After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Consequences

For every action, there is an equal and inverse reaction. It’s a fundamental principle of physics.

It’s also a fundamental principle that my body functions by for the past 17 years. Every act, every movement causes an inverse reaction—and whether or not of significance the accumulative effect is one that only time and experience have helped me judge. It is also one of the mysterious elements of my illness. For example, if I talk for thirty minutes or an hour, my body is so fatigued, even laying down and not moving, I will have sweated through all of my clothes. Do it sitting up for ten minutes, and I will not only have sweated through everything, but my limbs are so cold they are blue, and when I try to move any muscles to lie down, I instantly become stiffer, slur words, and an unable to string a thought together. After a few minutes lying down, on oxygen, and completely quiet, cohesive thoughts begin to return.

What is taking place to cause that? Factually, I can’t say. There are theories, and some blood tests that may indicate one way or another. But the closest lead I have is that it is to one degree or another lactic acidosis. Lactic acidosis is when muscle activity doesn’t have enough oxygen to convert into what I like of think of as muscle food -ATP-and it just starts producing acid that is toxic in the liver.

Why do I think this is what is happening after only talking? Well, the symptoms are the same, though less severe, when I have blood results proving this occurred after only pushing myself in the wheelchair for eight minutes, an activity I do about six—to—ten times a day, every day for years.

Cause and effect. I do an activity, my body can’t keep up, I feel sick.

Unfortunately, none of the neurologists or neuromuscular specialists think it’s much of a signal. The Mayo Clinic claimed the results were so extreme they had to be impossible. To which, I reply, if you are a Mayo Clinic person, open your mind and retest me yourselves! Or, in short, Bite me.

Another cause and effect is more immediate. The blood draw that went wrong that I shared in my last post, Professional Egos, resulted worse than we had originally thought, with not one but several blood clots and an infected vein. The blood clots are finally gone, but the vein is still infected, and I am commencing my sixth week on antibiotics. The long term consequence of that is still unknown, but not a good omen.

The more immediate effect is that the current sequence of testing that I was doing at Johns Hopkins is now on hold, as a) the antibiotics may give inaccurate results, but more importantly b) my body is too fragile to risk any further invasive procedures.

Which leads me to this fork in the road: how to make each risk count effectively.

What do I mean? When you are a patient with chronic / complex / or undiagnosed illness, you are responsible for being your own advocate, presenting your symptoms, your context in a compelling way to give the doctors the best chance at being helpful. The remaining invasive procedures John Hopkins has initially ordered are all repeat testing, which for the last several years has all come back normal. The idea in this fishing expedition of testing, is to hope that there will be a change or abnormal result that will warrant a previously untested procedure—really the holy grail of testing in my case—a muscle biopsy.

If the muscles are the ones not getting what they need during activity, as the lactic acidosis would indicate, the best chance for getting answers would only come in the muscle biopsy. Something, I add with bitter irony, has been mentioned, that should be done, if we can find enough cause, for the last 17 years—literally since I became a quadriplegic in the beginning.

Why has it not? Because it’s risky, it’s invasive, and without really good cause, insurance won’t cover it. After so many years, most specialists all agree it should be done, given that just about everything else has been.

But now with this new infection, I am responsible for presenting my case in a new light to try and compel that this risk is worth it. Really, that I only have one risk left and cant’ waste it on something going wrong on repeat testing. If they say no, I risk not only not having it done, but ending any further testing or appointments at Johns Hopkins.

It’s a high wire act for a tight rope walker who is exhausted, over run, and really, really, really over it.

As I stare at my computer trying once again to outline my story by symptoms, by narrative of possible oxygenation malfunction, wish me luck. Camelot just lays on my legs, waiting for me to not just start it, but finish it. Fingers crossed.

Mother’s Day

Mother’s Day

Professional Egos...

Professional Egos...