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!

Aortic Dissection, Connective Tissue Issues; Coping With All the Information

I've usually way too many apps open on my phone and am surprised to see how much faster my iPhone runs when I close them all except for the one presently in use.

Corkscrew Swamp hiking for Aortic Health

"Be here now."

More relevant to me than the app analogy is an image of paper file folders scattered across a desktop, flung open, stacks of typed or handwritten pages lying everywhere.  A jumbled up mess of a lot of information is not only confusing but disheartening too.

"Peace be still."

Life with a dissected aorta and Marfan Syndrome (the connective tissue disorder in part responsible for my torn aorta) and with chronic kidney disease from multiple open heart surgeries is a challenge not only on the physical limitation front but also because of the massive amounts of health information I must process daily.

Will this particular food raise your INR or drop the INR and cause a clot?

What about the bleeding an activity might cause if I get bumped or scraped?

What will I be doing when its time to take my beta-blocker that makes me want to fall asleep?

How long do dissectees usually survive?

Daily the questions fill the desktop of my mind like pages from the scattered, jumbled files or too many open apps.

My solution lately is to imagine taking a break and neatly filing all the paperwork and files back into the file cabinet in my back pocket.  Except for the one file I am using here and now.

Sometimes I switch to the app analogy and close all the open apps in my mind except for the one I need now.

So if I am driving then all the thoughts of medications, things I need to do, people I need to stay in touch with, my yoga and swimming I have not done for the day, my blog which I have not touched in a year - well all those thoughts disappear and my focus is only on the road and those cars around me.

Which is the way it should be.

Peace be still.  My blood pressure falls back to where it should be.

The people I am with take notice that I am more engaged presently.

And when I practice this mode of information management my chronic depression from living with  these challenging physical conditions begins to subside.

Be here now.

Close the files.  Close the apps.

Try telling yourself "Close the files. Close the apps" next time you are overwhelmed with a barrage of  information, thoughts and ideas running rampant.

Pease be still.

And then I can more easily deal with my "new reality" of living with a torn aorta.

When, in fact the "new reality" I've been reminding myself daily of is not really a "new reality".

Sure my aorta was not torn before my dissection but it was going to happen.  I just didn't know it.

Now, today I know I live with a pre-disposition (and a torn aorta) to connective tissue tears and all the cardiovascular and muscular problems associated with Marfan.

Understanding my dissection life is not a new, strange and unknown life for me is important.

I've always lived with the potential for cardiovascular problems, I just did not know it.  But today I understand.

The difference today is I have all the folders and information now about these chronic health problems whereas before I did not.  I am still the same person physically today yet I now know.

And all this new knowledge is what causes much of my anxiety.

I am overwhelmed and depressed until I remember....

Close the files.  Close the apps.

Peace be still.

Be here now.

And its all ok.

My back pocket file cabinet is especially important when I am writing this blog, or laying down to sleep or working on my art or doing yoga or preparing food or doing chores, you see I close out all the other apps, especially those files of mortality or other unpleasantries and focus on the task at hand.  Life is much easier when the winds of a thousand pages are not constantly buffeting my curly thin hair.

So when the dermatologist's office called yesterday morning and told me the mole they removed from my leg biopsied positive for melanoma, all the files flew out of the cabinet back onto the desktop of my life once more.

For a while I did the whole 'search the internet for answers on how to put the files back to the way they were before the phone call thing'.

Then I realized the melanoma had been there before yesterday, probably long before yesterday and the reality was similar to when I learned about my Marfan Dx.  I now had information I hadn't had before.

So I quickly filed the scattered papers and folders and put them back into the filing cabinet and closed out all those extra apps.

Instead of fretting about the 'M' word Dx we went to Corkscrew Swamp and watched the sun go down and the almost full moon rise.

And I enjoyed my evening.

The dermatologist office has a great MOH surgeon and they are scheduling a surgery to remove the affected skin area.  I'll open the 'mole' file as I have to just like I do with the 'dissection' file.

But I will also keep them closed when in not in use.

Scattered pages, even if they are full of important information, are useless when in an out of focused jumble.

So close out your excess files and put them away.

Be here now.

Life is really a privilege and I so enjoy focusing on each breath, each moment and each day.

Peace, be still.

Applying for Disability; Notes To Myself

Here are my personal notes on the topic of applying for disability.

Kevin's Dissected Aorta - visible intimal flap

This is not legal advice. The information here is only my recollections of what helped me apply for and receive Social Security Disability Insurance (SSDI) on the first attempt..

First of all let me say there are no 'tricks' or 'loopholes' to obtaining disability benefits.  Social Security has specific written protocol for determining who qualifies.  You either qualify or you do not.

Second, you must truly have a disability that will end in death or keep you out of the work force.

As a builder of custom green roofs I could no longer safely work atop buildings, climbing ladders and lifting super sacks of soil media in 100F degree heat.

As a lawyer by education I realized the first time my mind went totally blank for an extended period when writing a report that I could not honestly act as the best advocate for my clients.

Add to those issues dissected ascending and descending aorta, serious kidney disease as a result of dissected renal arteries, cognitive issues from two open heart surgeries and being on the heart-lung machine for long hours and other issues, pain, fatigue and the many other maladies those of us who have survived aortic dissection experience.

As my doctor said, "your number one priority is to stay alive right now, focus on physical therapy, your diet and new lifestyle reality."

If I had to apply all over again here is the approach I'd take:

Retain A Well Recommended Disability Attorney

• Can save you lots of time and headaches
• or, cause a lot of aggravation if your retain the wrong advocate without strong disability experience

I was intent on filing my own application because I thought I could tell my story better than anyone else and be my best advocate.

Preliminary Research 

• Read the disability guidelines for Social Security Disability Insurance here, most commonly referred to as the SSA's Blue Book.
• Watch the seven part SSA Video series on the Disability Process linked here.
• Read the SSA's Evidentiary Requirements linked here.
• Read through the SSA's cardiovascular protocol linked here.

1. Guide your doctors through their diagnoses of your conditions.

• Learn to speak out about what hurts and how you feel.
• Other than blood work or imaging/testing the only way doctors can document what you are capable of is through their assessment and by what you tell them.
• Before each visit write out a detailed list of what hurts and how you feel.  Make sure to specifically address each area of bodily concern.  Kidney pain is especially of importance to those with dissected renal arteries or descending aorta dissection. Neurological issues matter too!
• Make sure your list is included in their written medical record.  Many times medical records are cut and paste by the doctor or nurse.  Insist your records are customized with your input!
• Ask that a copy of each visit medical record  be mailed to you.  Correct any inconsistencies or omissions.

2.  Collect All of Your Medical Records As Far Back As You Can Get Them!

• Consider all your records to be relevant, even those five or ten years old.
• Older records can help establish and document chronic conditions.
• Arrange your records in three ring binders with tabs chronologically. Neatness and organization is paramount.
• Scan and archive all the documents on DVD or CD, making multiple copies of the finished record disk.

3.  Correlate SSA's Blue Book cardiovascular section's relevancy to your medical records.

• For Dissection cases SSA probably will start with Section 4.10 "Aneurysm of aorta or major branches" - link here.
• Sec. 4.10 states "due to any cause (e.g. atherosclerosis, cystic medial necrosis, Marfan Syndrome, trauma) demonstrated by appropriate medically acceptable imaging with dissection not controlled by prescribed treatment (See H4.006)" qualifies for disability.
• H4.006 states "When does an aneurysm have “dissection not controlled by prescribed treatment,” as required under 4.10? An aneurysm (or bulge in the aorta or one of its major branches) is dissecting when the inner lining of the artery begins to separate from the arterial wall. We consider the dissection not controlled when you have persistence of chest pain due to progression of the dissection, an increase in the size of the aneurysm, or compression of one or more branches of the aorta supplying the heart, kidneys, brain, or other organs. An aneurysm with dissection can cause heart failure, renal (kidney) failure, or neurological complications. If you have an aneurysm that does not meet the requirements of 4.10 and you have one or more of these associated conditions, we will evaluate the condition(s) using the appropriate listing."
• Your application Must meet the standard of Sec 4.10 and H4.006 above.
• Many people assume a stable descending dissection is a 'shoo-in' for disability approval yet this condition does not meet the published standard.
• It is critical you document that your dissection is causing restricted blood flow to one or more of the organs detailed above.  
• In most dissectees this is true yet doctors and/or applicants fail to communicate this to SSA.  Sometimes the information may be in the application but buried so deep the SSA medical reviewer misses it.
• Dont Stop with Sec 4.10 or H4.006!  Read through the entire Blue Book and list any condition qualifying for disability in addition to your dissection!
• There are many 'conditions' listed in the Blue Book.  Don't short yourself by failing to read through these and leaving these qualifying conditions out even though they are applicable to your medical condition.
• Many applicants expect SSA medical reviewers to complete a detailed analysis of your condition to the qualifying conditions in the Blue Book.  Some reviewers are quite thorough.  Depending on work load some may not be quite as thorough or unintentionally fail to see a very important correlation.  Its up to you to be your best advocate.

4. Apply early!

• Submit as complete and thorough an application as you can but apply quickly once it has been medically determined you are disabled.
• The date of your application is usually considered the award date for retroactivity once appeals have been finished and you receive your award letter.  A years worth of application submittal delay can add up to ten or twenty thousand dollars.
• You are better off with a denial on a complete application (of course proceeding with appeals) than you are waiting for months to finish your application.  Apply early.

5. Try not to stress.  The process takes time.

• The SSA application process can be stressful.  Consider it a long term, step by step effort that will be worth the end result.
• Realize Medicare will be delayed in most cases for two years after approval of disability or until you reach SSA retirement age.
• If you feel it is moving too slow, write and call your state and federal elected representatives.  Their job is to represent you.  I have seen excellent results with concerted communications to a congressperson or senator (both state and federal).

6. Finally.....

• Realize that this effort is about communication.  Many applications are denied due to incomplete applications.  Moreover failure to communicate needed medical documentation to SSA leaves SSA in a position of no choice but to deny.
• You must communicate all your qualifying blue book issues to your doctor.
• Your doctor must document these issues in appropriately acceptable medical records.
• You must ensure SSA has these relevant for qualifying medical records and that the qualifying issues are highlighted somehow!
• Never give up.  Its all a journey, one where we get there sooner or later....

Cheers!  Kevin.

Dissection Life: A Father's Day message to My Children

The last teenager is out of the nest now.

Father' Day, Dissection Life Message to His Kids

They are all gone.

Our job was to raise them to where they could fly on their own.

The last one is now a freshman in the university system.

Sure they have a ways to go, however I truly believe they could make it on their own now.

And since today is Father's Day I'm going to send and open letter to my children.  I am putting into words below the thoughts of a Father's heart and dissected aorta.

The theme of my letter to my children is: Disappointment.

June 19, 2016

Re: Disappointment

Dear Children:

There are no more of you in the house and silence is certainly loud.

Take my thoughts in this letter with you the rest of your life.  What I want to tell you is advice I dearly hope you will remember the rest of your years.

I have always, always told you to follow your heart.  I may have let you know my opinion but ultimately I encouraged you, and still do, to follow your heart when making a decision about your life.

Listen to what others say because different perspectives can help guide you through life challenging decisions.  Then follow your heart.

If I could tell you one thing now that I hope you will never forget it would be the following sentence:

Dad says, "It is ok to disappoint others, however never, never disappoint yourself".

Think about it.

Each of you have special talents and very individualized passions.  Your Mom and I always want the best for you, but sometimes the best does not lie in conformance to some traditional way of thinking, politics or spirituality.

Times are changing.  Don't stick your life away in a pre-labeled folder file.

Each of you will encounter opportunities where you could do great things for the world.

Don't ever let anyone or anything hold you back.  If your heart says, 'Yes', ask it once more to make sure then follow with all skill, love and desire.

If you fall, pick yourself up and try again.

But please, please do not repress you heart's passions because of what someone else thinks, or the fear of 'disappointing' someone.

Not that it matters, but the only time I'd be disappointed in you if you were living your life the way someone else thought you should live it.

So.  Disappointment is the word.

Learn to validate your own character by determining who you are going to kindly (Dad says kindly is best) disappoint.

Try carrying an "I am going to disappoint" list in your wallet.  Anytime you feel that old sense of "he or she doesn't approve of what I want to do or am doing', add the name of the disappointed person to your list.  Write down the reason why and how you feel.

Sleep on this.

Then go ahead and disappoint them by doing what your heart is telling you to do.

This isn't easy for a father to say.  I always think I know best.

But one thing aortic dissection life has taught me is "life is so short'.

Always, always follow your heart and don't look back.

As Billy Joel said, "You can get what you want, or you can just get old."

Kindly disappointing people is part of the journey.  Just make sure it's others who are disappointed, not you.

Love you, Dad.

Aortic Dissection and Gratitude

Its taken a lot of generations of my ancestors to produce me. Last night I was thinking of how much I appreciate all their unspoken-of struggles over the centuries and millennia .
I appreciate how many endured dissections and aneurysms probably just like I did (dissection in our family is genetic - my mom had the same aorta replacement as I), and they adventured on. Since aorta replacement has only been around for the past thirty years of so - many of my ancestors endured and survived without medical repair.
I'm sure many times some of my ancestors wondered what was happening to them, not having community support as we do today. Many got up in the morning, went to work and despite the challenges of a weakened cardiovascular system, did what they could do, despite limited knowledge of their condition and limited medical treatment availability.
The challenges our ancestors faced were enormous. Everyday they had to completely create commerce, food, shelter, protection and family. Many did not have even a small portion of the medical care, shelter, transportation or luxury available to me.
Yet our ancestors all had one thing in common and that was they were "Survivors".
And they adventured on long enough to pass those survivor genes on to us.
Today I am grateful for all their struggles, challenges and perseverance to make sure we too could be survivors.
Today, I am Grateful to them.

Dissection Life, Best To Read The Ingredients Before Drinking

Everything about #Dissection life is a learning process. Several times members here have posted about 'probiotics' being important to an '#Aorta Healthy" lifestyle and I am convinced its true.

Added caffeine in kombucha? #Dissection life

Always read the fine print ingredients #Dissection life

YIKES! I stopped in the grocer today to pick up some fresh ginger root for smoothies and purchased a Kombucha (ginger flavored). I thought I was being healthy.
Arriving home I laid down for my self-imposed every two hour leg elevation and drank the entire bottle, even though vinegar based drinks are kinda hard for me to swallow. After all - the more bitter the more better.  
So within ten minutes PACs and arrhythmias began. Now my heart and aorta hurts. I've been off caffeine for about six months now after reviewing the bottle I discovered this drink had 80 mg caffeine. Probably not much for most, but for a  #Dissection life adventurer, a no-no and enough to send me into PACs.  
OK I should read the label, even the fine print. The label read "Gluten free, Non-Dairy, Vegan". But I should never assume anything...  
The answer just now? Drink lots of water and meditate to calm my racing out of sync heart.  
Still learning all about this #Dissection life.

Ablutophobia and Aorta Dissection

I've suffered from Ablutophobia ever since my dissection. Ablauta-who? Until this afternoon I didn't even know the appropriate term. I just knew ever since my dissection I've had this big and reluctant fear of taking showers.

From that first hospital shower post-dissection, where I was seemingly locked into a claustrophobic glass enclosure and left to my own panic attack over tubes and wounds getting wet, along with quasi-vertigo and my own weak state of being, I have been hesitant to get in the shower and always relieved, even today, when I can step out.

Since I shave in the shower, my shaving has become more infrequent. I look around, fearful of what could happen.

Now I am a neat-freak too. So I force myself to daily shower. But it freaks me out.

So I was really relieved to read that there is actually a phobia named for people who fear showers and I was relieved to find out PTSD events can be the cause of Ablautaphobia. 

So I am not alone about fearing showers.

Not that it is a big deal. Its just another moment of enlightenment - like when I was DXed with Marfan - that explains much of this ‪#‎Dissection‬life.

Here is a link to Ablautaphobia for any of you out there traumatized by dissection to where showers are an ongoing issue.