The beginning: Months 0~3

The Beginning: Months 0-3

My old life:

I was a good man, and I was working very hard to become a great father and provide for my new family. We lived in a house that we loved and that I was trying to rehab.

I was a Senior Network Engineer with a great and a very large Non-Profit. I absolutely loved working there, it was a very relaxed atmosphere compared to the hectic pace of the client sites I was used to as a Consultant for so many years. They were all great people to work with and were so good to me.

I had a good Career. I was working out nearly every day, I was eating a clean and very healthy diet. I was on track to provide a secure life for my family.

Even though I was very fit and healthy, I was having a very difficult time getting quality sleep. I had learned that I had Sleep Apnea a few years prior, but now that I was a family man I had to do more for my health than just toughen my way through it.  In September of 2008, I had scheduled a minor surgery to help correct the Sleep Apnea. A few days before surgery, I developed a chest cold and had a slight cough. I would have thought nothing of it, being a common cold and all. But I didn’t want to just show up on the day of surgery sick only to find that for some reason they’d have to cancel surgery. I called the surgeons office on 15 September 2008 to let them know and ask if it would be an issue. They said no, but ‘just in case, I’ll call in a prescription of antibiotics for you to pick up’ . Over the phone, I was prescribed Levaquin ‘just in case’. I went to the Pharmacy down the street from work to pick up my prescription. I found not only Levaquin, but I also found I had a prescription for a Medrol Dose Pack of Cortico-Steroids.  I was not warned of any dangers, I did take the time to read the brief insert that was in the bag. It said in RARE cases, perhaps tendon damage may occur and “mainly in the elderly”. What a lie.

My life as I knew it was over, in its entirety – and it was about to take a horrific turn into a nightmare of indescribable torture from which there is no escape and there would be no help… Only I didn’t know it yet.

Surgery went as scheduled. They made my tonsils and the base of my tongue smaller, put 3 ‘pillar implants’ in the soft tissue above my Uvula and a few other things all in effort to create a larger airway. It worked in so much as my Sleep Apnea has much improved, I might even say it’s gone now. But there were complications afterward.

After a week or so of recovery time, I was back to work for a few days. I was still very slow and run down, I was still recovering. Looking back, I now recognize how badly my mind was already affected. I was very detached from my body and my life. It was like I was living in a movie or a dream of some sort. I was on Auto-Pilot going through the motions of the day, but being completely severed from the presence of it. My thinking was much slower and I was having a rough time processing things. Meetings, easy questions my co-workers would ask. I just couldn’t seem to follow conversations. I noticed, but thought I was just still recovering from a rough 10 days. But perceptually, I was a hot mess.

Around the 3rd day back at work, my throat had an area of razor sharp pain and I noticed I was having a little trouble swallowing. I left work to go see the Surgeon in his Downtown office. He did an endoscopy and saw a burn mark from one of his tools in my throat as well as swelling. He gave me a high dose prescription of Prednisone for the swelling, another Cortico-Steroid as well as another prescription for Levaquin “just in case it becomes infected”. Luckily I didn’t start the second bottle of Levaquin, I was forgetting to take them at times so I had about half of the first script left. But I took the steroids as prescribed and stayed home from work as I was becoming sicker. The Doctor also told me to take NSAID’s for pain (Advil). Years later I’ve learned you’re not supposed to prescribe Fluroquinolones with steroids or NSAID’s. I also learned that NO ONE is held to blame in these cases. We’re just left to die.

2 days later, I was admitted to the same hospital in the City where the surgery took place. My Surgeon was concerned I was becoming infected as I had a fever and was a little weak. There at IL Masonic I learned that I suffered from “Viral, Fungal and Bacterial infections”. Somehow despite being on the worlds most powerful class of antibiotics I was riddled with infections (I later learned this is not uncommon in Fluoroquinolone Toxicity). On discharge 4 days later, I was given a prescription for the antibiotic Avelox. Another Fluoroquinolone. I was still on my first bottle of Levaquin, and because of the Hospital stay I hadn’t taken any in those 4 days. I am not sure if they gave me IV versions in the Hospital or not. But I hadn’t taken any on the day that I was discharged, I was too spaced out to remember to take them. The next day would mark beginning of my nightmare.

6 October, 2008.

The morning of 6 October, 2008 I woke up with a feint but somewhat intense tingly sensation in my legs. I could move them, but they didn’t feel right. I could feel the sensations in my legs, but when I would try to use them I couldn’t feel them. As if I was disconnected from them.  Walking now meant that I had to watch my feet to see if they were under me or not. The brain-fog was intensifying and I was starting to feel confused. I thought I’d been through a lot the past few weeks, and I did just get out of the hospital. So I thought I’d give it a day.  I called the ENT Surgeon’s office again the following morning. This time, they just took a message saying they’d have the Doctor call back. I just wanted to know if this was normal or not. I wasn’t worried too much, but I did think it at least warranted a call. Two more days and several more calls to the Doctor. Nothing, no call back. Finally on the third day a Nurse came to the phone to ask what the issue was. She sounded frustrated when I told her I couldn’t feel my legs and was having a hard time walking. She snapped back saying “ The Doctor says to call your Primary Care Physician” and promptly hung up.

This was the Doctor who prescribed these antibiotics, he should have told me to immediately stop taking them.  HE was responsible for this.

That was a Thursday. The next day, Friday, Nikki drove me to the ER at the local hospital. I was having an increasingly difficult time walking. So they brought a wheelchair to the curbside and brought me in. Immediately they recognized that my left eyelid was drooping – a sign of Neurological damage – and we skipped the typical admission and triage process. They did that while I was on the gurney in the hallway in between the Neurologists questions.  I was able to speak clearly, but I wasn’t able to say much of what I was feeling or thinking. I was confused already by the multitude of symptoms and by the motion around me. I was able to tell them that my legs were tingly and that I couldn’t really feel them when I try to use them or walk.  I felt oddly calm during the whole process, but I just couldn’t seem to use the words I wanted to. They performed CT’s, MRI’s , blood work and a Spinal Tap and settled on Guillan Barre which is a type of Peripheral Neuropathy, damage to the Peripheral Nervous System. They told me a little of what to expect as it progressed but I really couldn’t follow what they were saying.

The next day I was transferred to Rush University Medical Center for ‘Elevated Care’. I was immediately admitted to the Neurological Wing of their Intensive Care Unit. There they explained again what the previous Neurologists did. I was told to expect it to progress quickly and that as it moved up from my legs it would paralyze everything in its path. Organs included. I was told that I would be on Life Support for an undetermined period of time and would have an unknown prognosis. A lot of talented Doctors and none made the connection to the antibiotics I was prescribed.

After numerous standard tests came back normal, I was told this was all a panic attack. They sent their Psychologist to my room who found me to be perfectly sane and found no reason to believe any of this was in my head. Both his opinion and my insistence that something is very wrong with me did me no good. I was discharged and sent home. In less than an hour, I went from being in Intensive Care to being in the parking lot. I didn’t understand.

This would become a pattern in coming months and years. IF we even learn what’s happening to us, MOST of us never find help.

Once back home, things continued to worsen. All the sensations I was feeling were becoming more intense and new Neurological and other issues developed daily. Within 2 weeks, I was in a wheelchair. At the time, Rush University was ranked #4 in the country for Neurology. If they couldn’t figure it out and thought it was all in my head, where do I go now for help?

My cognitive abilities were worsening fast. My intellect was still intact, but it was like trying to think through an intense electrical mist. Add to that, worsening visual and perceptual issues. I didn’t recognize the mental aspect as an issue or symptom at first, I just figured I must be overwhelmed and needed to try harder. I decided that after the embarrassment at Rush University, I was not going to bring anyone with me to my appointments anymore. Big mistake, but I had no way of knowing.

Over the next 2 months I had seen several other specialized Neurologists and various Doctors. One suggested AIDS as a possibility, another “expert”, Dr. Barry Arnason at University of Chicago, tried hard to convince me that I was suffering from Migraine Headaches. Yep. All this was due to Migraines. He also helped me up out of my wheelchair to the hallway where he started screaming at me to “RUN – C’mon, RUN!! Like you’re late for the bus”… “C’mon, it’s just Migranes. RUN” he yelled. Talk about embarrassing and infuriating. I was IN A F*CKING WHEELCHAIR you A-HOLE. I will never forget the humiliation and the hopelessness he caused.

I was so confused, the brain-fog had intensified as well as the perceptual issues of living in a movie. So I just couldn’t understand what was happening around me or to me. What I DID understand is that I had been to a handful of otherwise talented Doctors and they all seemed to think it was in my head. I doubt I’ve ever met a Man who wouldn’t feel embarrassed and ashamed. I mean, how many times can you drag your family through going to Doctors and Hospitals only to be told this is all a panic attack before you become so ashamed that you just stay quiet? I felt I was the only one who believed me. And I sure as hell wasn’t going to drag my family through this anymore. I saw the pattern developing. What’s a Man supposed to do?

31688-christmas2008_daddywheelchair1

Christmas 2008

 

It would be almost 3 years until I was diagnosed with Mitochondrial damage, a unique and horrific condition that disrupts the energy production in the cells. Mitochondria are responsible for 90% of the energy required by the body to sustain life. Mitochondrial damage explains all of my symptoms and the pattern(s) it follows daily. But until that time, I/we were left in the dark to try to make sense of this confusing pattern of intense events.

 

By early December 2008 (beginning of month 3), besides the growing list of Neurological issues, my entire body was becoming extremely weak at times. Sometimes much weaker than others, and this was confusing me too. I had more than a few otherwise talented physicians telling me that all or most of this is in my head. And now I’m starting to notice slight waxing/waning of the intensity of symptoms. One day I could at least stand – maybe even walk short distances and make it look good – where as other days it seemed like blinking took more energy than I had. At that same time, the brain-fog seemed less intense as did other symptoms. All the symptoms travelled as a group. Meaning when one thing improved, it seemed like nearly all symptoms improved (and vice-versa), any improvements were gradual.

It wouldn’t noticeably improve overnight; improvements would be slight and noticed over days or weeks. But it sure as hell gets worse in an instant. Below is an exerpt from one of my “scraps of paper” where I wrote my fragmented thoughts over the years.


It was about mid-November (month 2-ish) or so where I felt the effects of stress and/or anger for the first time. I was in a slight upswing in symptom intensity and was able to walk short distances. Nikki and I went for breakfast and when we came home, I remember getting angry about something. Instantly, all the improvements I had were gone, many new sensations appeared and I felt the electrical pain for the first time. In literally less than a second, my entire body was on fire with intense electrical pain – face included. I started to shake and quickly became weak. I was able to make it from the car to the back room near the garage that would later become my prison. Whatever was happening to my body because of that burst of anger was getting worse. The shaking and intense electrical pain lasted for days, but the weakness and worsening of symptoms that it caused lasted much longer. This was yet another thing to the Doctors credit I thought. Stress and/or anger makes it worse??? No way, now that sounds like something that’s in my head and since it seemed to affect all my symptoms, my logical brain thought maybe almost all were in my head too? The Doctors must be at least a little right I thought. It all just sounded crazy to me. My shame bucket was filling fast.


 

This is where the mental warfare really began I think. It would get much worse in coming months and years, but this is where it began. I was struggling to believe myself, but to the Doctors credit, this was making less and less sense to what little mind I had left. I mean, something that severe doesn’t just improve for no reason, right? I mean, if it’s really affecting me that much, it should always be reasonably close the same intensity right? If I need a wheelchair today, I should reasonably expect to require one tomorrow. But that’s not how it went. At least at first…

During and up until this time (early Dec 2008) I had tried very hard to work from the hospital or home. The Management at Rotary were very flexible and supportive, but after nearly 3 mos out of the office I was not able to keep up with my duties. It was then suggested I go on disability and focus on my health. They made the right decision, my health was poor and becoming worse by the day. But still, I felt I was beginning to lose the life I built and knew. Little did I know just how much I would lose in coming months and years.

Shortly before that burst of anger in late November, I was able to borrow a spare wheelchair from my Grandmother. Getting one of my own would mean accepting a reality that I wasn’t ready for. Besides, I felt if I had one of my own that I wouldn’t work as hard to stand or walk, which was becoming increasingly more difficult.

About 2-3 weeks or so after I got the wheelchair, I began to lose my ability to move myself around. My hands, arms and shoulders would fatigue extremely fast and were pretty weak. Walking was very difficult at best, but I couldn’t use the wheelchair if my hands/arms were too weak.  I was properly motivated to walk on my own but I just couldn’t seem to most often.

Logically, very little of this was making sense to me. I mean not even 12 weeks before this I was in the gym for 2+ hours every day. After the experiences I’ve had with Doctors up until this point, and after I failed to make sense of this in my head, the shame started to take over. Eventually, I just quietly stopped using the wheelchair and since I couldn’t walk either, I found a spot in the back of the house to hide during the day using the wheelchair only at night to make it to the bedroom or to kiss Aedan goodnight – I didn’t realize it yet, but that hiding spot would be where I would ride out the darkest of times and would be forced to face my deepest fears through terror I can’t yet describe.

I didn’t know how to explain what was happening. I couldn’t wrap my mind around it, and I didn’t realize how badly my mind was affected. I noticed it of course, but I thought I just needed to try harder. And I was so detached from reality and slow. There were so many sensations and so many different types of pain, in my mind it felt like I was in a room with hundreds of people screaming at me for attention – so many that I couldn’t understand any of them. And unless I knew what to say or felt I would make sense, I wouldn’t say anything. I felt that the more I would complain or the more I would say, the less I would be believed. And after the experiences with the Doctors up to this point, add in the slight waxing/waning of my symptoms and my inability to understand it myself.

This is when I started to worry I would lose my family over this. I had no reason and years later I realize how foolish it was to think that. But I was convinced that if this were to continue to play out this way, I would absolutely and inevitably see my family torn apart. I had to take this all on myself I thought.

Poof… I blew a fuse somewhere.

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