I’ve talked a little about having Epilepsy in previous posts. I’m also a HUGE encourager of being your own advocate when it comes to your medical care. Do your homework…don’t just take the first opinion and run with it.
Which leads me to my post today. Actually, it’s a bit of a rant.
I’ve had epilepsy almost all my life, and I’ve been on a “medication cocktail” for over 30 years. My gosh! Where does the time go?
I think I’ve tried nearly every AED (antiepileptic drugs) in the free world. One grew hair in places where a woman shouldn’t have hair (the backs of my forearms, my knuckles, and my jawline), one medication made me so dopey and sleepy I was nearly catatonic for the first few days (I couldn’t tolerate that one), one reduced my platelet count so low that my blood wasn’t clotting when I had to take the obligatory blood tests, and others…well…they just plain didn’t work.
It’s been explained to me that the kind of seizures I have (Temporal Lobe Seizure Disorder) are harder to control with medication and surgery because they “fire” sort of all around the temporal lobe and not in one spot repeatedly. It’s hard to put the “fires” out.
I’ve worked long and hard to come up with a cocktail of FIVE meds and minerals that keep me relatively “normal,” with a few breakthrough seizures here and there. So, when I go to see my neurologist for that obligatory once-a-year appointment, it’s sort of a joke.
“How are things going?” he’ll ask.
“Same old, same old…” I answer.
And then we stare at each other as he looks over my blood tests and says keep doing what you’re doing. And I’m fine with that. But I swear, every year when that appointment rolls around it is SOOOO annoying and SOOOOO inconvenient.
Let’s start with the fact that his office is 45 minutes away from my house and I DON’T DRIVE. You’d think that would be something that a neurologist (who deals with brain injuries all day long and probably has several patients that can’t drive would realize). So now, I have to take off work, my husband has to take off work because he’s my ride), we have to use our “sick time” or just loose the paid hours, AND I have to pay the doctor for his ridiculous waste of time on top of that. I swear there must be a better way. Can’t we just skype the appointment in? It’s the 21st Century. Aren’t we in the technological age? I’ll still pay him, but seriously! This is really a pain in the…well, you get the idea.
So today, I got a call from the doctor’s office to try and schedule the appointment. I was at work and didn’t get the call. They left a message and said they’d give me 2 weeks worth of meds, but I have to get a blood test and come in before they’d renew the prescription. (But they renewed two of the other meds – does that make sense to you?) I called them back to schedule and the answering machine picked up. Now it’s after 5pm and they’ve gone home for the day, and NO ONE CALLED ME BACK. There’s another day wasted in our 2 week time limit. No doubt they will call me tomorrow when I can’t get to the phone and we’ll play tag for a few days. But wait! The weekend is coming which means I probably won’t connect with them until next week which cuts into that 2 week time frame. THE CLOCK IS TICKING PEOPLE!
There has got be a better way. It isn’t like I take meds that can be abused or are addictive. For God sake! I’ve been on them for 30 YEARS! I think I’ve got it covered, thanks.
If someone has figured out a better way, please let me know. Because until I can teleport to wherever I need to go, I guess I’ll just have to Uber-it. Though the last time I took Uber, the driver came to a full stop on the freeway while trying to get to the off ramp they wanted! That’s a post for another day! LOL!
Here’s hoping your chronic conditions don’t get the best of you. Feel free to share your story below.