Monday, December 19, 2016

Mr. Marfan Man, Do Not Pass Go, Do Not Collect $200, Go Directly To...

Each day is another opportunity to move across life's board game.  More likely than not I end up drawing the Go Directly To Jail card with each roll of the dice.
Marfan Syndrome slows me down but doesn't stop life from happening. #Dissection life

Of course in my Marfan dictated life the 'Go Directly To Jail' card bespeaks of oft unexpected maladies.

Physically and mentally there are so many challenges slowing our daily struggle towards the Park Place destination.

Constant setbacks are so frustrating, especially when I have adopted a healthy vegan and sometimes pescataria diet.

And I walk daily, do yoga, stretch, practice deep breathing, spirituality and all the 'right' things my body and brain need.

All the while I see young and old others drinking colas, eating fried fast foods and even doing nicotine seemingly unfazed health-wise.

So what did I do to deserve this?

Nothing, of course.

Its just I am challenged by a connective tissue disorder.

And living with a dissected aorta.

The healthy diet and faithful gratefulness and exercise does pay off I believe.

But this Mr. Marfan Man can seem to be making progress when that nasty little card is flipped over.

Go Directly To Jail can translate into a seriously pulled leg or thigh muscle, one where I honestly cannot even walk one step without feeling like I am going to fall to the floor.

Or the card can mean a huge hematoma, one the size of a grapefruit across my upper back, black and blue.  Purple too.  The hematoma disappear over time after the dark bruise slowly runs down my back or sides.

The Jail Card can wake me up in the middle of the night shouting in tempo to my mechanical valve, refusing to let me fall asleep for hours, manifesting itself in bad PTSD episodes.

Probably the most appropriate action the Monopoly board game maker could do would be to rename the 'Go To Jail' card 'Go To The ER'.

'Go Directly To The ER, Do Not Pass GO, Do Not Collect $200' fits the bill perfectly, especially for those strange, indescribable pains shooting through my chest, head, arms,  or legs.  The card drawn may also mean an episode of bad vertigo or the seeming inability to breath.

However after five years of living with dissection and the Marfan diagnosis I've begun to realize that its actually good to expect the 'Go Directly To Jail' card each day.  Its not that the Jail Card is good.  It is however important not to be caught off guard so frequently.

That way I'm not so surprised.  Its a little easier to deal with the frequent physics and mental setbacks.

You see now I know my setbacks are results of nothing wrong I've done, they are just the random design fluke that defines who I am.

I am special and different than most.

Thats bad and good.  Bad because I have to suffer, most of the time with unexpected painful and debilitating physical injuries and limitations.  Good because I am aware of this potential for physical injuries and that I am part of a broader group of people who want to spread awareness of 'connective tissue issue' life.  With knowledge we can overcome.

Being aware I have an advantage over others for long term survival, despite.

I know each day I have to be on my best survival game.

Living a Marfan aware life has rewarded me some decent benefits; such as lower, life extending blood pressure, healthy eating nutritional benefits and the positive impacts of my spirituality and gentle physical exercise, and focused health care.

But those Go Directly To Jail cards still keep popping up.

But now they don't freak me out quite as bad.  Because I expect them.  And I know I probably will make it through this next challenge.

I am grateful to The Marfan Foundation and the support groups across Facebook.  The people behind these efforts deserve kudos.

In the meantime I am quite over being surprised by the Go Directly To Jail, I mean 'Go Directly To The ER' card.  Its in the deck and if I get it I get it and will deal with it.  If I don't know how to deal with the challenge there is someone in the Marfan community who really can help.

Looks like there may just be more 'Get Out Of Jail Free' cards in the stack now.

Happy Holidays!

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