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!

Diet Implications of a Life on Metoprolol, Losartan and other Medications

I feel so much better when I am not carrying around a whole lot of excess body weight and when I am also involved in daily physical therapy.  My heart beats happier too when I do these things.

View from my bedroom window

Our bedroom window opens up to a magnificent view of the Florida flatwoods, complete with tall pines supported by an understory of thick saw palmetto, and this is where on the floor I sit when stretching.

Morning routine consists of about two hours of me attempting various aerobic stretching exercises and lifting two pound weights on a limited basis (wow!) all the while monitoring my blood pressure at varying intervals.  Last thing I want to do is a Valsalva maneuver or attempt anaerobic type lifting.  Keeping blood pressure down below the bursting pressure of my aorta is important here, and I really mean 'important'!

Rest comes next followed by mid-day pool therapy where I walk in the water, tread water and do the breast stroke for a moderate work out.  Lunch follows as does more rest.

Walking or bike riding is my afternoon physical therapy.

By seven or eight in the evening I am exhausted.  Problem is I usually can't sleep, for a number of reasons including my loud clicking heart valve and the complex combination of medications I take.

You'd think that with all the physical therapy I am involved in I'd keep my weight down to a lower BMI than the  twenty-two to twenty-three I hover around.  Yes, I know this is in the normal range but ideally I'd like to keep my BMI around twenty.  My heart and joints feel much better around the twenty number.

And you'd think with my diet keeping excess weight off would not be difficult.  I know that in my pre-dissection life, if I'd eaten then like I eat now, the weight would fly off.

But my severly dissected aorta, stretching from the present Dacron graft that has replaced the ascending aortic arch, down through my thoracic and abdominal areas into my kidneys and legs, complicates the situation.

So the doctors want my heart to beat as slow as possible.  And the doctors want my blood pressure to stay quite low too.  I call this one-two punch, 'Zombie therapy'.

And the knock out facet of this one-two punch are the medications that keep my heart beating sooooo slow and at a reduced pressure.  In and of themselves at normal concentrations they are widely used and not too terrible I hear.  However all thrown together and taken multiple times a day they have turned my once hot metabolism into a cold, practically frozen in time metabolic rate.

I told my daughter yesterday that I can actually get all the calories I need during a day just from breathing.  I was kidding of course, but even on the 1,000 calorie per day meal combinations I been treating myself too my weight maintains itself on an even keel.

Heaven forbid if I eat a dessert or treat.  I have done this occasionally and, OMG the next day I've gained three or four pounds that stay on.

If not careful I could gain fifty pounds over the span of two months.  I bet I could easily gain one hundred pounds in a year on a fifteen hundred calorie per day diet.

Food is one of the things I enjoy most in life, especially good food!  But now I have to eat lots of good-for-you-food instead of good food if I want to keep my weight steady, meaning lots of raw fruits and vegetables, staying away from sugar and moderate caloric intake and other boring 'control my eating' activities.

All this is frustrating, extremely irritating.  There are some days I am ravenous!  I am hungry, hungry and hungrier ever! Pavlov's Dog won't shut up!

I suppose that is why all of those zombies on the television programs now-a-days are constantly walking around looking for something to eat.

I am sure I am not alone.  So for all of you out there on massive amounts of Metoprolol and Losartan and other -olol's or -artans, I know what you are going through.

Check out the diet tab on the blog's homepage if you are interested in my rather dull diet.  And enjoy a cuke dipped in vinegar too!