stimulating conversation

 For those dealing with mastocytosis the list of foods and circumstances that can trigger an
allergic reaction changes from day to day. Mast cells multiply with each flare and before you know it
you are reacting today to something you were fine with yesterday.  I almost offed myself with a plum not long ago. Death by plum would not have been my choice.
  My most recent allergic reaction was so unusual I thought I should take the time to share it.  While having an MRI on my left ankle I started to feel my nerves react in a popping sort of fashion. My throat became sore too but I didn't make the connection until I was in my car and looked in the mirror. Splotches covered my face and my tongue had swollen. Luckily, there was a grocery store nearby and I chugged an entire bottle of Benadryl in the aisle before even paying for it. Who knew that an MRI could trigger an allergic reaction ? Not me!!  For those of you who read this and are not convinced that it was the MRI that triggered my attack.....I give you exhibit B.  Last Thursday I had my 11th knee surgery. Due to the fragility of my vascular system, nerve blocks  are my sedation of choice. No IV medication. Wide awake with a numb leg. In order to locate the nerves, the anesthesiologist has to stimulate the nerves.
Yep. You guessed it. I had an allergic reaction........ I rest my case.
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Thanks Pharrell !

     I have been meaning to post some thoughts on the healing powers of music for awhile now. But today is the day I was motivated to actually do it. Motivated by the song Happy written by  Pharrell Williams. As I sang along in my jeep this morning, I wondered if Pharrell had any idea the happiness and healing he is bringing into the world...and the soldier of joy he has become.  More than the numerous awards on his shelf, he is making the world a better place.
      Music is one of the few things that, while immersed in it, can take away my pain. There's science behind it. But I will not bore you or myself with what a Harvard study proved to be true in 1982. I write what I know. I know this to be true. Music that touches your heart or brings you joy is a very powerful thing. For those wonderful and magical few moments, the pain drifts away on a catchy chorus, brilliant lyric or a beautiful note.
     A special thanks to some of my favorite musical healers.

Patsy Cline- Lyle Lovett-Janelle Monae-Amber Rubarth-Iris Dement
Raul Malo- Don Williams-Rex Hobart- Paul Thorn-Louis Prima-Dinah Washington-
Patti Page-Bob Walkenhorst-Jeff Porter-BR549-Benny Goodman-Bruno Mars-
Chatham County Line-Wanda Jackson

Temple of learning

     I have always said that I stood in line twice when they were handing out empathy. When people feel pain, I feel pain.Sad movies can affect me for years. Some have taken a little part of my soul that I will never get back. One night I googled the phrase-too much empathy. Three words. Three words that took me on a journey and helped me to better define my place in the world. The first article that popped up was titled-Asperger's theory does an about face. The article explained that people with Asperger's had been thought to lack empathy, when in fact, they were so hypersensitive to the point of shutting down. As I learned about Asperger's syndrome/ Autism Spectrum disorder I began to recognize myself . Quirky, odd, strange.....all labels I had grown up with. But in 1998 they were given a name. It was Asperger's.
    The Universe had more to show me in the form of several coincidences over the next several months.
I rented a movie about Temple Grandin and saw more of myself. I was a visual and literal thinker too. I was
hypersensitive to light and sound and smells and too much stimulation. Then..... Temple Grandin was scheduled to speak at my workplace! The ah ha moments piled up throughout her speech. The puzzle that was my mind finally fit together. This was followed by a 42 score on the Baron Cohen test (17  is neurotypical aka normal).
     The autism spectrum is wide and varied. It is said "If you have met one Aspie, you have met one Aspie".
But if you know me, I am easily recognizable in the diagnostic criteria. Just like my Ehlers Danlos Syndrome
diagnosis, there have been dismissive comments "Oh, you don't have that"......"I don't see it"....and so on.
It is not my job or desire to convince those people of what I know. And I know myself.
  I am comforted by the thought that there are other people like me....that I am not alone in my quirkiness.
My name is Gina and I am an Aspie!

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.