mnvnjnsn's Diary

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2007-09-24

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Room 315B

(NOTE: I’m not trying to make this all about me. I'm really unimportant in the long run. What matters here is how unprepared anyone will be when a debilitating illness hits a loved one.)

I walked in feeling guilty; I’ve been a diabetic longer, my blood sugars have always been worse but my complications amount to not much more than a passing kidney stone, some unexplained myofascial and joint pain and the occasional skin rash. I have never dealt with any of the things she has been going through: neuropathy, retinopathy, kidney failure, high blood pressure, stroke.

And now the gastroparesis. Things you don’t expect happen when your stomach stops digesting. It affects every organ and every nerve. Even if her stomach is empty, there’s still the dry heaving, the excruciating pain and ketoacidosis.

Anything she is given to help her with the nausea and the pain causes awful side effects. And every drug she is given to treat the awful side effects come with its own set of side effects, so she’s never just in pain and dry heaving.

They had been giving her dilaudid and she had become physically addicted. The doctors are not allowing her to eat or drink because they are trying to trace exactly what is wrong with her stomach. So she is in pain, she is detoxing, she is starving. To say she is depressed sounds almost insulting. I don’t know what she thinks about when she’s lying in that hospital room. All I can tell you is that if that was me, I wouldn’t be there. Just thinking about what she’ll need to go through in the best-case scenario is too much for me.

She was asleep when I walked in. Last time I saw her, she was awfully thin and pale, but she was still J - the funny, smart, sociable, sweet person she’s always been. When I saw her on Saturday, I almost thought it wasn’t her. That’s cliche, I know, but I can’t think of any other way to say it. The IV had her so bloated it was stretching her skin. She slept slightly reclined and breathing with her mouth hanging open. Every minute something would twitch - her cheeks, her arms, her foot or her whole body. When she wasn’t twitching, she shook.

My brother in law came in a short time after I got there, and we talked while she slept. He said she doesn’t get much more than 20 minutes of sleep at a time. Depending on what drug they’ve most recently administered, she is alternately hallucinating, puking or delirious. She’s lucid sometimes, and she tries to interact with visitors when she is, but often she would fall asleep mid-sentence or lose her train of thought. And whatever she was going through, there was nothing I could do.

Before Saturday I would tell my mother what to tell the doctor, tell her that the doctors were clearly not getting it and they needed to be bringing in neurologists and running tests and take care of her. I am ashamed that I talked to my brother in law on the phone about pain management, like I had any idea of what she was actually going through.

But those five hours I spent in her hospital room have changed everything. I worry not only about her, but for her husband too. Every day he goes to the hospital for about an hour, then goes to work. He then comes straight back to the hospital and stays until they make him leave. It is literally unimaginable to me what he must be going through. Before I left I gave her as big a hug as I could without getting tangled up in the IVs and I told her I loved her. I think it’s the first time I ever told her that.

Don’t believe House, or ER or that stupid McDreamy show. It doesn’t matter how dramatic the illness or horrific the accident that they show is. It’s not the real thing. It’s nothing close to the real thing. There doesn’t have to be blood or beeping or codes– the real thing is a million times more traumatic and painful; a billion times more emotionally damaging.

Here’s a video of her and her band, Space Vacuum (from Outer Space). She’s the guitar player, and I know you can’t tell from this video, but she’s the strongest fucking person in the whole universe.

7:41 p.m. - 2007-09-24

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