How I try to find the words

So what does being “self sufficient” really mean? It means, to me, that I can be independent – financially, with work, with my food systems, with my emotions, and finally with my body chemistry. This last one has been a challenge. So this is my blog, so this is my life.

I’m just going to go ahead and say it. I have epilepsy. I have seizures. This is a hard thing sometimes for me to admit to/say aloud. It’s scary. It means I will need to take at least one pill per day for the rest of my life. It means my brain does not function normally. It means that I am forever impacted by my body chemistry in a way that I cannot control. That does not sit well with me. I need control over my life, and this is a very personal and important thing for me to have control. And it will never be there.

This is my story. When I was 14 I was diagnosed with having petit-mal, or absence seizures. Looking back, I had them long before then, but I just thought that was normal. It was normal to me. I just kind of spaced out for a while every now and then. It manifests mostly when I speak, and I was a shy kid who didn’t talk a lot in school, so that is probably why it went undiagnosed for so long. I went on a terrible medication that made me gain 30 pounds, I went from Varsity to JV on my swim team, my grades tanked and all I wanted to eat was steak. And sandwiches. And I was miserable. I surprisingly grew out of it when I was 16, but now looking back, maybe I just hated that medication so much that I pretended they weren’t there, and convinced myself and my doctors.

When I was in college, they came back. I tried a variety of medications and found the one that worked. I’ve been on this medication for the last 8 years with no side effects. It’s been amazing. While I still have the seizures from time to time, they’re mostly in the morning and not when I really need to interact with others, so it doesn’t really impact my life. Until last Wednesday. Then it all went spinning out of control.

It stopped working. My medication stopped working. And I have no idea why. It happened in the middle of a meeting I was leading at work, in front of 11 other people. I’ve gotten really good over the years of playing it off as being “spacey” or it being “the end of a long day” or that I’m “distracted” and for the most part it works. But they kept coming. It washed over me, and I pretended they weren’t there. Thursday morning I could no longer pretend. I had a meeting at work, in which I chose not to speak much, a good choice. I was having seizures about every 1/2 hour. I was panicking. I was scared. And I went to the hospital.

In the emergency room they poked me, stabbed me, asked me questions, undressed me, made me pee in a cup, took my blood and tried to put in an IV. They gave me an additional dose of my current medication, and when they were still happening they tried to do an IV delivery of an additional medication. Did I mention I hate needles? And hospitals? And everything medical? It didn’t work. They couldn’t get the damn tube in. My veins are bad veins. My loving kind husband walked into the room right as I began to lose it. Sobbing, scared, in pain and weak, I finally screamed at them to stop. They did and just gave me an oral dose. And it worked.

It worked. It made me tired, very tired. But it worked. This was on March 29th. I had no more seizures that night. They put me on a double dose of meds, my current one and this new one. It made me so tired. I slept. And was woozy. Did I mention tired? I went to work on Friday but didn’t work with the kids because I had no idea how this medication would effect me. I was so tired all day. But happy to know that I had spring break coming up where I could relax, recover and learn how this medication effected me. I had a great vacation. I slept a lot – 10 hours a night. I didn’t interact with many people. I napped most days. And I didn’t have a single seizure. It was amazing to know how life could be like that. That this is what normal was supposed to be.

Two problems though: side effects. They made me very tired, and also has this unusual mood-altering side effect. I am all of a sudden a short on patience, angry person. It makes me lose my temper easily. It was all I could do not to scream at my loving husband for not doing anything wrong at all, bless his heart. Is this what people who are angry all the time feel? How do you survive? This medication has the potential to cause thoughts of suicide and dramatic depression. I have not been there, but based on how I am currently feeling, I can see it unraveling. Quickly. This week, while I had plenty of time to relax, I turned into a bitter aggressive person. This hurts my heart to know. It also brings it back to not being in control. Of my own emotions, of my own body chemistry. But I didn’t have any seizures. At all.

Until this morning. I wake up to go to work, hit snooze three times, take a shower, am brushing my hair as I see my eye twitching. It’s an “autonomic” response that I have when I have a seizure. I couldn’t answer Brandon’s questions. I couldn’t communicate. I was having a seizure. I broke through. This morning at 7:05 am. And I cried. Here I am, back to being nervous, scared, sad and on top of this, angry and tired. So I took my drugs, went to work, crying all the way, called my neurologist from the car, hoping to get an earlier appointment (than my current one on Thursday afternoon). We’ll see. Otherwise, here I am, back to where I was before.

I am scared. I am sad. I am angry. I am not self-sufficient. I have epilepsy and will for the rest of my life. I lose my words and cannot reach out. All I want is a normal brain. Normal chemistry. A normal life. It’s all I want, and what I can never have. I have no words.

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2 thoughts on “How I try to find the words

  1. I know you because I am you. I should say that I was you. I was diagnosed with complex partial seizures when I was 15. I was allergic to so many different meds, and when I finally found one that would work, it had the potential to kill my liver, kidneys, and bone marrow.

    Your journey parallels mine, but let me tell you this:

    THERE IS HOPE.

    Read my blog at LiveJournal.
    http://saklopfenstein.livejournal.com/
    Find me on Facebook.

    We NEED to talk.

    Sincerely,
    Shaun Klopfenstein

  2. Stephanie,
    I’m battling to find the right words to put here. The amount of courage you have displayed is something that cannot be measured.
    I want to express my concern, and let you know that you can count on me to be an understanding person in your life. Among that myriad of emotions you can count on at-least one thing to be absolutely static: you are loved.

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