Breaking the Chains of Epilepsy

Photo called "Chains" by Amanda Krzywonski (me)

I understand the frustrating feelings that come along with being Epileptic. There's fear that your medication will fail you, especially when you need it most. There's shame to be in front of a crowd, or even in front of your closest friends and family. You wonder, "what would they think of me if I dropped down into a seizure right here in front of all of them?". It's a scary thing. Just as important as any other popular disease such as Cancer, Crone's Disease, AIDS, HIV, etc. Society spends so much time focused on these other diseases, that it can make Epileptics feel lost and alone.
I remember walking down my high school hallway hearing whispers and yells saying "Hey, it's that retarded girl!" or "Isn't that the seizure girl?!". I remember hearing and seeing all the rumors and other disrespectful and demeaning gestures toward me. Having a seizure in front of the whole art class was not something I planned, but Epilepsy doesn't care what times are convenient for you.
Just the medication itself is frustrating. I swear to God, these medications have been like a ball and chain on my life. I've tried Trileptal, Depakote, Topamax, Vimpat, Keppra, Zonegran, and many others that I can't even remember. None have successfuly stopped my seizures. And the ones that kept my seizures even slightly under control gave me horrible side effects that made it hard to get up each morning and live a normal, healthy life. Extreme weight gain, weight loss, blisters, rash, infections, kidney problems, liver problems, high blood pressure, hair loss, migraines, trouble swallowing, insomnia, rushing thoughts, and hallucinations to name a few. Being a teenager, this is too much to handle on top of going to school, doing assignments, spending time with friends and attempting to date.


Photo called "Side Effects" by Amanda Krzywonski (me).
Taken after cleaning my brush during a stage of hair loss
due to Epilepsy medication.

I remember at one point that I was too ashamed to tell a soul about my Epilepsy. But now I want to tell the world. I want other people like me to know that they are not alone. I go through what millions of other horribly misunderstood people go through everyday. Some are diagnosed, but others are just pushed away as crazy. Epilepsy has been wrongfully mistaken for tons of other conditions such as schizophrenia, bi-polar disorder, depression, migraines, and even plain insanity. It's even happened to me. So remember guys and gals, there's someone else in this world just like you. Look to the sky and start living your life, even if you feel tired and worn. And believe me, I know sometimes you do. Continue supporting our disease so that one day we can find a cure and break the chains of Epilepsy.


P.S. - If you think you have Epilepsy, but are being misdiagnosed for something else, check out some of the links in my sidebar. They will clear up your questions of all the possible types of seizures and seizure symptoms. Make sure to visit the link "40 Different Types of Seizures". It's a great article that can help break down the confusion you get when you're wondering "is this another type of seizure?" or "where is this weird symptom coming from?". Print out or write down a list of your symptoms to take to your doctor. It helps to try and research the medical terms and names of your symptoms. I know the feeling of trying to explain something to your doctor and being stuck there feeling like a complete idiot. Also, feel free to message me about weird symptoms you have. I might have had them too... actually I probably have had them all! I love feedback! Goodnight, and God bless you all.

P.S.S. - The photos were all taken by me and can be found in my photo blog called "Slow Down and Look at Life".