Wednesday, February 3, 2016

Marfan Life, It's 1:41 AM and…We Need More Connective Tissue Awareness

My right leg hurts too bad to sleep.
My connective tissue tears easily and since I am on warfarin, many times I will develop internal bleeding
I can't lie still.  1:42 AM now and the blue iPhone light reflects across the room.

I worry that all the tossing and turning will wake my wife.  But I worry about that almost every night.  I am hoping Marfan Awareness month helps with others understanding crazy connective tissue life.

My leg hurts and I cannot find a good way to lie on the bed.  At least it does not hurt as bad as it did two weeks ago.

All I did step down off a curb a little differently.  I didn't fall.  I just stepped forward in a slightly unusual fashion.  All this pain because of one mis-step.

People wonder why I am hurting so bad.  Heres to hoping Marfan Awareness month helps with others understanding crazy connective tissue life.

Two weeks ago the nurses at the ER could tell something was up.  Perhaps my dark purple upper thigh looking like a beet was a clue.

"I tear", the words automatically roll off my tongue now when I go to the ER.  This is the second ER visit within a year for a major internal bleed.

The nurse's forehead wrinkled as he studied my leg.  I wish my wife, Judy wouldn't have that worried look on her face.

"I tear and I am bleeding out internally.  I've got blood all in my stool", I had said,  partially repeating myself and rubbing my swollen leg.

Yes, I hoped the hospital ER would be able to quickly determine the extent of my internal bleeding, tell me I was not going to die and patch me up and send us on our way.  My wife had a nature photography presentation the next day and I was so proud of her marvelous art.  I didn't want a stupid ER visit to ruin the show.

But that was two weeks ago and the walnut sized hematoma in my upper thigh muscles now felt hard as a rock and hurt like heck.  And the iPhone clock told me it was 2:10 AM.

I still can't find a comfortable position to lie in.  And the light blanket keeps pulling off my feet.

Why did I take my socks off earlier?   I know good and well the sheets will be off my feet sometime during the night.  Best to leave socks on when you are a long Marf.

How come sheets and blankets are most always made for short people?  Marfan life requires sheets with adequate long length.  And its tough too to find long enough pajamas.

My connective tissue obsessed mind swirls with unending strange thoughts and it is 2:20 AM.

"Are you already awake?" Judy asks.  I feel guilty for having woken her up with my tossing and turning and trying to arrange the sheet back over my feet.

Perhaps more Marfan Awareness could help those we sleep with understand just how much a hassle nighttime can be for those of us with connective tissue problems.

"I think I will type on the computer", I whispered and gently swung my pained leg out of bed.

Tramadol was supposed to help.  My primary care physician had taken one look at my purple thigh and said, "Ouch".  I can't take opioids because they constipate me in a really, really bad manner.

"No NSAIDs for you with all that bleeding", Doc had said.  "You have a torn muscle or ligament and we aren't going to go poking inside of you to see what it is.   Last thing you need is more prodding around inside of you.  I suppose it will take about twelve weeks to heal.  I'm giving you a script for Tramadol.  No need to come back unless it gets worse."

Oh God, I wish doctors really understood what a life with weak connective tissue is really all about.  Maybe Marfan Awareness month will help with doctors more accurately putting together pieces of the connective tissue life puzzle, I thought.

The Tramadol really helped with the hematoma pain.   Unfortunately my PT INR subsequently shot up to over seven.  Even more alarming was the fact that my stools had turned to bloody liquid.

But that was two weeks ago and now its 2:35 AM and I can hear my wife breathing as she sleeps once more.

Living with someone who has Marfan syndrome is difficult, I know this.  I wish she did not have this hard health care giver journey to endure.  Even so, I am really really glad she is my life partner.

Judy has unselfishly given the best of her life to help me through all kinds of crazy emergency aorta surgeries, heart infections and the emending day to day connective tissue problems I encounter.  And I do the same for her with her non-Marfan health issues.

But I hope this Marfan awareness month can help her and others like her understand even more so the craziness of connective tissue life.

Awareness is crucial.  It is now 2:45 AM and I hurt with that danged leg pain.  But I don't dare take another Tramadol or any other pain killer for that matter.  Where are the pain management experts who understand the relationships of artificial heart valves, anti-coagulants and pain killers?  I need to find one!

Yes, I know now the literature supports Tramadol as being compatible with PT INR management.  Looking back on my bleeding episode though, I probably should have been instructed to monitor my PT INR carefully with the addition of the pain medication.

Perhaps Marfan awareness month will help with more doctors understanding connective tissue life and pain management.

The day of my ER visit last week, Judy was supposed to have had a photography showing of some of her fabulous nature photography art.  She especially has a magnificent eye for wading bird and wildflowers.  We both love Florida nature so very much.  Our daily walks are therapeutic on both a spiritual and physical level.

"I'm going to postpone my presentation", she told me.

"No!" I replied.  Last thing I ever want as a tearing Marf is to be a burden for anyone.  "I'll be out of the ER in time for you to do your presentation!"

"I just can't", she said and shook her head.  "I can't speak to a group of people not knowing if you are going to live or die," Judy continued.

This was the last thing I wanted to hear.  Why can't people understand that Marfan Life is all about not knowing what is going to tear or break next?  Why do I have to be the one to get in the way of everyone else's lives?

I just wish they'd understand.

Then it hit me.

As I was writing this post.

At 3:04 AM, Wednesday morning EST.

This whole February Marfan Awareness month is not just to help others understand crazy connective life issues.

I am sure Marfan Awareness month will help those primary care doctors and pain management specialists and nurses and ER doctors with understanding their connective tissue challenged patients like myself.

Maybe even the sheet and blanket and pajama manufacturing companies might read this post and start offering a line of extra-long products (affordable ones please).

And there are so many others out there Marfan Awareness month could reach and ultimately improve the lives of us Marfs.

But what hit me just a few moments ago was the idea that Marfan Awareness month efforts should not just be directed at the 'others'.

Yes, others need to understand our connective tissue problems.

But I need Marfan Awareness as much as anyone else.  I need to know there are others whose legs and back and arms hurt at 1:41 AM.

I need to know that my feet are not the only feet protruding out from under too short sheets.

I am not the only one in the ER because I tear so easily and yes, my wife and family do worry about me  much more than a photography presentation.

Marfan awareness is not just about making others understand how they impact us.  Marfan Awareness is also about helping us understand how we fit into a non-Marfan world.

Like the short sheets and floody pajamas and PT INR or pain management, connective tissue life integration can be difficult to facilitate.

I need to stay involved with our local chapters and participate more in support group activities.

Marfan awareness is not just about 'the others', its about 'us Marfs" too.

I am so appreciative of all my supporting family and friends and physicians and the Marfan Foundation.  I hope we all can continue to be more aware of how we 'connect' in this crazy connective tissue life experience.

Here's to more connective tissue awareness for us all!

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