Floating…

I write about the good, bad and ugly of progressing through this illness. Tonight, I bring to you the stoned. Yup, this new medication has me completely whacked out high. It’s not doing a thing for the pain yet, I’ve been told that adjusting to this new medication (Gabapentin) could take a few weeks.

I have mixed feelings about trying yet another medication that is experimental. Gabapentin is used for nerve pain, we’ll have to wait and see if it’s at all effective for bone pain. In the meantime, I’m feeling doped up and sleepy. At least one good thing has come out of it, I’ve had a few nights of decent sleep.

It’s perplexing to me why anyone purposely takes drugs to get high. I don’t wish to pass judgement, do whatever floats your boat as long as others aren’t hurt in the process. I however, quite detest knowing that my brain isn’t working with all pistons firing. It’s distressing to know that my judgement is impaired, that I’m not able to fully take in all that is going on around me right now.

It scares me silly that Erdheim-Chester disease can spread to the brain. If given the choice between having brain impairment or the physical bone pain that I experience, I’ll keep the bone pain without hesitation. It’s frightening to think that one day I might experience both.

An important component of my care plan is knowing that I have two people whom I trust implicitly as my powers of attorney for my medical care. Two people who love me, and will do whatever is necessary to ensure that I’m as comfortable as possible if I’m unable to make decisions for myself.

Before posting this, I’ll be having it proofread to make sure that I’m not offering drivel to you. Then I can go back to staring at the wall for a few hours. I do hope this phase passes soon, I really do have better ways to use my waking hours.