Tuesday, November 20, 2012

What Epilepsy Means to Me: Mandy Krzywonski from My Life as Mandy . . . with Epilepsy (Part 2)

We started to get to know Mandy yesterday in Part One of her interview.  At 19 years old she is still trying to find the right treatment for her seizures yet she is determined to help others. Mandy talks about her blog and her advocacy work today.

Robert’s Sister:  Have you done any advocacy work (individually or with an organization) or participated in any research studies?  What made you want to be involved?

Mandy getting an EEG
I have done a lot of advocacy work and it is something that you could probably say that I have lived for. I started my blog My Life as Mandy. . .with Epilepsy when I got my VNS [Editor’s note: VNS = Vagus Nerve Stimulator] put in. Literally! I blogged about my first days with the VNS and what it was like. Why? I wanted to help others trying to make the decision. The VNS reacts differently with everyone else’s body, and I had some rare side effects. So I am very glad I shared my story. I have had side effects from the VNS that I haven’t even heard of but from three people in my life! I stopped blogging about the VNS when it stopped working for me. Things didn’t change, and there was no need to continue the same post over and over again. Am I right?

My blog took a turn as I started to meet other advocates, and as I started to take a better look at myself. I saw how I felt alone a lot in this world. Wondering if others went through everything I went through with seizures. The VNS stopped mattering to me at all. I saw how other advocates and bloggers spoke a lot about their lives, and I found myself saying “Me too! That happens to me too!”

Then I realized – people want to know about my everyday life. People don’t want to feel alone anymore. Now, I had written about my everyday life already. But not as much as I should have. So I started to write more, and more detailed. It’s as simple as that! Within six months my blog got pretty popular. I had comments and emails everyday by the dozens. I noticed folks started to call me the “EpilepsyBlogger,” which is where the name came from. I made a Facebook fan page, and things went wild! I had readers from all over the entire world!

I wanted to give up sometimes. Sometimes there were weeks when I felt like I wrote my heart out and I didn’t reach anyone. And some weeks my mother would say, “You don’t need to be blogging if you’re not getting paid to do so.” But something said to keep on going and good things would happen. Sure enough, I’d wake up to an email from someone thanking me for making them feel less alone. Or someone telling them that I helped them understand their son a little better. Or someone saying that they haven’t felt this “understood” in their entire life. That’s why I blog. It’s not for the money, (although, that would be great!) it’s simply to help others.

Other than blogging, I have done volunteer work with the Epilepsy Foundation in my area. I do a personal fundraiser each year during National Epilepsy Awareness Month (November), along with donating 50% of my artwork proceeds to the fundraiser during November. I drop off hospital gift baskets to the children’s Neurology floor in my local hospitals every four months. I have three Facebook pages dedicated to helping families and people with epilepsy, and an epilepsy support group on Facebook! I don’t think I am even listing all that I do – but I’m sure everyone gets the point!

Robert’s Sister:   How has epilepsy affected your life?

Epilepsy – being as painful as it is – has not affected my life in entirely negative ways. For each “-“ there is a “+”. For example, I wouldn’t be able to blog about epilepsy and be as powerful of an advocate as I am if I hadn’t first suffered so badly with epilepsy.

Or, although I have not been able to carry a job because of my seizures, I have been able to create more art, which is something that I love. It is another thing I live for, and it is how I express my deepest feelings. Most of my art is about my epilepsy, so it is really something to look at for a while when I’m  finally done with each piece. Each tiny detail has a specific meaning that only a person with epilepsy could understand. I’ve even had one of my pieces featured on the cover of Epilepsy & Behavior, the one and only international Epilepsy medical journal! It was so awesome!

Robert’s Sister:  What is your favorite memory? 

As far as memories go, I have so many. But here’s a summation!

1.       Finally going home after a terribly long and violent hospital stay. EEGs are always the worst. My mother (sometimes mother and father) always take me home and spoil me with something. They ask me what I want, and I usually want a nice chicken finger basket with white gravy and Texas toast from Whataburger. Sure makes up for all that disgusting hospital food! Although, this last time I scored an iPad! But truly, something about knowing that you’re safe with your parents after a week (sometimes two weeks) of Tonic-clonic seizures is just heaven. That’s why I always scream for my father when I wake up, and that’s why I always want to lay next to my mother after the pain wears off.

2.       Having my boyfriend of two years, Rafael, love me through all this mess. He’ll hold me during a complex partial (which happens a lot when I am half an hour late on my medication) and feed me medication. Then he’ll help me to the couch and let me fall asleep on him while he holds a bag of frozen peas on my head. (If you have epilepsy, you know the headaches you get afterward are enough to take out a crew of soldiers. He doesn’t care when I am swollen and ugly from my pills – Heck, he still lies and say I’m beautiful! It means a lot to have someone love you that much. (Read A Love Like Frozen Peas to learn more about my boyfriend and I.)

3.       Dropping off my children’s hospital care baskets and seeing the smiles on their faces. I drop off the hospital baskets to the children’s Neurology floor, where many children have epilepsy. I wasn’t allowed to know which ones, but many of their parents told me when they saw my "EpilepsyBlogger” t-shirt. It takes a lot to make a child smile after a day full of seizures, and I am glad that my baskets fit the test.

Robert’s Sister:  Do you ever wish you didn’t have epilepsy?

I won’t lie. There are days when I look to the sky and ask God, “Why did you pick ME?!” At one point or another, we’re all going to do this. For me, I feel like God picked me because of all the things I am currently doing to help others like myself. However, I don’t think we’ll ever know the real answer. Maybe there is no answer. Nonetheless, we just have to keep on moving. We must be thankful with what we have, work for what we want, and get over what we can’t have.

I have to get brain surgery this January (Left Temporal Lobectomy) and I am scared out of my mind. I’ve been crying for the last two weeks constantly, and I’ll gladly admit that. My boyfriend, Rafael, is so sweet and he’s always there to listen and make me laugh. But sometimes he has to give me the cold truth so I can pick my butt up off the ground and keep chuckin’. He says, “Mandy, we’re all living on borrowed time. There’s millions of people who wished that they could have lived to your age, but never made it. So keep enjoying your life, and cherish every minute. Go into this surgery with confidence that you’re going to kick epilepsy’s ***. I’ll be holding your hand when you go in to the hospital, and I will be there when you get out.  Just be thankful for the life you have been given.”

Robert’s Sister:  What do you want people to know about epilepsy?

If I could pick something that I really want people to know, I would have to say that epilepsy is really real. It isn’t just this illness that is “all in our heads” or “not so bad because it doesn’t kill us.” So first of all, it hurts mentally, emotionally, and physically.  A lot of that mental and emotional pain comes from the fact that others don’t understand what we go through.

Second of all, epilepsy, unfortunately can be deadly. Look at status epilepticus or SUDEP. That’s something doctors don’t say much about because they want us all to have good attitudes about our health – they don’t want us to worry about dying all day every day. I thank them for trying to help in that manner. However, the public needs to be aware and understand that we must all be aware and we must all donate so we can find a cure for this illness that has taken just as many lives as breast cancer.

Robert’s Sister:  Please tell us how we can contact you.  

Mandy's website: http://mandykrzywonski.blogspot.com/ 




(For mothers, fathers, aunts, uncles, grandmas, grandpas, nieces, nephews, step-fathers, step-mothers,
daughters, sons, step-daughters, step-sons, friends, best friends, wives, husbands, couples, and so on! Even singles!!!)


(Hopeful words, videos, music, and more to brighten up your day!)


Loved ones of those with Epilepsy also welcomed.
Topics posted each week by Mandy (EpilepsyBlogger).
All ages!


Robert’s Sister:  Thank you, Mandy, for sharing your life with epilepsy with us.  You are clearly enjoying and cherishing every bit of life possible! You are an inspiration and we wish you nothing but the best outcome possible for your surgery.

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.  


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