First, let me point out that I am one of the lucky pioneers that get to (small breath, softly) “…work remote…”
I enjoyed this status on and off while working for CU’s Alumni Association, now full-time as I work for Kanha Technologies.
It’s amazing how much you can get done without pants. Hm. That didn’t come out quite right…
I say this by way of underscoring that not only is my job done from the seated position, but the goal is also actually to hold as still as possible for ridiculous lengths of time and look fixedly at something. The marginally-astute will realize I’m poking fun at computer use. Sedentary? Try ‘sessile.’ It’s really bad.
So concerns about energy weren’t even on my radar. To put a slightly sharper point on it, this disease sneaks up on you like a car salesman on a hot August day – the first thing I noticed was the scent of sweaty plaid and the hand on my shoulder. YIPE!
First, my eyelid drooped. Well, shit, I smok da ganja, das how ‘teez mon… NOPE!!! Even Marley could see his audience! Hm. File and forget. It went away.
Then, weeks later, I had trouble speaking. That tore it. Nobody shuts me up!! (so I thought) So, off to my doctor.
My relationship with Suzanne Stamm, MD has always been cordial, let me say that first. I will qualify that I am a disconcertingly-inquisitive patient and that she very likely heaves a sigh of relief when “that guy” finally leaves. So there’s that. What impressed me is that she correlated my history and kept track of the big picture. Thank heavens for detail-oriented people that do their homework. Well done, doctor, well done. Hippocrates is nodding and smiling.
Paul Sykes, MD, PhD is my neurologist. Thank heavens he did a research paper that led him to practice in this field or I’d be a hurtin unit for sure. Also, he’s a wonderful person. Very respectful and gets the human side – thinks ahead and plans. His foresight to get me into the hospital quickly kept this from being a home tragedy. His observation that my breathing (diaphragm actually, more on that) was now involved was spot-on and proved to be the biggest challenge at first. What is it realtors always say… Location Location Location.
Now that I’m on the other side of the IVIG therapy I can look back and see just how narrow the tunnel was that I came through. The treatment itself makes you secrete like crazy, we’re talking bowls of hell-flavored meringue. The dis-ease (lovely word, innit it?) makes your diaphragm weak which makes inhaling harder and harder since you can’t draw it down anymore. Trying to get a quick CT was like diving to the bottom of the pool for a long couple of gasping minutes. When you lay down your viscera shifts and spreads out from gravity, pushing harder on your diaphragm. You get the picture. Lastly, it suppresses the swallow and cough reflexes. One deep breath at the wrong moment and goop goes down the trachea, hopefully, to be coughed back out. Not always easily.
Looking in the rearview mirror I can recall having trouble breathing in general, more when I laid down. Messed with my agenda… all the little details count. The big, fancy, expensive database and support hardware and technician are worth it. Jus sayin.
The swallowing issue gets big when you get can’t get enough sustenance down. Five days on IV only is not a diet I recommend. My Potassium level was adjusted more than once, quite painful to receive but other than that and 18+ needle sticks, I felt absolutely no pain. Heart-wrenching terror? check! Cosmic Humility? check! Shock and Awe/Ahh? doublecheck!!
So, after finishing up a ‘full day’ of working remote, I find myself alive and safe again.
This is no small feat ladies and gentlemen.
Not everyone gets this lucky.
Be kind. Everyone is fighting a battle.