This should really be a racier post than it’s going to be with a name like that but I couldn’t resist the double entendre.
It’s my 600th blog post. I have been here since 2006, talking about life, law, and motherhood 600 separate times. I thought all week about what I was going to do to commemorate this occasion. I thought about a retrospective, I thought about a give-a-way, but my heart is not light and airy, and it would have to be for either of those posts. So despite the fact that the internet is forever, what I plan to giveaway today is way too much information. (Aren’t you lucky? I promise none of it involves my uterus so if you are male you can safely stick around.)
Many of you who know me outside of this little space of internet real estate already know what is going on, those of you who read my facebook page may have seen some cryptic messages about bad tasting food and oddly fast weight loss. Most of you don’t know because my husband and I are paranoid, and we don’t tend to share overly personal stories online. However, I am not having an easy time managing this one, so I am going to share it now, and hope that doing so will help me carry it with me. Besides, the insurance companies have access to this information, as do future employers, through other, more direct routes.
I was recently diagnosed with Epilepsy.
It was very out of the blue for me, as I have never had a petit mal or grand mal seizure, and had only begun seeing a neurologist because my left thumb started dancing to its own drummer upon occassion and my GP was afraid I might have MS or something. After a few months my left thumb dance became a left hand dance, then a two hand dance, and my neurologist took a look at the rapid progression and two odd little sleep deprivation EEGs and announced a potential diagnosis. “Focul seizures” and Epilepsy.
(I say potential because without the petit and grand mal seizures a full diagnosis of Epilepsy takes years of abnormal EEGs. She has placed me at about an 80% chance of having Epilepsy.)
I learned that Epilepsy can show up at any point in a person’s life, and that is not a childhood disorder, as I had always thought. I learned that it has a whole range of different levels of severity. I learned that I would have to be treated for it, because while I don’t have seizures that effect my consciousness, and I never have, I will likely start having them at some point in the future if I don’t start treating it now. Apparently my focul seizures, beginning in my thumb, marched into my hand because that is what this form of Epilepsy does. It marches from one small focal location throughout your body until you begin to suffer the more “traditional” symptoms of Epilepsy.
So, I went in to see a doctor because my left thumb twitched oddly from time to time and I left with a lifetime supply of anti-seizure medication.
Well, there are silver linings. I am spending a lot of time looking at the silver linings these days, because there are some thick clouds gathering on my horizons right now and as I scramble for my umbrella, I am looking toward a sunnier tomorrow for all I am worth.
To begin with, the medication I am on is the leading treatment for migraines. I have not suffered a migraine since being placed on this medication. This pleases me, a twenty-two year sufferer of migraines, greatly. So greatly that I have decided to give this medication a “college try”, despite the other side effects, just to see if I can adjust to it and be migraine free for the first time since I was twelve.
I don’t have a brain tumor. Apparently, the other possible cause of a randomly twitching thumb is a brain tumor. I am happy about this as well.
I can drive. I didn’t for the first two weeks while I waited to see what the medicine did to me, because I didn’t want to endanger myself, my children, and others, but it doesn’t interfere with my ability to drive. Yay for being able to drive.
I am now a really, really, really, really, really cheap date. Really. One drink, and I am basically a step away from drunk. Yay for saving money on alcohol in these harsh economic times.
I have lost fifteen pounds since starting the medication. It’s nearly swimsuit season. I need a smaller swimsuit.
Now, for the things that I am not happy about or that I am really freaked out and scared about.
In clinical studies the medication I am on caused Anorexia in a scary percentage of the adults who took it for Epilepsy. That’s right, not weight loss, fucking Anorexia. So now, instead of just freaking out about having hands that suddenly curl in on themselves and little and begin to dance to their own tune from time to time, twitch twitch, I now have to watch carefully for symptoms of anorexia. I have to set an alarm for myself to remind myself to eat a minimum of three times a day, and ask my friends and family to push food on me. I have lost fifteen pounds already and have been on the medication for less than a month. (Great in theory, freaky in reality.) For example, I got really involved in a case the other day, and Lee came home from work to find the kids devouring a box of saltines and a jar of peanut butter. Monkey had gotten them some dinner on her own, because every time she came in to the office to ask me to feed them, I told her it would be another minute.
I am never hungry. I don’t ever want to eat. Nothing sounds appetizing to me. I have no physical indications that food should enter my body.
In addition, the medication changes the way my body processes carbon, which makes everything I eat taste different, kind of like it was dipped in melted pennies. This is especially true with sweets and fruit. I can’t stand to eat sugar. Grapes and plums are the only fruit I can tolerate.
When I get stressed out, my lower eyelids and upper lip flutter. It’s barely detectable to anyone else, but I can feel it and it drives me insane. The only way I can stop it, is to lie down and breathe deeply for a few minutes, because it’s a stress reaction and freaking out makes it worse. It is so obvious to me that I am positive that everyone else can see it, but I have looked in the mirror, and unless you are standing two inches from my face and looking for it, you can’t.
Parathesia. My hands and feet get numb and begin to feel like that moment right before your limbs regain sensation when they have “fallen asleep”. It’s really uncomfortable and often hurts. Unfortunately for me, it’s not a circulation thing, it’s a way the medication fucks with my brain chemistry, so rubbing them does nothing. This will sometimes last all day.
Sometimes at night I have intense visual trails. This makes me nervous about driving at night, so for the time being I have chosen not to. It also makes me sick to my stomach. It also has tricked me into thinking someone else is in the room, because I will see a “trial” of my own body out of the corner of my eye and scare myself silly.
Lee and I were talking about having a third baby. We really want one. The medication I am on will cause birth defects. If I get off the medication, the focal seizures will likely continue their march onto other parts of my body. So we basically have to choose between the risk of making my Epilepsy worse or not having another baby. Tears were shed, many, many tears, when we figured this one out. I am sure they will be shed again. So far, this is the very worst part of the diagnosis.
The sucky, whiney part of all this is that I can’t eat any fucking chocolate to cheer myself up because it basically all tastes like carob. Seriously, it all tastes like badly made carob. Badly made carob dipped in melted pennies. I would push old people down stairs for a good tasting brownie right now.
So, Happy Blogoversary, thanks for coming, please help yourself to a slice of carob cake before you go…
I think the really morbid part of this diagnosis is that I have only known one epileptic in my life, and that was Nick. He died a little over two years ago. So some strange little part of my melodramtic brain is freaking out over here, yelling things like “You couldn’t have left me your fucking Crim law notes huh, or your outlines for Property or Torts? It had to be your epilepsy?” Well, it’s yelling that in between bouts of barely controlled crying.
13 thoughts on “Sexcentennial… and Scylla bares it all.”
Wow, I’m really sorry about all this.
I don’t know if it helps, but I know one epileptic: my nephew, who is 24 now and was born with severe brain damage. The medication he is on is fantastic. The only time he has had a seizure in recent memory was when he went through puberty and his dosage had to be adjusted.
We’re thinking of you.
Thank you Monica.
It’s really odd, I know logically that epilepsy is not a deadly condition, it’s just a correlation that is fucking with my head at the moment.
Reading about the puddle of pee cheered me greatly though, you should write more. 🙂
This sucks. The whole lot of it.
But! you’re a fixer and a baker, so … maybe you can find a cupcake that uses prunes (because they’re just misunderstood plums) as its sweetener? It’s not chocolate. But imagine the fortunes you could make in the Epileptic community!
I have a horrible sweet tooth, so this must be resolved! Have you tried agave nectar? Maybe its chemistry is such that you can get the sweet without the pennies.
Also, how do you know what melted pennies taste like? Did you lick all the currency and decided, yes – it’s pennies?
Wow~ I’m torn between being very sad for you and begging you for those pills 😉
I am sure the decision about a third child must be so difficult for you. Have you considered adoption at all as a potential solution?
Thank you for sharing this with us… I hope you’re able to find peace with this new reality you’ve found yourself in!
I lover you, Catt.
Make that, I LOVE you, Catt. Otherwise it’s just too weird.
Amy, I can’t tell you how many people sneak into my office trying to steal my medication. 🙂 Thanks for the love.
Mom, you are right, it’s too weird with the extra r, I appreciate the love though!
Cat, prunes? Really? You think prunes? Cause I have never really looked at prunes and thought “yummy” but you are someone whose opinion I really value, so maybe I will give them a try. Only if you promise to come try some prune cake with me though, cause if I have to try and eat them alone, I am not even trying.
And I have had pennies in my mouth before, it’s supposed to mask the scent of alcohol. (Mom, don’t read this part) So when you have been engaged in underage drinking, popping a penny under your tongue is supposed to mask the scent. 🙂
There are some great resources out there for the food tasting bit – my gran is going through something similar, but hers is because the chemo did wacky things to her taste buds. Have you tried the weird bean that makes everything taste different? (known in many places as “flavor-tripping”.)
In any case, glad you made it last weekend. It was great to see you. I’m sorry stuff has been so wacky, with a mixture of yays and boos. *hugs*
I will have to try those resources Pix, see if they are any good.
Cat! I need prune recipes! And you, and tequila.
i’m sorry you have to deal with all of this. you sure have been going thru a lot lately. i hope the side effects are short-lived and you get back to feeling like yourself really soon. hugs.
Thank you! I give hugs back!! (Internet hugs are surprisingly comforting!)
Don’t know if this will matter to you, but anorexia is a medical term simply meaning loss of appetite, so certainly make sure you eat enough, but don’t worry about ending up with the psychological disorder anorexia nervosa, which is a whole other beast. Good luck!
That does help a little. Thank you.
I do appreciate feeling less like I am giving myself a scary psychological disorder.
Thanks for stopping in to see me and for the comment!