Michael. No use getting upset over something I cannot control. I took it on the chin as I have every second of every day of these last four and a half years.

I could go on and on. This little bit doesn’t really cover even a little of what’s happened. Point is, I took it all in stride as best as possible. Which has been an amazingly enlightening experience for which I am greatful.  BUT…

MetLife, my disability insurance company, had cancelled and stopped paying many months ago. Saying essentially that they didn’t feel I’m disabled. So naturally we filed an appeal.

Today, we got the response back. DENIED.

Citing the vague-ness of all the Doctors I had seen since day one and the subjective nature of my complaints, Doctors HIRED BY METLIFE determined I “do not meet their definition of disabled”. Despite having a letter stating my substantial disability and Mitochondrial dysfunction from one of the best Neurologists in the world… Despite all crystal clear evidence, they denied our appeal. Because they can.

Of the many lessons I’ve learned during this journey, one disturbing lesson is that clearly far too many in this world will not do the right thing unless forced to by law. While we DO have laws to “protect” us as citizens and consumers, sadly, the truth is those laws have no bite for extremely wealthy corporations. They are above the law.

And just like I have been, those hurt by these companies are simply left for dead.

________________________________________________________________________________

The above is from 28 September 2012. I didn’t want to post this as it is becuase the last half didn’t make sense to me as written and seemed too negative. But it is my truth. And my truth must be told.

We have been trying to keep a roof over our heads and as much food on the table as we can afford. I am only taking a small portion of the supplements I should be taking and obviously cannot afford medical care. We are trying hard to make it on Social Security Disability and hopefully soon we’ll have food stamps.

But considering my Injectables (Glutathione, B12, HCG) are near $650 per month and my bare-bones supplement routine is upwards of $300 per month. That’s almost $1000 per month to survive what an incredibly weatlhy corporation did to me. I also desperately need Hyperbaric Oxygen treatment and Stem Cell therapy, both of which would make a massive difference leading to substantial improvement.

I keep pointing out the weatlh of the Big Pharma Corporation (JOHNSON & JOHNSON who owns Ortho-McNeil) that did this to me becuase they can more than afford to make this right. I can’t even afford FOOD. But again, doing the ‘right thing’ is clearly something that’s been lost along the way.

I just cannot process how people can sleep at night knowing what they’ve done to so many victims of their greed.

I for one would have no heartburn about bankrupting my company, even driving myself bankrupt to make it right for every single person I had hurt. Without a second thought. I would then spend the rest of my life continuing to support those who suffered.

I will teach my Son those same values. Even though clearly uncommon now, right is right. Truth is truth. And no matter how lonely the road may be, always hold true to your belief in doing the right thing. Above all else, above self, at any cost.

At any rate, thank you for reading. I just had to get this out.

Saline is my friend. Lactic Acid is not.

Leave a comment
 
 
 
 
After the Saline and Glutathione combination I notice an improvement with the tightness and some of the related pain. Today I feel an unusual amount of improved clarity of thought. Clearer in thought enough to write and post. Generally I begin to hit the wall by 4PM at the latest. Which also means that thought becomes much cloudier and tasks like posting this would be something I would not be able to do.  I do however feel that the recently increased dosage of NAC to 2400mg has a lot to do with this as does my recent additions of far better probiotics and digestive enzymes as well.

While I noticed improvements, I am still in fairly intense pain. About a 6.5 overall at the moment (6:54PM).  My entire body is in pain, legs are by far the worst for pain. My knee and hip joints are also intensely painful and feel loose.

 

I wrote the above yesterday, but my mind continued to soften (I was starting to hit the wall) and soon I was unable to see well enough to read nor be able to continue communicating my thoughts effectively. Make no mistake about it, the physical damage is devastating. But even with all of the things Levaquin has done to my body, it’s the effects on the brain that really make this nearly impossible to live with.

Back to the subject.

About 1.5 yrs ago I decided I wanted to try to add a Saline drip to my IV routine. My reasoning was that I was certain that certain types of the pain I’m experiencing is being caused by an abundance of Lactic Acid build up. When I try to move my body quickly, like tickling my Son for instance, an intense burning sensation washes over my entire body. Face, arms, legs, chest, back, etc. It stands to reason that I am producing an abundance of Lactic Acid/Lactate which causes the predicable pain I experience.

I used to work out often and am no stranger to Lactic Acid. I know that two of the best things I can do for Lactic Acid and it’s pain is movement and fluids. After workouts, the more you move the less sore you are, right? Well since I cannot move all that much anymore, fluids would be my only weapon.

I asked my primary care Dr for a script for NSS at 500ML. He looked at me like I had nine heads, but eventually agreed. Since then, I’ve been able to try a drip under different circumstances and different types of pain, on the spot since I have the supplies at home and am insane enough to give myself an IV even though my hands shake and I often do not see very well.

As I mentioned in the video, it does help. It doesn’t take away a lot of the pain(s), but none-the-less it takes away more than enough to notice and be grateful. And again, small wins are still wins.

With luck, I’ll be able to post more soon.