The day after

I’m not going to lie… I cried a lot yesterday. As I stalked my best friend on my iPhone as she ran the race, watching her every meeting point, I cried. I jumped up and cheered as she crossed the finish line. I wish I was more stable. I wish I could be there for her. I wish, I wish, I wish. But as that old saying goes “wish in one hand, shit in the other, see which gets filled first”, wishing doesn’t change much.

Caroline understands, and she’s always been supportive. I just feel like an awful friend, not being there screaming at her & for her. Maybe next time I’ll bring a vuvuzela and tick off everyone.

So, the reality is, how many of you have friends that will run (literally) one mile for you?  I’ve got a best friend that will fly across oceans and run 26 miles for me.  Pretty much, I’ve got the best-est best friend ever.

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Today is a Good Day

Today is a good day. It’s the day that Caroline runs the New York Marathon. It’s the day that she’s been working for since January. It’s a day we thought was so far away when it was initially booked. Yet here we are, waiting for the race to officially start.

Today is a combination of happy and sad for me. I’m so happy that Caroline is in the US, running a marathon, doing what she does best, supporting her friends and running. Yet I’m sad because I can’t be there cheering her on. I suppose this is how she feels with me, I suppose this is why she’s running the marathon. She can’t be here to support me when I need it, so she’s supporting my organization. I only wish she had an organization that I could support like she is.  Still, I’m happy. I see Caroline on Tuesday, and we’ll get to do some touristy things in Roanoke (are there touristy things in Roanoke??). We’ll get to chat and be close. It’ll be like our friendship is supposed to be.

The auction has sold, we raised $172 for the Epilepsy Foundation, and our cause specifically. As soon as it actually posts it should bring us up quite a bit. The person who bought it is a coworker of mine, and despite our constant bickering, he’s a pretty decent guy.

So all in all, I’m a happy girl. Who can complain about having friends and family who are willing to go to the ends of the Earth for me. Seriously, My life… not so bad after all.

So, I really think that YOU, my dearest reader, should remember to donate. You can donate here, and show your support to not only me, but to my best friend who is willing to go to the ends of the Earth to support me.

Contest?

We obviously need help raising money. So, I’ve decided to run a competition amongst friends. The one who gets the most money for this fundraiser is the one who gets a $25 gift card for iTunes. If you get someone to donate (by begging/stealing/borrowing whatever) and they donate through the site, email me their name, and the amount. The person with the highest amount wins. I’ll keep the tallies here (and I’ll create a page with the tallies).

$25 isn’t much, but it’d be a good Christmas present… Just think about it!

The Virtual Gift Basket

So, if you follow me on Twitter, or Facebook, you may know about my idea for my big fundraiser. If not, I’m going to tell you now.

I’m putting together a “virtual” gift basket. I’m asking all of my favorite online vendors to donate a gift card so we can make a gift basket to auction off for the Epilepsy Foundation. I’ve asked Thinkgeek, Delight.com, Japanistic, Threadless, Netflix, ModCloth and actually loads more (It was a major project last night) to donate a gift certificate. That’s it. That’s all they have to do. Once they do that, I’ll put them together make a “gift basket” out of them and then auction them off.

No one has to put up with whatever I manage to get donated item wise (cause let’s be honest… sometimes you get ugly cats out of the deal.. Long story), and you can shop at some of the less well known online vendors (not to mention some of my favorite ones!)

Delight has pledged $50. They are one of my FAVORITE online businesses and they have something for nearly everyone.

Emily’s Edibles just donated 1 box of their yummy goodness with NO SHIPPING to the winner of the auction!!

Kroger just donated a $50 gift card! Kroger has locations (and different chains) around the country!

JapanisticDiscount + free shipping!

ModCloth $25 gift certificate!

Thinkgeek $150 gift certificate!!

So let’s see where we go from there.  I’ll update this blog often with any gift cards we get from different businesses. So you can see the status of the basket here! If you think of any business to add, please let me know. If you know someone who works there and I can get to them directly? Let me know that as well. Who needs help in this project?? Yeah… This girl.

The past few days

I’m still waiting on my meds to arrive. It really hasn’t been that long, but I’m actually fairly giddy about ordering drugs from Canada. From what I’ve read it’s more common than we’d think and only moderately bordering on the illegal side of things. The US *IS* currently doing FDA testing, but it’s still a few years off for this decades old drug to be approved here.

In the mean time, I’m tired. I’m bordering on cranky most days and really I would be happy to just sleep a few days running. All of the articles say fatigue is a mild side effect of Vimpat, but to be honest it really puts a hamper on my day-to-day life. I never want to be awake, and I could generally fall asleep just about anywhere. Oh golly that’s fun!

I still hope the NIH gets me in for the case study soon. I’d like to move along towards surgical intervention. I’m tired of seizures, and I’m tired of being tired. I’d love to go back to living a normal life.

I got a bike, mainly so I can get to and from places and have a bit less dependence on others. At least this way I can get to & from the co-op and get some vegetables as needed. No need to beg for car rides. That is definitely a major bonus. One issue is that the bike is a one speed with cruiser brakes. Funny how much that matters in a very hilly city.

Otherwise life is much the same. Caroline is working hard towards her goal to be fit & ready for the NYC Marathon in November. You can read about her training at her blog. If you’re interested in donating to make research a bit more possible, check out our donation site at the Epilepsy Foundation All money will go to research to help treatment options.

The Epilepsy Foundation

I don’t believe I’ve really written about how much the Epilepsy Foundation has helped me over the years. I feel it may be about time to do so.

Since I was a child, I’ve been relatively involved with the Epilepsy Foundation. That said, I’ve never gone to Congress speaking on behalf of the Foundation, I’ve never run around doing massive fundraisers, but I’ve done what I could. As a 17 year old, I spoke to the health classes about what epilepsy is, how it is managed, and more importantly how there is no cure. Those in classes below mine understood, and I think walked away knowing some of what we go through.

The Foundation, manages to help more people than you could ever imagine on a very limited budget. When you compare cancer funding vs epilepsy funding, the numbers are staggering. I’ve included a copy of a Newsweek article to give you an idea.

The statistics are stark and sobering— and for the uninitiated (which is to say most of us), startling. Epilepsy in America is as common as breast cancer, and takes as many lives. A mysterious and widely misunderstood affliction, epilepsy is a disorder in which the brain produces sudden bursts of electrical energy that can interfere with a person’s consciousness, movements or sensations. Up to 50,000 Americans die each year from seizures and related causes, including drownings and other accidents; one in 10 people will suffer a seizure in their lifetimes. By some estimates, the mortality rate for people with epilepsy is two to three times higher—and the risk of sudden death is 24 times greater—than that of the general population. There are 200,000 new cases each year, and a total of more than 3 million Americans are affected by it—more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined. Between 1 and 3 percent of the population will develop some form of epilepsy before age 75.

There is also a rise expected in the incidence of epilepsy among the veterans of the wars in Afghanistan and Iraq who have sustained traumatic head injuries. Yet public and private funding for research lag far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer’s and $280 for multiple sclerosis). It is time to remedy that gap, and to raise epilepsy to the front ranks of public and medical concern.

There is cause for hope. Science is unraveling more and more of the mysteries of the brain, and perhaps the source of the cataclysmic electrical storms of epilepsy will yield its secrets. Such, at least, is the aim of Sen. Edward M. Kennedy, who is considering a major bill to support enhanced research that will fund more work toward a cure, and of a resolute band of advocates that includes the man who sits nearest the Oval Office in the West Wing. White House senior adviser David Axelrod and his wife, Susan, are the parents of Lauren, a 27-year-old who began suffering seizures when she was 7 months old. Mrs. Axelrod, who contributes a piece in the following pages, is a founding board member and president of CURE—Citizens United for Research in Epilepsy. The group’s mission is clear from the acronym: to learn everything we can about epilepsy in search of a cure.

The reason Caroline chose to support the Epilepsy Foundation (and especially research) is because this isn’t just an American problem. Any funding for research brought in by the Epilepsy Foundation can help every person with epilepsy around the planet. Money makes the world go ’round, and without money the Epilepsy Foundation and other agencies have *no* chance of curing epilepsy. We, the ones who suffer from this disorder, will continue to live our lives around the numerous problems we face. We will suffer SUDEP, side effects, stigma associated with the disorder, and goodness knows what else.

Please consider giving. Please consider supporting this cause. Donate here, donate often, and show the world that you care

And that’s the end of my commercial broadcast. 🙂

The journey

I’m currently on a leg of my journey for treatment. I am being treated at Johns Hopkins I’m Baltimore, MD. The doctors are great, the hospital is wonderful, but the journey not so great.

The problem is: I can’t drive. so my options are either find someone who can drive me, or find someone who can drive me to the train station in Lynchburg, VA. One of my coworkers offered to drive me to the train station as she lives in Lynchburg. So currently I’m at her place and have been since last night. She’ll take me to the train station shortly and then I’ll be off on another 5+ hour journey to Baltimore BWI train station. Man, do I seriously miss driving.

It’s different in an area with lots of public transport. with multiple ways to get anywhere. It’s a bit more difficult here however. Everything is about planning, and not being afraid to ask for help sometimes. I’m not the type of person who likes help, however. I’m independent to the point of silliness really. So I guess this is a lesson in humility and dependence.

Right, off to the station I go!

The craziness!

This weekend has been a mad dash to the finish. Of what? Of nothing. It’s just been insanely not busy. I helped some friends out by pet sitting. 3 dogs (plus mine) and one cat who was easy to care for, but pretty much hates your existence. Unless you’re feeding him. Then he’s cool.

Staying at someone else’s house is always fun. I enjoy seeing how other people live and watch how they do things. I’m similar to an anthropologist in that regard. But it always seems a bit different to me. I have to remember to take my meds, at the same time if possible, every day. When out of your normal routine, it is not as easy as it would be at home. The normalcy of my life is difficult to maintain, which makes seizures more likely.

I will write more soon enough. But for now, I really need to sleep. I have a work day tomorrow, followed by sleeping in a co-worker’s guest room, followed by a crazy train journey to Baltimore, MD. Hurray for lots of things going on!

Donations from last night

We’re past 1% of our goal, nigh on 2%, I’m so excited for your help!

Caroline should have her blog up and running by tomorrow, which means if you want to see how her training is going, you should be able to in the next couple of days. Hurrah!

About to take my meds & go on the way to work. Exciting. I know 🙂

First Donation!

I’m so excited, I’m a bit of a dork really. We’ve gotten our first donation!

Thanks so much! Please take a look at our donations page. We need all the help we can get if we’re going to bring in the big bucks for the EF!

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