For now, it's just a dream

I would one day love to see a "Team in Training" but for Epilepsy. Obviously, it wouldn't be called "Team in Training." I think "Team in Training" is such a wonderful cause and way to raise money for Leukemia and Lymphoma. But, could you imagine the money that could be raised if there was a "Team in Training" type concept for Epilepsy? I think it would be awesome! It has actually become a dream of mine, I just do not know where to start. I am sure there are others who have the same vision.

But, for now, this is how I raise Epilepsy awareness at every run or triathlon I participate in. And, of course, I run in memory of Karissa. These pictures are from the last triathlon I did. It was interesting to see the reactions of other racers when they looked at my legs and arms that I had drawn with purple ribbons. On the back of my calf, I had written "For Karissa." A woman that was running behind me said "For Karissa! She hears you!" That brought tears to my face and brought me so much joy!

Thanksgiving Memories. 2005~2006~2007

Karissa's First Thanksgiving ~ 2005

We started a little tradition. Mark, Karissa and I would go up to the mountain house on Thanksgiving Eve, eat a yummy dinner with Mark's parents and then spend the night. It was always soooo much fun! This was Thanksgiving Eve, 2005.  Karissa was already decked-out in her Christmas jammies too!!

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Karissa's 2nd Thanksgiving ~ 2006

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Karissa's Last Thanksgiving ~ 2007

Thanksgiving ~ 2007

I love this picture! This was taken on Thanksgiving morning. We had gone into Lake Arrowhead to walk around. We had to buy Karissa an outfit because she was in desperate need of a change of clothes from a little accident. I forgot to bring an extra change of clothes with us...oops!!!

Another memory I have of that last Thanksgiving was that my mom-in-law made orange meringues for Karissa that were virtually calorie and carbohydrate-free. We hadn't officially started the ketogenic diet yet but were trying out some new things that were 'keto-friendly.'

"Would you like to make a donation for...

...Epilepsy research?" said the grocery checker. Unfortunately, I have never heard these words while checking out at the grocery store. But, I am hopeful that one day, I will. One day, our voices will be heard. Why not? With a disease that affects so many lives, a disease that kills and one which is in need of improved treatment options, more funds for research is pertinent.

I don't ever want it to seem as if I feel that Epilepsy is the only worthy cause out there. It isn't. It just so happens to be the one that I am passionate about for reasons that do not need explaining.  And I do donate to one other cause, MDA. The little girl that you see on the Jerry's Kids poster during the month of March just happens to be the daughter of a close friend of mine.

Epilepsy is big, just a big as breast cancer and in fact, it affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.

Now, off to write my letter to Oprah.

Roller coaster. Revisted.

I am taking a break from epilepsy awareness posts. Today is another horrible day. I hate the roller coaster that I am riding. The perpetual roller coaster that defines my life, for now anyways and probably forever. I wish the ride would come to stop, at the top of course. But the reality is that there will always be good and bad days, ups and downs.

I am not sure what triggered the whirlwind of intense emotions today. Probably a number of things...the holidays, the hope of things to come, or not, the dark cloud of depression that I struggle with on a daily basis, or maybe the fact that I feel like the worst wife in the entire world, especially today.

I keep listening to "Fix You" by Coldplay. I haven't listened to it since Karissa died because I knew that it would bring me to tears. And not just a few tears but the kind of sobbing that makes your eyes look swollen shut, like you just suffered some strange allergic reaction. I find lots of different, even eccentric meanings in songs. The way I interpret lyrics is sometimes quite abstract. This one is pretty straightforward.
http://www.youtube.com/watch?v=jBEYyHGbwto

Medications and Cross Your Fingers

Epilepsy. The Facts.

* Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.

* In two-thirds of patients diagnosed with epilepsy, the cause is unknown.

* Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.

* In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.

* The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal.

* It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.

* The mortality rate among people with epilepsy is two to three times higher than the general population and the risk of sudden death is twenty-four times greater.

* Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, mental retardation, autism, Alzheimer’s disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes.

* There is a strong association between epilepsy and depression: more than one of every three persons with epilepsy will also be affected by depression, and people with a history of depression have a higher risk of developing epilepsy.

* Historically, epilepsy research has been under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.

* For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.

Source: http://cureepilepsy.org

Candles & ribbons & things

I picked these up at Trader Joe's last night. I just couldn't resist the "Ladybug Bouquet."

This is Karissa's room in the evening, all lit up with candles in memory of Karissa and for epilepsy awareness. This is the first year I have done this.

Lavender ribbons for the entire month of November for epilepsy awareness.