It seems that 2014 started with a bumpy road in relation with my Myasthenia. With two relapses in less than a month.
All I can see is the independence I’ve worked so hard on getting is slipping through my fingers. Already my husband and children are fretting and over protecting me. Up to this point, I’m not such a huge fan when things begin getting to this point.
Please, don’t call me ungrateful, but I’ve always valued my independence to a degree of insanity and its hard trying to cope with everyone telling me “don’t do a thing”.
All the fussing extends to my parents that to the least get a bit overwhelmed because they really don’t know how to deal with it.
This post began on a note of frustration, but moved quickly to vulnerability. Erasing most of what I had written yesterday to bring it up to date after visiting my pneumologist and neurologist.
With a day of difference.
As my pneumologist checked me and basically went over my new meds and called my neurologist over the phone in front of me, I felt good. He then put the oximeter on my finger and held it for a while. You know with all that’s going on in today’s world doctors can not engage in patting, hugging or anything else because it’s considered inappropriate. But, as he took my hand to check my oxygen levels he lingered there a while, just comforting me, making sure I knew things were going to be fine.
He’s been seeing me for some time now, as well as my neurologist.
He assured me that my Myasthenia was acting up and that things would settle down again. without forgetting to add as I left his office to not step outside in the waiting room, because I really didn’t need the flu now.
As a matter of fact, I knew that the clock had begun its countdown to shut down, so I embraced myself for the worst. Which by the way made itself over in just hours. However, this time around things weren’t so gloomy.
His job was to make sure that I had the right medications to protect the weakness of my lungs, but also the warmth and care that accompanied me as I left the office made me feel better. The thing is he always gives me a check up when any cold I suffer complicates itself because of my MG where is I’m in and out of his office in no time, this is the first time my check up was about something else and he took the time to not only be careful, but caring as well. As he said,
“It’s the myasthenia.”
Even if he said in a kind of matter of fact way, it was full of compassion with shades of feeling sorry for me. I didn’t feel bad because underneath it all there was an underlying care involved as well.
Fast forwarding, my dear neurologist (don’t know where I’d be without him), saw me today and went on with his business as usual. He usually prioritizes on getting me up and going, he said his goodbyes with REST and CALL ME.
As I left his office, I turned and squeezed his arm in a gesture of appreciation.
I didn’t mind too much about the rest part, but the call me means a great deal to me and my family. We know we can rely on him to get things going.
Which takes me to the inevitable goodbye to my independence, even if it’s for a couple of days, and hello to pampering and television weighing the storm over my head even if it’s short-lived.
I’m grateful for my family and my medical team, although MG is a hassle that strikes in the middle of the night without a knock, but at least I have wonderful people in my life that make things so much better.
So you see “mis queridos amigos” once in a while healthcare providers live up to the once forgotten pedestal of being the healers of the tribe.