Epilepsy

.

I struggle with figuring out how to start this blog. Maybe I should start with the quote everything in life happens for a reason.
I have short term memory loss, high frequency hearing loss, and epilepsy seizures. I've spent seven years of my life waking up with no memory of what has happened during the week, head aches, deja vu, memory loss, hearing loss, not really fully feeling emotions, and in and out of hospitals. Although these experiences have been very difficult, I mean VERY difficult, I still have managed to persevere and continue to live my best life. I would have seizures about 5-7 times a day for about a week every month. I never let my seizures excuse me from any classes. I felt that being at school and doing something was very important because I was proving to everyone that no matter what you are going through, you can still achieve your goals.

I spent a lot of time at doctors appointments, getting all sorts of tests done, and honestly I started to hate doctors so much. I just wanted answers to what was wrong with me, why am I going through this, what is happening. I found that the doctors and psychologists that I worked with didn’t care about their clients. I was misdiagnosed with so many conditions it was insane. For example, my mother and I met with a psychologist. When explaining what I was experiencing with my seizures, the psychologist jumped to conclusions without letting us complete our explanation. My mother told the psychologist I had short term memory loss, he responded with “oh so she’s ditzy.” Honestly this guy was such a jerk I couldn’t stand him.

I had to get my blood taken a lot, and I hate needles so much. Horrible, just horrible. I had to go through two magnetic resonance imaging (MRI), an electroencephalography (EEG), an electrocardiography (EKG), and a computed tomography scan (CT) as well as, a bunch of counseling sessions to try to get diagnosed. A MRI is a medical imaging technique used in radiology to form pictures of the anatomy and the physiological processes of the body in both health and disease. MRI scanners use strong magnetic fields, magnetic field gradients, and radio waves to generate images of organs in the body. An EEG is an electrophysiological monitoring method to record electrical activity in the brain. It is typically noninvasive, with the electrodes places along the scalp, although invasive electrodes are sometimes used (this is a pain in the butt to try to sleep wearing. I had to spend time with sleep deprivation and these things hurt your scalp. You are hooked up to a machine and you can't walk anywhere because you can't detach from this machine. I could walk to the bathroom that was right next to my bed and that was about it). An EKG (electrocardiogram), is the process of recording the electrical activity of the heart over a period of time using electrodes placed over the skin. A CT scan makes use of computer-processed combinations of many X-ray measurements taken from different angles to produce cross-sectional images (virtual “slices”) of specific areas of a scanned object, allowing the user to see inside the object without cutting. Yay they didn’t have to cut into my brain!

I think that the biggest struggle I have experienced was that I felt like many people did not treat me as “Kayla.” I felt that I was identified as my disability, and that people viewed me as only that. I decided that I didn’t care about what people viewed me as, and I wanted to prove to myself that I can be the same, or even better than everyone else. I was told by countless teachers, doctors, psychologists, psychiatrists, and others that I will never amount to anything. I was told I will never graduate high school, let alone go to college. Well, one high school diploma, bachelors diploma, and in progress of a masters degree later, I’m starting to prove A LOT of people wrong.

Get a notebook and pen, or your cell phone note section ready because I’m about to educate y’all. Signs of epilepsy:

• Short attention blackouts, dazed behavior, memory gaps, mumbling or no response 
• Sudden falls, frequent stumbling or unusual clumsiness 
• Repeated, unusual movements such as head nodding or rapid blinking
• Sudden stomach pain followed by confusion and sleepiness 
• Unusual sleepiness and irritability when woken up 
• Frequent complaints that things look, sound, taste, smell or feel “funny”
• Sudden, repeated fear or anger 

Advice for people struggling with disabilities, especially epilepsy: 

• Everything in life happens for a reason. 
• Keep an epilepsy diary!!!!!!!!
• Find your support system (family, friends). Having a smaller support system is much better. 
• It will get better.
• Get plenty of sleep!!
• Try to reduce stress (yeah right) 
• Don’t drink alcohol 
• Take your medication! Fill a weekly pill box with your medications, that way you can remember when you have taken your pills
• Learn relaxation techniques 
• Have a daily planner, make notes of everything, write your schedule down everywhere 
• Unplug - give yourself time with no electronics (tv, cell phone, etc)
• If people are jerks, obviously you don't need them in your life. This is one of the hardest parts of going through seizures, and figuring out who the people are who TRULY care about you is very very important.