How long before you got a diagnosis of dysautonomia?

Saturday, April 10, 2010

Postop Day # 18 S/P C45 and C56 Anterior Fusion

Maybe it was C56 and C67...I am still recuperating and it one day at a time, and now one breath at a time that brings be into situation after situation. All in all, each one is a success unto itself.

Our nine-year Wedding Anniversary was 2 days ago, on April 8. 2001. What a fine day to remember, a day when it is 'all about the bride'. Hidden and secret family scandals occur, both prior and afterward. We danced and celebrated at a time when 'we' were a 'we'. Everything in the family seemed fine, and it seemed that nothing was terribly strange or out of order. New babies. New friendships, old friendships coming from all the places in the world: USA, Canada, Mexico, Puerto Rico, Chile, and such a whirlwind of time. A whirlwind of people. A whirlwind of romance and beauty and the future and a long life together...on that day, I was the Bride. Mike was the Groom. It was our time. We had it.

And then life happened. People at my place of employment made the mistake of trying to get me to change to practice less than 'the best' medicine at the Veteran's Administration in Karsin, CA. What should I do? What would you have done? I followed my God and my ethical conscience, and I tried. I did the best I could. Until it took such a toll on my life that it was causing me to implode. Two choices, right? Fight or Flight. I can run away from it all, or I can stay and fight. I know that I have always been a fighter, but one has to recognize that there are different rules to different fights. And that people lie. And that getting a group of people to tell the truth, to change from doing bad practices and to instead put the dignity of the patient first (foreign concept to some).

Bitterness, resentment, horror upon horror until even a murder occurred. But I fought. And I had a couple of lawyers that moved through forests and rivers to fight in my stead. Like having big brothers to stick up for you, to ask the questions that need to be asked. Another lifetime itself.

My children becoming objects of my passion for life...my husband and family together defining the 'real' me. The Martha Stewart that was always in me...it came out full bloom until BAM! Car accident, traumatic brain injury, vertebral artery dissection and aneurysm. Then PICC lines getting infected time after time. Time after time. 28 ambulance visits, just as many hospitalizations and WHAT? It just can not be true. It is a mistake of some kind.

I'm actually sitting at a large conference room table. Not an Ethics Committee meeting or a Student Health Advisory Committee meeting. A brain injury meeting, and my peers are sitting around me with halos, hard collars, wheelchairs, and straws. In my usual world, I was the one standing and giving instruction, giving teaching aid, giving lectures. But there was a lady there, one that was doing just fine ~ I know I could do her job. She was the one that was telling me and all those around me, how to keep lists so we don't forget our medications at home. Huh? Wha...t?

Now I am sitting here today, a shadow and a reflection of those who helped shape my life. And sitting here thanks to God. Putting thought to mind, from mind to fingers, from fingers to typewriter. Together, these random strings of letters become words that become real to you now. As you read I am tantalized at what you will hear. What you will interpret. What you will mistinterpret. What I will say wrong, or less delicately than one likes to speak or think.

But I've seen too much. I've held too many dying hands. I've stayed up with too many people who were dying, alone and slowly in their beds. And I can go on with my life, knowing that I did the best I could. What price have I paid? Lost friends and family, kept those that lasted the years and were based on love, loyalty, and actually knowing a person. Knowing that you can speak with confidence if some one relays some juicy gossip; instead, you dispel the story with your own eyes and your own ears. It is the truth of who you are that everyone sees each day. Go home and kick off your shoes. Again, show us what you are really like, as if your life was on display for God to see.

Perhaps earth is, as TJae said it, a 'testing ground' for all humans. From our lives here and how we live them, it is then determined where you will spend Eternity. I've never heard a sermon on a subject of Testing Ground...but isn't that what it really is? How we act to the homeless man begging for a drink of water; whether the sick and disabled come to your fancy parties...how you treat the person who empties your trash can and cleans your toilets...perhaps it is that this is the 'testing ground', and every day is a 'test'. Maybe I should study more.

In surviving medical school and training as a single parent with no child support, after surviving a car accident which left many doctors scratching their heads in wonder; after surgery to my rotator cuff and now surgery to my cervical spine. I can not hide the slit in my throat where the surgeon went in. Now I am wearing a tattoo of sorts, plastered on my throat. To show people that I am one tough cookie. To be a witness to the Lord. To succeed in all that I do, all that I ask of my God. I thank God for yesterday and as I choked on a piece of rice soup while talking on the phone (won't have that combination any more)..I was choking. Upper airway. Iatrogenic. Self-induced because the bite that I took was too big.

I have to remember that I can not swallow as in previous times. The food can not be chuncky; it must be blended and moist. With each swallow, a trickle goes down the trachea, probably following straight down into my lung's right lower lobe. How much time should we give before taking a chest x-ray? One day at a time.

That's all we can do. Pray for those who are sick. Help those who are in dire need.
God, break me and blend me into your person, the person you want me to be. For to live, it is to live for you. Without you, there is nothing else. With you, mountains can be moved and things can change. It is this deep hope, this buried belief, this rock of salvation that provides my hope. God, please make sure my words do not fall on deaf ears. For I know that even deaf ears can hear.

I won't be talking on the phone and eating any more, folks. Whew. Learned that lesson and I only need to learn that lesson one time. I thank God for Martha and her team of doctors who kept checking on me, to make sure I was okay. Now I may sleep, knowing that tomorrow will be another day and that God is with us in all things. Hoping that if your eyes are able to reach these words, that God blesses you with insight and 'fight'. If earth is Testing Ground, bring it on. I can show you just how deep my head is buried in the loving arms of Jesus. There's room for you, too. Come, sit with us.

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