Archive for the ‘Show me the drugs!’ Category

August 03, 2008
Filed Under (Show me the drugs!) by svana

So… I was fired by my neurologist for being a “difficult patient”, I alienated a whole group of people because I refused to pander to the would-be-victims.

:D I feel GREAT

Epilepsy has made me become more aware of the things I *must* do in order to take care of myself. This means I can power nap with impunity, I am so loving that! I choose to view this glitch in my very active, electric brain as a wake up call for what is truly important. I no longer burn the candle at both ends, breaking my back to accommodate people that do not appreciate the effort. It is amazing to me that I would find epilepsy liberating rather than a set of mental handcuffs.

The only drawbacks that I can see at this point are: how people react when I tell them I am epileptic; when the seizures actually hit me; and not being able to take a long tub bath without supervision.

My Mom, bless her…cannot refer to my seizures as seizures. To her they are “thingies”. I find this incredibly funny coming from a former medical professional. Perhaps it is because I am her daughter and she can’t bear the thought of me having this “condition of thingies”. Regardless, she has been supportive of my choice to handle my epilepsy without meds, despite her being terrified I will have a “thingie” at the top of our stairs and fall to my death. My Dad simply chooses not to mention or talk about it. I suspect that is as a result of being raised in a British household, where these “thingies” are not discussed. My friends, husband, and daughter just take it as it comes…like I do.

When it comes to supervised bath time, I get grumpy. I mean, what am I…two years old?? Intellectually, I understand why this is necessary…but it still pisses me off. I twitch once and immediately I am asked if I’m having a seizure. To be fair, I can’t complain too much…but I still reply with, “No, not having a seizure…just thought I’d have a nap.” Good thing my husband has a sense of humour, or I’d be doomed. I won’t say something like to my daughter because she would rip a strip off of me a mile wide for being irresponsible. Kids these days.

We have found a pattern to my seizure activity. This is a good thing as it allows me to be more cautious with myself when I need to be.

Recently…as in August 2nd, I missed out on a very important birthday party as a result of the seizure cycle. My going to the party would have caused a bit of upset for the birthday girl, as I would have had a seizure while in attendance, and that really is not cool. She shouldn’t have to worry about me on her birthday…especially with all the pole dancing going on. I suggested to her we could play a game on the balcony of “Pin the Dilantin on the Epileptic.” While I found that *really* funny, it meant I’d have to pony up some dilantin…which I don’t have…damn.

So, while I may miss out on some things, I win too.

Humour coupled with the support of my dear ones has really made this electric-lemon-thingie a great gag for all of us to enjoy, me most of all. I’ll be enjoying comments, said with deep affection of, “twitchy bitch/witch”. This simply reinforces my thought that the Universe does have a sense of humour, and it is up to us to see if we get the joke.



August 02, 2008
Filed Under (Show me the drugs!) by svana

I decided to see if I was unusual in my decision to handle epilepsy without a prescription, so I went to a “group support session” to get a better idea of what I should expect. Note, I said *a* group support session.

Moving on….

I encountered, for the vast majority, folks who needed a reason to complain. Misery LOVES Company.

Now, please don’t misunderstand, some of the people there had really great attitudes and those were the people who experienced Grand Mal, or Tonic-clonic, seizures. These individuals really had the lemons-to-lemonade shtick down….I mean, they could have a seizure and pretty much bounce right back to a good mindset, even though you feel like two dozen angry dwarves have beaten you with sledgehammers for a day.

The other type of people I encountered are precisely the people that really annoy me…whiney, woe-is-me, my-life-is-sooooo-hard, pity me and finally, an excuse for everything and anything. One guy (we’ll call him Joe, which is not his real name), who was quite over weight, complained he wasn’t allowed to drive. I’m sorry, but I really couldn’t help myself…I suggested that the walk would do him some good. Joe’s response was, “Well, I MIGHT have a seizure.” I had to ask….”Well, Joe, When was your last seizure?” His response, “EIGHT MONTHS AGO”…as if it was yesterday. “Joe, what type of seizures do you have?” Damn if he didn’t respond like he was wounded in a major battle, “Absence Seizures”.

SIGH – read below, as written in a medical text:

Absence seizures are brief episodes of staring. Another name for them is petit mal. During the seizure, awareness and responsiveness are impaired. People who have them usually don’t realize when they’ve had one. There is no warning before a seizure, and the person is completely alert immediately afterward. Usually less than 10 seconds, but it can be as long as 20.

WOW

I really do try to be tolerant of how people cope with the cards they are dealt, but Joe was just too much for me to take. I said, “Joe, trying to compare an Absence seizure to a Tonic-clonic seizure is like comparing a fart to a tornado.” Yes, certainly, all forms of neurological impairments like epilepsy are unfortunate and can be difficult to manage. HOWEVER…when you make yourself a victim, that funny tee shirt with the red and white bullseye becomes custom fit to you, and it’s tough to get off.

The best thing to be done in these situations, is for me to leave, and leave I did…with many shocked faces behind me. You know…my husband often stares off for more than 20 seconds…should we shove him in an M.R.I. machine?



August 01, 2008
Filed Under (Show me the drugs!) by svana

The early summer of my thirty third year, life changed for me and became very interesting.

One day, while out for a girls lunch with my daughter I had an episode. At the time I had no idea what was happening…my body didn’t work, my brain didn’t work and for a moment, I didn’t recognise one of the most precious people in the world to me. Honestly, if I hadn’t been so scared….I would have laughed, shook my head and said, “How typical”. I had a Bi-Lateral Focal Seizure.

The restaurant we were at would not let my daughter use the phone to call her Dad…at the time I couldn’t be bothered to carry a cell phone because I didn’t need to be in touch with anyone *that* badly. I was told to use a payphone up the street, with a generic and dismissive hand gesture. I wasn’t even sure my legs would support me or my mind would guide me, and my then six year old child, certainly could not go on a trek to find this elusive payphone. I don’t need to tell you how angry I was. Thankfully, we ran into another Mom from my daughter’s school, and she called my husband. Oddly enough she works full time with twitchy folks like me….ahem, epileptics.

I had uncontrollable tremors on my right side affecting my hand and arm, numbness in my right leg, no peripheral vision on my right side and could not make sense of anything….my brain had been put into a blender without my consent.

Moving on…

As luck would have it, two of the Emergency wards had combined into one, starting that day….and it was a nightmare for anyone who could walk in under their own steam. The Triage nurse, bless her, held her clipboard up in front of her eyes while shouting out her scriped question, “Is anyone having trouble breathing?”, while I’m sitting on the floor, as they only had four chairs available, beating my right hand against the wall to see if I could restore any feeling to it. Honestly…it didn’t help…but it seemed entirely logical at the time.

The third time our dear triage nurse walked into the waiting area, doing the same darn thing with her clipboard, my Husband lost his temper. He said, “Does not being able to feel the whole right side of your body count?”…he was glorious in his anger, and my hero. They blitzed me into the ward and started peppering me with questions.

Now the really funny part is when the two young male residents come in to do an ECG….being very careful not to expose too much skin while attaching the adhesive pads. I said, “Guys, I used to tan topless…I’ve had a child…in front of a male doctor, just put the damn pads on already”…sheesh. In the grand scope of things, they were far more embarassed by bare breasts than I was…and they are mine, darn it. My heart, at it turned out was perking along quite well….my brain was a totally different issue altogether.

The people who know me would say that my brain hasn’t been normal for quite some time, and I’d be inclined to agree. The damn thing is, now we had half arsed confirmation that the medical community agreed. After eliminating possible diabetic reaction, heart issues and everything else you can do, short of stuffing me into an MRI; the doctor on staff presented me with a prescription for Dilantin and the glib diagnosis of Epilepsy. To say I despise prescription meds is an understatement, so I was not about to start popping pills without having a damn good idea of what the side effects were going to be.

I don’t know about anyone else, but for me….even the most *harmless* drug has extreme results. If there is a category listing for side effects that says “VERY RARE” or “Snowballs Chance in Hell”, that’s what I’m likely to experience. Imagine my joy when I researched Dilantin….an antispasmodic that makes you have seziures, what the hell is the point? So, after several discussions with my long suffering neurologist, the pharmacist and most importantly my husband and daughter; I decided not to take the meds.

My neurologist was not pleased with this decision, and was graceful and kind when he fired me as a patient.

I feel good about my decision because I now pay far closer attention to how I live and what is truly important to me. I know many of the triggers for my seizures, some of them I can work around, others I can’t….but I live the way I choose to, and that is vital.