Sunday, November 6, 2011

A Decision Not Made Lightly

More information about my seizures... I've been thinking more and more about my decision to go off my medication. The pills obviously control my seizures at least a little but they also give me some horrible side effects. The most minor nuisance is that my body is extra sensitive to stress and to allergies. Whenever I come in contact with something I might be allergic to, my reaction is must more substantial than it would have been previously, and whenever I get stressed my body has developed a new symptom - I break out in hives. And sometimes when I'm not even stressed my body decides to break out in hives just for the fun of it. Then there is the lethargy. I am a part-time working, full-time student, mother of 4 - including a 5 month old, and so I am tired in general. However, when you add in this medication, I have a hard time keeping my eyes open whenever I sit still for more than 15.8 seconds. This makes ordinary life VERY difficult. However this is not the most irritating, frustrating side effect... The worst part of this medication is its effect on my memory. Clinically, only 7% of users experience this particular malady, but I'm one of the lucky 7%. Epitol can lead to amnesia. It affects both my short and long term memory making it nearly impossible to remember what I went to the store for, and also to remember how we celebrated Jillian's 3rd birthday.... If it wasn't for my scrapbooks and Lowell's blessedly wonderful memory, I wouldn't be able to tell you more than a few scant memories about how I've spent the past 30 years of life. I can't even begin to express how devastating this is. I don't remember more than one or two small events from my wedding day; I have five or six memories from college and only a few more than that from high school.... Its almost like I don't have roots to speak of... My only ties to my life and my family are whatever happens today. I think this has a lot to do with why I have such a hard time with criticism or arguments... I don't have a solid base to rest on, I don't have a foundation to fall back on when times are tough -- the only reality I have is the here and now. So when things are good, I'm good but when they are bad, my world is completely shaken.
I know this is a little too psycho-babble-ish for some of you, but I share it only to justify my decision to go off of my medication. It was not a choice made lightly and was not one done on a whim. I remember what it was like to be "normal" and I have SSSOSOOOOOOOO relished these past few months when I actually had a memory. I felt so proud of myself that I could put down my keys and then, the next morning, I knew where they were. And I could meet someone, and then walk away from that first conversation and still remember their name. I can't begin to tell you how stupid and ridiculous I've felt these past few years... I am not used to being forgetful and dumb. I remember how I was before this medication and I want, so desperately, to get back to that. I enjoyed a few months of actually having a brain and I am quite discouraged that I have to give it all up again.
I'm sure some of you are asking, why not try a different medication. The short answer is money. For one thing, Epitol is on the $4 prescription list at Walmart and, for a medication I will have to take for the rest of my life, this is an important consideration. Also, changing medications would mean going to a neurologist and going through all the tests again. We don't have insurance so, for right now, that is an impossibility.
Today finds me one week post seizure and I actually made it all through the day without feeling the "aura" that precedes a seizure. I was also completely brain dead when I was dropping Wyatt off at the nursery this morning. I acted like the stereotypical blonde... Thankfully I can still chalk it up to pregnancy brain, but that won't last much longer. While it bothers me that other people must see how out of it I am, what really upsets me is how I see me. I am not stupid. Even just looking at academics, I was valedictorian in 8th grade, top 10 GPA in high school, graduated with my bachelors with a 3.83 and now my masters GPA is a 3.75. I know I'm not stupid but, goodness I feel stupid.
Its horrible to have to choose between remembering my children's childhood and being seizure free... But that is the situation I find myself in. Everything about this situation has been agonized over, and I guess the decision has been made. For the time being, I will take my medication as prescribed. As soon as I am able, I will try another medication. Between then and now, I'm going to use my blog, my scrapbooks, and my wonderful husband as my tethers to reality. And I'm going to pray that eventually my condition will be reversed.


theKband said...

Praying for you today! These decisions are soo hard to make and you are the only one who knows your body. If you are okay with the Lord and have peace from Him, have your husband's support, it doesn't matter what the rest of the world thinks.

jesuslovesgiraffes said...

Kristin, Thanks so much for those words... They mean a lot! I'm resting in God's hand and trusting Him to provide - one way or another... Either we'll get insurance to switch meds, I'll be miraculously healed, the side-effects will go away, I'll be taught to live without a memory or... someother provision that I can't even imagine. I just know that He'll be there and He'll make a way. Again, thanks for the support and encouragement.

Stony and Brit said...

What a hard decision! I wish you could put your pills away and live seizure free from this moment on until forever. But I can't grant my own wishes. :(
I'll keep praying for you and your family through this. Even when it is not easy, HE is good. (sigh)