My wife is a ticking time bomb...and I don't have either the expertise or the pliers to crimp the wires that are connected to that bomb.
She had what's called an AVM about ten years ago...an arterio-veinous malformation in her right lobe of the brain. That was before I met her. It was a near death experience. She was induced into a medical coma for several weeks, her skull was opened up, the gnordian knot in her brain was excised, the piece of skull commonly referred to as a "flap" was refrigerated pending her recovery from surgery, and she was patched up as best as can be by her attending physician. Since then, she has been on anti-seizure meds.
They had to go through several meds, because, and again, this is prior to my coming into her life, she had allergic reactions to some of them. They settled upon gabapentin, the generic version of Neurontin. She takes three 600 mg pills a day. They seem to be losing their efficacy.
Her seizures are more frequent, more strong, and there are side effects that I have only noticed in the last several months. The immediate aftermath of a seizure is often accompanied by a temporary loss of short term memory. As well, she is experiencing a loss of coordination after some seizures...to the point where I feel I need to hold her and make sure she doesn't lose her balance and fall immediately afterwards. The seizures are becoming more frequent at night...formerly a respite from these episodes. She has, on occasion, lost control of her bladder during these seizures, which is also new. She just turned 60 this month...so perhaps some of these reactions are attributable to her getting older, though I somehow doubt that.
I'm scared. I'm unemployed. We don't have insurance...and I don't know what to do. We married, against both of our inclinations to do so...not because we didn't love each other...but because we had each gone down "the aisle" twice before, on my part, and 3 times before on hers. We weren't inclined to do the whole "marriage thing" again, but we did, at my suggestion, because I was working at the time and had good medical benefits. Seemed a shame to waste them.
Now I don't have them, and I feel like I have let her down...I can't describe the sense of failure that saturates my life when I see that she needs medical attention that we cannot afford. It makes it hard to even make love to her at times...I feel unworthy. Lacking. Undeserving of affection.
To her credit, she doesn't allow me to wallow in those sentiments for very long...but they are, undeniably, there.
I need help. I need advice. I need someone here who knows about these matters...there must be one or two...the question is will they even see this diary...to give me a compass point.
Are you there?
Pertinent details:
Her brain surgery occurred almost 11 years ago. Her induced medical coma lasted almost 4 weeks. The AVM was removed, and a shunt was implanted in her brain.
The aftermath of the surgery left her with some impairments. Her peripheral vision on her left side is almost non-existent. That led to her having a couple of auto accidents after recovery, and subsequently giving up her drivers license. To this day, if I approach her from her left, she often doesn't see me. She was also left with some obvious cognitive dysfunction. She can read literature or history, and comprehend, absorb and later recount every detail of what she read. But to read a cooking recipe, for example, which entails time sequencing and multi-tasking, and attention to detail...she can't do it. She can cook just fine from scratch, from memory...but following instructions is a real challenge.
Spatial/mechanical/coordinational tasks are challenging. She has the hardest time with simple things like unscrewing the cap on a bottle of household cleaner that requires that you firdt "push down...then turn." Or disengaging the dust collection canister on our bagless vacuum, emptying it, and reconnecting it properly. Things that require orientation of parts...where it makes a difference which side is up, or which side faces one way or the other, are challenging. But ask her for a dissertation on politics, literature, history or culture...and she can wax eloquently.
Those above mentioned symptoms were all par for the course when I met my wife. But there are newer, more disconcerting symptoms over the past 6 months.
The seizures typically don't last very long when they occur...maybe 60 seconds. But they have become somewhat more frequent. Especially at night. Another thing that is new is that they seem to erase her "memory card" for as much as 30 minutes or more...leaving her unsure of what day it is, sometimes even what month it is. Planned events that she was aware of the day before are temporarily forgotten, such as a dental appointment, or a lunch engagement. The whole balance issue seems to be a new development...there have been a couple of times when she has lost her equilibrium and fell after a seizure...not during. Consequently, I am now hyper-vigilant to her breathing patterns. I can usually tell when she is about to experience an episode either immediately before or right at the onset, and if I'm close at hand I hold her in my arms until it passes. Problem is, I'm often outside, as I smaoke and enjoy gardening and the outdoors.
I know she probably needs to go in for at the very least a CAT scan...but what if it's more than just that? I will try sending an email along the lines of this post to her former brain surgeon, but I don't know if he will respond or not. Why should he? He may very well have lost money the first time he operated on her.
I'm wondering if there is, perhaps, a new class of anti-seizure drugs that may have come out in the past 10 years that are more effective and don't pose the same allergic risk...or if the shunt in her brain has predetermined life-expectancy, after which it ceases to be effective...I'm wondering many things. I'm wondering how to take care of this woman...who I love.
It's hell being poor and without insurance when you actually have an issue.