"Suffering the Slings and Arrows of Outrageous Fortune"


This year, as Thanksgiving approaches, I have so much to be thankful for. More than ever before, in fact – I feel that ‘my cup runneth over’ with blessings.  So, I am posting my list of thankfulness here:

My ‘coincidental’ finding of the Driscoll Theory. This was the single event that opened the door for my daughter to get the proper treatment, which drastically improved her life, which has allowed her to start living again. Divine Providence? Yup. The Driscoll Theory is my ‘horsehoe nail’, immortalized in the well known poem.** Just goes to show, you never know where that answer is or when it will come, so never give up.

Diamox. I cannot emphasize how much this $4 prescription has changed my daughter’s life, once we finally were able to try it. Her headache is gone, her positional blurred vision is gone, her dizziness is much better and she is living again. Diamox deserves a lot of the credit. It is nothing short of a miracle to us.

The other medications that have improved my daughter’s quality of life. Mast cell treatment (Zyrtec and Zantac),  Amitriptyline (which lets her sleep), Neurontin (which has significantly reduced her pain). It took a long time to put this list in place, but we are finally reaping the benefits of perseverance.

Dr. Diana Driscoll. She deserves a very special place on this list. I am truly indebted to her and her efforts to help the folks living with these challenging conditions. Without her work, my daughter would still be spending her time in a darkened bedroom, unable to function with no hope of proper treatment. What words are sufficient to express an appreciation for the return of a life? There are no words that can truly express my gratitude – so all I can do is say a heartfelt ‘Thank You” to Dr. Diana Driscoll.

Brian Short, physicians assistant at our neurology office. He is the wonderful guy who restored my faith in the medical profession. He listened to my explanation of the Driscoll Theory, understood why I thought it applied to my kid and gladly wrote a prescription of Diamox for us to try. He didn’t hurt my kid or treat her like a freak. And he praised me for being an advocate for my kid. This guy deserves a medal.

Our other doctors. I may have my issues with them, but they have helped improve my daughter’s life  – each in their own ways – and I have to be thankful for that!

Family. We are blessed to have family who support us on this challenging journey. Family who would do anything they can to help Em (and help us help Em). They accept the diagnosis and want only the best for Em – unfortunately,  I know that not all family members are that accepting. They are there to listen and celebrate with us after every victory and they commiserate after every set back. I am blessed, in ways I can only treasure in my heart and mind – those thoughts are a warm blanket that my soul finds comfort in on hard days.

Friends. We also have a wonderful group of friends, who love us and accept us. I know that this is something to be thankful for as, sadly,  not everyone is so casual about a friend in a wheelchair. They love us and they, too, have been there every step of the way – from the first moment I sat them down and told them I thought Em had EDS,  through every rough patch, through every hard fought success. They have cried with me, listened to me, encouraged me and prayed for me  – even to the point of scheduling a 48 hour prayer vigil for us when we were at the height of our Diamox saga. They watch out for Em and try to protect her from herself. I am blessed beyond words by them.

And here are a couple weird ones that deserve a place on my Thankfulness list:

An official diagnosis. I know it is weird to be thankful for a diagnosis of something as rotten as EDS, but it was such a relief when Dr. T confirmed it – and it has created the possibility of access to better treatment. So much has happened since March, when we saw Dr. T, that I almost forget how important that diagnosis is in the big picture. I am thankful that we have a name for the problems has lived with her whole life and that we have access to people who can help us. And that we have a chance to intervene early and prevent further damage, hopefully improving the prognosis. So, yeah, I am thankful.

Insurance Hold-ups. This is a bit complicated, so bear with me… When we thought that Em had cervical instability and would need a fusion, I was frantic because our insurance wouldn’t pay and we had to wait to apply to BCMH and then wait more to get approved. I was furious because we were twiddling our thumbs while my daughter was getting sicker and sicker. But, here is the funny thing: If our insurance had initially paid for everything, she would have had those tests and possibly would have had life- altering surgery before we found out about the Driscoll Theory. So, the fact that our insurance was ridiculously  stupid, actually might have saved my kid from an unneeded surgery and a lot of pain and suffering. A perfect example of how God can bring good out of bad. It may be weird, but I am even thankful to our insurance right now. Like I said at the beginning of this post – my cup runneth over and I have enough thankfulness even to spare for our insurance company. That should tell you exactly how thankful I am!

There is so much I have to give thanks for this year and I need to remember that all year long.  Happy Thanksgiving!

**The Horseshoe Nail                                                                                                                                                                                                                                           by George Herbert

For want of a nail, the shoe was lost.

For want of a shoe, the horse was lost.

For want of a horse, the rider was lost.

For want of a rider, the battle was lost.

For want of a battle, the kingdom was lost.

All for the loss of a horseshoe nail.


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