Myasthenia Gravis

Finding the Healers Among Us

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.

via morgueFile

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.


When Honesty is the Wrong Approach

Being honest and straightforward isn’t socially acceptable anymore.  Now you’re probably saying that’s bull!!!!  I’m honest and straightforward, what’s wrong with you?

via Google images

Well to be honest to the truth, when someone let’s say maybe a preacher, or your boss, or a friend (not someone you casually know, like for example a Facebook friend type of thing), but maybe the ones you truly don’t want to mess up your relationship kind of thing, or your partner, girlfriend/boyfriend, fiancée, and or  wife/husband is saying or doing something you really don’t like, how would you respond to it?

Honesty can backfire and blow right in your face.

via Google images

Once I had a friend (like the ones I described before), someone I valued and cared for deeply.  I chose to be honest with her over a serious issue and basically we couldn’t get over it. Our relationship collapsed,  and to the day and probably till the day I die I’ll regret it.

In her case, there was no way honesty could be breached.  I was the one who would face the consequences of honesty.

Basically if we want our relationships up and going we can’t do the honesty thing as often as we would like.  I’ve known a few couples that when having to talk about some issues that were jeopardizing their relationships, one chose to be completely honest and wham, their relationship became history.

Don’t even go there if you need to address work related issues with your boss, it’s not even worth it. You’ll end up on the wrong side of him/her and probably get a bad yearly evaluation or worst get fired.

The days when you could work things out facing them are long gone.

As icing to the cake, the trend would be to talk it over with another person. Wow, is that bad or what?

Things become even more complicated when that same person, talks to you about it.  What do you do?  Can you call or meet the person and have a straightforward and honest conversation? Or is that out of the question?  Or is it easier to post a comment in your Facebook status that almost nobody knows what it means except you.

I call it the riddle game.  You have to try to figure out what’s going on with the person, but really don’t know what it is or who it’s about.

Probably that’s why our relationships have gone sour more too often, is it time for us to recapture them through the healthy channels of honesty.  I think it is, do you?