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.
.

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.

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?

Ignorance is bliss....or is it?

The last 7 months have been a bit of a fact finding whirlwind..... an emotional roller coaster that has taken me for a ride. First I felt relief and satisfaction that I had figured out the mystery of my many health issues. After a bit of research I felt overwhelmed and sad by the difficult road ahead. As I visit with doctor after doctor to determine baselines and discuss a game plan for my future care I have slowly found myself accepting that which I cannot change with a new found resolve. I am comforted by the fact that my findings will help my younger relatives live more of their life. Through awareness they will be able to avoid lifestyle factors that could jeopardize their health if they find they have indeed inherited EDS.
Like many others I spent Thanksgiving surrounded by relatives.
My recent diagnosis of EDS made it seem that much more important to load up myself and my newly acquired knowledge and travel the four hours to Oklahoma to see my family. Much to my surprise,my health was not a topic of discussion. Ehlers Danlos Syndrome was to be the 500 pound gorilla in the room that everyone ignored. My niece and nephew, both new parents, hadn't heard of the newly discovered genetic defect growing on our family tree. My beautiful and curious 21 year old cousin asked "Is this something I should be concerned about?" Why hadn't this information been shared with them? Why wouldn't you want to spare others pain by empowering them with information?
Why?
I drove home another four hours pondering this question. No good answer came to me.

It is frustrating to reach deep in your heart, past the sadness, to find the silver lining in a less than ideal situation... only to find that nobody wants to see it.

don't protease me

I stumbled upon a bit of information that is definitely worth sharing. It seems that pineapple can be hazardous to those diagnosed with EDS. More specifically the proteolytic enzyme bromelain that is found in the fruit and in higher concentrate in the stem. At first glance you might think that bromelain is the magic cure for many of the problems associated with EDS. Do a quick web search and you will see a laundry list of ailments it can be taken for and more than one advertisement that promotes the pill form of bromelain as a cure for Ehlers Danlos Syndrome. What they fail to mention is that bromelain is a protease enzyme....a protein digesting enzyme. EDS is a defect of the major structural protein in our bodies known as collagen. Duh! Even the pineapple growers of Hawaii list a warning on their web site against eating pineapple if you have EDS or a number of other ailments. Take note that meat tenderizer is made from bromelain too and similar enzymes can be found in papaya, mango,and kiwi fruit.
You can still eat pineapple if you follow one rule. Only eat it if it has been canned. Seems the heat from the canning process kills the enzyme. Good to know I can still have pineapple upside down cake. A small but tasty victory!

splint personality

I received my first seven silver ring splints.They should help support my finger joints and keep the dislocations and pain to a minimum. They are indeed beautiful and feel nice too but a few of them don't exactly fit and the right thumb splint just can't seem to keep my thumb in place. So.... we'll be tweaking them and hopefully my aching joints will get some relief once I am able to wear them daily. I've been thinking about how to describe the pain in my fingers. The best comparison I can come up with is the same tenderness you might have the day after you jam your finger on a basketball. Each joint in every finger becomes sore and swollen in a similar way when I use them. Ice helps. Ice packs, ice in a cocktail,and I'm sure ice cream would help too!

million dollar baby

My new ankle and wrist braces make me feel like jumping in the ring and going a few rounds....running up steps Rocky style....and dancing in place in a torn sweatshirt.
They are for added support while I do crazy joint stressing stunts such as walking and picking up things. The ankle supports are the same kind that place kickers use. Cool huh? They feel fabulous! The wrist support also has a handy dandy thumb support to keep my thumb from hyper extending which will help reduce pain and the groovy corset style lacing on the sides reminds me of a stage costume that Madonna might have worn on her Vogue tour. I just adore accessories! Speaking of which....my silver ring splints are in the works. Ooh La La.

Needy Women

Women have a way of stepping up to the plate with such gentle strength when they are needed. Their nurturing instinct prepared to do service when duty calls. These days the women in my life have rallied around me with their gentle loving spirit and kindness. They seem to know what it is that I need and more importantly what I don't need. I do not need sympathy.I need understanding and respect for what it is I am going through. I do not need doubt and questions.I need friends that care enough to inform themselves about my condition so my illness will not consume our every conversation. I need trust. Although it is not ideal, those closest to me know the relief and sadness that came hand in hand with my diagnosis of EDS and they trust that I have come to this place honestly. It is not my job to convince anyone of my illness. I need someone to listen when I'm frustrated by the absurd and insensitive things people say. I do not need advice. I need a little help around the house. I do not need to give up my life. But most of all...I need to laugh, a cold beer, live music, and a heaping plate of nachos.

My people

I have found my people on the facebook Ehlers Danlos group page. Their post
You know you have EDS if...... told me so. For your enjoyment and a little insight into EDS here is a bit of the list.

You know you have EDS if......
The highlight of your day is bedtime.

Even your dish detergent is fragrance free.

Your most prized possessions are your wrist braces.

You can't lose weight because all of your meds say to take with food

You didn't realize that not everyone can put sun tan lotion on their own back.

You leave the caps off of your medications so you won't have to take them off again.

While bending over to tie your shoes you wonder what else you can accomplish while you are down there.

Your favorite game is guess how I got this bruise

You can't remember if the post it note reminding you to take your pills is from today or the one you just wrote for tomorrow.

You head to the bathroom, stub your toe, sit down to check out your injury then start to watch TV and forget to go to the bathroom.

Medical students flock to the examination room to ooh and ahhh at you.

You are on a first name basis with your doctors.

Your calendar has more doctor's appointments than meetings

Every guy you ever dated remembers you soft skin.

You've ever laughed and dislocated something.

Your "to do" list has two things on it and you don't get one done.

brace yourself

One of the issues associated with Hypermobile Ehlers Danlos Syndrome is joint laxity. When I read that my joints would one day start to dislocate spontaneously I was certain this would be a bit down the road. Surprise!....my left middle finger decided
it would be the "ceremonial first" to introduce me to the joys of dislocation. Not to be upstaged, my right knee joined the festivities soon after. My hand therapist began the splinting process with some plastic make shift finger splints that will help her determine the type of splints I need. The plastic splints will be replaced by groovy silver ones that will make me look like a gypsy. The hand splint (which looks like a Jason mask) is to keep my thumb from hyper extending. I also have a lovely new knee brace. I apologize to whoever is behind me the next time I have to walk through the metal detectors in the airport. It may take me awhile to shed all of the metal gadgets adorning my body. Brace yourself....it's going to be a bumpy ride!

Bull in a china closet

All my life I have been considered clumsy, klutzy, accident prone.... a "bull in a china closet" my mom always said. If there was an uneven surface or a pebble in my path I would trip, fall, and sprain my ankle. If I came into contact with anything remotely sharp my skin would tear. "You could cut yourself on a rubber ball" my best friend would tease. And the bruises! I can't remember the last time I didn't have at least a few bruises on my body.On occasion enough that it made my male friends afraid to be seen with me for fear people would deem them an abuser. An active life full of sports, a "can do" attitude, and a labor intensive career path made my many scrapes and injuries seem justified. But now, at 41, I can laugh in the face of such ridicule. I am not an unaware klutz. I was watching where I was going. I will no longer be labeled a bull in a china closet! But come to think of it......right now, I'd love it if I were indeed just clumsy. It's kind of a cute word.

but you don't look sick

I have had a handicap placard for some time now due to my many knee surgeries. But I allowed an incident several years ago to rob me of what I now know would have been
a great benefit to my long term health. Not long after a knee scope a woman followed me into a Target store from my handicap spot and proceeded to verbally assault me. "You don't look handicapped!" she yelled in an attempt to shame and embarrass me. I'm certain what she considered a suitable punishment for my wrong doing and a noble act on her part. Those who know me, know that I am both non confrontational and an extreme introvert. So, needless to say I was both hurt and humiliated. Somehow I mustered up the courage to walk up to her. With tears in my eyes I informed her that I had just had knee surgery and that she shouldn't speak when she has no idea what she is talking about. I knew my words were wasted as she nodded in disbelief and judgement. And she continued to spew ignorance as her husband pulled at her arm and mouthed a silent apology to me. When I told my Doctor of the incident he shared with me a thought that has served me well in many circumstances "How dare she pretend to know your truth."Doesn't that just say it all? How many times do we make judgments about people when we don't know the whole story.....know their truth. That little statement has led me to live my life with a bit more understanding. It has led me to assume in the direction of understanding. And it makes for a pretty good retort "You don't know my truth!" Very dramatic. Now that I will be using my handicap spot more often I will be dusting off that phrase as well as a few others such as..."Ehlers Danlos look it up jerk!" or "You can't see pain!" and just for fun "guess which leg is fake!" In a continued effort to look at the bright side of Ehlers Danlos Syndrome I have to admit that I do love my rock star parking.

Physical Therapy

I met with a very kind Physical therapist yesterday to discuss deep water therapy.
It seems to be the preferred method of cardio for EDS patients. She impressed me immediately with the fact that she had researched EDS and knew that I was going to have to be my own advocate. She was gentle with me...she noticed how I held my pen and could see the discomfort in my hands, she noticed the changes in my skin coloring when I over heated while walking past the hot tub. She noticed tears in my eyes when we discussed keeping me out of a wheelchair for as long as possible and then I noticed her sympathetic tears. She was soft spoken and completely present.Offered me tips on saving my joints and let me know that every little thing I don't do now will keep me out of a wheelchair that much longer. Things like mowing the lawn, pruning trees, fixing things around the house, walking up the stairs,lifting heavy items, washing my car. She also gave me a great piece of advice. "do the things your heart truly wants to
do and forget the rest" The EDS patient can go to a concert or Worlds of fun but the
handicap "hangover" may require two days of bed rest to recover. I appreciated her gentle candor. The last thing I need is someone telling me "everything will be okay"
when, to loosely quote my magic 8 ball -all sources say otherwise.