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!

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Management

When you have a disease, a disorder, or really any malady, it’s all about management. Everything has to be managed. Your life goes from as care free as an adult human life can be, to the exact opposite.

As I was counting out pills this morning, trying to figure out exactly when I needed to fork out the money and call Canada again to set up my next order, I realized my life was managed down to the day. Pills had to be taken at certain times, I had to be in bed by 11 or my body clock would go crazy, everything was managed. I was like a fine tuned business without the joy of the income.

It’s nearing the time of year I love, and hate. This time of year is the time of long weekends, friends, parties, wine, champagne, and a multitude of other sins. Sleep schedules go wonky, diets go out the window… This is the time we forgive ourselves for not being managed. We forgive ourselves for letting our hair down and running wild and free. I used to love this time of year. Staying up until I saw the first dawn of the New Year used to be one of my favorite things. (Cover your eyes mom) drinking with my friends and just enjoying life, being a twenty-something.

To an extent, that’s no more. Obviously alcohol isn’t needed to make a party fun. You don’t need alcohol to be in good spirits, but it’s part of the season. Upset sleep schedules and letting emotions run whichever way you want and feel like… That’s something I can’t do anymore, not really. Alcohol is a definite no-no in my world. Between the benzos and the other medications I’m on, alcohol could be a death sentence. Upset sleep schedules increases my risk of seizures… Emotions running up and down increase all of those lovely stress hormones that can increase the likelihood of seizures… Basically the holidays can be a shark infested ocean for those of us that have to be managed.

Holidays are still my favorite time. I love family, I love friends, I love presents and food and pretty much everything the upcoming months stand for (including costumes!!) but they’re also some of the hardest times. Every time you go against the managed plan, it’s like going the wrong way down a one way street. You just pray you’re lucky and it isn’t this time.

I’ll never forget the first time I realized this. It wasn’t a holiday, but I was out with my friends in the town I grew up in. It was late, and we were out to see a punk band that has long since broken up and gone who knows where with their lives. I had been up late several nights running, I had a lot of caffeine in my system and the lights and the sound were bringing on simple partials like crazy. My friend Jim went outside with me and sat until they slowed down. It was cold, his jacket was wrapped around me. The sky was pitch black and people were milling around outside for who knows what reason. It was then I realized regardless of what I wanted to think and believe I’d never be like everyone else in the venue. No matter how hard I tried I’d be on the outside.  When I finally stabilized to the point of what a 16/17 year old would feel as good to go, the show was over. Everyone came out of the venue and I wasn’t on the outside anymore.

People call me a control freak. Some say I don’t go out enough, I need to do more things and stay out later. Every time I think of that, I think of that one time I spent my night outside a venue trying my best not to freak out with Jim right there. I never want to feel like I’m on the outside, so I manage my life around it. I keep myself safe and secure so when I do go out, I’m able to be on the inside. To listen to the music, to open presents, to be a part of something other than this managed place I live in.

Gelastic Seizures

At one point during my stay for video EEG monitoring (AKA 2 weeks in hell), my doctors had mentioned something about a different kind of seizure that I could possibly have… At the time, I was sleep deprived and half insane from being chained to a wall and having to pee with a nurse outside the door (you think I’m kidding. I’m not). I honestly thought they said something like crystal meth seizures and well, Google brought me nothing. I had searched and searched and searched and found… Nill with crystalaticseizures, crystal meth seizures. Yeah, there’s nothing.

Until recently I had somewhat forgotten about the crystal meth seizures because I thought it could have been a day dream, or a dream induced by the hottest doctor since Grey’s Anatomy. I had come across (during my OMG so bored Google searches) Gelastic Seizures. Then, it was mentioned to me by my doctor. Kind of in passing in a “what do you think?” sort of way.

What are Gelastic seizures? They have nothing to do with Jello, Jelly, Jam, or pretty much anything interesting. According to the NIH article here

Gelastic seizures are epileptic events characterized by bouts of laughter. Laughter-like vocalization is usually combined with facial contraction in the form of a smile. Autonomic features such as flushing, tachycardia, and altered respiration are widely recognized

Funny story, that sounds a lot like me. I laugh when I shouldn’t, I cry for no reason (especially after seizures/during seizures/before seizures). It’d be interesting if this was actually part of what’s wrong with me, but at the same time… Not good at all. There’s no treatment. Meds, which I’m already on, and thats about it. Surgery isn’t really an option as the part of the brain they originate from isn’t really operable. So we’ll see. It’s rare (especially in women), and it’s highly unlikely. But education never hurt anyone.

Government and Epilepsy

There was a time I was a through & through Libertarian (with that capital L). I felt that less government is more government, and our nations was founded on the idea that we should not have our Federal Government in our day to day lives. In a lot of ways, I’m still right there. I want to believe that we would do well without unemployment, Medicaid, Food Stamps… That charity could fill the place of our government.

I don’t know that I truly believe this anymore. My last job (a government job), I had an uphill battle trying to make people understand that I wasn’t mentally insane, and that I DID really need help. Between the ADA, EEOC and threat of lawyers I finally got them to give me some much needed help. Then, less than 6mos over it started all over without cause. They didn’t say it was a review, they told me should I not agree with no help from them they would make me a receptionist.

I’m a college educated woman, with lots of experience as a social servant. I want to help people. I want to make their lives better. Unfortunately, without the government stepping in with acts, and laws I wouldn’t be able to do that through any job. With the job market the way it is, should I not be protected under the ADA & EEOC, I would not be hired, or fired as a person who “couldn’t do their job as described”. Think about it, if you owned a business and you had two choices, both equal in every every way except for one cannot a) drive b) function if med changes happen c) be mentally/physically present constantly due to seizures. Which one would YOU keep/hire? It sure as heck wouldn’t be seizure girl.

So without the ADA & EEOC I wouldn’t be able to work. With less government I wouldn’t have SSA Disability to turn to, and then where would I be? I’d be living with my parents with no way to help support myself. I would be a burden. My condition is heart breaking enough, why would I want to burden them further?

Not to mention without the hope of the NIH case study, surgery would be off the table. Their research is one of the main driving forces of Epilepsy research. Can we really say, given the statistics of giving vs people with the disorder we’d be SOL in a bad way. The NIH is a life saver when it comes to those of us with Epilepsy.

Some say I can turn to charity. The fact is charitable giving is hardest hit when the economy is down. It’s like pulling teeth to get people to donate even the smallest of things. I’m lucky to have some friends & readers that would do anything to help me raise money, but without them I’d be nothing. Again, it goes back to being a burden. I *CAN* work. I do work, everyday, but instead I would likely be sent to the back of the line, begging for work, and meds. What a bad combination.

Government and politics will always play a huge role in my life. I love to see how our world can twist and turn based on the momentum of humans. We really can change the world should we just try. So as election day comes up (in Epilepsy Awareness month no less), really consider what government does, and what you want it to do. I’m learning over time what I want my government to do for me, but what about you?

Tea Leaves

This morning as I was doing my early morning surfing and preparing myself for the day, I took a drink of my tea. I’m drinking that green herbal stuff that doesn’t come in little baggies so you get stuck having to actually… see the tea leaves. As I looked in the bottom of my cup I saw the few leaves that escaped as they swirled around.

If I were a different person, I may look at those tea leaves and try to figure out what they mean. Maybe they mean I’m going to have a happy, healthy life. Maybe they mean my true love is about to come. Or maybe they just mean I need a better tea thing-a-majiggy.

The fact is, my future is uncertain. I may remain forever as I am now. I may always have seizures waking me up in the morning, bothering me at work, making it so independence becomes harder and harder. OR I may become seizure free. Maybe we’ll find the perfect combination of drugs that “cures” me. MAYBE just maybe I’ll be able to have a temporal lobectomy and stop having seizures that way. Maybe I’ll cave and get a VNS (for me it’s my worst nightmare, for others it’s been a dream come true).

I just want some certainty in my life. I’d like to know that tomorrow I won’t have any seizures. Tomorrow I’ll be able to get in my car and take myself to the store and get a big thing of toilet paper without having to worry how I’m going to get it on my bike, or WORSE take it on the bus. I just want some certainty that tomorrow will be easier.

The tea leaves are now down the sink, never to be seen again. That’s probably a good thing. No good news ever comes from tea leaves anyway.

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.

Conversations with Jeff Vanke

Another email conversation I had over the questionnaire was with Jeff Vanke (another VA politician). His conversation with me is as follows:

Dear Meghan,

Thank you for writing. I can’t tell you how refreshing it is to receive one of these candidate surveys from someone who actually lives in our District.

In answer to all three questions at the following URL, my answer is Yes. I support ADA. I also want to endorse what several ADA advocates said at a 20th-anniversary luncheon in Harrisonburg a couple of weeks ago, which is that ADA accommodation requirements should be reasonable.
http://sparklightadvocacy.files.wordpress.com/2010/10/efquestionnaire.pdf

Sincerely,
Jeff V.

Dear Jeff,

Wow! I have to say this is the fastest I’ve *EVER* received a response from someone in regards to one of the advocacy letters I’ve (e)mailed out. In general a response comes in 2-3 months. Thank you for taking the time to respond so quickly.

I know, from personal experience, that the ADA and EEOC is not strictly followed within our commonwealth. They seem to think that seizures aren’t as big of an issue as some other disabilities that are more prevalent within the US. Since moving to Virginia I have devoted my life and work to helping our citizens, and some agencies have forgotten that helping people doesn’t necessarily stop with the client at hand.

On a more direct note, how far would you fight for increased funding to the NIH, CDC and HRSA? I know, for example, part of my treatment depends entirely on the NIH’s funding and what they have available.

Sorry for writing such direct questions at this time of night. I was honestly surprised to get an answer this late, and wanted to make sure I responded before work tomorrow.

Thank you again,

Meghan

Dear Meghan,

I can’t promise anything right now on NIH, CDC, HRSA, until I know much more detail about existing programs and the other things that might be funded, within those agencies and beyond them, including beyond health care. So I’m afraid I have to disappoint by saying that while I think ongoing expansion of their funding is desirable, I can’t say how hard I would fight for wha,t until I am better informed than I currently am.

Jeff

Dear Jeff,

That’s fine. I’d rather someone say I don’t know than talk circles. I’ve learned a lot more than I ever wished to know due to my condition as it worsened. The NIH is a wonderful agency within the federal government which provides research money, that especially in disorders like Epilepsy is greatly needed. Those dollars go to direct research within the agency, case studies to provide things like PET scans and MRI scans, grants to research facilities like Johns Hopkins and UVa. It is an amazing organization that I would hate to see lose funding due to petty politics.

If there are every any questions I can answer for you, please feel free to ask. We’re downtown, so I’d be happy to answer any questions I can.

I hope you have a wonderful evening, and thank you again for responding so quickly.

-Meghan

Conversations with Stuart Bain

Last night, by the request of the Epilepsy Foundation, I sent a questionnaire to our locals up for election. Only 2 have responded thus far, and to be honest their answers have been interesting. I thought I would share them with you. The questions are as follows:

1)Will you support increased funding for federal research and programs at NIH, CDC, and HRSA

2)Will you support the enforcement of the Americans with Disabilities Act in schools and the workplace?

3)Should patients be notified when their prescription medication is switched to a different brand at the pharmacy counter?

The conversation between Stuart Bain and myself is as follows:

Meghan,

Thank you for sending me the questionnaire. Here are my answers:

1. No. The private sector produces much better results and faster solutions and cures with much less funding than their government counterparts.

2. For schools and government workplaces, yes. For privately owned businesses, that is up to the business owner and not the government.

3. Yes. It is essential for accountability and fraud prevention.

Best regards,

— Stuart Bain

Stuart Bain,

Thank you for your quick response. I’m really glad that we live in a country where we can respectively agree to disagree.

1) Private business has managed to make it where I am not able to take medications that are actually effective for my disorder due to the fact that there is not enough money in Epilepsy research (for example Frisium a drug that is approved in nearly every other country in the world is not approved here because there is no money for epilepsy research despite the number of people with the disorder). The only way I am able to get treatment (despite my good insurance – I’m a state employee) is through the assistance of the NIH.

2) Without the ADA I would have been fired from numerous jobs due to the fact that I have seizures. This would have put me into the SSA/SSI cycle so quickly and that would in fact eat up more government resources. Or, because of the fact that Title 2 & Title 16 claims are based off of how a job is performed in the national economy I would literally be living on the streets.

I appreciate and value your opinion. Should you like anymore information about how disability is determined, or how the NIH for example helps research and treatment of people who need it I would be glad to give you as much information as I can.

Thank you, so much, for your prompt response. It means the world to me.

-Meghan

Meghan,

Yes, I appreciate that we can agree to disagree; however, I don’t think we disagree like you think we do. Look at it this way:

As for question 1, keep in mind that it is the government regulators, not the private business, keeping Frisium off the market. If it weren’t for the fact that the government was forcing epilepsy patients to do without in this country, you would be able to procure Frisium and might not even need the assistance of the NIH. This is exactly the sort of conundrum I was referring to.

As for question 2: As a small business person who has helped hire and worked with individuals who have severe medical problems (borderline disabled), I assure you there are business owners who recognize the value of employing hard workers regardless of whether or not their disabilities occasionally interfere with production. I would like to think that if your boss at a previous job wanted to fire you simply because of a medical condition over which you have no control (provided it didn’t endanger the safety of others), it would have been their loss, not yours. It may have even been a good case for a wrongful termination civil suit provided you informed the employer of the condition prior.

In addition, I have two children with disabilities. Regardless, my wife and I are raising them to believe that they are capable of accomplishing whatever they set their minds to in spite of their disorders.

I am blessed with the technology to be able to reply to individuals promptly, and I thank you for taking the time to reach out to me.

Best regards,

Stuart Bain

I don’t actually procure Frisium through the NIH, I get it from Canada. My insurance doesn’t cover it, and I spend $100/month on it. It’s definitely not cheap. Otherwise, yes it’s government regulators keeping it off the market. That, and no money for the research necessary (As I said on Twitter). It’s a cycle. In most countries Frisium is a 3rd defense drug. I’ve literally tried every drug on the market, and none work. My doctor is working with me to get drugs from Canada to hold off seizures until they can get me in for surgery. The reason I’m working with the NIH isn’t for any other reason than because my insurance won’t pay for tests necessary to get to the point of surgery. I have 2-3 seizures per day I’m on 3 medications regularly. Surgery is my only option, at this point. My insurance company believes that the PET scan & type of MRI necessary aren’t covered unless it’s “proven” I need them. The only way it’ll be “proven” is if I have the surgery. The NIH is going to take me as a case study to help pay for everything so I don’t have to try to come up with over $8000 of testing out of pocket.

And yes, there ARE businesses that recognize the good people with disabilities can do. But there are more that do not. You can’t tell me if you had employee 1) with no major medical issues, no frequent trips to Johns Hopkins (which take 3 days because I have to use public transportation) 2) can drive 3) doesn’t have seizures in public, but everything else were the same that you wouldn’t hire them over the disabled person. It doesn’t make good business sense.

I’m all for less government. When in Kentucky, Idaho, and Texas I worked with the Libertarian party. It’s just the more I live, and the worse I get I realized that without some government agencies I’d be living on the streets.

Thank you, for your hard work and interest into my situation.
-Meghan

As I need to get to work, I’ll post my blog tonight regarding my conversation with Jeff Vanke.

Seizures and Stress

One of the biggest causes of my seizures: Stress. Emotional stress, physical stress, work stress, stress of any kind causes me to have seizures. The problem with stress is it isn’t a variable you can avoid. Strobe lights cause seizures? Yeah, don’t go to that rave. Problem solved. Caffeine? Don’t drink coffee. The physical variables are easy to avoid. It’s the emotional ones that cause problems.

Yesterday, for whatever reason, I was listening to a CD I had in 2003 ish. I was feeling nostalgic for the “old” music of my college years. 2003  was a hard year for me though. It was the year one of my best friends died, it was the year that the round of seizures prior to this one started. It was just… Not a good time for me. A song came on that reminded me of my friend’s death and there we went. I started crying and feeling more emotionally unstable than I have in a long time (Thank you Keppra. I love your mood swings. Can’t wait till you’re out of my life). I missed him so much I couldn’t help but sob. It felt like the first day after his loss all over again.

And that’s when things got a bit worse. I had a seizure right after I started crying (Came back to 1 song later), so I decided to turn off the music & watch TV. Stupid Geiko Gecko (those who know him will know the relation). Needless to say, it was an emotionally stressful day.

I can no longer take Ativan because of the amount of benzodiazepines I have in my system, so my security blanket is now gone. Instead I just get to sit and wait for the seizures to hit. That’s always a blast.  Needless to say I had quite a few seizures yesterday, and for as tired as I am today I think last night as well.

I’m going to make today as low stress as possible (if that’s even an option) and see how it goes.

Annnd… Here comes the commercial.

Should you like to help people like me… People who have no options but to have seizure after seizure, please give. Please think about how hard it would be to take all of the fun stuff out of your life just to live seizure free and think about how you could help them. I’m not going to say $1 could save a life, but it could help. I’m not asking for donations of $2,000 at a time… Just however much you can give. The cure may not be around while I’m alive, but it could help someone else and that’s what matters. You can donate here. You can read more about Caroline’s training for the New York Marathon in support of Epilepsy awareness here

Thanks for your time.

A Good Day?

I’m wondering if today will be a good day. I know that’s silly but it’s something I have to worry about. Since adding Clobazam to my regimen I’ve been tired. I sleep fitfully and it’s not a pretty thing. NOW, now I get to add another dose of Clobazam (in the morning) take away 1/2 of my Keppra intake (HURRAH!) and keep my Vimpat levels the same. Today, I’ll be either a walking zombie, asleep, or possibly perfectly OK. I’m not counting on that last one though.

I do feel sorry for my coworkers, however. When things get like this, I stop making sense and my work is so much harder to keep up with. My train of thought is never right where it’s supposed to be, and I take more notes than I ought to. It’s not to say I don’t accomplish my goals… It’s just I should be able to accomplish more than that.

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