Sunday, November 29, 2009

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!










Wednesday, November 25, 2009

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!!



_____________________

Karissa's 2nd Thanksgiving ~ 2006







___________________

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.'

Monday, November 23, 2009

"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.

Saturday, November 21, 2009

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

Wednesday, November 11, 2009

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

Monday, November 9, 2009

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.

Sunday, November 8, 2009

Someone recently told me...

...that I shouldn't be involved in the whole epilepsy awareness thing. That I need to do something that does not involve Karissa. That I need to move on and get involved in something that is totally unrelated to Karissa and epilepsy. I was quite offended! I didn't even try to explain my intentions or why getting involved in epilepsy awareness and education is quickly becoming a passion for me.

I want to do much, much more than just write about epilepsy on my blog or have family and friends wear a purple ribbon or bracelet to show their support. I want to go out and do something to promote awareness. I want to educate the public about a disease that takes JUST AS MANY LIVES as breast cancer.  I want to be proactive. I want to speak about it, and yes, I love public speaking! I want to help raise funds to help find a cure and better treatment options. I want to encourage others, mostly parents, to fight for what their child needs, and to never settle for what others think is ok for their child.

So, for me, this 'whole epilepsy awareness thing' is not just about Karissa. While everything that I do or will do in the future will be in memory of Karissa, it goes way beyond that. I hope that no one ever has to go through what Mark and I have been through. Sadly though, more people will die from epilepsy.  And, my heart aches to know that another mom and dad will lose a child to epilepsy.

That is why I am trying to be more involved in this cause. I want to contribute to finding a cure so that maybe one day, we can say that 49,000 deaths were lost to the disease instead of 50,000. I want to educate people about the seriousness of this disease. I want children to receive services that are needed to help them thrive and have a better quality of life. I don't want another parent to ever be told that their child is being denied services because they only have epilepsy (see post "Services Denied. Epilepsy Not a Qualifying Condition). It begins with education and awareness. That is why this is so important to me. I know Karissa would be very proud!

Wednesday, November 4, 2009

SERVICES DENIED. EPILEPSY NOT A QUALIFYING CONDITION.

Up to the age of 3, Karissa was part of the Early Start Program, a program which provides various services to children with special needs. Through this program, Karissa was able to receive occupational therapy twice a week, physical therapy once a week and speech therapy. She was also a part of a once-a-week mommy and me class as well as getting a home visit from a special ed teacher every week.

The Early Start Program is an amazing program, especially for those that may not have insurance or cannot pay for services. We have wonderful insurance that does provide these services, however, they were not able to meet Karissa's needs for weekly, or even twice weekly services, which was one the reasons for enrolling Karissa in the Early Start Program.

As Karissa's third birthday was rapidly approaching, I was starting to become frantic in trying to figure out what we were going to do. Once a child turns 3, all services provided by Early Start are stopped and the child is then transitioned out of the Early Start Program and into the school district. While we were still able to get OT and PT through our insurance, Karissa was only able to be seen once a month, if we were lucky.

The school district only provided speech therapy in a group, which would have been completely useless for Karissa. They also wouldn't provide OT for reasons that are still completely unknown to me and wouldn't provide PT until a child turns 5. HUH? Are you kidding me? I was ready to go to battle with the school district once Karissa started back in the fall. Obviously, that never happened. Lucky for them because they would have had one angry parent on their hands. Actually, they already did, but I will save that for another post.

So, our only other option became getting services through CCS, California Children's Services. We submitted the paperwork and had the neurologist submit what was needed. The outcome?: SERVICES DENIED. EPILEPSY NOT A QUALIFYING CONDITION. Um, excuse me?

I got on the phone with the CCS people and they were so indifferent. I told them what services Karissa needed and that it had been well-documented that the services she was previously getting were helping her in her development. They had the documentation. They were clearly aware that the services she had been provided were helping her in her development. I remember the lady saying "Is your daughter autistic? Does she have Down's Syndrome? No? Ok, well, we can't provide your daughter with services then. Epilepsy is not enough of a diagnosis." At that point I was tempted to ask the MD to lie for us so Karissa could continue to receive services. 

What? So my child has to be autistic? Or have down's? Wait, are you even remotely aware that there are children I know with autism and down's that are functioning at a MUCH HIGHER LEVEL than Karissa? That they will continue to be provided with services for as long as needed (or not needed)? I know I probably shouldn't say it and will probably make some of my readers angry, but I really have a lot of animosity in regards to autism. I am trying really hard to keep my filter in check here, so I will stop with that.

Oh, and if you were wondering, Karissa's skills did indeed decline once services were stopped. Towards the last month of her life, we noticed that she wasn't able to walk as well and that her balance was off. It was heart-breaking to see.

Regardless of anything I have just said, I feel that part of the problem is a lack of education and awareness regarding a disease that can be debilitating, and in some cases, lead to death. It is hard to go to battle with people who happen to think that epilepsy is not a big deal. Or, with those that think that people with epilepsy are normal except that they may have a seizure from time-to-time. But can you really blame them? Sadly, they just don't know any better.

There is so much that needs to be done in regards to not only education and awareness, but research and finding new treatments, and even a cure. The disease's toll has been overlooked, and its research underfunded, far too long. And, allowing those with epilepsy to receive services that may help them have a better quality of life, while important, is just the tip of the iceberg.

Monday, November 2, 2009

"WHAT?! You can die from epilepsy?"

That is the response I get from almost everyone. People are shocked to learn that one can die from epilepsy. I myself was even ignorant. I was always scared that Karissa could die from a seizure but I never thought it would happen. In all honesty, I didn't think one could actually die from a seizure. Shortly after Karissa's death, I remember saying to Mark, "you aren't supposed to die from seizures." It wasn't until we lost Karissa from epilepsy, that I became aware of something called Sudden Unexplained Death in Epilepsy. Sadly, seizures can be fatal, especially the rare status epilepticus, a continuous convulsion lasting longer than 10 minutes. Karissa died in her sleep, the victim of an epileptic seizure. Karissa, like many others, suffered from what is called Sudden Unexplained Death in Epilepsy (SUDEP).
   ---------------------------------------------------------------------------
Why something needs to be done NOW!

Every year, it is estimated that up to 50,000 deaths occur in the United States from seizure-related causes including accidental deaths and Sudden Unexplained Death from Epilepsy (SUDEP). 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. There is an urgent need for more research to determine underlying mechanisms and causes of epilepsy (seizure disorders) and SUDEP so that the risk may be minimized and eventually eliminated. Source: www.cureepilepsy.org



Sunday, November 1, 2009

Excuse me while I rant and rave for a while...

November is epilepsy awareness month!! So, for the entire month, my blog will be devoted to epilepsy awareness and education. One of the reasons that motivated me to start this blog was to raise awareness of the most UNDER-FUNDED and UNDER-RECOGNIZED disease that effects millions across the globe. I am doing this not only in honor and memory of Karissa, but for all others who have lost a life to epilepsy or who are suffering from the disease. I think you will be shocked to learn some of the statistics. I know I sure was. The universal color for epilepsy is lavender/purple.