Tuesday, April 25, 2017

Who Is The Best Cardiologist? You Know Who.

You know who is your own best cardiologist.
Who is the Best Cardiologist? (You Know Who)

Now hear me out as to why I believe so.

First of all there aren't many cardiologists in the world who have the number of hours under their belt dealing with dissection and aorta surgery as You Know Who.

This week my local cardiothoracic surgeon who will tend to me one day when (not if) my false lumen  blocks off blood flow to my vital organs, said "in a typical year we see about as many dissection patients as there are fingers on my hand."

As a side note I'm betting I might out live him.  We'll see.

When he first started seeing me as a patient I think he said something like, 'you aren't supposed to be alive'.

This week he asked if I'd type up a support group curriculum.

I've been through a lot of cardiologists.

They are all really, really smart.

They are smart about what they are familiar with.

So when a good friend posted the other day about recommendations for an expert cardiologist who understands connective tissue challenges on top of dissection, she inspired me to write about You Know Who.

'I'd travel anywhere in the U.S,' she suggested.

I know the feeling.

Lets see.  To begin with my cardiologists were those who I thought might shed some light on what just happened to me after I dissected.

Maybe they could tell me how I could heal.  But they did not.

Maybe they could tell me how long I'd live.  But they would not.

Perhaps they'd prescribe the right pills.  But after years of trial and error it was You Know Who who begun to figure out how I respond to various meds.

Perhaps they'd know when to operate again on my descending dissection.  You look pretty stable they'd say.  Let's discuss that next year (fine with me).

Maybe they can help me resolve my PVCs, PACs and occasional bigeminy.  Lets do a two week halter monitoring session that ends up telling us not a whole lot.

Maybe they could do this or that or perhaps I am expecting just too much from my cardiologists.

Its scary to think that maybe they really don't know what the hell to do with someone who is ripped up into the neck and down into kidneys and legs.

Except prescribe Amlodipine, Metoprolol, Losartan, Aspirin, Coumadin and statin pills.  Oh yeah, don't forget the annual dose of abdominal and thoracic CT radiation.

Sorry you have traumatic stress disorder.  Can't do much for that.  See your primary care doctor.

Actually all of my cardiologists have helped me along my dissection life journey but in a way I'd never expect.

No they weren't my go-to Guardian Angels.  They weren't the ones with the dissection life answers I'd been seeking.

But they were my teachers.

My cardiologists have taught me to learn everything I could about aorta health, aneurysms and dissection.

They taught me to look for answers.  Answers found not from them, but to look to You Know Who.

Yes, those who deal with dissections and aneurysms and stents and mechanical valves ten or twelve hours a day are a great resource.  Yes they are dispensable to our survival.  But they never had the answers I was seeking.

Ended up You Know Who had the answers instead.

There are lots of You Know Who's in my world, and most of them share a commonality with me.  They are survivors.

Instead of spending ten or twelve hours a day observing and repairing aortic aneurysms and dissections, the You Know Who's live twenty four seven with the same shit I live with.

You become an expert after years of working ten or twelve hours a day with dissection patients.

You are an expert's expert if you live with a dissection for just a short time.

Really now, I just couldn't find a cardiologist who could give me the answers I could 'buy'.

Lets see.  Except for You Know Who, who could really relate to:


  • hearing the emergency room CT tech loudly holler 'Oh My God!' while laying on the sliding platform that keeps whispering 'Breath', 'Hold Your Breath', 'Breath'.
  • listening to the surgeon on call tell you about slim chances
  • vomiting all over your sewn up chest as you wake from an aorta replacement excursion
  • knowing something was bad wrong a week later as fever rose and chest swelled bright red
  • having the thoracic nurse practitioner frown but shake her head and send home with antibiotics
  • going back a couple days later with puss building in my chest just to have the P.A. slice open the swollen chest with a scalpel but without pain killers just to quickly relieve pressure
  • enduring a second open heart to clean out a green fungus covering aorta and more
  • having the doctor say 'renal failure' and something about a 25% E.F. heart output.
  • hoping the infectious disease doctor knows what he is doing with long term IV antibiotics and antifungals 
  • watching PICC lines installed into arm with tube threaded up near heart, more than once
  • learning how to thread hypodermic into PICC line with one hand and then watching Vancomycin spray out of the IV bag coating your wife care-giver
  • wanting to strangle home health care nurse who plasters so much latex tape over wound vac on chest and then pulls every hair out of chest when changing
  • wondering why memory doesn't work like it used to with all the statins and other meds
  • listening to your neurologist talk about embolistic events and strokes
  • stumbling across the phrase 'pumphead' then reading how the machine saving lives causes strokes
  • losing driver's license when someone thinks driving is not smart for a survivor
  • navigating life as a pedestrian for years as I appeal drivers license medical revocation
  • being cuffed and thrown to the ground, threatened with tazing and guns as I walked to the grocery store simply because I apparently looked like a criminal
  • hearing cardiologist after cardiologist say 'sorry, can't support you driving' and the cardiologist's receptionist say 'we really didn't think you were going to make it'....
  • and that's just the tip of the iceberg.
So I don't really blame cardiologists for not having answers.

And today I don't look to my cardiologists or my cardiothoracic surgeons for answers.

Today I look to You Know Who for answers.  Yep, me.

I did finally find some doctors in Miami at Cleveland Clinic who helped me regain my drivers license.  And if I need to have a planned aorta surgery I'd have them do it.

But for the day to day life stuff, I just don't have the energy or time to regularly make the drive across the everglades to see them.

And so I've come to realize that the best cardiologists are those in my neighborhood who at first I'd shaken my head about.

Yes, they are the ones who said 'you aren't supposed to be alive'.

Now they listen to me.

Because I've learned from You Know Who.

I've learned as much as I could from the 'school of experience (or hard knocks as some might say) and from others who are You Know Who's too.

Like when I finally figured out that if my heart rate drops into the mid thirties and I start getting cold then cutting back on metoprolol from 200 mg per day to 100 mg per day helps bring pulse back up to the mid 50's.    And after discussing with my cardiologist in detail and explaining to him what I wanted to do by adjusting my beta-blocker dosage, he agrees.

Now I'm in control.  Fast pulse of heart flutters?  Take more beta-blockers.  Pulse dropping too slow? Cut back on beta-blockers.

Same principle with warfarin and statins for other cause and effects.

Of course never try adjusting meds without consulting with your appropriate doctor.

But once I explained what and why and they agreed, I now had a seriously comforting level of control.

Control in a life of not-knowing what is going to happen is important.  Friggin crucial.

After five years plus of first hand experience living dissection life and input from hundreds of other You Know Who's who are living the same life and learning similar dissection hacks (thank you all who live with dissections and share your experiences), I finally am finding answers.

And I don't have to travel far across the state or nation to find a cardiologist who really understands.

Because I am guessing there aren't but a handful of cardiologists who are dissection survivors themselves.

And honestly, it takes a dissection survivor to really know what the questions are, much less the real answers.

I love you cardiologists.  I love you care-givers.  You both are so very special.

But a torn vessel that holds life precious blood safely in a holy channel can only be understood by another dissection survivor.

So my cardiologist today has an office less than a mile from our townhouse.  And he is so fascinated now with connective tissue dissection news that I have overload him with and interested him in that I really feel comfortable with him now.  My aorta-centric passion has been contagious.

He listens today.  And asks questions.

If I suggest something he considers it from a perspective I know what I am talking about - from an educated patient perspective.

He then frames the situation with his medical training.

And I come away satisfied I probably have the answers I was looking for.  I came up with them and my doctor fine tuned them.

The best cardiologist is really not far away.

Actually in my own home.

Yep, the best cardiologist for me is You Know Who.

We always must be our own best advocate.

Educate yourself, tap into the marvelous support available from others who are dissection survivors around the world.

Inquire, learn and share.

Only you really know what needs to be done.

And its time to share.  You have the answers.  Others need them too.




Friday, April 14, 2017

Support Your Connective Tissues, Think Rationally Stress Less

It is hard denying adrenaline's power commensal with a Type 'A' personality.
Alpha hats rule!

Probably my drive over the years to be 'a leader of the pack' has been partially responsible for the open heart aorta surgeries I've required.

Today, my increased awareness of the hormone's destructive power is allowing me to replace the automatic flight or fight responses with a more rational response when I'm faced with challenges.

But unfortunately those daily challenges perceived by me to be a direct confrontation - such as another driver cutting me off on the road - still produce that all too familiar, mostly unproductive adrenaline surge.

When challenged, my blood pressure rises and stress increases as cortisol pulses through my veins.  In the car, fingers tighten around the steering wheel.  Words not normally suitable for public use whirl around my amygdala while my frontal cortex wants to slip into hibernation mode.

But with the passing of a few dangerous seconds the icy layer blanketing my cortex's rational  systems thaws and the red quickly drains from my face.

My pulse drops back to the usual forty to fifty beats per minute.

By now the offending car is far out in front of me.

I'm not going to speed after it to show them who is...., who is what? Maybe more quickly prone to push an accelerator pedal down?  Best at petal to the metal?  Come on.

Really, was it super significant that an aggressive driver cut me off?

Yes and No.  And the struggle between the ancient survival portion of my brain and the more modern frontal cortex continues.

But my connective tissue limitations require me to deal with fight or flight response in a way that supports my cardiovascular system rather than further damaging my aorta.

My Type A aspect urges for resolution by dominance while the Beta aspect (Type B) presses for a ' do what benefits you most longterm' ending.

As a human driven by testosterone I struggle with adrenaline and cortisol prompted stress daily.

As a connective tissue disorder (Marfan) challenged person who has experienced first hand the damage these influential hormones can cause, I am finally learning to recognize the first signs of situational generated stress and now learning to initiate rational mitigating responses.

Its not easy, honestly.  It is a work in progress though but I am improving.

Self recognition of my dominant Type A tendencies was a good start.

Today, living with a dissected descending aorta (ascending is now Dacron) requires stress control.  Stress causes sheer pressures to build and aortic inflammation to occur.  I need neither if I want to live.

Research shows that emotional stress can trigger an aortic dissection.

So stress control is extremely important to those of us challenged by Marfan, Loeys-Dietz, Ehlers-Danlos or any other connective tissue disorder or syndrome.

But just when I thought I was doing better lately, a red mustang cut in front of me yesterday boasting a big bumper sticker that read 'If you are reading this you are loosing!!!'.

I always drive no faster than the speed limit.  My driving capability is a privilege I absolutely need, and besides - whoever printed up that bumper sticker couldn't even spell.

Four years ago my license was medically revoked because of my dissection.   Today however it has been restored and I take the privilege of driving very seriously.

Three years of living without a driver's license taught me many things.  Near the top of the list is 'do not get a ticket and jeopardize the driving privilege'.  So I stick to the speed limit.

Many drivers consider the speed limit to be 'grandpa slow'.  So on a daily basis drivers, young and old whiz around me.  Most just whiz by.  Some blow their horns.  A few flip me off.

All the whizzing by does bother me but my rational frontal cortex has learned to be boss.  Amygdala is still active but now understands about consequences and the 'time-out' corner.  Amygdala has learned of downsides of 'the ticket'.

At first this shift from Type A to Type B responses in my life made me feel as though I didn't live up to what evolution had programmed my body to be.  Survival required brute dominance, right?  I mean look at the lions and gorillas and baboons fight for 'boss' rights. I had to be first in line at the traffic light.

Nature selects for Type A, Alpha, 'leader' personalities, correct?  Think about mating rights.

Not necessarily.

Though Type A personalities may 'earn' certain short term mating rights or dominance positions in some species, Type A lifestyles also carry many downsides too.

Alpha personalities normally possess higher stress levels, and as some research shows may harbor even lower intelligence levels.

What does that mean to a connective tissue challenged individual?

Simply put, Type A driven actions may move one to the front of the line but they may not be there long if the adrenaline and cortisol surges damage the cardiovascular system to the point of a dissection or aneurysm failure.

There is a very interesting report entitled "We Can All Relate To Stressed Out Baboons", where Stanford physiologist Robert Sapolsky is reported to suggest that the stress of competition associated with an Alpha personality actually leads to disease and depression.

Sapolsky goes on to theorize that those who can differentiate between real threats (requiring life saving flight or fight responses) and common competitive but non-survival situations may have much lower bodily stress levels.

The implications here are especially important for connective tissue challenged persons.

High levels of stress are more damaging to cardiovascular systems than smoking, according to Sapolsky.

Increased cardiovascular stress is the last thing anyone needs, especially if looking to minimize aortic dissection risks.

Today I'm thinking whoever printed the bumper sticker about 'loosing' may have actually been a Beta personality, one who figured out how to make money off of the Alpha's irrational drive to be the brute and possibility their inability to spell correctly.

I will always struggle with dominance stress.  My long legs propel me to the front of any group walk about.  My amygdala still whispers about being the fastest and best-est.

No longer though do I think the Alpha personality is superior to the rational, calmer, more socially integrated approach.

With the Alpha approach the game is controlled by others so paradoxically we always end up 'loosing'.

Beta responses allow us much more control, especially to the connective tissue challenged population who are genetically predisposition to potential aortic tearing.

And maybe ultimately a more extended shot at mating too.

Take that you Alpha powered red mustang!

You are the one who is really 'loosing'!







Saturday, April 8, 2017

View From A Shell Midden - La Florida

54" high by 108" wide, three panel ink and acrylic on aluminum representing Florida from north to sea south. Inquiries to kssonger@gmail.com
View From A Shell Midden - La Florida by Kevin Shea
View From A Shell Midden - La Florida by Kevin Shea, Panel One - Left
View From A Shell Midden - La Florida by Kevin Shea, Panel Two - Center

View From A Shell Midden - La Florida by Kevin Shea, Panel Three - Right



Tuesday, March 14, 2017

Intentional Unintentional Disability Discrimination #Marfan #Aorta #Dissection

Sometimes a gentle reminder is necessary.  The world is full of disadvantaged and 'minority' groups.  Those of us who are disabled often feel, as many other disadvantaged peoples do, that we are all too easily forgotten.

Parked in Not One But Two Handicap Spots! #Discrimination #Disabled

Days can go by filled with and full of positive reinforcement.  Usually most people are so willing to help one with a walker or cane through the door or provide a space at the head of the line.

But just when you take the deep breath of appreciation for those supportive weeks, out of the blue those bad days show up.

The deep breath of feeling a part of 'normal' society is suddenly deflated.  Poof.  Emptied.  Exhaled.  Gone.

Like the good days the bad days seem to come in waves.

This week was one of those times where the notion that I, as a person with physical challenges (chronic dissection and affiliated health issues), was not really a part of the 'real' world.

A pity party perhaps?  Maybe reoccurring PTSD, or subliminal depression? Maybe my self-esteem is too low?  And really, why do I take perceived discrimination so personal?  These are all thoughts that shoot through my mind after a day filled with 'intentional unintentional disability discrimination'.

The phrase 'intentional unintentional disability discrimination'  may sound confusing.  Simply put, it is when someone intentionally, but without overt malice, acts to ignore or avoid the reality of the disabled persons world.

And this week I was reminded that 'intentional unintentional disability discrimination' is all too alive and well in the world.

First and foremost, discrimination is discrimination - intentional or unintentional, blatant or subtle.

There is no excuse for any type of discrimination, at all, ever.  However most of us are willing to give others the benefit of the doubt.

"They really did not mean what they said or did" is the phrase I find myself thinking when confronted with 'intentional unintentional disability discrimination'.

However, persons must accept responsibility for their actions, intentional or unintentional.  When discrimination occurs it occurs, and ignorance is no excuse.

For me the solution lies in sharing peaceful awareness, letting the offending party know I feel I've been discriminated against as a person with limiting physical and mental challenges.

No good can come from aggressive confrontational or angry retorts.

But I've seen great things happen when the 'normal' world acknowledges and accommodates a disabled person's struggles.

So to the person who replied, "My sense is that this is no path for people to trifle with if inexperienced" to my post in a Florida Trail Hiking group inquiring if there were other disabled or physically challenged hikers, I know your comment was unintentional with respect to any discrimination, perceived or otherwise.

Immediately I equated the terms 'trifle' and 'inexperienced' to be discriminatory towards disabled persons though.  Just because one is disabled does not mean they are trifling with the sport of hiking.  Likewise just because someone may be a disabled hiker does not necessarily mean they are an inexperienced hiker either.

Making an instant leap from 'disabled' to 'trifle' or 'disabled' to 'inexperienced' is discriminatory, intentional or not.

I replied and suggested that sometimes persons with disabilities may actually be more aware of safety issues due to daily coping with physical challenges.  The commentor agreed and let the topic pass by saying "maybe disabilities are just matters of individuals limitations to imagine another person's capabilities".  Not too sure what they meant but the reply sounded helpful.

Anyway after thinking on the matter for a day I moved past the thought of 'trifle or inexperienced hiking' as a good description of my focused outdoor physical therapy treks.

But then the Frito Lay truck showed up.

In Florida it is illegal to park not only in handicap spots without a handicap designation but it is also illegal for anyone to park in access isles adjacent the handicap spots.
The disabled license tag on our van helps me tremendously.  The doctors say I should not lift heavy items.  A dissected aorta's tear can worsen under shear stress and carrying groceries to the car can create that stress.  With my Marfan connective tissue challenges debilitating bone and joint subluxation can occur with any step. So I am grateful I can make the trip from checkout to car as short as possible while carrying groceries.

Invariably, I end up doing more than I am supposed to.  It's my nature.  I want to help.  I don't want my wife to do all the lifting either.  I don't heed the advice of my doctor.  So the disabled parking spots keep me in check too.  They help me stay alive.

But when I pulled into the Fort Myers Beach Publix and found the Frito Lay truck parked in not only one disabled spot, but multiple disabled spots, I was puzzled.

Certainly parking in a handicap spot without the handicap designation is illegal under Florida law.  Florida Statutes, Title XXIII, Section 316.1956 states:

"316.1955 Enforcement of parking requirements for persons who have disabilities.
(1) It is unlawful for any person to stop, stand, or park a vehicle within, or to obstruct, any such specially designated and marked parking space provided in accordance with s. 553.5041, unless the vehicle displays a disabled parking permit issued under s. 316.1958 or s. 320.0848 or a license plate issued under s. 320.084, s. 320.0842, s. 320.0843, or s. 320.0845, and the vehicle is transporting the person to whom the displayed permit is issued."

The use of multiple handicap parking spaces for commercial transactions doubly surprised me because Publix is quite aware of and sensitive to the challenges of the disabled.  In fact I see more persons with physical disabilities employed at Publix than I do most anywhere else in Florida.
Handicap Parking is Meant to Facilitate Access for Disabled Persons, not Commercial Enterprises

Kudos to Publix for recognizing the challenges of disabled persons!

Publix also displays their commitment to handicap accessibility with a large sign next to their front door.
Publix is Keenly Aware of the Importance of Handicap Access and Kudos to Publix for Their Efforts in Disabled Employment!

So I was actually taken aback with the 'intentional unintentional disability discrimination' by both Frito Lay and Publix with respect to Florida law, handicap parking and disabled persons access.

Moreover, these photos were taken after the store had opened.  But the law still applies to handicap parking after hours.  There is no excuse.

Truly I know there is no ill will towards persons with disabilities from either Publix or Frito Lay.  This is just another case of 'intentional unintentional disability discrimination'.

Yet it stings. And it is wrong.

Upon seeing the Frito Lay truck parked in the handicap spots and access isles I felt that same notion of being a second class citizen, one many other 'minorities' feel daily too.

But I only ask that we acknowledge what is real.  Disability discrimination does exist, daily.

And the only way to overcome disability discrimination is through awareness.

So, thank you Publix for all you do to help persons with disabilities.  And thank you Frito Lay too.

This may be an appropriate time to remind all parties that ensuring American with Disabilities Act compliance is an ongoing effort, one we can not afford to forget.

Intentional Unintentional Disability Discrimination is wrong.  We all need to stop ignoring it and work together to make it go away.




Thursday, March 9, 2017

Growing Veggies On A Roof - Green Roofs For Urban Sustainability

Here is a pic of a marvelous little vegetable roof.
Rooftop Garden Growing Spring Mix Veggies - Urban Sustainability

The green roof is comprised of a waterproofing membrane of existing sloped (4:12) asphalt shingles, a layer of wind mesh, 20 mm of 96% inorganic soil media and lots of spring mix veggies!

The apparatus in the background is a vapor net installed to capture morning dew and hair water vapor.  The dew collector concept is quite simple but very effective and provides all the irrigation this little rooftop veggie garden needs.

Green roofs can be so simple is design yet so successful in contributing to urban sustainability!

Monday, March 6, 2017

Backyard Aquaponics & Hydroponic Veggie Garden

We take our grandson to The Imaginarium in Fort Myers Florida on a weekly basis.  He comes away enriched mentally and good and tired physically.

Modular Aquaponics at the Imaginarium - Urban Sustainability for Small Spaces
On display outside the main building is a modular aquaponics unit.

Modular Aquaponics, Growing fish, herbs, vegetables and flowers on a DIY scale
I really like this set up for producing food.

The fish (tilapia) are raised in a good size aerated and elevated swimming tank.
Modular aquaponics - the fish have plenty of clean water thanks to the plants!

The water from the fish tank is then pumped into the hydroponic vegetable growing tray.

Urban sustainability, basil, greens, marjoram, lemon grass and more grown hydroponically
Overflow water from the vegetable tray is drained into a surge tank (with many of the nutrients removed by the plants).

Modular aquaponics, the surge basin captures overflow from the hydroponic growing area
The cleaned (by the plants/herbs/veggies) overflow water is then pumped back into the fish tank and the cycle continues.

This unit is a great example of intense food production made from available materials in a limited space.
Urban Sustainability and intense food growing in a system perfect for patios!

Urban sustainability is a direct result of creativity!





Thursday, March 2, 2017

In The Beginning 'Genesis 3', Creation Art

I find inspiration for art from nature - most while in the mangrove estuaries or pop ash swamps. 
'Genesis 3' by Kevin Songer, The Beginning of Life

Perhaps because they are life growing out of water. Primal. Primal nature touches a chord in my heart. 

So over the past year I've been working on what I call "Genesis 3", the story of the beginning of life. 

I can imagine back to the earliest times, life centered around mangrove estuaries rich in biodiversity. Artists from cultures around the world and through out time have tried to represent their perspective of life's history and my research of the art and language describing the beginning of life has led me to see all these symbols and art about creation may all be different in form or sound but on point say the same thing. English has only been around since the 5th century. 

Before English the same stories were told in Greek and before greek in Hebrew. However these exact same stories were told in Egyptian long before Hebrew and then before Egyptian they were told in Sumerian. Before Sumerian was proto-Suharan and other African symbols and languages. 

All the same story but in different symbols. I believe by bringing all these symbols together we can as a world find unity. 

Looking beyond the language and symbol differences may be a challenge for us raised with the young language, stories and symbols of English - as well as those who speak in ancient art. 

To bridge that chasm 'Genesis 3' here brings together the host of creation symbols I uncovered during my research. 

And places these symbols down in the humid cauldron of red mangroves, pop ash, nautilus, butterflies, the moon and more. 

The story is really the same. 

We are all one.

Sunday, February 26, 2017

Urban Permaculture & Rooftop Gardens


We can defeat hunger in the Urban Core - on the roofs, on balconies, in small yards and across patios! Food is so easy to grow in the harshest of places, with little of no soil and even when water supply is limited.  All it takes is a basic understanding of the important factors impacting growth, such as wind, light and available water vapor.

Though permaculture has always addressed simple food growing principles, most of the time this focus has been about ground level growing.

Growing food on walls, roofs, buildings, and shacks up off the ground is important in the crowded urban core, high rises and slums.  Ground level food production is many times impractical in cities because of the lack of open land.  But there are plenty of walls and roofs to grow food on!

We believe educating the young about how to grow 'rooftop gardens is a way to capture their interest, create economic opportunity for them, create habitat, restore ecology and bring peace to the world.

Harvesting Green Roof Seeds, Educating the children
It is really exciting to see students become interested in urban agriculture.

Young children's minds are so fresh and thinking so quickly!  They see opportunities to improve and enhance our green roofs, living walls and rooftop systems.

Offering the next generation hope through empowerment is what we need to be doing every day.  Placing control of their food and water supply into our children's hands is so important.

Making educational videos about rooftop permaculture to teach the children.
It is a path to world peace and freedom from those who may want to try and control other's lives through food and water.

And growing food and recycling water does not have to be expensive or difficult.  This is why education is so important.

But we have a fight ahead of us.  Large corporations see opportunity through control of food, water, seeds and the knowledge of how to grow food and collect water.

The 'I don't have a green thumb and can not grow food' storyline is often repeated and many of the world have come to believe they can't grow sufficient supplies of food in the urban core.

We must show our children the path to breaking reliance from those who would control our lives and souls in exchange for food and water.

A small living wall or rooftop garden can provide enough seeds in a growing season to grow five more gardens the same size the following year.  Seeds are free.

Systems can be designed to cheaply capture and store water and to grow food on even shacks made from rusty tin.

The students harvested a giant luffa sponge from the roof this week.  Organic luffa sponges cost five dollars or more in the store.  The enterprising young person growing luffa gourds across the roof of their inner-city barrio could earn hundreds of dollars each season.

Plants not only provide food but they provide security, shelter and medicine.

I love Lydia Cabrera's quote I use over and over, paraphrased "there are more spirits in the plants than in the sky".

Aloe growing out of walls and on roofs becomes the local doctor's office in many instances.

Low cost Barrio-type house with living walls, food roofs & water recycling
Structure walls made from wire with grapes abundantly growing provides fruit, sugar, vine and community opportunities.

Rooftop beans and peas can feed the masses, not only providing daily food but offering up the following years crop of seeds.
Reusing water and controlling flooding

Native wildflowers planted across window openings and on the roofs and walls bring in the pollinators, crucial for food production.  One must have native wildflowers growing side by side with food plants.

Collectively we have found a way to travel to the moon, harvest the atom and talk across the globe.

But this awesome generation has forgotten how to feed themselves.

Now is the time to relearn.  Now is the time to show our children how to break leashes and create freedom.

Give me one month and the seeds I can carry in my pocket, a few wiling youth from the urban core and  the plants of medicine, food, fiber and economy will be growing across the landscape.  It can be done in a desert or a wetland, hurricane or earthquake prone areas.
We've answered the critics who say it can't be done, designed systems withstanding cyclones, created highly productive food systems in 30mm of sand, implemented bee hives on roofs, built water storage systems for practically no cost and are working now on a rooftop chicken system.



Control of your food is the path to freedom and peace.  Reliance on the corporations for food is the path to bondage.

Thursday, February 23, 2017

Irrigation Efficiency, Rainwater Reuse

Water is such an important resource.

Urban Sustainability.  Recycling and attenuating rainfall is one of the many proactive measures we can take in helping conserve water use.
All too often I take for granted the necessity of clean water for all the earth and inhabitants thereof.

Clean water forms the basis for all life continuance and survival.  Many times we've mentioned here how Green Roofs and Living Walls, along with other measures of Urban Green can clean and filter contaminants from our rainfall runoff.

Add caption
Though I always recommend allowing rainfall to resupply the ground water, rain barrels can slow (attenuate) the rainfall runoff from roofs.  This allows the homeowner to reuse the rainfall for irrigation where then the water makes its way back into the ground.

Here is a pic from our Jacksonville Urban Farm where we captured rooftop runoff for reuse in our Urban Gardens.

Every bit of water recycle and reuse helps preserve our world's water quality.

Wednesday, February 22, 2017

We are Overlooked Assets! #Marfan #EDS #LDS

Sometimes we as a nation can't see the trees for the forest.  When people make fun of those with disabilities, that jesting can foster cultural underestimations of talent values.
Connective Tissue Challenged Persons.  We are assets!

In the last week I've been declined for life insurance and jeered at while driving along with the other typical situations someone with a health challenge encounters daily.  Our van has a disability tag and I purposely drive the speed limit.  Other drivers often gun their engines to pass me by, blowing their horns loudly and usually flipping fingers my direction.  This week a man about my age rolled his windows down while flying by and twisted up his hands and face as if he were having a seizure then laughed as he sped on into the traffic ahead.

Today I take it all with a grain of salt assuming these people are probably having a really stressful day, pumped up on coffee and probably dealing with dangerously high blood pressure.  I am very happy with who I am, health challenges and all.  In fact I think my health challenges make me special.

Not everyone I encounter treats me this way.  Many are courteous, notice I am walking with a cane and treat me with kindness.  My doctors and nurses and their staff seem to really care and for this I am grateful. But our alpha nation, in its fast paced bootstrap mentality often treats those of us with pronounced health challenges as a discardable class.

Attitudes of disregard for the disabled can even be found in our governments.  Since my dissection in 2011 I've had my drivers license medically revoked and I've even been handcuffed, threatened and put on the ground by Flagler County Florida sheriff's department, hands on their guns and tasers as I walked to the grocery store one afternoon with my cane, a limping man that was an obvious threat to society.

Inevitably within the business community my resumes are politely returned, with a thank you but not interested response once my dissection issues surface.  Some say don't disclose the issue but I believe in transparency and it is hard to otherwise explain away the hospitalization time gap.

The 'forest' of mis-information and unfounded assumptions surrounding people with disabilities masks an amazing pool of talent though.

Over the past five years I've come to know others living with connective tissue challenges, aneurysms and dissections, scoliosis and pumphead, chairi and other conditions.

They are some of the most ingenious, brilliant, kind, enthusiastic and talented people I have ever known.

They are also surprisingly some of the healthiest persons I know, despite walking a fine line between life and death in many cases.

And they are certainly some of the most shrewdest and analytical persons on the planet.

Our communities, our nation and our world would be so much better off taping into this talent pool instead of pushing us to the side.

When living with a life threatening issue one realizes that time is truly borrowed and holds great value.  We can be better time managers than the most productive wall street executive for we know the value not only of each moment but of each breath.

And in spite of our challenges, many of us are more healthy than most.  Our diets are focused on  non-processed foods while we avoid inflammatory, artery clogging junk.  Our CT scans may reveal a dissection flap but they also reveal clean arterial pathways and healthy organs.

Yes, we may have physical or mental limitations but we've learned to adapt a better way and work around those issues.  Adaptation is a key component of long term evolution and survival.

Our awareness allows us to deal with and address our limitations - giving us an advantage over many of those who like the ostrich with its head in the sand, don't know what their arteries look like or haven't been to the doctor in a long time.

Besides, as someone recently reminded me, all of us are dying.  Those of us with diagnosed health challenges are just more keenly aware of this fact.  We are some say, better prepared than most when an incident occurs and in the meanwhile make the most of our allowed time.

Because of our focused efforts on our health I would suggest that we are a better class of individuals to issue life insurance policies for, rather than being rejected time after time for 'heart conditions' or other generic but unsubstantiated factors.  Yes we've disclosed these limitations on our applications.  They may sound 'un-insurable' at first take. Yet I still contend those of us with health challenges may be a better insurance wish than those in the population who appear healthy but may be walking time bombs themselves.

Over the years I've met some of the greatest artists, poets and well read intellectuals who each battle with serious or debilitating health issues.  There is an amazing pool of knowledge and creativity waiting to be tapped by a society willing to embrace differences.

And we would make the very best of employees.

All we need is a chance.

But the life insurance rejection letters, the returned job applications, the brush-offs, dismissals and cold shoulders, exhaust smoke and fingers still keep coming.

Fortunately, we are a resilient group.  We don't give up easily.

Many of us describe ourselves as 'survivors' or 'warriors', a fitting description for a group who have experienced trauma and difficulties most can not even imagine, and come through to the other side with strong fortitude and unspoken yet perfected resilience.

The world would be so much better off if this pool of talent was brought into the fold instead of being pushed to the side.

We truly are an overlooked worldwide asset.

And so we ask the world to take note of what we can offer.  We ask all the support organizations out there that provide us with wonderful resources on our afflictions to also advocate for our acceptance into mainstream society.

Those willing to take a risk on us will be rewarded far beyond their expectations.

Living a life challenged by connective tissue issues, cardiovascular and skeletal, vision and other maladies is the best training ground for human creativity and enlightenment.

All the world has to do is to ask for our help.

And if they don't then they'll be missing out.







Tuesday, February 21, 2017

Xeriscaping Importance and Water Conservation, Coastal Landscape Design

Xeriscaping is the practice of landscape design focused on the form of water conservation function using native or water conserving plants.


Florida Hurricane Landscape - Coastal Xeriscape plan.  One year post planting. No irrigation required.

Native plants are particularly useful in successful xeriscape design.

Irrigation is used primarily to assist during the initial period of the landscape plants establishing their roots and adapting to their new environment.

A successful mature xeriscape design should have either no added irrigation or at the most, very limited irrigation - such as micro-drip, for long term survival.

Regardless, xeriscaping design can be a challenge.

Coastal xeriscaping can present even greater challenges because of the added salt spray variable.

Here is an example of a successful coastal xeriscape project completed on Live Oak Island, Florida.

The first photo below is of the site after a tropical storm, debris littered across the water-front yard.
Hurricane damage, Site was cleaned and replanted with a xeriscape design

The second photo below is a snapshot of the new xeriscape landscape installed and mulched.
Xeriscaping, Initial planting installed only with temporary irrigation

Finally the very first photo above is of the landscape one year subsequent to the initial xeriscape plantings.

The plants include; Yucca filaamentosa (Adam's needle), Coral Honeysuckle (Lonicera sempervirens), Cabbage/Sabal palms and including Florida Friendly plants such as; agave, rosemary and more.

For more about coastal landscape and salt tolerant design, check out Kevin's Designing Coastal Green Roofs video here.

Saturday, February 18, 2017

Intense Small Scale Urban Permaculture, Urban Sustainability

Truly amazing how much food can be grown in a tiny space.
Urban Permaculture Genius. Maximize food and flower production in tiny city spaces.
Tried and proven permaculture methods can ensure fertilization, efficiency, pollination, irrigation and wind protection for maximized food production.

Though the above may sound industrial or way too mechanical, with plants the ends result is beauty.

Beauty and food.  Sense of place and habitat for pollinators.  Soil stabilization and enrichment. Urban heat island cooling remedy.  Carbon and nutrient sink.  And much better than turf grass lawns.

Kudos to Judy Songer on one of her urban permaculture garden designs!

Friday, February 17, 2017

DIY Green Roofs for Rabbit Hutches

Here are a couple of green roofs for our rabbit hutches.
DIY Green Roof & Urban Permaculture - Stacking Example of Green Roof over Rabbit Hutch over Worm Bin
The roofs are made with available materials, most recycled and repurposed items.

The rabbit hutches are an example of the 'stacking premise' found in permaculture methods.

The top layer is the green roof which provides food, shade, shelter, cooling (and warming through thermal adsorption), and much more for the rabbits below.

The rabbits eat the forage from the green roof and drop rabbit pellets through the rabbit cages into the worm bins below the rabbits.  The worms then digest the pellets and produce mulch for the green roof.

Urban Green with recycled materials can be completed with minimal cost and surprising effectiveness!

Thursday, February 16, 2017

Extensive Green Roofs, Lightweight With Only 50mm Soil Media

Green Roofs can be successfully grown in shallow layers of green roof soil media.
Florida Extensive Green Roof on sloped deck with 50mm soil media
Here is a succulent green roof I built in 2010 where the rafters were 2" x 6" 's with a wood decking (so very light weight loading was required).

The roof slope was 4:1.

A waterproofing layer was added first.

Then came a wind stabilization mesh followed by placement of soil media.

Finally the plants were installed that grew well without added fertilization or irrigation.

Total calculated live load of less than twenty pounds per square foot.

And still looks good!

Monday, February 13, 2017

Xeriscaping. Drip Irrigation DIY for Growing Locations Without Running Water

Not all locations have running water available for drip irrigation of food crops and other cash plants.
Urban Green and Permaculture sometimes requires irrigation where water supplies do not exist. DIY Drip irrigation can provide water efficient irrigation and nutrient systems and can be constructed from readily obtainable, even recycled materials.  Here a drip systems is made from a 5 gallon bucket, tubing and bamboo.

Here is an awesome DIY idea for an easy to construct yet very effective drip irrigation system.

If you are ever in the vicinity of Fort Myers be sure to stop by and visit ECHO Global Farm for permaculture support systems like this they refer to as 'appropriate technologies'.

With this portable and inexpensive but highly effective drip irrigation system a five gallon bucket is used as a water tower or water storage unit.  The five gallon bucket is covered with a filter cloth to keep leaves and debris out of the collected water (rainwater or added water) and hung from a bamboo stand..

Attached to the bottom of the bucket is a drip irrigation hose placed through the bucket wall in a drilled out hole, caulked around the edges.

The irrigation hose is woven through the planted crops needing irrigation, staked into the ground and fitted with drip nozzles.

Water conservation is an important part of sustainable agriculture.

Drip irrigation and water supply systems don't have to be expensive or complicated.  With a little creativity one can incorporate simple, appropriate technology growing systems into their permaculture project, green roof or urban farm.

Sunday, February 12, 2017

Some Good Days Some Bad Days but they are all Marfan Days

Some days are better than others.  This principle applies to all but may be especially relevant to those of us with chronic illnesses.
#IknowMarfan Become Involved! February is Marfan Awareness Month  www.marfan.org 

Others may see my smile, glossy nature photos on social media, and long walks as a sign that all is good.

But  I know the real truth.  Yes some days are better than others.  But every day is a Marfan day.

Most days I try and portray an upbeat attitude, usually answering a 'how are you?' question with 'everyday is a good day' answer.

And much of the time my positive answers and attitude convince even myself that connective tissue disorder life is not really that bad after all.  Especially on those days that are better than others.

Unfortunately, as I've said before, even the better days are still Marfan days.  This truth applies to all other connective tissue syndromes too; Loeys-Dietz (LDS), Ehlers Danlos (EDS) and so many others.

Even the best connective tissue disorder days are still connective tissue disorder days.

Amazingly a good Marfan day can instantly change and become a day some days are better than.  A wrong step, a bump against the door frame, a twist of the neck in the wrong direction, and even a hard sneeze can turn a 'better than other day' into the start of a painful, hurting week.
#IKnowMarfan Coumadin plays into Marfan days for many.  Here is my arm today - internal bleeding and hematoma 

Unless the torn tendon or ligament bleeds enough for a huge hematoma to form, or an arm or leg subluxes to where crutches are needed just to move, most others never even know how bad those with chronic connective tissue challenges may hurt.

Many of us look really fit, trim and healthy and we often hear the stinging compliment, "you look so good - so how can you be sick?!"

But even on those good days when we glow, smile and laugh the chronic monster of painful potential hovers just over our heads, ready to pounce at the first unexpected chance.

The concept of 'I may look somewhat ok' and 'this may be a better day than others but expect the unexpected' can really wear us down.

A Marfan day is a challenge, even if it may be one of the best of the better than other days.

Marfan can manifest in a number of ways including scoliosis, retinal detachment, muscle and joint disfunction and as in my case, mouth and teeth malformation to where I required braces, multiple hernias and worse - aortic dissection.

Today I live with a dissected descending aorta.  My ascending arch and aortic valve are mechanical and Dacron but my descending aorta is torn and blocked by about 70%.  Unfortunately I was unaware  of my connective tissue challenges until the night I dissected.  Had I known I could have potentially avoided my traumatic emergency surgery and subsequent surgery for graft infection.

Awareness is critically important.  And so we must share.  The Marfan Foundation provides educational and support resources concerning aortic dissection and other connective tissue challenges. To learn more about dissected aortas be sure to read the helpful information shared through the John Ritter Foundation website.

February is Marfan Awareness month.  So be sure to check out the #IknowMarfan hashtag across social media platforms and read more about Marfan Syndrome here.

Finally, many times a Marfan day will include more than just one connective tissue challenge.

For me the Post Traumatic Stress Disorder (PTSD) from two open heart aortic surgeries always looms just below the surface of daily activities.  Many days my upbeat approach to life masks the PTSD, other days something small or seemingly insignificant may trigger a rush of fear, dread and worry .  Some days are better than others but all Marfan days take their toll.

Most people in the world don't go through life aware their aorta is dilating every day, expanding and enlarging to the point where like a ballon, it may burst.  Living with the dread of imminent aorta replacement surgery is really stressful.  Even on the best of days the dread is hard to cope with.  But the aorta surgery worry is real and a part of most Marfan Days just as scoliosis, retinal detachment and other health challenges too manifest themselves most Marfan days.

Yes those of us challenged with Marfan Syndrome and other connective tissue disorders try mostly to 'get on with life' and 'keep on keeping on' or 'hanging in there'.  We try.

And many days that is just what we do and we are good at masking or hiding the hurt.

Then there are those less than better Marfan days where all the challenges just seem piled up way too high for us to deal with.  We want to let out a big sigh but our chest hurts way too much to let the sigh out.

No one understands so it seems.  Some days I feel like we are up the creek without a paddle, all alone, all by ourselves.

Social media support groups really do help but we long for an understanding touch, a personal hug from someone who does more than feel sorry from us.  We need someone who understands; really understands.

This is why becoming involved with The Marfan Foundation with local, but also national and worldwide efforts is so very important.

Each one of has so much to share and teach and receive from others.

We've been through those Marfan days.  We live them each and every day of our lives.

We've 'been there done that'.  Some of us have 'been there done that' for years now.

Whether it be retinal, muscular, cardiovascular or skeletal we all have some words of understanding to offer others.

Read through The Marfan Foundation's Get Involved website.  Become involved.  We have so much to share.  We need each other. Its all about awareness and sharing.

#IKnowMarfan





Saturday, February 11, 2017

Living Walls, Celtic Cross Fabricated Using DIY Recycled Material

Here is a green wall I easily and inexpensively constructed from recycled materials.

The wall is four feet wide by five feet tall and fashioned out of rigid recycled plastic milk jug crates for the rear and side structural support.

The growing media is mineral wool and the celtic cross cut from old copper gutter sheet.

The Florida Green Anoles absolutely love it, providing them with habitat to escape the larger exotic predators here, the Cuban anoles.

Bringing Urban Green back to the cities doesn't have to be complicated and require high tech materials engineering or mechanical systems.

Recycled material technology is a sustainable approach to take when implementing Urban Green.

Friday, February 10, 2017

Designing Coastal Green Roofs, Tropical Green Roofs, Florida Green Roofs

Greenrooms.com video "Designing Coastal Green Roofs"


A must see video for all green roof designers, especially those with complicated, coastal projects.

Thursday, February 9, 2017

Green roofs for Birdhouses too! Urban Greening for all.

Green roofs are found on a wide variety of structures and not just commercial, institutional or residential buildings.
Green Roof Birdhouse - Plants and seed added...



Cedar Roof Decking - Birdhouse Green Roof
Included are several DIY photos of how to put a green roof on a birdhouse.

Birdhouse Green Roof - Double Sided Roofing Tape


First photo is of the birdhouse roof decking.

Green Roof Birdhouse - Membrane Installation


Next photos is the double sided tape allied to the cedar decking.

Third is the waterproofing membrance serving also as a root barrier.

Green Roof Birdhouse - Grow Weave Mat


Fourth is the grow weave mat, then the ridge cap (made from recycled copper flashing) and trim work.

Green ROof Birdhouse - Copper Ridge Cap


Agaves and succulents are added, along with a mixture of drought resilient wildflower seed.



The concept here is exactly the same process we use on large, large green roofs.  This type of system is called an extensive green roof and on the sloped birdhouse roof the soil is stabilized with a natural stabilizer such as agar (you can use flour also if you cannot find agar)...