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.

better living through chemicals...as needed

While listing my medications in preparation for a visit to the eye doctor It hit me just how much a genetic defect in your collagen can benefit your local pharmacy. The prescriptions for pain,inflammation,and sleep medications have quickly filled up my bedside table. They stand alongside my daily ADHD pills and many other non prescription remedies for me to pick and choose from...as needed. Excedrin or Maxalt as needed for migraine. Benadryl, Domeboro powder, Caladryl, or a Medrol dose pack as needed for allergic reactions. Albuteral inhaler or Advair as needed for asthma. Bio freeze, mineral ice, Advil, Mobic,and Darvocet as needed for pain. Tylenol pm or sonata for sleep as needed. Vitamin C is taken daily now for the possible chance that it can strengthen the vascular system. My sensitive skin requires special soap, lotion, and shampoo that is free of dyes, fragrance, masking fragrance, lanolin, parabens, and formaldehyde. Vanicream and Free and Clear products can all be ordered at the pharmacy counter. The staff at my local CVS have learned to recognize me after 11 years and 11 surgeries worth of visits. And I am very comfortable calling my pharmacist at the drop of a hat to make sure I don't mix and match what I shouldn't. He is always happy to help me at any time of the night. I just love 24hour pharmacies!

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!