Thursday, March 1, 2018

Getting Old Fast Now

I am not a big fan of growing old. I mean, I like the part about acquiring memories and knowledge and developing wisdom but the part about my moving parts having issues from aging, that part I do not like.

Vulnerable Humans

It has been an interesting year for me and I have decided to share that journey because we need to talk about how vulnerable we are and about how our health care systems are limited in their capacity of diagnosis and treatment.

2 years ago. . . .

About 2 years ago I started to notice what I could only describe as "stress" starting to affect me.

Occasionally I felt "weird" and my body did little things that made no sense.

I brushed it off as being out of shape and getting older and told myself that at the very least I needed to get out walking more and spend less time sitting around.

I changed to a sit stand desk, I started to walk a lot more, I joined regular fitbit challenges and I was trying to be mindful about what I ate.

It was a hard year, in terms of my stress, and I had taken on a lot at work, in my personal life and with volunteering.  I continued to find things more often leaving me drained and I wrote it off as stress, age and not taking care of myself. Seemed realistic that maybe mid-forties is when I would finally discover that I was no longer a teenager? 

One year ago . . . .

One year ago on a family vacation away from our brutal winter I found myself unable to relax very well and feeling like I was somehow losing my grasp on everything in my life, it was like I was feeling tense when I wanted to relax. We were having great family moments and on the outside I was enjoying it but on the inside I was feeling messed up.  It was our classic family vacation filled with lots of action so I had no time to dwell on these feelings, but I knew it was messing with me.

When we came home from that vacation and I returned to work, I felt like I ran into a brick wall.  My absence had generated a pile of work and like never before I felt like there was no way I could catch up.  I felt like I was drowning in responsibilities that needed my immediate action and demands to set out the path ahead as well.

I hadn't recently changed jobs or clients or staff. This wasn't my first vacation to return from with chaos and crisis awaiting me.  Somehow I had changed in my capacity to cope.

My body began to revolt.

I started to wake in the morning with numbness in my hands and arms. I could feel parts of my body vibrating, most of the time just a subtle vibration but it was there. I started to have periods where I couldn't find my words and I would stutter stuck mid-word while my search function hourglass spun searching for the words.

It was frightening and thankfully my wife urged me to see my doctor.

My doctor ordered a lot of blood-work, put me on the list for an MRI and referred me to a neurologist.  I went back to my normal routine and pushed myself to try to catch-up with work and everything else I wanted to accomplish.  My body continued to reveal new mysteries in odd symptoms. My hands were now having issues with coordination and things felt funny and at times it felt like it was burning inside my hands.

The weeks that followed were exhausting and I will spare myself the effort of typing the details and you the effort of reading them.

Bloodwork = b12 super low on the verge of deficient, nothing else
Neurologist = nothing, too much coffee? anxiety? nope. nothing wrong
MRI = spots, nothing going on to warrant a diagnosis
Second neurologist = nothing wrong with you neurologically based on our tests, but obviously something wrong with you. sorry, its a waiting game that either gets better or worse
chiropractor = your body is not responding as it should. see a new neurologist, suggests check celiac disease (I do. gluten load, celiac test negative)

By this point I have all kinds of issues with numbness, spasticity,  spasms, twitching, itching, pain and weakness all over body at different times. Much of it goes away and I get short breaks were I have few symptoms.

My doctor continues to explore options as he thinks of them but as we come to Christmas of 2017 we still do not have a diagnosis and there is no sign of the symptoms stopping.

In January of 2018 I get briefed on my MRI from December.  No diagnosis but my doctor immediately books my next MRI for the fall. For the first time he uses the term"Multiple Sclerosis" in the conversation as something we are trying to eliminate as the cause of symptoms.  I ask for a copy of the MRI report (see below) and we agree to connect again in the future if anything changes. I honestly do not really know what the MRI report means and I admit when I got it at my last appointment I didn't ask questions because I assume no diagnosis means that there is nothing of value there.

Today my symptoms include regular/occasional leg drops where one of my legs will give out. My hands routinely struggle with certain dexterity issues and I routinely wear wrist braces to bed so that my hands don't curl in. I have random numbness in various places from my face to my toes, tension or tugging at the muscles.  There are other symptoms too but lots of symptoms I have had are also gone at the moment so I am happy with that. I am on no medications and other than the legs giving out most people have no idea when I am struggling with some oddity.

 Sometimes I wish I had a diagnosis so I could go to a support group or something so that other people who have also had these symptoms can validate that its not all in my head. I regularly find myself worrying that I have some psychosomatic condition and that by worrying about a diagnosis I am making it worse.  I have gone from feeling "normal" and focusing on life to getting distracted when my body doesn't behave normal. I like doing things, not worrying or thinking about health stuff.

It's very frustrating to try to pick something up only to struggle to get your fingers to actually pick the item up and then to realize people are watching you as you seem to be almost playing with the item.

It is so annoying to regularly drop things because apparently my hands either didn't grip something adequately or they let go, I never know the cause as it happens so sudden and I didn't think about picking something up I just did it.

I have a whole new appreciation for people struggling with invisible conditions. To the outside world you look completely normal but on the inside you can feel like you are falling apart. It's not that you want sympathy or pity or any number of other things people might assume, you really wish you could just be better or even normal again.

End of rant. Thanks for reading.

MRI Report
"There are relatively extensive punctate areas of increased T2 signal intensity in the subcortical white matter of both hemispheres. They are nonspecific in etiology.

There are two more linear areas of increased T2 signal intensity in the genu of the corpus callosum that are somewhat more concerning in appearance. They are insufficient for a definitive diagnosis. "

Monday, December 18, 2017

Star Wars The Last Jedi

Star Wars The Last Jedi.
I loved the movie.

I liked how gender and appearance didn't define or confine what the characters could accomplish.

I liked how leadership, and the potential to make a difference in the universe, was coming from many different angles. 

It was a refreshing look at the battle of good and evil that admits that masculinity is not the strong hero that saves the day that we have been fed in so much fiction.

Once again the idea that you can outsmart evil even when they have resources beyond your capacity.

Finally, I was left with the thoughts that dwelling on our past doubt and mistakes can cloud our vision of what we have to offer. Sometimes wisdom comes not in teaching others from what went well but in sharing our pain from losing control of that which we purported to be leading.

Sunday, December 17, 2017

fact or fiction

We have for a long time had The National Enquirers and "Professional" Wrestlers and those that believed that their fiction was real.

Currently though this game to attract readers/viewers and therefore advertising revenue is beginning to emerge as a absolute chaos of capitalism.

Everywhere you turn there are links to content that looks "real" but its fake. Whether purely for entertainment purposes or to cement their beliefs further people are clicking into this content.

What makes matters worse is not only that fiction, pretending to be fact, is ever increase but also that what we once considered journalism is being tainted ever increasingly to compete.

Just like in the TV business ratings make or break careers, profit and earnings. The move views/visitors the better the business, regardless of the lack of truth behind the information. 

Indeed we the people are tracked such that the advertising of the fiction is customized to suit what we will most likely click on.

Government's have stepped aside as the big internet companies leverage that traffic of visitors and viewers  for advertising revenue, shaping the flow for maximum audience retention and profit.

When we watched TV or read a newspaper in the past we were an anonymous consumer of advertising but today everything we do is tracked online and the ever increasing fiction content of the internet is dominating what we consume.

How long before we accept that only what we can feel, touch and taste is truth? How long before those are gone too?

Wednesday, October 4, 2017

Predicting the demise of Facebook

Over 5 years ago I predicted that Facebook would be gone in 5 years.

It turns out that I was wrong.

At the time I had looked at Facebook and saw that the features and content were so juvenile that it couldn't possibly survive in the long run.  Just looking at the name and the original intent was the foundation of my prediction and seeing the interactions 5+ years ago confirmed it for me that the collective "we" would grow out of Facebook.

I assumed people would stop the bickering about celebrities and consumer brands. I assumed people would learn to distinguish between truth and fiction based on gaining knowledge on the internet through credible sources.  I assumed that a web site based on Facebook's model could not sustain itself.

I did not predict that people would so enjoy sharing the most mundane parts of their lives with each other in real time. 

I did not foresee that a person's value would be assessed by their "likes" and "shares".

I did not predict that trolls would rise to have so much power to manipulate and provoke.

I did not predict that the online advertising regime would grow so massively reckless that the content of the tabloids in the checkout aisle would grow to dominate the content of today and be the source of so much misinformation.

I predicted the demise of Facebook because I had hope that the internet would enable people to better themselves. and I saw no role for a web site like Facebook in that future. I hoped that people would use the internet to learn about culture, science, technology, philosophy, society and peace.

That social media has bloomed around many of the dark parts of society is truly a saddening reality.

Thursday, February 16, 2017


I think perhaps the greatest lesson I will learn in my life is the expansive disruptive power of the label.

I have never liked labels, not since I was a small child.  I was labeled with many negative labels as a child and I am hopeful that some of those types of labels are reducing as the system is slowly coping with issues around bullying. As I grew I came discover how labels worked in community, making it simpler for people to identify whether you were with them, or not. The problem was I often ended up out of the community either because I did not have their label or I just had not made a definitive decision to accept everything with that label. It has been an interesting path to say the least as I reflect back on it.

One troubling fault in it all though is just how deeply rooted our society is with its labels and the dependencies. From an early age we create contrast between labels that leads to further contrast as we age and are exposed to more scenarios.