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 

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.


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