Firsts

I’ve spent over a year experiencing “firsts”. I’ve finally accepted the fact that the Universe is throwing lessons my way and if I keep closing my eyes and going “la-la-la-la-la”, this train ain’t gonna’ stop. I’m going through a period of growth and change in my life. Again.

Tomorrow I get to experience another “first” – one I’m really not looking forward to. One that terrifies me. I’ve debated blogging about this, though, because this particular experience is nothing new to a lot of people out there. I may come off sounding like a whiny little snit. If I do… :: shrugs :: I can’t help it. Try to see things from my perspective.

Tomorrow I will officially be uninsured. My COBRA insurance expires at midnight tonight. Because of my epilepsy, I can’t get healthcare coverage through any of the insurance providers. My COBRA coverage can’t transfer to an individual policy because they’re based out-of-state (something to do with insurance companies not being able to provide coverage across state lines, even though Blue Cross is Blue Cross in WA and in TX). The only insurance I can get right now is the State High Risk Pool, which is ungodly expensive. My other choice is to go 6 months without any kind of coverage and apply for the Federal High Risk Pool, which is affordable. But asking someone with epilepsy to go 6 months without healthcare coverage is asking a lot. Just like asking someone who has a heart condition, or asthma, or any other condition that required regular visits to a specialist and expensive medication.

I haven’t been without insurance coverage since 1987. Yeah, I know… last year I was saying I hadn’t been without full-time employment since 1987.

I don’t like being afraid, damnit. I feel like my last “safety net” is going away.

The Great King COBRA Rant

I can’t convert my COBRA insurance coverage because Premera BCBS is out of state. I have to apply for individual coverage here in TX. They can’t transfer my existing policy because it’s a group policy. I’m an automatic “deny” on my healthcare app with BCBS because they want you to be seizure-free for 5 years before they’ll touch you. They suggested the High Risk Pool.

On the Federal High Risk Pool, you have to go without any insurance coverage at all (note, COBRA counts as insurance coverage) before they’ll cover you. Texas has a State High Risk Pool but if you’re on COBRA and your plan has a conversion option (which, technically, mine does; I just can’t use it because they’re based up in the northwest part of the country and I’m “out of state”), you have to wait 6 months before they’ll cover you.

This. Is. So. Fucked. Up.

I thought “healthcare reform” was supposed to help people who can’t get insurance. WTF? Am I missing something?

My surprise this morning

Those of you who follow my blog have probably figured out by now I have epilepsy. In November of last year, my neurologist added the generic form of Keppra to my seizure control meds (Levetiracetam). He did so in order to better control the brief, 2-second, simple partial (or, Absence) seizures I would have. For those unfamiliar with these, a 2-second simple partial seizure appears to someone else as though the individual is momentarily distracted. The person having the seizure is aware, but it’s more like a “blip” on the radar. That’s the only way I can describe it. But I digress…

I should note, prior to adding this medication I was never photosensitive. That is, strobes did not easily trigger seizures for me. Laser tag was out, but I could safely go to a dance club. In February, that changed. I was out with the girls; we were dancing and having a great time. As the music changed, so did the strobes in the club. I could feel that “out of body” sensation. I just stopped dancing in the middle of the song, looked at my best friend and told her, “I need to get out of here.” We were all on a cruise ship that weekend. I made a B-line for the door and just sat on a bench in the hallway. Lyl came out with me. She was asking me the standard questions. I could answer her but I was slow to respond. Everything was slow. It was a simple-partial seizure, but it was longer than the 2-second blip I used to have. This was more of a “train” of simple partial seizures, coming in waves (and no, not the waves under the boat…<g>).

The same thing happened the next night at the dance club, but not as bad.

I told my neurologist about this, and he increased the dosage of the Levetiracetam. In March, I had a full blown generalized seizure. At this point, I can’t drive for 6 months.

My neurologist increased the dosage of the Levetiracetam again. Four weeks later, I had a full day of the simple-partial seizures, where they come in back-to-back trains.

He increased the dosage again. I had another train of simple-partial seizures 3 weeks later.

At my next appointment, he started to suggest increasing the dosage one more time. I told him I didn’t think that was working. I didn’t think the Levetiracetam was working, and pointed out my threshold seems to be lowering as we increase the dosage. This is what I like about my neurologist – he listens to his patients. He reviewed the overall pattern and agreed with me. We discussed weaning off the Levetiracetam, which is exactly what I’ve been doing over the past few weeks. I haven’t had any problems yet (:: knocks on wood ::).

My surprise this morning? Just out of curiosity, I was doing some research on Levetiracetam. I found out there’s a class action lawsuit on the medication. It seems the generic for Keppra isn’t quite as effective as the brand name. Patients who were switched from Keppra to Levetiracetam experienced an increase in their seizures, causing them to lose driving privileges. It is being stated that persons taking the generic “could lose driving privileges due to the fact it can onset more seizures, it will also impair them from employment or school with time lost.” There have been cases indicated of injuries from the drug. It was noted that at least 59% of patients on this medication had more recurring seizures.

Now, that statistic is from an article written in 2010. However, I found other sites indicating the class action is still being pursued. It’s possible my neurologist is unaware of this (and I do plan on asking him on my next visit). Regardless, why is this drug on the market?

I’m floored.

It’s Electrifying

Some of you may have read, “And The World Goes Sideways”a post I made on what it is like to experience a Simple Partial seizure. Today, I’m writing about the other types of seizures I experience, and the aftermath.

When I experience a Partial Complex seizure, I have no idea anything is wrong. If you ask me a question, I’m unaware my responses are slow. I might even think I’ve answered you already and just stare at you. Then I’ll argue with you that I just answered you, I’m quite fine, what’s wrong with you? Ask anyone who’s seen me go into one – while I’m still conscious, I’ve quite the attitude.

This last seizure I had, no one was interacting with me. I was alone, at a computer, taking a certification exam. I remember sitting at the computer answering questions. I remember looking at the timer on the computer. I don’t remember three hours passing; it didn’t seem like that much time had passed. I do remember panicking that I’d only answered 20 questions in that amount of time. I vaguely remember talking to the receptionist when I walked in. I don’t remember parking my car, but not remembering things is most likely due to the seizure activity itself.  In hindsight, I can see where I must have felt like I was in a vacuum because remembering everything seems like the events are filtered through a vacuum. It’s almost like remembering a dream, but I know it really happened. Then I black out – there is this space where I remember nothing. That, of course, is where my seizure progressed from a simple partial into a partial complex and I lost consciousness.

The after affects are … frustrating.

When one experiences full convulsions like that; well, it’s an electrical storm going on in your brain. Overall, you just feel “fuzzy”. There’s no other way to describe it. For a few days, you feel out of touch, maybe like you’re coming down with something, or over-medicated. It also affects your short term memory. I generally lose events from the previous couple of days. I have to go through my calendar and my “to-do” lists and figure out what really got done. I have to figure out if I made any appointments or not. I have to, essentially, recreate the past couple of days, just to be sure I don’t drop a ball or double-book myself.

And yes, it’s a scary feeling. It does cross my mind, “What if I wake up from one of these and don’t remember my husband? Or my kid? Or who I am?” I have to push that thought aside and just not think about it. If I allow myself to dwell on such thoughts, I’ll drive myself crazy. Sometimes, it’s healthy to take the Scarlett O’Hara approach to a situation. So I’ll just think about that tomorrow.

I was discussing the memory loss, the overall “fuzzy” feeling and after affects from my last seizure with my Neurologist yesterday. He assured me that all this was normal, and compared having a seizure to shock treatment (if any of you are old enough to remember when that was considered a valid form of psychotherapy). I never thought of it that way, but he had a point.

Back in the 1950’s (well before my time), Electroconvulsive Therapy was considered the “treatment-de-jour”, in which electric currents were passed through a patient’s brain, deliberately triggering a brief seizure. The theory behind the treatment is that the therapy causes changes in the brain chemistry that can reverse the symptoms of certain mental illnesses. However, it was being prescribed for depression, anxiety, things that could be triggered by hormonal imbalances, etc… My point is, back in the ’50’s, when it was widely used, I can only imagine how confused and possibly traumatized some of these patients felt afterwards. I would imagine any improvement they showed was probably out of fear of their next session, rather than true progress. I am appalled to learn this treatment is still in use today. Although considered much safer and used less frequently, they still do this?? I am horrified.

Ok, I got off on a bit of a psychotherapy tangent; but that’s what Partial Complex seizures are like, for me.

Letting go

I’ve never been one to let go. I’m happier when I’m in control over what’s going on; or, at least when I have some semblance of control of events.

Next week, my husband is out of town. I have to rely on someone to get me to a doctor’s appointment. I can’t just go there myself, at my schedule, when it’s convenient for me. I have to go way early & wait…. she’s dropping me off and picking me up. At least I have transportation.

Damnit, I feel like an old lady.

I can’t go out and do the things I used to do anymore. I have to make arrangements. And, damnit, it seems like every time I turn around, my husband is giving me this worried look or asking me if I’m ok. Just….. Fuck. I feel so frustrated and so useless. :: headdesk ::

Driving Miss Daisy

Or, why it rubs my fur the wrong way to lose one ounce of my independence…

I had another breakthrough seizure Wednesday. This one was a Complex Partial seizure – full convulsions. I vaguely remember sitting down to take the certification exam. I don’t remember 3 hours passing by. I do remember panicking at having only answered 20 questions. No, I have no idea if 3 hours had really passed by or not. You’re kind-of disoriented when these things happen to you.

The next thing I remember is waking up in the back of an ambulance, and that’s a bit foggy. I don’t remember all the details of how I got from the ambulance to the emergency room. I was able to answer basic questions, I think… but I don’t remember anyone asking me questions. My husband showed up; so at some point I must have given them his cell phone number.

So now I lose my driving privileges for at least 6 months, providing I remain seizure free for that time frame. I’ve lost my independence. I have to rely on other people to get me from A to B. Jesus Christ on a fucking pogo stick, who is going to want to hire me when I don’t have my own transportation? :: headdesk ::