Wednesday, January 1, 2014

Dissected Aorta, Connected Tissue Disorders and 2014

It has been an entire month since I last published a blog post.
Dissected aorta or not, must keep going!
Pain and depression I've battled lately have discouraged me from writing. However I know that I need to keep pushing my partially functioning brain.  Last thing I want is to end up with moss and fungus growing all over and inside my head.

The memory loss and recall issues is so very frustrating. My conversations are sometimes filled with nonsensical terms as I reach into once word filled but now empty grey matter chasms.

And my body hurts so bad.  Last night I had promised others I'd show up for New Year's eve fun.  However after taking the teens out for pizza I felt the imminent crash of pain and exhaustion and had to have Jincy take me home.  Stumbling into the bedroom I fell on the floor and passed out into unaware oblivion until the midnight neighborhood fireworks rocked the house.

There are no words to truly describe the feeling of muscles shredding, pulling apart, unraveling, burning with uncoolable heat.  Curling into a fetal position I lay still for hours, until I fell asleep once more, the rest a gift of mercy from my guardian angel and from God.

It is so easy to feel sorry for myself.  With a dissected aorta, an obnoxiously loud aortic valve, chronic fatigue, the worry and pressures of living life as a disabled person without a driver's license, watching my wife nurse her second oldest daughter laying in the hospital with a cerebral hemorrhage, two teenage additions to our family (who are truly blessings) experiencing the turmoil of their sick mother and having to be transferred to a different school midyear, the physical demands of keeping up with the parenting and energy input requirements of four teens, and all the other 'stuff' that happens to us all, is easy to become self-absorbed in pity.

I can say I will choose the higher path, one with love, care and concern for others above myself.  That sounds so good.  But I know I am only human and will soon fall back into the narrowly focused pit of pain and hurt, because I really do hurt!

But I am going to try.  I will fight off the ... (I cannot think of the appropriate word for the state of being where depression and pain are so friggin bad - maybe - monumental BLAHS) and commit to trying, at least for a day.

So I will be once more posting diet and blood pressure and Marfan Syndrome - Dissected Aorta life notes here on the blog.

Maybe if I can get through today I will do the same again tomorrow.

Yes, I am thankful too.  I do have a wonderful family, wife and children.  That loud aortic valve means I am alive.  My friends are so encouraging.  My guardian angel sits faithfully outside my window and follows me wherever I go.  There is a marvelous organic garden outside.  Sidewalks bring beautiful and adventurous pathways for miles along most of the roads here.  Wildlife and wildflowers inspire haiku and poetry and life's beauty is inspiring.

But the depression of hurt sucks.  I am not going to lie to myself about this.

Just going to focus on making it through today.

It is going to be a good one.  Despite.  Hallelujah, right?


Rebecca Stearns said...

Kevin, you are such a strong person. I do not have the physical issues that you have and I still often find it difficult to climb out of the black hole of depression.

Dawn said...

I love your heart, Kevin!

Jane Berg said...

Kevin, thank you for posting. My daughter has gone through two dissections, aorta root graft, complex aorta replacement, and gallbladder surgery (which was a short 32 days after the complex aorta replacement. Her initial dissection came 6 days after having her second baby. She was very lucky to have survived much as you were. I applaud you for posting your journey. A helluva journey it is for everyone involved. I'm hoping to write an article chronicling our experience. More Marfan patients and their families need to continue to get the word out about living day-to-day with this condition. Best wishes to you and your family for your continued journey to a healthy, prosperous life.

Jane Berg
Arvada, Colorado

AshPash Mom said...

Wow... I stumbled on your blog 2 years ago and saved it.. Intending to read it later. Facebook popped up with memories and there was your post. I read it and ... It's as I wrote it myself. Right down to the loud beating valve. Thanks for your words.. I often can't find my own.