Wednesday, February 26, 2014

Kidney Health and Marfan Syndrome - Processed Food Challenge

O.K. Here are two more items I am booting out of my diet and medical regime.
Marfan Syndrome, kidney health and processed foods.
Oatmeal and Emergen-C are gone.  Yep, I was just as surprised as you are right now, but let take a moment and quickly explain why.

First of all I am not suggesting anyone eat a certain way.  My diet is special and so is the information here on this blog.  What works for me may not be right for you.

Because I went into renal failure during my open heart surgeries, I have to really treat my kidneys with special care.  Learning about a renal diet has been a challenge, what foods to eat and which ones to avoid.  It is all so very complicated but important, for without my kidneys functioning at their present level I could end up on dialysis.  Yep, dialysis is right around the corner for me possibly.

But I never received any real help from the myriad of doctors who treated me over the past three years when it came to learning what foods to eat and what grub to shun.

My cardiologist did comment on the Coca-Cola I was drinking one day during an office visit, telling me I must avoid dark sodas at all cost.  He went on to explain that the dark colas contain forms of phosphorous and that any drink with 'phos' in any form in the ingredients was bad for my kidneys.  For that matter, anything at all that contains a 'phos' for an ingredient should be abstained from, warded off and shirked.  I never did mention to him that it was his nurse who gave me the dark cola.  Today though I do avoid all sodas, dark or clear as the National Kidney Foundation recommends!

Sugar in any form hurts my kidneys.  Sugar and salt are two of my most hardest for substances to avoid, primarily because I like their taste.  It is easy for me to tell when I've had too much of either.  Excess salt raises my blood pressure almost instantly.  Sugar makes me very, very sleepy - almost comatose-like.  I don't need to read a medical textbook or have a doctor tell me when I've eaten too much sugar or salt; my body tells me loud and clear.

So the other day when I noticed I was getting sleepy after a dose of my favorite vitamin C powder - Emergen-C I read the packet's ingredients.  First on the list was fructose.  Good grief!  No more Emergen-C.  I thought I was drinking vitamin C, turns out I was imbibing mostly fructose. Sugar, sugar, sugar.  Ugh.

Now for the hard part.  Everyone has always told me oatmeal was good for me but lately, after eating Judy's homemade granola containing mostly old fashioned oats and very, very little processed sugar - she uses dried fruits to sweeten her granola - after a small handful of crunchy granola the same sleepiness would sweep over me.  Yawn.  Here comes an insulin spike.

As usual Mr. Google pointed me in the plentiful information path and my mouth fell as I read article after article about how oats cause insulin spikes and are really not so good for many people's blood sugar issues.

Finally, I am beginning to listen to my body.  Most of the time I know when a food or medicine is not good for me long before I read about it on Google.

Avoiding added processed sugar and those foods with glycemic indexes affecting my insulin levels and kidneys is really easy if I watch for the comatose feeling after ingesting the substance.  I knew even before reading about oatmeal that it may not be good for my kidneys because of the way the oats made me feel.

Yes I know oatmeal is full of fiber and has a lower glycemic index than other cereals.  Too bad.  Broccoli and many nuts are full of fiber and don't hit my bold sugar the way oatmeal does.

So goodbye to two more old friends.

If I could just stay away from processed foods……..

Friday, February 21, 2014

Eliminating Processed Foods from my Heart Healthy Marfan Syndrome Lifestyle Diet

Knowing what you need to do and doing it are two totally opposite actions.  I know I must avoid processed food if I want my body to continue to function.
Oh no! My favorite fish is loaded with ugh fructose corn sweeteners!

But as I am writing this post about the importance of eating not-toxic, un-processed, real food that even looks like real food, well….I just finished off three fig bar cookies (hey….Aldi foods sells them for $0.89 a package and they are loaded with high fructose corn sugar (HFCS)).  I know it is important that I give up HFCS.  I know this in my brain.  But my brain does not always carry majority rule over my tongue and my mouth and my belly.

Dylan, our teen grandson who is living with us while his mom recovers from a serious brain injury attends the local jiu jitsu dojo most week nights.  His instructor and I were talking about diet the other day and I really, really agreed with his statement, "everyone has to have their cheats".

My cheats today were the three fig bars.

Seriously, I am proud I stuck with food that looked like food today.  Except for the fig bars.

I ate nuts, oranges, greens from the garden, chopped okra, cooked beans, garlic, a couple pears and a can of sardines for breakfast.  The sardines were very, very rich in fish oil. So rich in fact that hours later when Dylan came home from school he asked me, "Papa K, did you eat sardines today?"  So despite scrubbing my teeth, gargling with peroxide and flossing, the fishy smell still lingered.

Sardines and fishy smelling fish are full of important omega three fatty acids.

A small handful of walnuts each day is always part of my omega three purposeful diet but the walnuts do not pack the omega three punch strong smelling sardines do.  Herring has long been another  favorite fish dish.  I especially love(d) Vita Herring in wine sauce and  in sour cream.  OMG.  Melodious waves of joy and ecstasy would roll across my tongue at the first fishy bite.

But no more.

You see, I have started reading labels and this has led me to some seriously sleepless nights lately.  I am finding out what I am really eating.  And most of the processed foods I am eating, no matter how healthy the labels look, are filled with chemicals and MSG and HFCS and other fabricated compounds right out of a show like the 'Twilight Zone'.

I knew this years ago but my tongue and stomach and mouth kept vetoing my brain's attempts to boycott these processed foods.

Unfortunately I am finding that if a food tastes really, really, really tasty then either MSG or HCFS are present.

I was very afraid of reading the labels on my Vita Herring because my brain was in no mood to piss off my tongue, mouth and stomach.  But I read the labels and sure enough they were full of high fructose corn syrup.

Sadly, I usually do not change habits until I have to.  And so it was with my Vita Herring.  A while back I started noticing my blood pressure spiking after I'd eaten my Vita, my systolic hitting the 150s.  150 systolic is way too high for someone like me with a dissected descending aorta.  In fact, systolic that high is deadly for me.

My brain knew the overload of HFCS was to blame but I tried eliminating every other food I'd been eating recently with no luck.  So I read the ingredients again, just to be sure.  HFCS was a major ingredient.

So I threw my Vita Herring away.  And I cut out all the HFCS and MSG out of my diet (except for those three fig bars today).

Within a week my blood pressure had returned to a normal range of 110/55-120/60.

My brain finally won the vote.

Yet this means that I've had to eliminate almost every processed bit of food from my diet.  No more ranch or blue cheese dressing.  Too much MSG.  No more fig bars.  After today.  No more ketchup.  No more delicious buffalo wing sauces.

I am going primal.

I knew I had to do this all along.  Friends urged me to do this for years.

The only reason my brain has won is because I really, really want to live.

Processed foods are so addicting.  We live in a world today where slow death by toxic food is an accepted norm.  My tongue, mouth and stomach are laughing at my brain for thinking this.

Wednesday, February 12, 2014

Writing My Own Obituary - What An Experience!

I wrote my obituary this week.  Yes,  it seems mostly what is written here lately has been focused around disease, dying or death.  But I am trying to get all things in order so I can turn to the fun stuff on my bucket list.
Kevin Songer's Obituary
Blah!  Who wants to write their obituary?  And the process was actually quite depressing, especially as I was trying to get started.  But the obituary writing process got easier as I wrote and thought and thought and wrote.

In fact, at first I initially felt an overwhelming and revolting sense of 'why even do this?' sweep over me like one of those big, unexpected Flagler Beach waves that crashes over you, sloshing salty water up into your nose, eyes and down into everything else attached to or part of your body.

'Yuck! Ugh!'  My right knee started it's shaking up and down while I sat trying to paint words on the blank screen with the Apple keyboard. 'Where do I start?'

Thank goodness for Google.  Type in 'SAMPLE OBITUARY' and right away a number of free self-help sites come up on the screen.  Cutting and pasting was easy and there it was - my roadmap outline to my own personal obituary.  All I had to do was fill in the blanks.

The other day I posted a note about visioning our lives as a mural we are painting each day with our actions and deeds. I was hoping my life's mural would be filled with love and joy.  As I was writing the obituary I could see that the words being penned were actually a reflection of my life's mural, but created with a pallet of words instead of paints.

My first thought was to fill it up with all the details of my accomplishments, all this this and thats that no longer meant a whole lot.  Turned out all the theses and thats was way to boring.  So I deleted all the accomplishments and focused on family and friends.  The obit was looking better with the 'family and friends' approach, but with a 'his' and 'hers' Brady Bunch clan there were a lot of names and I did not even get to the grandchildren.

As I wrote I began to feel a big sense of relief, like finally coming up out of that salty wave and taking a deep breath of fresh air and feeling the warm sun across my skin.

And I was so proud of myself!  I had to tell everyone about what I'd done, including my mother and father and even asking my teen daughter, Jincy to read over it!

Does that should way too morbid?  Maybe so, but somebody has to write an obituary for us.  In my efforts to try and have everything organized before I go, the obituary was just another item I can check off of my 'to do list' so I can get to my bucket list's fun stuff.

Just like a will and a funeral plan, everyone should go ahead and take care of their own obituary.  It actually may help keep your children, or spouse, or whoever you leave behind from having to tell all those little white lies when they try to think of what to say about us.  Ha!

Minor edits have already crept in and I am sure that over time the text content will evolve and does my life.  And I certainly hope not to use it anytime soon!

But the words have kind of fashioned my time here on this planet with these people into a manageable mouthful of verbal art that hopefully reflects my life's mural, something tangible I can carry around with me like my name.  Something that can help guide the rest of my life maybe and give me cause to stop and consider how people will really remember me, something right out of my Facebook page - lol!

So here is my draft (Yes!  DRAFT - not to be used anytime soon I hope) obit.

Hope it inspires you to write one too. -


Kevin Shea Songer, (Age)
Kevin Shea Songer, (Age), died (Month and Year, 20xx), in his home in Palm Coast, Florida.
He was cremated. A service was held Friday at Princess Place Preserve in Flagler County, Florida.
Kevin was born March 24, 1957, in Atlanta, GA., to Louis and Paula (Morrow) Songer.  He grew up in Hialeah, Florida, attending Meadowlane Elementary and Palm Springs Junior High in Hialeah and his family was active in the Hialeah Church of Christ.
He graduated from Leon High School, in Tallahassee in 1975. He married Judy Marie Songer on April 5, 1995, in Crawfordville, Florida.
He held an undergraduate biology degree after attending Florida State University and David Lipscomb College and also a Juris Doctor of law degree from Florida Coastal School of Law.
Kevin survived an aortic dissection in November 2011 and spent the rest of his life medically managing his descending dissection and related Marfan Syndrome challenges.
He enjoyed nature photography, Florida’s state parks, hiking and cycling with his wife and spending time with his children and grandchildren.
He actively blogged about green roofs and life with Marfan Syndrome.  His blogs are located at and
He leaves behind his wife, Judy Songer of Palm Coast; brother, Scott; sister Leisa of Tallahassee. brother Brian of Indiana; children and step-children include; Jincy Songer and Ruairi Songer, Dana and Jared Neal, Sesha Castagna, Kyndra Griffin, Melissa Cummings, Leslie Ferguson, Laura Griffin, Adam Griffin and numerous grandchildren, and many friends across the world who share a passion for green roofs and also those challenged with connective tissue disorders like Marfan Syndrome.
Kevin was preceded in death by, his sister Janna, a granddaughter, Heidi Ferguson; (and if any others).
Lohman Funeral Home of Palm Coast, Florida was in charge of arrangements.  Remembrances can be made to The Marfan Foundation, 

Saturday, February 8, 2014

"If You Want To Live You Must Walk' and Honk Honk to Cardiovascular Health, Daily Marfan Life

Yesterday a beautiful 57 Chevy pulled up into Autozone store a mile away from our house as I walked into the parking lot (my licensed is still confiscated) to meet my father-in-law.
My daughter's Honda is covered to protect from the rain and elements.
Wow!  My head turned.  What a sleek looking, sweet ride she was, and I loved the light blue paint, shiny chrome, lack of rust and smooth purring engine.

"Man!  Her owner has babied her.  That car is in puurrrrfffeccct condition," I whispered, not worrying if anyone heard me talking to myself because everyone else in the parking lot was saying the same thing, talking to themselves too.

My father-in-law's Lincoln was not in the parking lot yet so I walked over to the owner and complimented him on his Chevy and said something about his car and me having the same birth year.

"Take a look inside," he invited and I stepped off the curb carefully, with my crutch.  The Chevy even smelled NEWish, though I know for  five bucks inside the store one could purchase a bottle of 'NEW' spray; but still!!!  I was jealous.

"Was my grandfather's car," he said.

"You've really taken care of her, she is beautiful," I replied, afraid to leave a smudgy fingerprint anywhere on the vehicle, especially since I'd been wiping my runny nose on my wrist as I hobbled  along the way to the store in the damp, drizzly cold.

"Yeah, she's fun to drive but a lot of work."  He emphasized the term 'a-lot' with extra punctuation.  "I've had to rebuild the engine twice and she's not used to the ethanol in today's gasoline, but she sure is fun to drive.  Keeps me busy too, keeping up with all that needs to be regularly done to keep her in shape."

I thanked the gentleman, who appeared to be about ten years older than me and walked into the auto parts store to wait for PeePaw.

After helping my father-in-law pick out a couple of car covers for my brother-in-law's cars (my brother-in-law is in the Army Reserve), I made my way over to the adjacent CVS store for a small pack of salted pumpkin seeds.

Today I am paying for eating the salted pumpkin seeds but yesterday they sure were tasty.  Salt and I do not get along.  My heart and blood pressure hate salt.  My tongue loves salt.  It is a constant battle with no clear winners.

A mile with a forearm crutch, bottle of water and small pumpkin seeds is tough if you are trying not to look like Hansel in the fairy tale.  Someone could have clearly tracked me with a bright white salty pumpkin seed laying here and there on the side walk every five feet or so, but the herd of squirrels running behind me quickly took care of the trail's evidence.  

Anyway, I'd torn the pumpkin seed bag the wrong way when opening the plastic sack.  Trying to keep the slick seeds in the sack and not emptying into my lint lined pants pocket, trying to hold the ice cold sloshing water and trying not trip over my forearm crutch was a challenge.  I told myself, "this is true disability, Kevin," and immediately felt better after hearing the words of pity.

But in-between the seeds and sips of water I had about forty five or fifty minutes to think about the Chevy.

And it hit me!  Maintenance and keeping up with any car is so important to making the vehicle last.  Back when I was driving I'd jump into the car each morning and expect it to race down the street, clean itself, change it's own oil and fill it's own gas.

But if I'd taken an hour or so each day (maybe two) and pampered my first car, a 1967 Ford Mustang GT, three speed on the floor with bucket leather seats and a 289 V-8, well, my very-hot car might still be around, though without my license it wouldn't be fun as often.

Sheeeez.  An hour or two each day?  Who has time for that kind of maintenance and the Chevy owner did say that even with all the daily maintenance he still had to replace the engine twice.  Yet he did have a beauty of a car.

So another dome light clicked on above my head as I continued along the sidewalk. We tend to treat our bodies (I am speaking about myself now - I know you out there are better disciplined); we tend to treat our bodies like many of us have treated our cars.  We expect performance without the truly needed maintenance.

We wake up first thing in the morning with a rush of adrenaline, without a prayer or any meditation.  We jump and run without warming up or stretching or even bathing and brushing our teeth.  We deny ourselves a daily buff out or vacuum and fill our tanks with gummy regular instead of premium, organic high-test or even clean water.  Our tires are almost flat and our carburetor is clogged.

And so our bodies, like our old autos develop problems and we no longer look like the pretty Chevy with the curvy trunk and shiny headlights.

Instead we find ourselves, like our cars;

  • leaking fluids everywhere.  Drop by drop first, then dribbling everywhere we park;
  • our electrical system starts to crackle and sometimes completely short circuits;
  • the dang spare tire gets soft, smushy and flabby from just sitting in the trunk;
  • our once snazzy upholstery becomes faded and wrinkled;
  • and our used to be silent muffler, toots, booms and blasts when we least want or expect it to;
  • as our young paint job fades and spots begin to appear we plaster ourselves with Armor All, and the silicone really helping for a short time;
  • our cloth covered areas develop a really odd smell, something like a cross between stale sweet potato fries and fermented green tea;
  • the dang struts squeak, sound boinky and have forgotten that old smooth glide;
  • fuel injectors act like they are clogged with carbon deposits from years of cheap gas;
  • old nuts either rust up or break and fall off;
  • and we can't keep the dang rear mirror up, the thing keeps falling down in our laps when the car hits a bump;
  • that once polished gear shift knob has lost it's original luster and becomes worn from being pulled and pushed back and forth every day;
  • and finally, our dome light becomes dimmer and dimmer with each passing day.
I mean we can end up in a junkyard at the end of the day or we can end up in a museum or well lit garage, just like our cars do.  It all depends on how well we take care of the vehicles and our bodies.

As I turned the corner into our neighborhood a small white pickup truck was parked in the first driveway to my right, covered in leaves, obviously having not been driven in a while.  But it WAS covered in beautiful Florida red maple leaves and not wrapped with a synthetic, plastic-like car cover.  And there was a lovely cardinal perched on its bed, chirping away in the cool mist.

I whipped the drizzle from my forehead, pulled the hoodie a little tighter and frowned, thinking to myself. "Do I really want to be stuck in someone's garage forever, covered up and only seeing the sunrise once in a while?"

I was almost back home now.  My doctor tells me that if I want to live I must walk.  I must walk each day despite the pain, despite having to sit and rest often.

There are lots of closed garage doors in our neighborhood.

Maybe those cars rusting out in the junkyard, piled up next to each other, watching the sun rise and set and the moon glow each day and night are really having more fun.  

I don't know.  IDKN as my kids have taught me in text talk.


Wednesday, February 5, 2014

Storage and Simplification - Marfan Medicine Drawer

Ugh.  More stuff.
Marfan Syndrome and Simplification

If you have been following my 'Project 100' you know I have been trying to simplify.  I want to pare down the number of things I own.  Over the past how ever many years or so the accumulation bug has happily lived and flourished in my body, embedded under my skull.  I suppose it got into my brain through the ear canal, listening to all those TV and radio commercials telling me 'I just had to have'!

Uh-oh.  Just like with the Marfan Syndrome challenge, the hoarding of stuff comes back with a vengeance when it appears progress is being made.

So I thought I was doing good.  The garage had been cleaned.  That was about another 100,000 things told to go their own way; nuts, bolts, nails and other junkets that predictabily ended up in a couple of my neighbor's sheds.

I used to love to go through trash piles heaped up beside the road down our neighborhood street.  The thrill of discovering a shower head that could be possibly repaired or an old turn table with potential was always more than I could bear.  One day when the kids were small we were all walking around the neighborhood and I spied a fabulously gigantic pile of 'stuff' someone who was simplifying (they had it figured out long before I did) had tossed out by the road for the garbage people to pick up.  After grabbing a couple of plastic five gallon pails I noticed one of the kids fleeing across the street and jumping into the roadside ditch.  Apparently some of her friends were playing outside a few yards down from us.  I do not understand tweens' fear of their friends laughing at them for dragging home perfectly good reusables.

And I still wonder if the trash people fill the area behind the truck cab's seats with goodies salvaged from their daily pick ups.  Bet their houses are decked out like none others.

Back to the topic at hand - the bathroom medicine drawers.

My stay on topic attention capability has suffered greatly since the open heart surgeries.  I know I've already written about this many times.  But people forget!  Just the other day I was over at someone's house who knows me very well and she was telling me something.  If there are more than ten or twelve words in a sentence I get lost and stop following whatever the person is rambling on about.  I mean I can not keep up and by the time they are saying word number twenty my brain is just processing word number four.

It really gets bad when the first twenty or twenty five word sentence quickly turns into two or three or more twenty five word sentences.  Grrrrrr!  I want to slap them or tell them to put s-p-a-c-e-s  b-e-t-w-e-e-n their words.  I am dealing with a serious cognitive pathway traffic jam and people just don't get it!  Honk! Honk! Honkkkkkkkkkk!

Mostly my response so far to date has just been a smile.  But this time I interrupted her and it felt good!  It felt really good to just blurt out, 'I can't understand what you are saying!'

She was immediately taken aback and frowned and shook her head from side to side in disbelief.

'I don't get it!  I did not understand anything of what you were saying,' I repeated myself just to hear the words once more.

She sighed, speechless.

I smiled.  I felt like I'd won the lottery or a national election or the Nobel Peace Prize even.

Alas, off track again.  Back to the bathroom medicine drawers.  When I emptied two small drawers in the bathroom today my estimated count of 'stuff' I owned easily doubled.  It was hard enough trying to understand the jumble of words the other day.  But the bathroom drawer jumble of pill holders, tubes, plastic this and thats, and all the other 'stuff' shocked me.  My Project 100 had just encountered another setback.  Just like those mornings when I know I've got Marfan whipped and I roll off my floor sleeping mat to stand up and my ankle or knee or back decides to side with the Marfan for some obnoxious reason, the clutter of bathroom drawer stuff totally and cruelly short circuited my brain.

What was I going to do with all that stuff?  How did I fit that much stuff in those small drawers?

Ended up I threw most of it away and put everything else in a cotton bag that is now hanging on my side of the closet.

Now we have two cleaned out drawers, a home for more 'stuff'.

What did I learn from this?  Not much that I can remember now.

Perhaps dementia's curse is compounded by being a slave to stuff that will end up in the landfill.

But every time I get rid of something else I feel a little bit more free.

And I really like freedom from complexity and from long sentences without spaces between the words.

This morning, just outside the window I sleep under, a bird was singing a most beautiful, sweet and melodious song.  The sun was coming up and warm golden colors had started to blanket the saw palmetto fronds out back.  A cool, refreshing breeze softly wrapped around my face as I sat up and leaned against the windowsill.  The first deep breath, really deep breath and slow exhale never felt so good.

I couldn't fit any of those things in the bathroom drawers.  Nor in my cotton bag.