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Learning To Live With It


minsocal
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After years of frustration and conflicting medical opinions, I was informed today that I have been treated for the wrong condition and taking the wrong medication. Here's the problem. The correct diagnosis is that I have a rare neurological disorder known as cataplexy. What has been happening is that any strong emotion triggers a state something like REM sleep (dreaming). I get double vision, slurred speech, and drop things. At it's worst, my knees buckle and I "grey out", meaning I'm conscious but can't see well or speak. I've probably had it for a long time in a mild form and it's gotten worse with age. The diagnosis does explain a lot. It seems strange to me that I couldn't get a better diagnosis earlier, I seem to be a textbook case. Probably my mistake in not being more assertive with my doctors.

 

Now that I have a name for it, I am also aware that I cannot take the antidepressants usually prescribed to control cataplexy. So after years of opening up to my emotions I now have to control them psychologically or risk an attack. That, and I've been cautioned about driving. So, my mobility will be somewhat limited until I'm more confidant.

 

That's about it. I have to learn to live with it. But I do have a suggestion for those who read this. If you are not satisfied with a first opinion, do get a second or third opinion if you can.

 

In that last few months, I have engaged in several intellectual discussions here about the nature of G-d. I have enjoyed them. But I discovered last night that something wasn't guite right. In my own way, I needed to work out something private and very emotional with G-d. It hit me that by taking the intellectual path, I was avoiding my own emotional reality. My beliefs are not 'rational' and never have been. But they are my beliefs, even if I'm not using the word correctly.

 

And this I will also learn to live with. I need my emotions, but also need to modulate them.

 

Myron

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Thank you for sharing. The problem of diagnosis is a weakness, I think a serious weakness in our health care system that is not much talked about publiicly. I think its too uncomfortable for everybody. That is of missed diagnosis and mis-diagnosis, resulting in much needless suffering, and even probalby more commonly than we'd like accept, a cause of many untimely deaths.

 

I am so glad to hear this situation is getting better on track, Myron.

 

Jenell

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