The National Walk for Epilepsy: my pre-existing condition

March 24, 2012 By: dcgrrl Category: Uncategorized

National Walk for EpilepsyThe National Walk for Epilepsy is next week , and it’s a chance for me to walk with other people, other families, that have been effected by seizures. I am lucky that my seizures can be controlled by medication, but not everyone is so lucky.

There is more research to be done, and more education needs to be done.

  • It’s important to understand that some kids have to live with seizures, but they still need to, and CAN go to school.
  • It’s important to teach first responders how to react to a seizure.
  • It’s important to be sure that health insurance covers seizure medication.
  • Medication can be made more predictable, effective and less toxic.
  • And the medical community still needs to learn more about why seizures happen and what damage they do to our brains and our bodies.

So, my husband and I will be walking bright and early on a Saturday morning in March, on the National Mall.

I know that children and animals are much more compelling causes than your friend DC Grrl who seems just fine; So, here are some stories about kids and animals. These are the families we’re really walking for:

Andrew, in Fairfax: “Dog that helps epileptic boy will get 2-week tryout at school

And a great book BY Evan, who wrote this book to help fund his own seizure dog, which I now have in my library. It is AWESOME:
My Seizure Dog

Coming soon: the Concert for Epilepsy this fall, so be on the lookout for more information about that. This guy, possibly the most excellent brother in the world, has been working tirelessly on this project for years, in honor of his little sister who has epilepsy, and this year’s concert should be an amazing event!

Interested in learning more? Here are some places to get some information: Epilepsy Foundation and TalkAboutIt

 

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My resolutions for 2011

December 29, 2010 By: dcgrrl Category: 2011, resolution, resolutions

I’ve gotten a lot of back up from my online buddies, both bloggers and on Twitter, so I’m gonna keep sharing my goals with you folks. Feel free to do the same right back at me.

  1. Less naysaying. Don’t you hate naysayers? I do. So I’m going to try and stop myself when I hear “Nay” about to emerge, and think twice. Why not say “Yay?” Or even “Maybe?”
  2. More reading. I’ve got a lot of books lined up, many thanks to Santa, etcetera. So I have some reading to do. And it may be quite relaxing.
  3. More gym time. Also relaxing, and it could easily go along with the reading, see how that works?
  4. Clean up some clutter. I’ve got a number of boxes in my basement that haven’t been touched since I moved in, and that tells me there is some very useless crap in there. So do regular posts from the Unclutterer. Time to make some room!
  5. Pay off some credit cards. I’ve been working on these, and a couple are due to disappear this year. I can’t wait! Thanks to Budgets Are Sexy for the encouragement.
  6. More blogging. Friends of mine — My Scenic Byway and Thinking Clearly — that have just started are blazing through blog posts, and I am straggling with a post every other week or so. Shame on me. Time to get back on that horse!

Have a safe and healthy new year in 2011!

Also read: Making resolutions stick

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Crossing the finish line!

March 27, 2010 By: dcgrrl Category: 2010, DC, epilepsy, walk

After months of fundraising, today I crossed the finish line at the National Walk for Epilepsy with my biggest supporter, my husband. It felt great to have worked for this cause that affects me every day, and to be part of this effort to raise awareness for this condition.

There were so many thousands of people there this morning, families and friends supporting each other. It was empowering. There were also NFL athletes and local and national celebrities there to help draw attention to our cause. Of course that means we grabbed some autographs and pictures, you know me!

The money we raised will go to fight stigma, raise awareness and find a cure for epilepsy. My hope is that this Walk will help bring more families closer to seizure-free lives, and help people better understand what epilepsy is all about. This year’s theme is Talk About It. There is a great new website at TalkAboutIt.org to explain epilepsy to the world. I hope you’ll check it out!

ALSO SEE: Why I’m walking for epilepsy

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Why I’m walking for epilepsy

January 22, 2010 By: dcgrrl Category: 2010, DC, epilepsy, walk

On Saturday, March 27, 2010, I will be participating in the National Walk for Epilepsy on the National Mall in Washington, DC.

Why? Because I was diagnosed with epileptic seizures at the age of 16. I’m lucky enough to be able to control my seizures (which generally occur at night) with daily medication, but not all people with epilepsy are so fortunate.

I have a friend suffering seizures caused as a result of a brain tumor, who is still working to find the right medication for her. I have another friend who has seizures that were triggered by her second pregnancy. Taking medication at all during pregnancy is scary, but not as dangerous as a seizure could be.

Epilepsy — which refers to a number of different seizure disorders — affects lots of people in different ways, and seizure management is a tricky business.

For me, epilepsy means daily medication which I’ve taken since I was first diagnosed (over 20 years ago). The worst thing I have suffered from a seizure is biting my tongue in my sleep. (Although that can be a pretty severe bite.) Learning I would have to take medicine to be ‘normal’ for the rest of my life was a tough thing for a teenager to get used to. But it’s not so bad.

I have been lucky to have pretty great health care, constant coverage via my parents or corporate plans, and access to top-of-the-line research hospitals to be sure I’m getting the right medicine for me. Not everyone is so fortunate. But I like to pay it forward. I contribute to websites that give me free services. And I want to help the research that has helped me. So…

The money I’m helping to raise through the Walk will go towards research for better treatments, to raise awareness and maybe even to find a cure for epilepsy. My hope is that this walk will help bring other families closer to seizure-free daily lives.

Please donate whatever you are able. I know there are many worthy causes asking for donations now, but this one affects someone you know — and maybe some other folks that haven’t had the guts to tell you yet.

Here’s my fundraising page:

Heather’s National Walk for Epilepsy PageThank you so much for your support and friendship.

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It is hereby resolved

January 04, 2010 By: dcgrrl Category: 2009, 2010, environment, green, health, holiday, home, museum, music, reduce, resolution, resolutions, travel

cocktailsIt’s the beginning of 2010, and I’ve gotta set my goals! Last year I gave up buying plastic water bottles, and it worked! I recommend it to everyone. We saved lots of money, and got attached to our water bottles and filtering system. It works just fine, and now we’ve got more room in the refrigerator for BEER! ☺

So here are the resolutions:

  • More writing: journal every day, on paper. Some stuff didn’t get recorded last year because I didn’t want to share it with the world. So I need to organize my thoughts on paper first.
  • More exercise: get in that gym, at least twice a week.
  • More travel: including within DC. There are some great exhibits and museums that I need to see. Concerts and shows, too!
  • Home improvement: continue to green my lifestyle, purge the junk and organize the good stuff.
  • Taco night on Mondays: to simplify menu planning and because we like tacos. ☺

Wish me luck, and I wish you luck with your resolutions… if you’ve made them? If you haven’t yet, I hereby give you til the end of January to come up with some. We’ve got 11 months to go, folks. That’s a lot of time to pick something to improve on or have fun with.

Most importantly,

★  ♪ ♫   Happy New Year! ♪ ♫ ♪ ★

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The health industry needs fixing

August 16, 2009 By: dcgrrl Category: health, New York Times, Obama

nurseWhen I hear people worried that the Government is going to get between them and their doctor, I suggest they take a good look at the decisions being made about their health care dollars now.

My insurance tells me which doctors and hospitals I can go to, which drugs I can order, which orthopedic apparatus I can use should I sprain or break something. If I wanted psychological counseling, my insurance tells me how much of that is allowable. Seriously. Not my doctor, my therapist or the government. In my case, it’s Aetna that determines what is best for my well-being.

My insurance insists that I pay EXTRA for the birth control medicine that DOESN’T make me break out, because it’s BRAND NAME MEDICINE. That’s Aetna getting between me and my doctor. Why should it cost more for me to use the medicine that works better?

My husband decided to work for himself a couple of years ago. His former company offered him a COBRA plan. At $600+ per month! How is that reasonable? In the 90s I took advantage of the COBRA deal at less than $100 per month, and it was very helpful between jobs. But at over $600 per month, he was better off paying full price for prescriptions and hoping he didn’t break any bones until we came up with another solution.

I suggest that some government regulation of the health care industry is needed.

  1. Prescription coverage should be simplified. Why can’t all drugs have one price? Why are there lists A and B? I remember my grandmother had a rainbow of pills to take, and I am rapidly catching up to her at 38 years old. This stuff gets confusing. There’s no reason for it, though. Why should I pay $1 for antibiotics and $60 for brand-name birth control? Even it out and pay $25 for each.
  2. No one can be rejected for coverage. Even if we don’t reach the standard of requiring health care for everyone, we absolutely cannot reject people for pre-existing conditions. These are the people that need coverage most, and should be given credit for getting coverage.
  3. COBRA has to be brought down to earth. $600 is not a reasonable monthly payment for insurance. And it’s not near what the estimates were for individually purchased insurance. So why was COBRA that high? We cannot expect a person who is leaving a job to pay such a high amount for insurance.
  4. Dental and vision need to be included. These are medical benefits. Treatments for your eyes and teeth cost real money. Neglecting these parts of your body is just as dangerous as neglecting your knee or your finger, if not more so. Putting this insurance into a separate category is simply a joke.

We do need more, but these changes will put us well on our way.

The President has once again spelled out his thoughts on Why We Need Health Care Reform, in The New York Times Op Ed page, and I agree. I hope you’ll read his thoughts and chime in. And call your Senator and Representative.

UPDATE: Here’s the White House point of view, at WhiteHouse.gov/RealityCheck.
White House Health Care Reality Check

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