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.