In case I forget.

Feeling rebelious
November 26, 2006, 11:40 pm
Filed under: Dr. Neuro B, Fear, Mental Health, RX, Seizure

I have this horrible urge to be a non-compliant patient. It is totally foreign to me. If I go to a doctor it is because there is something wrong. I’ve been pretty lucky (Except for Dr. Neuro A) with doctors. I’ve heard horror stories. But my Dr. PCP is awesome, and I have real faith in my Dr. Neuro B. Hell I think I’ve even found a counselor who isn’t rude, obtuse, ineffective, or just plain abusive. (Crossing my fingers on that.)

But. A couple of weeks ago The Husband accompanied me to my first follow-up with Dr. Neuro B. The burping is bad. I had some real improvement back when I was at about 175mg a day but I was still in the 10-15% range. As I increased to the original target dosage of 300mg, it slowly got worse. At the follow-up, Dr. Neuro B told me to up it to 400mg and come back in 6 weeks. I asked him – how long will we do this? He said, “Until you are symptom free or until it makes you sick.” Now, these days, I’d be happy at 10-15%. Honestly. I’m back to 85-90% a day, which in my mind says the Lamictal isn’t working at all. This is where I was before when the Lamictal quit working. This is where I started out at, almost a year ago now. This IS NOT WORKING.

And Dr. Neuro B says 10-15% isn’t good enough. He says that until I am 100% seizure free that I am not in good shape. He said “You’ve never had a complex seizure until you’ve had one.” I know that is true, but I also know this drug IS NOT WORKING.

So I am tempted. I want to drop back down to 175mg. It is the level where I got the best results before, and it is the level where I got the best results this time. But I’m a very compliant patient. I work on the theory that if I’m not going to do what a doctor tells me to do, why the hell should I bother to go? So I’ll wait until the first week of January. I’ll keep swallowing these pills. But I have no hope. And that’s a pretty sad way to be. I don’t think anything will ever work. I think these seizures will continue, I think I will continue to have trouble getting a breath. I think I will either one day not be able to get air in at all and smother to death, or that the seizures will get worse and I won’t be able to drive or function. I could see myself becoming one of those statistics – one of those Epileptics who can’t take it anymore and decides to make sure it quits happening.

I’m not trying to be over dramatic. I’m not threatening anything. But I can sympathize with the folks who have taken that route. And I can see how there might be a point in my future when I come to be that desperate. I really don’t think there’s anything else that will work.


Satin Pillow To Cry On
November 12, 2006, 8:00 am
Filed under: Dr. PCP, Fear, Husband, Mental Health, RX

I’m a sucker for those smarmy old Tammy Wynette songs. And even though I don’t use satin sheets or pillows (100% Egyptian cotton for me, baby!) I did wake up in tears this morning. It was from a dream – which I won’t torture you with – where I was incompetent and frustrated and getting yelled at for doing a bad job.

I got out of bed and left my husband to snore in peace. I came into the living room, got a diet coke, and swallowed all my morning pills. I am 42 years old. Every morning I swallow five pills, all of them prescribed to treat medical conditions which, if I wasn’t lucky enough to have diagnosed and treated, would probably eventually kill me in a slow, painful, unnecessary way. Every night I swallow yet another pill. These days I am also working my way through a Medrol dose pack, a big bottle of muscle relaxers, and a bigger bottle of narcotic pain relievers. When I go to bed at night I set my alarm for some cold, dark hour so I can swallow more of those last two. This makes it possible for me to not wake up literally screaming in pain six hours after the last time I swallowed that set of pills.

There is something wrong with my back. Something hideously painful that was so bad Thursday night that my husband called in sick to work Friday morning and hauled my creaking ass to Dr. PCP’s office without an appointment because he said I had screamed on and off all night, whenever I tried to move in my sleep. I only remembered the horrible pain just before I woke up. I was too exhausted to remember the rest of it from three nights of the same pain low in my thoracic spine. So Dr. PCP loaded me up with drugs that will hopefully settle everything down back there. I have my fingers crossed double.

Because of the narcotics and the muscle relaxers I’m not in pain right now. It’s six am and I had set my alarm to wake me at three am to swallow more pharmaceutical magic.

So anyway I woke up and came in here in tears from a bad dream. I sat down, ran my email, swallowed my regular morning drugs. Even though I have to wait an hour after taking all those drugs before I can have breakfast I am very hungry. I opened the electronic version of my local newspaper and after just a couple of minutes of headlines, my mind went to my Ruger, which this morning is sitting on the kitchen counter. I had this urge to go get it and blow my brains out.

I am not suicidal. I have a very low opinion of “Well I’m just going to KILL MYSELF!” people. But this morning, it sure went through my brain as a good way to deal with all this. I am so tired. Tired of being sick. Tired of being needy, pathetic, in pain, scared. I feel like I have become my mother, something I worked hard all my life not to be. I am in pain, I have a whole colony of plastic amber Walgreens bottles with child safety caps on my bedside. I wake early in the morning and watch the sunrise alone, worried about what will go wrong with me next. Because it has gotten to the point where it seems like there will always be a next. I feel very old, and I feel like a burden to my wonderful husband who only 15 years ago fell in love with a vibrant, happy, creative, funny, afraid-of-nothing auburn haired firecracker. I am no longer that woman. I feel so much like less than I was.

I tell myself that this will pass, that this abject sadness is all the drugs. Narcotics and steroids can make you think crazy things. I tell myself that maybe not tomorrow or the next day, but that maybe the day after that I will feel different. I used to have faith that I am a good judge of myself and that I am smart enough and honest enough to usually be right. I tell myself a lot of things in my head. But I am also a woman of extremes these days. This morning, with soft pink light in the sky, I am a woman of extremes. In just the last 30 minutes I have gone from Tammy Wynette to the Butthole Surfers as I sit here wiping my tears and drippy nose on my sweater. I’ve never been one of those women who is beautiful when they cry.

They were all in love with dyin’
They were doing it in Texas

Not this again.
November 7, 2006, 2:27 am
Filed under: Dr. PCP, Fear, Husband, Mental Health, Seizure

The burping is worse. For over a week now. I’m in the 50% range. The confusion is coming back. The frustration. The fear – big time. I’m starting to have trouble reading again. I have no motivation to do anything. I’m just not doing very well.

I go see my PCP again tomorrow. I want to tell him all of this, but I won’t. It’s not his responsibility and lord knows he’s already dealt with enough of my crisis state already. I’ll let him stick me for blood work for TSH and Ha1c. I won’t tell him my back still hurts pretty damned badly. I won’t tell him about the pain in my foot. I won’t tell him the cloud of doom is back, following me around like a three legged puppy. When he asks how I’m doing I’ll tell him the truth – that I’ve been a hell of a lot worse. I know this sounds stupid but…I feel like when I see him all I do is complain and feel sorry forĀ  myself. I’m not telling my husband about all of this either. He obviously knows the burping is getting worse but the other stuff I can hide from him. He’s got enough pressure with his promotion and me not working. I just feel lost.

I don’t think the Lamictal is working. I think it’s stopping again. Not like it did last time, just overnight, but slowly. I’m not looking for a job. With the burping this bad I don’t know if I could get through an interview, much less be at work eight hours a day and not be humiliated. I’m just not doing well at all these days.