wide the hell awake at 3:15 AM

You know when your body decides to mess with you in the middle of the night?  Like when it gets its little delicate internal clock screwed up and decides that 3:15 AM is just as good as 6:15 AM?  Yeah.  I hate that.

I think my being wide the hell awake at 3:15 AM has something to do with the dreams of violence I was having just before waking up.  Hard to work up a proper sleepy beddy-bye feeling after you wake up in a cold sweat (hey sweat!  I remember you!) after dreaming that you were fighting for your life.

And as I type that, I immediately know where the bad dreams came from.  Seriously, it had been a mystery to me until just now.  Sometimes I’m pretty thick.

Can my body be likened to a homicidal maniac waving a gun around in a home invasion?  Can how I feel while on this healthcare joy-ride from hell be metaphorically similar to how you might imagine you’d feel trying to protect yourself and someone or something precious but exceptionally vulnerable from said maniac?  You bet.  Is that what I dreamt about?  Indeed it is.  At least it was an anonymous gunman (woman) – so much tougher to wake from those dreams where it is my family.  So much more anger on top of the feeling of struggle and adrenaline and need.

But that said, there’s been a strange feeling in the air the last week in town.  Out on the street. Lots of violence in the news.  I’m sure that’s not helping.  That and reading involved papers about acetylcholine receptor antibodies and their constant mentions of paraneoplastic syndrome before bed.  Gotta stop that.

The struggle to see what I’m calling a “very special specialist” continues.  This all not to find out a treatment that works or anything but to minimally rule out an autoimmune response to cancer as the reason my already largely dysfunctional autonomic nervous system decided to just check the hell out sometime in early March.  Oh boy do I fit the bill for autoimmunity here.  Heralding infection?  Yep.  At each stage of this now nearly 10 year long progression, I have had an infection or big body stressing event.  Surgery and Lyme disease in 2002 – OI started getting out of control, lots of unexplained eye pain.  Bad bad bad case of the flu in 2004 – GI symptoms surged and I lost about 35 lbs.  Bad bad bad case of the flu in February of 2013 – gastroparesis and hypohydrisos (I’m being charitable here and not saying anhidrosis since I do still sweat when I’m about to pass out, and I am still waking up in a cold sweat at 3:00 AM, but put me in a 95 degree kitchen cooking soup and I’m dry as a bone).

I currently have calls in and referral processes going at a few very special specialists’ offices.

One is a turd.  No, really.  I’m told that he’s a really good diagnostician, the Neuro-House at one of the local BATHs, but the same colleagues who say this also say repeatedly that he has a terrible bedside manner.  I’d like take a moment to propose that this term “bedside manner” be abolished since it is code for basic human behaviors like empathy and the ability to recognize others as humans instead of objects.  What is euphemistically referred as a “lack of bedside manner” would be, in a patient, considered a pathological psychological state akin to high functioning autism or possibly psychopathic tendency.  I’m stating it boldly for some humor’s sake, but I am not joking about the sentiment that underlies this.  These people are not just kinda bad at an ancillary part of what they do.  They are flat out bonkers or massively maladjusted and god I wish their colleagues would call them on it rather than bury that turd in the box of “bedside manner”.

The other is, well I haven’t gotten any info on his “bedside manner” but I have been told by two very different sources that he is very good.  Ok.  My own observations of his lab/clinic is that he is one of those who straddles the line of researcher and clinician.  Can be good.  Can be bad.  And he’s damned hard to get an appointment with.  As luck would have it, the turd is a bit easier.  A clearer clinical schedule for the psychopath.  Go figure.

I forgot that there is another who I had asked a new friend about…he’s got more sensory/motor neuropathy stuff going on and sees someone at the Big Granddaddy of all BATHS who he likes a lot.  I wrote earlier about calling her office, got a bit of a rebuffing…letter from pope, etc.  She and that group are not out of the running, but I have better “ins” at the other two (turd and research guy) so I’m more aggressively pursuing them right now.  We’ll see which lucky bachelor it ends up being.

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  1. I’m up with ya!!! I have the most insane dreams when I’m sicker too.
    I swear I need more sleep because my mind rarely rests.

    I hope you get some better sleep stat!

    • Thanks Ana….I’m hoping to catch up a bit over the weekend. And now that I get Monday as a work at home day, I’m not as panicky about the days out implications of such an unrestful night.

  2. Well, we’re all up… But I haven’t gone to bed yet! I’ll sign the petition to abolish the term “bedside manner” just as an fyi. I think you’re almost having night terrors (medical explanation Dr. House?). The only good news I see is that you dream, so you get REM sleep. No dreams for me at all unless I wake up and then can fall back to sleep and those are so real it’s like I’m not even dreaming. Odd? I usually make it though the night if I can sleep on my day schedule, so hardly any REM in sight. When I talk to you in the a.m. I haven’t gone to bed yet–what a joke!

    I hope your nightmares are just from a build-up of stress and will go away when you get some answers. I used to have a dream every night (about a 2 yrs post-illness) right after I fell asleep that a guy got into my apt. and was on top of me and it would wake me up, too. So scary! I know that feeling and it isn’t good. I think I would scream like you did that one time. Yikes. Hope you can sleep more on the weekend. Oh, I get horrid night sweats (cold kind that soak the sheets) in the winter months and have no clue why. I presume that’s an ANS issue, as well, as I’m usually freezing. Well, drink lots of your coffee today…

    • Mmmm, coffee. I do get night terrors, runs in the family. Sort of. My siblings and I all have something or another. My sister talks in her sleep (like full conversations) but also, rather paradoxically, has had that paralysis thing where part of your wakes up but apparently the motor cortex is still taking nappy poos. My brother, holy crap. He’s downright athletic in his sleep. Sings, gets up, cries, walks around, does things, says he’s looking for something, tries to pee in the closet…then occasionally lets out a blood curdling scream. Just delightful. And my parents didn’t think there was anything wrong….

      Coffee. Yes. Coffee and cat – who was like “holy crap you’re up! play with me! here’s the mouse toy. play with it. notice it’s near the catnip dish. Fill it. Fresh nip! play! mouse!”

      I hate that you get no REM. I agree that the sleep sweats are not normal sweats. I think I’ve demonstrated that fully now. The sleep sweats are part of why I didn’t realize I was losing my sweating ability. Who’d think they were losing the ability to sweat when every night they wake up soaked in it and shivering?

      • Yeah, night sweats are tied in w/EDS or something, but some meds will do it if you switched anything. I got in on the higher dose of nortriptyline.

        Omg about Little Brother! I had the great experience of residing with a sleep walker. He was always looking for the bathroom in the W/D closet or some random place and if you tried to rouse him, he’s about knock you out. They are totally comatose. Freaky! That’s genetic or was in his case I recall. Hmmm.

        I wish MM would play with her rats. She stopped after the amputation and I keep them in a box that’s here with us and pull them out on occasion and blah. She only like strings so they have long ribbons tied to their tails… Lol! I pulled them out a few days ago and nothing. I slowly drag the string right over her paw and she just ignores it. She lost her “smeller” yrs ago due to a virus so she can’t even smell cat nip. What a crappy, crappy hand!

      • no nip? awful. Although I guess some cats are not sensitive to it, so it’s not a universal cat thing. but to lose nip, well, I guess we can relate to Ms. M on the front of losing once enjoyable things. I hate that she can’t enjoy her rats. That sucks. Anya’s favorite “toy” is a black skinny ribbon. She’s a bug hunter if ever I saw one. Tracks and attacks shadows on the wall and floor too.

        Sleep walkers are so creepy. Don’t you think they shouldn’t be called sleep walkers, since they are usually doing a hell of a lot more than just “walking”!?

      • Night Stalkers like the real one.

        It is so sad about Ms. M. 😦 I felt we were meant to be together due to the crappy hand–I just hope this drug works. It only will if she has a certain mutated gene. I REALLY hate that I won’t know if it’s working until it doesn’t, not that I want to think that way. It’s easier in animals that can’t have surgery b/c the tumors will shrink away (or not). Ugh. I feel like I’m in the storm now with no end in sight and am already feeling around on her, but her incision is so weird (good surgeon to get clean margins which means nothing). He sewed her skin back up so it was quilted almost (?) and now looks like a keloid scar that I hope goes away. She also has this lumpy thing at the bottom, like he cut a triangle and then stitched a wide section together? Incisions are lumpy so even more freaky. No clue, but I can tell her white spot (former armpit) is moved or gone. Trying to figure out how he did the surgery, but he was trying for the widest margins (again doesn’t mean much) and the minimum is over 1″ (3 cm) in every direction, which he may have gotten everywhere but underneath. Poor MM. I just hope she doesn’t spit out the med tomorrow night (tonight). I have to wear gloves as it’s toxic so all set w/my latex-free I got today. OK, off to bed! Hope you have an OK day. 🙂

  3. If other doctors tell you that this specialist has a bad bed side manner, I think that is code for
    “this guy is an asshole”. I have many sleepless nights too. In fact I turned out the lights about 1:00 am last night and I woke up about 5:00. Not enough sleep for me. My son used to sleepwalk when he was little and it scared me to death!

    I hope you have a great weekend and get some good sleep!

    • Thanks Mo. I think you’re spot on, he probably is an asshole. I do need someone to check me out for two things in particular, one rare and hard to treat and one less rare but more immediately terminal. :/ so I figure if asshole is at least going to do that, and asshole’s truly qualified and can bring that to bear on my case, then I’ll see him. Really hoping the other guy comes through first though.

      Sleep walking son, it was bad enough when it was my little brother. I think it would be heartbreaking to see your child doing that. It’s so troubling!


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