Last night

Bad days these days.  Bad stuff at work since April 3.  I may not be employed much longer.  I almost passed out Saturday night.  At least I had a day to recover, this is what I think now when things like this happen.  Not “oh no my weekend is ruined”.  Nah.  That ship has sailed.  I had a rough night last night.  I fell asleep at 10:00 and woke up early, sure it was at least 4:30 AM but it was 12:14 AM.  An hour later, I fell back asleep but had horrible dreams.  So sometimes I write, I don’t know that I’d call it poetry because that sounds pretty lofty.  It’s more abstract prose.  It helps sometimes when what is going on is hard to talk about.

Last night was an April night.

From school, I remember April is rain.  March is kites.  May is weddings, or flowers…

Last night was an April night and the rain fell and the wind rattled the door

which was shut, just not tight.  All night, too loose these days, it rattled around in its frame.

Last night was an April night and the rain fell and the wind rattled the door and I dreamt of biting kittens.

I wanted to swat them off, they hurt so much like needles in my hands when I tried to remove their teeth and claws from me but I didn’t want to crush them.  I was so worried I would crush them, and I  cried out but there was no help.

Last night was an April night and the rain fell and the wind rattled the door and I dreamt of biting kittens I might crush and there was no help.

I woke up screaming.

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neuro today, gone tomorrow

I saw the new neurologist yesterday.  I saw him once before, this is someone who was trained in autonomic function and who has opened one of the only autonomic function labs at a hospital in my area.  Yesterday’s appointment was a follow up to talk about blood test results (negative) and where to go from here.  Oh and to let me know that he’s taking a leave for at least a year because his mother is sick.

Crap.

I liked him.

This is the second neurologist I’ve had since moving back to Big Historic City in 2009 who has left his practice.  He’s trying to do it right.  He says that the practice is going to try to find someone with autonomic dysfunction training to replace him and that he’ll be here until the end of April, asked me to check in by phone or email before then.

So what’s new from the appointment?  Other than “Good bye new neurologist?”  My bloodwork was negative for Antiganglionic acetycholine receptor antibodies and antineuronal antibodies.  That’s good, it means it’s unlikely that it’s cancer and less likely that it’s autoimmune autonomic ganglionopathy.  Then what is still on the table, Mr. Patient asked my soon to be former neurologist.  The most likely is the Ehlers-Danlos, other than that, there’s also mitochondrial disease – it’s hard to diagnose and not very treatable.  Well, better the devil I know, so I’m going with Ehlers-Danlos.

One interesting thing that did come of this appointment.  Sleep.  I don’t sleep well anymore, had a sleep study and I saw it as relatively useless since it just said what I knew going into it:  I don’t sleep well. I fall asleep but I wake up a lot, so much that it basically turns my night into a series of small naps rather than good, restful, sleep.  My soon to be former neuro said that he’d been trying to get the results of my sleep study but failing.  “Oh I can get you those” I say.  “They recommended a follow up study with a CPAP because I guess they say I might have upper airway resistance syndrome….whatever, I just wake up every night in the middle of the night drenched in sweat.  I doubt it’s gonna help that.”  Turns out that I am very wrong about this.  I should have realized, I don’t sweat.  Unless I’m passing out.  That should’ve been a clue that the waking up in sweat was something other than being overheated.  My soon to be former neurologist explained (and I won’t do it justice here, so pardon my paraphrasing):  when you have something like sleep apnea or upper airway resistance – they’re really kind of the same thing, just a little difference in the mechanism and severity – it can activate a sympathetic response (hence the sweating).  There’s also evidence that it can contribute to the development of cardiac arrhythmia.  Hands up, who just had two weeks of intense palpitations and a racing heart rate for no good reason?  Oooh, oooh, me!  I did.

Ok, to sum up, what he’s telling me is that the waking up drenched in sweat is probably caused by the airway obstruction rather than in addition to (which is what I thought), and that this potentially has much further reaching consequences than a bad night’s sleep.  I’ve done a bit of reading since the appointment, and it sounds like it’s a sort of “chicken or the egg” thing with regard to autonomic function too.  I.e. bad one makes for bad other, although which one comes first is up for grabs.  But maybe fixing the sleep could help with some of the autonomic function.  Gosh that’d be swell.

Now, I just need to get my ass into the sleep lab in the next week or two and maybe this will all have been worth something.

slightly sleepier

Well, I’ve been doing “screen avoidance” for at least an hour before bed for a little more than a week and I think it is helping.  A little.  My bladder’s still waking me up, and I still have at least one drenched in a cold sweat episode a night, but at least I am not feeling like I am just napping instead of sleeping.  So hooray for paper books.

I’ve also added molasses into my diet this week.  I forgot how much molasses makes everything taste like gingerbready christmas.  I added a little bit to the pumpkin pudding recipe and a lot to what I’m calling “gingerbread bread pudding”.  Apparently it’s a decent source of iron, which is good since I cannot take iron supplements without them wreaking havoc with my stomach and gut.  So far, no havoc.  It’s got magnesium too, which I could also use since mine has clocked in low before.

So this week I have tasty christmas-y gingerbready goodness and some sleep, which sure is a welcome change.  I’m up to a pretty stable 125 lbs too, also excellent, and so far this diet isn’t worsening the gastroparesis symptoms.

Got my eye appointment today.  I called yesterday and asked if they had the forms electronically because I have such a hard time writing them out with no time and a cramped hand.  I truly have dysgraphia, always have – the nuns were beside themselves with my handwriting in 1st grade and my second grade teacher made me put my pinkie finger in between every word on the page to keep them from running into each other.  It’s actually gotten much worse as I’ve aged.  Not sure if it’s a neuro thing or what, but it hurts like hell to fill those damned forms out in the office where you gotta write write write and no time to take a break and massage your hand.  By the time I get to the bottom of the first page, it’s turned into totally illegible scribble with missing letters, swapped letters, and totally deformed letters everywhere.  I remember having to soak my hand after exams in college and grad school because it hurt so much from trying to force well formed letters onto the pages of the blue books.  If the doc isn’t a dick, I’m going to mention to him that I think they should have electronic forms.  It’s a frikking eye clinic at a frikkin eye B.A.T.H..  If anyone was gonna have electronic forms, you’d think they would!  The guy I talked to about it yesterday was like “duh? disability wha?”  I’ll call him a Jude, the boy equivalent of a Judy.  He was definitely a Jude.  So wish me luck at the eye doc, hoping he’s not a dick!

season of sleep-lessness

This past week has not been a banner one for sleep.  I am sleepy.  For the most part, I fall asleep.  Sort of.  And there’s the problem.  I fall into this light napping sort of state that is certainly not awake enough to get me out of bed and onto the couch with a book but not slumbering enough to keep me out.  And when I wake like this, it is inevitable that my bladder, now apparently a misfiring thimble, tells me that hey hey hey hey I’m full time to get up and pee!

The past two nights, I’ve had both stomach pain and nausea as well as intermittent shooting pains in my hips and legs.  And electric shock-like feelings in my arms.  While all of the above suck, the shock feelings in my arms are a new sensation, a new trick.  I know what it is, I know it’s a nerve thing.  I don’t know what’s causing it, something mechanical – i.e. a joint that’s slipped and is pinching (I’ve been having a lot of neck pain during the day while I’m up, so this isn’t an unlikely cause) – or a progression of whatever’s up with my nervous system.  Hoping for the former.  Whatever the cause, I’m definitely in a bad sleep phase right now.

The time change is not going to help.  On the plus side, when the clock says 10:00 PM, it’ll feel like 11:00 to me and hopefully that’ll mean I’ll get sleepy earlier.  On the down side, it means when I wake up wide awake at what my body thinks is 5:00 AM, it’s going to actually be 4:00, and it’s a long day that starts at 4:00 AM when you don’t get home from work until after 7:00 PM most days.

I tried getting out and about, thinking that maybe the daylight would help to put me on a normal rhythm.  Got some nice pictures out of it, but not so much with the sleeping.

color photo close up of a tree branch full of red to yellow shaded autumn leaves

This is the time of year when I should be getting BETTER sleep, with the temperatures falling.  That might be a clue.  While the temperatures fell, and we had some lovely crisp autumn days, they have also been yo-yoing a bit over the last week and a half.  We started out with lovely 50 degree days and then shot back up into the 70s, and now back down to the low 60s.  I know from bitter experience that this does not treat my body well.  E.g. the shooting stabbing joint pains at night are a direct consequence of this.A stone wall in autumn woods at sunset

Went for a short walk yesterday, took some nice pictures of the fall color before the rain came in today.  It’ll probably knock all the leaves down that the windy Halloween night didn’t take out.

Some of this, the stomach stuff, maybe could be helped by eating earlier.  Easier said than done when you have to eat two dinners that don’t start until 7:30 PM though.  I have managed to gain back some weight with the two dinner approach and I really don’t want to abandon it.

But I’m not giving up, just need to think creatively here.  I can start bringing two “lunches” to work and eating one late, before I leave for the day.  More weight for the bag, but that’s what my husband bought me an awesome rolling bag for.  It’s not fashionable, but it’s roomy, lightweight, and water resistant.

Another thing I can do is cut down on the phone screen time before bed.  It hasn’t changed recently, but it may not be helping if I’m already in a light sleep phase.  Well, that’s what a good old fashioned paper book is for.  I’ve got Donna Tartt’s The Secret History.  She had me at “classics department” (in a past life, I was a classics minor at a snooty private liberal arts school in the northeast US).

Family time

My sister’s birthday was yesterday.  Although we haven’t been speaking since 2011, her birthday is not meaningless for me.  We had been very close all of my life, save for the periodic episodes of her deciding not to talk to me.  Those started after I got sick(er) and increased in frequency as the years went by.  The first one was in 2005, when things really took a turn for me.  It was a tough year, marked by a bad break up of a long  term relationship (in part because the guy couldn’t handle being yoked to a sicky), a transformation in my migraines to daily headaches, the addition of vertigo, massive weight loss from the then recent state change in my gut, and the onset of debilitating hip pain which now just comes and goes.

The next time my sister stopped talking to me was when I was un/underemployed after leaving grad school due to the inability to manage my health without academic accommodations.  And then most recently, this.  This is the longest period so far, coming up on 2 years.  We’ve had one short facebook chat, around this time last year, when I stumbled upon a news story in the local Big Northeastern City Big Newspaper where our mother was interviewed about her having come to the catholic faith late in her life.  The writer of this piece wanted to show how a parish was still growing despite the sexual abuse scandal that has been sweeping the catholic church for years now.  I don’t know if my mother was put forward by the parish leadership or if she self elected to tell “her story” but somehow she ended up as one of three people interviewed for it.  Her “story” was that she felt bad seeing the effects of the abuse and identified with the church leadership because there had been abuse in HER family and she didn’t know about it until too late and now, like the catholic church, had to deal with the mess.

Yes, she did.  My mother did liken herself to the pope.  And she also did completely and so publicly revise my family’s history – most notably with regards to her knowledge and the timing of that knowledge.  She knew plenty early to do something to stop it from continuing, and she didn’t.  The person who told her was my sister, as a very young child.  My mother knew, and she did not take steps to remove the abuser from our home or to protect us from him.  And so the abuse continued for years.

I wrote a scathing letter to the reporter.  Because she didn’t disclose the relation of those “abused” in my mother’s story, I don’t think the reporter technically violated privacy laws.  However, she acted unethically and I was sure to let her know exactly what I thought of that.  Before sending in this letter, because it disclosed some details of the abuse and my family’s history, I wrote to my sister and told my little brother.  See, that’s what you’re supposed to do before you start airing family’s dirty laundry in public.  They were both ok with what I wrote and with my sending it in.  But aside from that interaction, I have not had any conversations with, emails between, or sightings of my sister since late Fall 2011.

photo of boston from beach

4th of July, from the beach in my hometown.

This time, we stopped talking with a bang instead of the usual inscrutable random reason, like “you rolled your eyes when I said X during conversation Y at Christmas!” (2005).   This time, I blew the hell up.  It was related to health stuff.  I’d spent the day in the hospital, a day that was supposed to be a vacation day that I was going to spend with her.  The day after Halloween, and I had been looking forward to it for months.  But I’d had chest pain for days, that just kept getting worse.  Called my doc  after the weekend was over and was told “go to the ER!”  I hate that.  I won’t do that again, but I did it that time.  My sister took me, didn’t have to but she offered.  But I could tell she didn’t want to be there, stuck in the ER with me appearing not to be ill except for occasionally flinching when the pain gripped my chest.  So I told her if she wanted to go she could.  She did.  And fucked off for a while.  When time came to pick me up, I called and got no answer a few times.  Finally I got her, she was doing dishes.  She picked me up and instead of going straight home where I could rest (because I got speed and steroids in the ER and felt like shit), we had to stop at her house and finish doing whatever she was doing….her house was warm.  Bright.  Difficult.  Then to my place, where she did her laundry (I offered, but I had figured she’d maybe at least start it during the hours I spent in the ER).  And then the family bullshit.  She hadn’t been talking to my brother for a while at that point.  They’d had a fight.  She was supposed to see him that night for the first time in a while.  And she wanted to strategize with me I guess.  Talk about it.  Analyze it.  In the weeks before this planned event, she had tried to engage me in similar discussions.  I had told her that I did not want to be in the middle of her and my brother again.  That I hoped things worked out and they could reconnect but that I was not going to mediate.  I told my brother the same thing.

That night, in the course of this discussion, I tried saying this again.  And god I was so tired and so sad about my day being blown to shit.  And about not being able to do the things I wanted to.  My guard was down and my emotional resources were just gone.  And she decided that my brother and I had been conspiring against her, money was involved (tangentially, I thought but not for her).  She started going into her seething rage mode, tight mouthed and snippy.  The one that I, by that point, knew marked the start of a several month’s silence on her part.  I was panicky about this, those “no talking” times hurt, as I am pretty sure they were designed to do.  Then I got pissed off.  How dare she drop this in my lap, and then especially.  Why did it always have to be all about her and her tragic life?  And I got snappy with her.  She was going to leave in a huff, as she does before not talking to me for months, and seeing that this was where things seemed to be going, it was like a spark for what – that day – was a very short fuse.  If she’s going to act like my having a bad reaction to her bullshit is a monstrosity, then why do I hold back?  Why hide the rage and frustration that I feel about my health and my life getting so small, why hide how much it invalidates and demoralizes me when she sits there telling me all the things I should do, or could do (if only I’d stop playing sick apparently)….why hide how angry it makes me when an occasional failure to treat her with the delicate kid gloves she requires results in earning her apparent spite and condemnation? And so this time, I really blew up.  And while I’ve missed my relationship with her, I have not missed the relationship we had had for the last few years.  What I missed was one that had been gone for a while.

In the very early morning of her birthday, I woke up screaming.  That was 1:00 AM July 4, and my throat still hurts.  It was a lot of screaming.  It was a bad dream.  It involved illness, my mother, my sister, so much pain – both physical and emotional.  At the end of this horrible dream, I was being held down and hurt horribly, and woke up screaming.  Woke up my husband, who – god bless him – tried to calm me by holding me tight.  Not a good idea.  It took at least a half hour for me to stop crying after finally being able to articulate that he needed to let go.  Crying partly about becoming combative with him in my confusion, partly from the remnants of rage and horror, and partly from the continuing physical pain which rapidly became very real when my too tight muscles and rigid tendons were locked in his arms.  We finally got up and came downstairs, smoked, and recovered.  I told him about the dream and I said I was really sorry for throwing elbows while he was trying to comfort me.  I explained that if I need to be held after  a dream like that (they happen about 2x a year, more during stressy periods or holidays and family birthdays), I will tell him.  He was deeply apologetic for holding me like that, he said he had only wanted to comfort me and stop me from getting hurt – which I really do get.  When someone who dislocates is thrashing violently (not to mention screaming like they are being stabbed), it makes sense to want to hold them.  I told my husband that it was a good thing my parents lived far enough away to be inconvenient for me to drive over there and just start slapping.  If someone’s going to get elbowed in the face because I continue to suffer the ill effects of a broken development, it should be them.

In the late morning of the 4th, my brother texted me that my uncle died the night before.  This is not a man I knew well.  This is the second husband of a once favorite aunt.  Favorite of us kids, not of me specifically – she is my brother’s godmother and while she and her first husband made us all very welcome in their home, they had a special bond with my little brother.  Went spent a lot of holidays with her and her first husband.  He was a kind man who, even after getting sick with liver cancer, would try to be as fun as he could for quite some time before the depression and physical illness robbed him of that.  They had been very much in love and he had died young and rather suddenly.  Lost weight, got jaundice, got diagnosed, died all in a few months.  It took my aunt a long time to recover some footing from this.  Finally, at quite a later point in life, she met a man who she adored.  They quickly married.  I met him with her at another uncle’s funeral in 2007.  She seemed so happy, despite the sad occasion, when she spoke of this man and looked at him.  I was happy for her. A few years later, he had a stroke.  Then another.  A pretty bad one.  The next time I met him, last year, he had significant aphasia.  He could speak but it was with significant effort.  I found out from little brother that a few months ago, he had deteriorated further, another stroke, and had been transferred to hospice/rehab.  Basically, it was rehab but the staff and my aunt knew that it was really just comfort measures and palliative care.

The practical upshot of this is that I will be seeing the family quite soon for the memorial services.  What a week to have to see them.

wide awake and a mountain of paperwork

This is a trick my body knows.  The “wake up 3 to 5 hours after you fall alseep” trick.  And I don’t mean a little tossing and turning, I mean wide the hell awake.  At 1, 2, 3, or 4 AM.    Drenched in sweat.

This week, we have a nasty weather system that’s been camped out just south of us in Northeast US.  It’s been stormy, warm, and muggy every day.  We had tornado warnings on Monday, and our neighboring state, the Olde New England Outback, had an actual legit tornado touch down.  This is Migraine Weather.  And here’s me, with my body doing this trick.  It’s practically begging for a migraine.

I have an appointment at BI-BATH and they sent me paperwork this week.  A mountain of paperwork.  It’s the size of a small phonebook.  Admittedly, some of it is directions for the tilt test prep (no food, you know in case you get all pukey with the syncope) but a very large amount of it is history and survey based.  Several questions ask about sleep and sweating.  One about poor handwriting.  I wrote “Yes!” with underlines, since this was about half way through the packet and my already shitty handwriting deteriorates the longer I write.  Now a word on that.  It’s become trendy again to bemoan poor penmanship and blame it on the internets, the computers, the mobile devices.  Let’s set the record straight.  Before there was a computer in every room, I typed at a typewriter, and not just papers but letters, and by the late 80s, journal entries.  It was just so much easier and so much more readable and so much less painful than writing.  My writing has ALWAYS been terrible.  When we met my mom’s birth mother’s family, with the various unbelievably tall aunts and their collections of sons, we found out that several of the sons were dyslexic…one with a pretty significant helping of dysgraphia.  Ah.  So there you are.  I got the latter, my sister got the former.  So I’m scribbling along on these forms and I’m like “wait, are my sleep problems all part of this autonomic bullshittery?  And my waking up drenched in sweat?  Why has no one mentioned this before?”  Then there were the “how long has this been going on” questions.  First time you passed out?  8 years old.  How old were you when your skin started changing color?  All my life.  How old when you started having greying vision and dizziness on standing?  As long as I can remember.  How long has it been difficult to stand for long periods?  Always.  Same with problems staying asleep, stopping breathing while sleeping, acting out dreams, intolerance to heat.  It’s just that over the last 10 years, it’s all gotten a lot worse on an accelerating time scale.  If this were a line graph, it would have started high for severity and slowly gone up through adolescence, wiggled around a bit in the 20s and early 30s, then shot up at about 34 with increasingly small plateaus.

What’s, in retrospect, rather mind boggling to me is that my family really didn’t seem to see the big problem with any of these things.  After I mentioned that I had passed out starting at 8 years old at school, at 9 at home, then again at 11 on a field trip, my primary care asked me “and what did the doctors say then?”  “Oh I didn’t see a doctor for that until I passed out in a hospital before a scope when I was 15, then they thought I had epilepsy because I pass out stiff.”  He did a face/palm move.  “Hey, I grew up in the 70s, you know?  People were like ‘oh that kid passed out, huh, kids….'” I said.

But seriously were they lazy?  Did Mom RN derive some pleasure from playing House MD to a kid with a mystery illness?  I knew the term “marfanoid habitus” at a very young age.  I can’t imagine she enjoyed hauling me around to various doctors for the GI stuff and then for the passing out everywhere stuff.  Scratch that, I know she didn’t.  But she knew these things weren’t ok, she’d remark on them….”Oh, look at that, livedo reticularis!” then she’d go on to explain the word meanings and their roots.

I go for my latest tilt test in two weeks.  In the meantime, I have a vacation starting tomorrow…off till July 11.  Woo!  Already got hubby to agree to go to the nail salon with me.  He really needs a manicure.  Just because my hands don’t work right doesn’t mean they can’t look good.  And I really need these toes to look less snaggly so I can bust out the open toe shoes for work now that it’s hotter than blazes here.  Taking suggestions for colors.  I went with a raspberry last time on my hands that I liked out of the bottle but that did NOT wear well.  It’s left me with a sort of candy apple hello kitty pink sheen that is just not me.

locked

Woke up at about 1:00 AM last night on my side with my knees bent.  Ooh, that hurts, I thought, better roll over.  Tried to roll, but the knees weren’t having it.  Nope.  Had to manually, i.e. by arm, hand, and other muscles that really don’t like to do anything, roll onto my back then slowly unbend each leg.  It hurt like hell.  Hurt as bad as when I fell on the ice back in Michigan and blasted them to crap way back in 1998, when I still did thing like run in the snow.

What a thing to wake up to.

My knees had been feeling a bit cruddy earlier in the evening, not painful, just tight and weak.  Like my thighs weighed too much for them.  Noticed it going up and down the stairs. Felt like my knees were swollen.  They weren’t, not that I could notice.  With all this joint pain, I’ve nearly never had any actual joint swelling, which is why it’s is much more accurate to say I have arthralgia than arthritis, however, your every day coworker does not know what “arthralgia” means…and you’re looked at with suspicion for using big medical words.  So I usually just say “arthritis” now when I have to offer a functional explanation of my joint pain and dysfunction.  It is good to have the EDS-HT diagnosis for things like this now, at least in a more medical context.  It explains the algia without the inflammatory features of the itis.

One more work day then a day off.  Not totally “off” since I’m having bloodwork.  I had run across some references to anti-neuronal antibodies associated with autonomic dysfunction, specifically with GP.  These autoantibodies can come from cancer.  I’d been meaning to ask the GI doc about them but I knew that she’d probably think I was nuts for, well for what?  For looking for reason why a non-diabetic 42 year old without a history of spinal cord injury seemed to go from an accelerated GI tract to gastroparesis over just a few months?  Doesn’t sound so nutty when you spell it out, and yet I am 99% sure that had I asked her to check into this she’d have regarded me strangely…strangely in a way that compromises care. PCP was all kinds of “WTF?  You have gastroparesis?  They don’t know WHY you have gastroparesis?!  Before you take on some new thing, someone really should look into what caused this,” I did say that it could be the EDS and he ran off to his computer and printed out a long list of citations linking them (so much for that former GI doc who said there’s no association between EDS and GI stuff other than aneurysm – god she sucked).  But I’ve had EDS my whole life, if I do actually have it.  And this blisteringly symptomatic GP really is a new thing.  So I brought the question to him.  And so tomorrow AM I get bloodwork for anti-Hu and anti-Ri.

AM OT, PT, OMG

Knowing that you have a PT appointment in the morning is like having to go to gym class.  It’s usually not as bad as you imagined, but it is still something that makes you groan when you get up in the morning.

That was my experience today.  After waking up at 4:00 AM drenched in sweat.  Again.  I fell back asleep finally, then woke up to a frozen iPhone cheerfully blinging at me that it was time to get up.  Unable to just “snooze” it, I did a hard shut down (yep, half asleep even) thinking “oh hah, I don’t have to go to work today, I’m working from home!”  then fell back asleep until husband’s much later alarm went off.  Then I looked at the powerless iPhone still clenched in my hand, and remembered I have gym class…I mean PT today.  Crap.

I’m working from home today and tomorrow.  Right now, I’m taking a break.  A bad break since I should take a full break from the computer when I’m taking a work break, so say the occupational and physical therapists.  They are right, of course.  I’ve been working for the last hour and a half straight, editing calculus figures for a student who is blind.  This means lots and lots of mouse.  So break away from the computer in a moment.  On a related note, I really need to get a better mic for my dragon use.  I have the crap one that comes with it.  I may as well talk through a tin can with a wire plugged into my line in jack.  USB microphone is the way to go.  I had a gorgeous one that I bought at my last job, it was so fancy and nice.  I need one of those.  So I can blog and stuff without hurting the hands.

I am “discharged” from PT and OT, sort of.  I’ve been going for a month.  I’ve definitely made some progress.  Less pain, and better strength.  Baby steps.  PT guy said that we had two options.  We could do today’s evaluation and then continue to add exercises or we could take a break, I can keep doing the exercises he gave me (really just 4 very low impact things for core strength), and then come back for more PT when I’ve built up the strength. I said “I’m leaning towards option B”.  So B it is.  With the caveat that if I have questions or need a refresher, I can call and come in.  That’s cool.  Works for me.  I’m definitely in the baby steps phase.  I was thinking of making some kind of exercise chart.  I need visuals, otherwise I just sort of poop out and go “meh” and don’t do what I should do.  I’m  thinking something with star stickers.  I’ll post a pic if I make one.

In other news, my husband and I bought a couch as our christmas present to ourselves and we just got word that it’s in and can be delivered soon.  Wooo!  We’re probably going to postpone delivery until February since that’s the first weekend slot that’s open.  I am already working at home today and tomorrow this week (medical appointments, more on that in a moment) and I don’t love the idea of taking another day off right away unless I have to.  So, yay!  New couch is coming!

Tomorrow’s appointment is with the dentist.  I get the first of my four metal fillings taken out of my head.  I’m looking forward to moving a step closer to being metal free but not looking forward to the experience or the aftermath of sucking in metal vapor.  I’m going to ask for nasal O2 and advise them to be liberal with the suction.  From what I’ve heard, this helps.  I’m also going to premedicate with a crapload of benadryl and H2 blocker.  And husband is going with me (a) since I’ll be benadryl drunk and (b) in case I have a bad reaction to the metal vapors.  This is the dentist who said “I’m a little worried about anaphylaxis…”  And kudos to her for even considering it.  I figure that since the dental clinic is not only affiliated with, but also mere steps away from, Man’s Greatest Hospital if I’m gonna have a big awful reaction to having these things taken out, I’d rather have it there.

tick phobia

As I prepared to go to bed last night, I carelessly tossed my cell phone and now ubiquitous wrist brace down on the mattress while I rummaged for my night time pills in the bedside stand.  And something went -ping-scurrryscurryscurry off the bed, onto the floor, and under the night stand.

BUG!  And me barefoot and in a sundress.  See, this is why I hate that summertime makes me dress like a carefree and helpless little girl.  I am NOT carefree and being scantily clad makes me feel like I am vulnerable in ways I’d rather not be.  Yeah, I know, this sounds like your run of the mill body dysmorphic disorder…And admittedly I do think my feet look like large bony pale monkey feet, but this state of undress-distress is more conditioned by wanting to be contained and safe than by wanting to not show my body.  I’m quite happy in a floor length figure hugging dress, providing I can wear combat boots to do things like STOMP ON BUGS that invade my space.

My husband came into the room a short time later to find me sitting uneasily on the bed, legs pulled up under me, cell phone and charger in hand.  In response to his quizzical look, I whined “I wanted to charge my phone but I need to plug in the charger back there” (gesturing to the nightstand) “and a big bug just ran off the bed and under it!”  “What kind of bug?” my husband asked.  “Big, black, I dunno, it had legs.”  “Well I should hope so.  It would be more alarming if it didn’t.”  “Ugh, and there’s another bug up there on the ceiling.” I pointed to a little bug that was working its way in and out of the ceiling tiles in the corner just past the window and my side of the bed.  My take on bugs is if they invade my space and they are over a certain size and speed, they get obliterated.  I don’t want to have to concern myself that they will come at me, and so I take preemptive steps, which usually culminate in my throwing the largest book I can find on them then jumping on that and stomping while muttering “die die die fucking die”.  A couple of my employees have witnessed this.  It is now termed the “die bug die dance”.

My husband and I debated the merits of moving the nightstand and looking for the leggy bug.  My husband offered to do it.  I was disgusted with myself for being so whiny and helpless so I said  “No, I don’t want you to do it.  I don’t want to do it and I’m certainly not going to ask you to do something I won’t do.”  He satisfied himself by peering under the nightstand with the flashlight.  “I don’t see anything,” he announced.  So off to bed we went.

At some point, I realized that it wasn’t as cool as it should be with the air conditioner running.  Hm.  I got up.  I pulled back the curtain at the window next to my side of the bed.  Ah.  The window was open.  Crap.  Well, now I know where the bugs came from.  I closed it and went back to bed.  But…if those bugs got in, others may have.  We just moved to tick central.  I avoid being outside as a rule now, I don’t walk on grass, I try to avoid walking under trees.  I do not want to be another tick buffet.  And so into my very sleepy head scurried fears that a tick may have gotten in the window.  A deer tick certainly wasn’t as big as the black leggy fucker who was currently planning his 2:00 AM assault on my pillow from under the nightstand.

No sleep for Dyspatient last night.  Up at 1:30 AM to have a cigarette and read.  Then back to my scary bed where I jumped at every stray tickle on my skin and pulled the covers up tight despite the humidity.

 

I’d consider this evidence of a general anxiety issue except that I have such a good reason to be worried about ticks and tick bites.  Still, while the reasoning is sound I think the behavior is a bit aberrant.  I chalk it up to experience plus my already hyper threat-attuned brain…now if only ticks were stompable and would just make themselves known rather than creeping around like the life wrecking disease riddled fuckers they are.

Low down

In bed, snugly and cozy, nearly asleep when I wonder…what’s that ringing/buzzing noise? No, ignore it. Go to sleep. Bzzzzzzz….very faint. Ok, I have to pee now so I get up and investigate on my way back from the bathroom.

Sounds like a shower is on in a far off room. But I can’t localize it. I go back to bed. Turn on the side that it’s loudest on and realize I can hear it even better now that my ear is full of pillow. And also, my legs feel jumpy. And I feel kind of sick to my stomach.

I’m not sure at what point I decided to get up and check my blood sugar but gosh I’m glad I did. 68. That’s low. Certainly low enough to account for the ear ringing and nausea.

I routinely wake up in a cold sweat, I’d figured it was more of the heat intolerance thing. But I think next time that happens I’m going to check my blood sugar.