sirenoftitan1 (sirenoftitan1) wrote,
sirenoftitan1
sirenoftitan1

To Make a Long Story Short

Josh was diagnosed with narcolepsy a few weeks ago.  It's not the way the most people picture narcolepsy; he doesn't randomly fall asleep or drool on himself or anything darkly comical like that, he is just constantly tired and can't concentrate on anything.  As I understand it, a narcoleptic's sleep patterns aren't correct, and when he wakes up, his brain doesn't know that he has slept.

The only actual treatment is Xyrin, more commonly known as GHB or the date rape drug.  It costs over $1300/month, and insurance does not cover it, not even Medicaid.  It would actually be cheaper for him to fly to Mexico every month and smuggle it back.

So, in lieu of real treatment, most narcoleptics take stimulants to mask the symptoms.  The newest one on the market is Nuvagil, which doctors really like because it is non-addictive, but a certain percentage of users have weird side effects, including hallucinations.  Josh is one of them.  Now he is on amphetamine, and it seems to be working.

However, the fact that it is temporarily under control does not change the fact that this is still a big scary thing.  Amphetamines have side effects, including over-impulsiveness (i.e. randomly moving out?), serious crashes if he misses a day, and heart damage over time.  Also, it is a degenerative disease, so the fact that this works now hardly means that it will work forever.  There are other concerns, too, like the fact that it becomes a huge liability for him to drive.  He has never fallen asleep at the wheel, but if he were to get in an accident, you can believe that it would be an issue.

There is a lot of uncertainty about what will happen in the next few months, years, etc., and I wish I could say that I made the brave and loving decision to stay with him in spite of it all, but I can't, because the truth is that I have to make that decision every single day.

And I am scared.


(I am leaving comments open after much internal debate, but please don't leave patronizing "advice")
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  • 8 comments
Good lord, woman. I don't know if I'd have the strength to stay with someone through that - and that feels ugly to say, but it's the only truth.
Either you can take it, or you can't. That's all I got.
You are heard. I won't give advice, but I will say, that courage and bravery are defined by the presence of fear. If you weren't unsure or afraid, you wouldn't be brave, you'd be stupid. Does that make sense. I know it's a little trite.

The other thing, uh, is, have you ever considered selling the amphetamine to pay for the GHB? Hope you're not offended by the suggestion--but there are a lot of people out there who pay good money for some amphetamines.
Hahaha, not offended at all, we actually discussed many illegal ways of obtaining GHB.
That is a horrible choice to have to make even once.
Wow, Amy. That all just sounds heart-wrenching. I hope you're doing ok.
Jesus. Well as far as I'm concerned, neither decision could be "wrong". I'm sorry you have to make it.
This is hard stuff. I send you hugs and hear that this is just difficult and scary. <3