Monday, April 30, 2012

Botox for Migraines

Today was the day!  I went to my neurologist, so he could use me as a human pin cushion.  Starting in my forehead, moving around my head, down the back of my neck and across the back of my shoulders. I have suffered with migraine headaches since I my early teens. We do know that a fair amount of my headaches are because of the Chiari but we suspect that I am also a classic migraine sufferer.  I have been quite nervous about this procedure, not because of the shots but the thought of having a toxin derived from pigs injected into my body just didn’t seem prudent. 
The actual act of getting numerous shots wasn’t bad actually. My doctor used numbing spray and the needles are very tiny.  Their was minimal pain from the shots.  But I must admit that my head did feel a bit odd for the remainder of the day.  I can’t even quite explain what odd actually means. 

For the next three months I must track my headaches. This will help give my neurologist a complete picture of whether or not the Botox is helping improve my situation with my headaches.   Recently, I have not been on any migraine prophylaxis as we have been unable to find any that actually reduce the number of headaches I am having per month.  So I am quite curious to see if Botox will be effective.
Migraine Tracking Form
It is now seventy two hours later and so far I cannot report great results.  I have headaches every day since receiving the shots.  However, I don’t know how soon the Botox is supposed to be effective.  I have also been extremely lethargic the past few days. I don’t know if that is the Botox, the chiari or depression.  Yet, I am hopeful that things will start improving.  For years I have struggled with migraines and its time that something finally work for me. 
“Hope itself is like a star- not to be seen in the sunshine of prosperity, and only to be discovered in the night of adversity. ”― Charles H. Spurgeon
Now for the fine print: For further information regarding the use of Botox as a treatment of migraines check with your doctor or visit Botox for Chronic Migraines

Saturday, April 28, 2012

Prom Night

Tonight is prom night for my niece Katie.  Her prom is being held at the Oklahoma City Museum of Art and she is going with friends rather than with a date. After the prom she has plans on going out for IHOP.
She looked absolutely beautiful.  It’s hard to believe that my ornery, mouthy, sassy, opinionated, funny, crazy niece is growing up. She is becoming such a beautiful young woman who speaks her mind and stands up for what she believes in.  She remains true to herself and is fiercely independent.  I know that no matter what life brings her she will not only handle it but she will tackle it in order to ensure she remains happy.
Her dress was absolutely stunning and she looks so amazing.  I am blessed to be sharing such an important time in her life with her.  She and I have a great relationship and we understand each other so well. Truthfully, she is a lot like I was at that age, we handle things in the same manner and we we get wound up you might wanna watch out.

You always know when Katie is in the room.  She has one of those big personalities that is tough to ignore.  She can make you laugh when you feel like crying and she is quick with a hug and an “I love you” when things are difficult.


Thanks for always making me laugh, reminding me to live life to the fullest, sharing great rock band jam sessions, making me proud and drinking my caffeine free coke. LOL! I love you, my sweet niece!

Friday, April 27, 2012

Coke Freestyle

The new coke freestyle machine gives the user the choice of over 100 flavors. There are the standard choices of Coca Cola, Sprite or Dr Pepper, but there are also great new additions like peach Sprite, cherry I  Fanta or orange Coca Cola.
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Tonight I sampled raspberry Coca Cola and sparkling grape Dasani water. In addition to great flavor choices these machines are smart. Every day they send a report to the home office in Atlanta reporting what flavors were dispensed. It a great way for Coke to test new flavors and to determine what tickles our fancy.
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Thursday, April 26, 2012

When It Rains, It Pours :(

rain4Dealing with chronic illness and daily symptoms, is  challenging enough.  Yet, there are times when life plays cruel tricks on all of us.  The first time I came to this realization was when my diagnosis for a heart condition was being placed into my already overflowing medical chart.  I knew better than to ask, “What next?” Because there could ALWAYS be something more added to the stack. But for me the real slap in the face came from the people I trusted in my life. How could ‘they’ not understand. ‘They’ being my doctor, my friends, or my loved ones.
After a move from Oklahoma to Washington state, I found myself interviewing neurologists. This was my first encounter with a ‘new’ neurologist. My previous one had been with me for two years from the time I received my Chiari diagnosis and was a migraine specialist. During my first appointment with Dr. ‘New’  he explained to me that Chiari is very common, it couldn’t be the cause of my symptoms and that I never needed decompression surgery. I was not only dumbfounded, I was horrified that he could be so brazen as to speak those words to me. He wasn’t even looking at my pre-op MRIs or reports!!!! In a moment of profound clarity, I smiled nodded and left as quickly as I possibly could.  At that exact moment, I understood that it was a privilege to be my doctor.  That MY doctor would understand that treating me means being part of my health care team.  MY team, where I am captain.  My doctor must have some kick-ass degree from some highfalutin school, but he will be smart enough to recognize that I know my own body better than he does. I went back to my primary care doctor and asked him to send me for a second opinion to another neurologist that wasn’t a quack!
Every single Chiarian who has undergone decompression surgery will get asked some version rain2of the following question, “But you’re cured now, right?”  This is when I have to remind myself that just because my friend doesn’t understand my disease, doesn’t mean they don’t care.  Truthfully, they usually want me to live as healthy as possible and they don’t want to know that I will have difficult days ahead.  But unfortunately, healthy people have a difficult time grasping chronic illness.  I have now begun to explain that my condition is like a pissed off Tinker Bell.  She’s hard to understand, flits all over the place, sore for all the wrong reasons and leaves a trail of sparks just to let me know where she’s been.  Quite like Peter Pan, she just won’t leave me alone!  My full-time job is to keep her quiet and happy, which is no easy task. 
So I always try to remind myself that ignorance is bliss. That those that don’t know about Chiari are lucky, for this crazy disease has not had an impact upon their life.  Through prayer, meditation, and journaling, I have learned that it is my job to teach others that even though I have been given this strange, bizarre, maddening condition I can still teach others that “We Can Fly.” So I will gather up all of my Lost Boys and take them on a journey they will never forget. And I must not forget that part of my journey in life is to figure out exactly how high I can fly while still being grounded by condition, even when it’s raining.  So on the days that my condition has me grounded by symptoms and life is pouring frustrations down on me, I will find my bliss and dance in the rain. I’m sure it will piss that little pixie off.
rain6 copy

Sunday, April 22, 2012

Spring Fish Fry

We had a great family fish fry last Sunday.  I wouldn’t say it’s a tradition but it’s a fairly regular event that my parents really enjoy hosting.  They have a place at Lake Eufaula and are both avid fishermen.  When their supply of fish is running high, they will invite the family over and fry some up.  My Dad has perfected his method for frying the fish and Mom makes the fixins like cole slaw, hush puppies, french fries, etc.


In addition to great food, my parents really enjoy time with their kids, grandkids and now great-grandkids. In the picture on the right, my mom is standing behind my son, Brendon.  They are particularly sentimental about each other.

In this picture on the left, my mom is taking her youngest great-granddaughter, Madi, on a walk through their big backyard.  They have an amazing garden throughout their backyard.  I did a post devoted to the garden here.   It’s a great space for the little ones to run around in and for the big one to run around in as well.

Brookie and Madi brought their frisbees and their scooters so they could cruise in style. 

Miss Brookie had such a great time, laughing and giggling all day.  I love seeing her smile and hearing her laughter.  She is such a sweet child and her entire face lights up when she is happy. 

Several places around the yard Mom and Dad have statues of animals.  This deer in the picture with Madi actually came from my Grandmother’s house.  Madi found him very interesting.  If given half a chance she would have climb on his back and tried to ride him.


Papa moved his lawn tractor and trailer out of his workshop in order to make room for the fryer.  My niece, Katie, took advantage of the seat and parked her kiester in order to text. Every sixteen year olds FF14favorite hobby.

She is looking positively frightening in this picture. I am not quite sure what she is doing in this picture but obviously I snapped at exactly the WRONG second!! Lol


It would be nice of me to tell you that this was another instance of another unfortunate snap.  But sadly I report that this face was intentional. I can honestly say that my other niece, Brittany, is not Rita Hayworth.  She doesn’t give good face.

My favorite portion of the day was tossing sweet Madi up in the air. As you can see she clearly loved it.  Her little giggles are so adorable.


There were plenty of other photos from the day so I decided to make a collage. ENJOY!


Monday, April 16, 2012

It’s Pinteresting!

So I must admit that I haven’t been blogging as much as I like. First, I have been in a terrible funk.  I imagine that is a struggle with symptoms and a struggle with being home without my beloved Arnold.  I sleep better when I am with him, he is great at helping me with pain control and he just keeps my spirits up.  Second, I have become addicted to Pinterest! If you are looking for someone interesting to follow: I am totally addicted and need a pintervention!!
So I will say that I have found some great pins on their with amazing tutorials.  A few days ago, based on the pins that I found I made some great bracelets.
I am in love with the bright colors I chose for the bracelets. It only took a few hours to make all 5 of these and I am ready to make some more!! Here is the green yellow and pink bracelet pin.  Here is the blue and orange wrap bracelet pin.
These colors are perfect since summer will be here before we know it.  I love having a lot of variety with my jewelry and I hate to spend loads of money on something that can be so seasonal. I made all five of these for a fraction of what it would cost to buy one of the new boutique bracelets that are so popular now.
I have also started a special project, inspired by pinterest, for my dear darling.  He knows I have something up my sleeve but I have yet to tell him what it is.

Thursday, April 12, 2012

A Day at the Zoo

WARNING: Tons of pictures ahead!
I had plans to visit with my friends, Liz and Maggie, today.  But since the weather was so nice out they called to see if maybe we wanted to meet at the zoo instead of doing something inside. What a great idea! It was a perfect day to go to the zoo.
There are three things you need to know about Liz and Maggie.

They are a lesbian couple.


They are terribly romantic.


They make the BEST faces.

These are the reasons I love and adore them! I am truly blessed to call them my friends. We had a great day at the zoo.  Without further ado, here are the highlights.

Creepy crawly things

Petting Zoo Cuties
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Little Guys


Big Guys
Fun Moments


The End

Piglet: “How do you spell love?”
Pooh: “You don’t spell love, you feel it.”