Fragile: Handle with Care

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Fragility:

My existence has become fragile. Leaving the house presents a plethora of challenges from being sensitive to light, being sensitive to excessive motion and sound around me, all the way to the fact that movement is extremely difficult and very, very costly. Here’s one such example of just how fragile I am and how quickly my day can take a dramatic and ugly turn for the worse.

I meant to post this here a while ago, but as many of you experience as well, my brain is too busy trying to make it through the day that I don’t have much left for functions not related to daily existence. For some of you, you may not have yet noticed the effects of stress and/or anger. I noticed in the first 5-6 weeks of all this.  For me, having had a severe reaction, the effects of stress or anger are nothing short of horrifically ugly. Still, 5 years later I struggle with this daily.  Please, I would love to hear from those who can relate. It took me about 3 weeks to stop shaking and for the added pain and electrical sensations to begin subsiding. Just about this time, the flood hit Boulder – which only served to make things worse for me physically.

And again, every time my baseline gets lowered, it takes longer for me to get back to my previous baseline. Most of the time, I never make it back to my previous baseline. My new baseline is permanently lowered and the cycle of one step forward, two steps back begins all over again.

I wanted to post about this and my thoughts on it. But when my baseline gets lowered (like it was that day) I essentially am forced to crawl back into my shell until it gets better again. My brain and eye abilities follow my baseline too, so when things get worse, I get real quiet. Just the opposite of what you should be when you need help.

Even making food for myself becomes prohibitively difficult during those times. I’ve learned to deal with the daily fluctuations and the downward trends, but after 5 years it’s getting more difficult to cope. Especially since many of my basic needs still are not being met. ** I STILL DON’T EVEN HAVE A COMFORTABLE BED TO SLEEP IN!!! **

After 5 years, we’re still simply not getting the help we need. Makes it tough to get out of bed everyday when you know that no matter how hard you fight, you still can’t succeed without the basic help you need as a human being. Then, when I DO force myself to get out of bed everyday without fail, things like this can immediately destroy any progress I’ve worked so hard to make. Just erases it completely and sends me into a very frightening downward spiral of pain and neurological issues. 

Doctor visits are no different. They leave me in the same state.

I guess my point in posting this, besides just sharing, is that I would like to hear from those who have reactions like mine to stressors and/or anger. I know why this happens, Neurologically speaking. I was fortunate enough to have a Neurologist explain that part (at least). But I'd still just like to hear from others about their experience with Neurological symptom increases with stress or anger.

From my Facebook post – 6 September 2013

Yesterday was a very rough day, some people’s souls are just so ugly.

As you know, I rarely get to leave the house. These last 10 months or so have been rough as I've experienced some fairly big setbacks, but I'll get to that another time. 

Yesterday, Nikki had a root canal and had 2 wisdom teeth pulled. She was a mess, and it was time to pick Aedan up from school. There was no other option, so I drove her to the school. Besides the physical challenges I face daily, I would have been mentally unable to get through that on my own, it’s too much for me to process. The world still happens too fast and my mind and eyes both become quickly confused and overwhelmed. Just like many of you are experiencing.

I parked in a Handicapped space and made it about 50 yards to the door Aedan comes out of. For the last few days, the light tremors had come back. I was already shaking a bit. I made it back to the car, clearly having a difficult time. This was NOT one of the many times this might appear invisible to others. Once I got back to the car, there was an older woman walking around my car, clearly agitated. She asked who’s car it was. I responded that it was mine and I started to try to get in.

She stood in my way and demanded to know if I had a Handicap sticker/placard. I said no. I have permanent Handicap plates. Two of them in fact, front and back. I expected that to be the end of it. But apparently ugliness knows no bounds.

Instead of walking away after seeing my plates, this woman actually had the audacity to block me from getting into the car and proceeded to tell me how I took the spot of a little girl in a wheelchair and how that since I decided to park there, they had to wheel her further. She went on and on… I was stunned. 

In front of me was this woman who was hell-bent on badgering a clearly and severely handicapped man (with PERMANENT handicap plates) for parking in a Handicap spot.

First, my brain was too confused to respond. My brain knew what it wanted to say, but once again, I couldn’t speak. That in and of itself is a hugely frustrating part of this sickness. But worse still, is that instantly all my electrical pain, shakes, confusion, etc all became dramatically worse. I immediately found myself in an electrical storm of intense, shaky pain. This is how my body responds to even minor stressors now. I learned about stress/anger and it’s horrific effects within the first 6 weeks of becoming “floxed”. Now 5 years later, it still has the same effects. 

I wasn’t then and still am not too upset about what happened. I wasn’t even that upset at the time, just more in shock I suppose. But even minor stressors will trigger an instant and massive increase in all types of pain, mental/visual and mobility issues. Almost 24hrs later and I’m still shaking and trying to cope with the substantially increased difficulties and pain. Thankfully I’ve learned how to control even small amounts of anger most of the time. If I did allow myself to get angry or more upset than I had been, I would be in a far bigger physical nightmare than I am at the moment. 

This is less about that woman and more about what I’m left to deal with in the aftermath. She struck a chord though in that like the rest of you, I have fought to be believed since day 1. So to have yet another ignorant person insinuate that I’m fine struck a nerve I’m sure. Like most of you, having Doctors be entirely unwilling to believe that something this horrific can possibly happen has taken a toll. And I’m sure subconsciously that bothers me more than I realize. But the black and white of it is here I am, almost 24hrs after one person made brief but insensitive comments, I am paying dearly in tortuous pain and a frightening increase in symptom intensity. For no reason. 

I remember this, this is what I’d feel after every single Doctors appointment. This is one reason I had to give up on Doctors. I could no longer afford the intense increase in symptoms and difficulties after Doctors arrogantly dismiss all that we try to tell them. 

I’m not sure this makes sense or that there was a clear point. I don’t want this to be my first post in 3+ months, but I have to get this off my chest. This is how my life has become, and how easy it is to get physically hurt now. I think most of you would understand or have similar experiences. Thank you for reading, and I hope I’ll be able to post more soon. Until then, thank you all for the kind words. 

Love for you all.
Michael
******************************

Hope.

Site moved to www.ThenCameMichael.com 

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

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

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

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

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

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

Glutathione Part Deux: How to self administer a Glutathione IV if alone

Site moved to www.ThenCameMichael.com where you will find a new Glutathione section!

This post is now found here:

http://thencamemichael.com/2013/02/10/glutathione-part-deux-how-to-self-administer-a-glutathione-iv-if-alone/


How to prepare and self administer a Glutathione IV alone, without help:

Over this last week I've been able to finally log onto and use my Facebook account that Nikki made a year or two ago. It was only 6 mos ago when I last tried to learn it, but it was far too much for my eyes to process and I couldn't understand what I was seeing. Did log on, got through that part. But I couldn't understand the screen. I did see a box to type in, so I did and I just hoped that went somewhere that it was seen. So I'm happy to report that's a fairly big improvement for me. I'll write more on this later, it's a big deal to me to be able to finally start communicating again.

The point of this post is to answer a question I've been asked too many times in this last week. Which is "What if I don't have anyone to help me do this?" , referring to the video I made on self administering Glutathione. Or, "I'm too scared to do this", etc... If you've been where I have, you're far past a place where fear plays any role. So you are not too scared, you're so much stronger than you think.

Well you're in luck. In 2010 when I first started to do my own IV's, I made a couple of videos.

For those first few years, especially when was unable to speak, I had this dream I held onto which was that someday I would heal enough to find people suffering like me. And that when I did, I would be able to help. Then in early 2010 I had my first dose of Glutathione. Within minutes I was substantially more clear minded, I could stand and walk with comparative ease and I could speak clearly. I was still trapped inside my own mind, unable to effectively communicate and still so so confused. But I couldn't wait to tell those who suffered like I did all about it.

After some quality control issues with the supply my local Dr had (I urinated a LOT of blood after each Glutathione treatment), I didn't understand how to find other help. Again, my brain was so useless then. Since I couldn't understand the outside world enough to find help, I decided I would have to do it myself. So I set out to find the Doctor who pioneered the use of this miracle substance to learn about it. And I did.

I'm sure the rest of you floxies will understand this part too; I had too much shame about being sick that I couldn't bring myself to ask for help. I also refused to let Big Pharma's killing machine to take away from her or my Son anymore than they already had.  I didn't want Nikki to have to see this, she deserved better I thought.  She did help those first few times. But I really needed it everyday, and I was so ashamed of what had become of me that on most days I wouldn't ask. And I'd go without, even though it made me so much worse without. I knew that had to change. My family needs me to get better.

So I found this Dremel Desktop Vice on amazon which I thought just *might* work as an extra hand. When it came I was so excited because I was going to make a video that perhaps someday I'd be well enough to share with those like me.

The last video is a little longer, but please watch. Yes, I'm showing you how to do it. But most important, it's the first time I had recorded my thoughts and words for those like me. Through these I am talking directly to those floxies who are just like me. And I would very much like to share them with you now.

This is the very first time I tried this, but I wanted to record my first time so y'all knew what to expect. I'm glad to finally share these.

This is also the first blog post where I simply write and post. So I hope it makes sense. Usually a post takes me at least a month to write since I can't always find the words I want to use. Same thing with speech.

Last, I've opened comments up to all since it sounds like some were trying to contact me but couldn't. So feel free to post any comments or questions.

This is in 3 parts.




This first video is showing and explaining the proper preparation process for the Glutathone IV.





This second video is the set-up process and final preparation before injection.





Last, this third video is the actual process from start to finish without any help. During the IV I share my thoughts with you on things I hope you'll find helpful. So please watch.

a mark in time...

Site moved to www.ThenCameMichael.com 


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.

Saline is my friend. Lactic Acid is not.

Site moved to www.ThenCameMichael.com 

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.