Post op Ellen

I have a lot of information to share about my most recent surgery last Tuesday June 11,2013.
The amazing Dr. Fraser Henderson performed a brain decompression and stabilization along with some other housekeeping he felt was needed while he was poking around in my head.
But before I post all of the informative details, I want to share a fun story with you all.

While in post-op, I had a very kind nurse named Ellen assigned to me. She handled the fact that I projectile vomited on her like a true champ. This was not just an ordinary spew...not the kind they give you that little kidney shaped pink plastic tray for "just in case"....in a word, it was epic.
The amount of liquid that introduced itself from the depths of my stomach into the post-op
activity was over the top...as if from the imagination of a first year film student....an SNL skit....or
pardon my predictability....The Exorcist. Trust me. It was right up there. Orange in color, nice arc,
good distance, and peak saturation of Ellen and me and my bedding. Like the pro that she is, Ellen changed me and my bedding with speed and gentle understanding. She simply said "happens all the time"- So, thanks to Nurse Ellen at Doctors Community Hospital in Maryland. You are a rock star!

a few of my favorite things

The holiday season seems like the perfect time to share a few of my favorite things.
These products have been a big help to me as I deal with the daily aches and pains associated with
Ehlers Danlos Syndrome and Chiari.

Peaceful Mountain Muscle Ice- A cool menthol gel that lasts longer than bio-freeze. It helps me with
sore joints, migraines, TMJ and RLS. A great big hug to the genius behind this product. It has helped me
get through some pretty tough nights.

Vanicream bar soap and lotion- free of dyes, fragrance, masking fragrance,lanolin, parabens and formaldehyde. The best product I have found for my super sensitive skin.

Loctite brush-on super glue- When your finger tips split open and hurt so bad you can barely form a sentence.....brush it on and find relief.

Corelle dinnerware-
Light weight, smaller sized plates and bowls and super durable.
Easy on your sore and hypermobile joints and drop it all you want...it can handle the daily mishaps of an EDS household.

Bless me father for I am annoyed

Since being diagnosed with Ehlers Danlos Syndrome and Chiari, it seems important for others to know what I believe, if I have faith and if I have been saved. For some reason they feel it is necessary for my beliefs to be consistent with theirs in order for me to be "okay" should I meet an early demise.
So, here is my answer.
Do I believe? Yes. I believe in the following...
I believe that kindness matters.
I believe in being authentic.
I believe that things work out best for people who make the best of the way things work out.
I believe that pets bring joy to a household.
I believe that true love is rare and should be valued as such.
I believe in being grateful for the things you have.
I believe that happiness is not a constant state to strive for but the choice to recognize the many
delights that come your way.
I believe that glitter makes the world a better place.
I believe that funny is funny and laughter is rarely inappropriate.
I believe you should live your life and not interfere with how others live theirs
I believe that in the end we live on forever in the hearts of those that loved us.
Do I have faith? Yes
I have faith that when I am in need my true friends will be there for me.
And I have faith that things happen for a reason.
Have I been saved? Yes and no.
I have not been saved from the heartache, disappointment, sadness, and suffering that are a natural part of life. I have, however, been saved from despair over such happenings by friends and family that care for my well being, a sense of humor, positive attitude, resilient spirit, and Ben and Jerry's Chunky Monkey ice cream. And I am certain that I have been saved many a time by my quick wit, innate common sense, good judgement, and inner strength.
I think the Dalai Lama said it best
This is my simple religion. There is no need for temples; no need for complicated philosophy. Our brain, our own heart is our temple; the philosophy is kindness.

Blah Blah Blah

It's been awhile since I have posted. I guess I figured people are just as tired of hearing about my health as I am from dealing with it. So much has happened since my first visit to Maryland(April of 2011)to meet with Dr. Fraser Henderson and Dr. Claire Francomano.
I have now met the diagnostic criteria for Chiari malformation. That's 5mm of your brain falling through your skull to put it bluntly. My C5 and C6 vertebrae are now plated and fused and my spinal cord has been untethered. Spinal surgery was so much easier than I expected. A piece of cake compared to knee surgery.I am sure the magic hands of Dr. Henderson had a thing or two to do with it. And untethering my spinal cord has provided an amazing amount of relief. Haven't needed meds for back pain since about a week after my surgeries. I have a few more items to add to my list of EDS related challenges. Esophopharyngeal dysphasia aka jacked up swallowing.Slight Unilateral vocal cord paralysis which is a result of the chiari and will be a help in monitoring when it is time for brain decompression surgery. Dr. Henderson says "you will know when it's time"...as I understand it, the brain falls and puts pressure on a nerve that controls your vocal cords. I also have a hypoplastic A1 segment which means I am missing a part of a vascular structure in my brain known as the Circle of Willis. This increases your chance of brain aneurysm.
And finally in my list of new and fun EDS related oddities is a hiatal hernia.
So, blah blah blah I'm still falling apart...blah blah blah seeing a Dr. about this and that...blah blah blah I still have my chin up and am fighting the good fight with humor and sleep and meds and friends....and my dog Harvey.

The Harvey connection

I adopted my dog Harvey about four years ago. His name was a big part of why I chose him. The Harvey girls(google it) are a big part of Kansas City history and I took it as a sign that Harvey should live with me.And... growing up in the 70's there were two very important Harvey's in my life. Radio personality Paul Harvey delighted me daily with his "rest of the story"..my dad Ted and I would listen to Mr. Harvey every day on the radio while sitting in his bright yellow, convertible, Karmenn Ghia. Then... there was Harvey Korman. He and the cast of the Carol Burnett show brought me hours and hours of -on my elbows- entertainment. With the passing of Paul Harvey and Harvey Korman my dog officially became Paul Harvey Korman.

Shortly after my EDS diagnosis, Harvey Korman showed up on a google search for Ehlers Danlos Syndrome. Imagine my surprise when I found out that his son had EDS.
And the kicker.....I will be seeing Dr. Claire Francomano, the leading genetic counselor in EDS. Guess where her office is. The Harvey Institute!!

Be nice! Or I will blog about it!

Dear health care professionals........

You have chosen a profession in the health care field.
You have chosen to work with patients.
Patients are not the enemy.

Patients are people.

People faced with diseases, disorders, syndromes,and ailments.
People who are sick, wounded, hurting, and broken.
People who are frightened,nervous, confused, sad, and vulnerable.
People that have turned to you for help.

Your patients expect you to be knowledgeable, confident, and curious.
Not arrogant and dismissive.

Patients are people.

People with their own truth.
Do not presume to know it.
Do not make negative assumptions about their behavior.
Please ask questions.
That needy, sensitive, and overly emotional patient could have been beaten, abused,
molested, or raped.
You do not know her truth.
You can do your job effectively and remain mindful of the human spirit that resides inside a damaged body.
Or...you can fix the body and damage the spirit.
It is your choice.
Your choice to work with kindness.
Your choice to work with patience.

EDS....don't it make my brown eyes blue?

I had a very Blue Christmas. Not to worry though, my emotional state was not the cause. On Christmas Eve I hurried to the hardware store to purchase salt in preparation for the blizzard that was about to hit Kansas City. Unfortunately a very thin layer of ice had covered the parking lot. My left foot hit the ice as I exited my Jeep and in a split second I was on the ground outside my car. My arm and head taking most of the blow from the car door and then the running board before I came to rest on the icy concrete. Oy!! The bruise on my right arm was a crowd stopper. Deep purple, blue, and green stretching from my tricep past my elbow and onto my forearm. After numerous x-rays and a CT scan the Dr. proclaimed me fortunate to not have broken anything. He did, however, find another piece of the Ehlers Danlos puzzle. The whites of my eyes were a faint blue. Blue Sclerae is often found in EDS. I always loved Crystal Gayle.

Don't it make my brown eyes blue? oooooh ooooh Don't it make my brown eyes blue?