a little better yesterday, not sure yet about today

Yesterday, I woke up stressy but managed to get through the day without an ativan.  My general rule is retching from anxiety or too much nausea from general awful GI issues = ativan.  Although right now I’m trying to struggle through the nausea without taking any since I worry that I am having rebound anxiety.  I had tried not taking any benadryl the night before, to see if maybe the benadryl was having some sort of rebound effect in the AM.

It kept creeping up on me yesterday, and I managed to dodge it pretty well.  Either doing deep breathing (not convinced that helps…or that I’m doing it right) or keeping busy.  I took a walk in the AM before it got hot.  Not a long or fast walk, and there were lots of rest breaks on the way, but I wanted to try something new.  I busied my way right into two hours of pain, dizziness, and intense fatigue though by overdoing it cleaning the bathroom.  I went out with my husband to the mall and bed and bath to look for shirts for him (not a lot of luck) and juice containers for me (just bought a juicer).  I was ok in the stores, but riding in the car, between stores and on the way home, I was having anxiety again.

Last night, by a few hours before bedtime I was feeling fine anxiety-wise.  I was not feeling fine gut and headache-wise but, well, at least it wasn’t everything.  I didn’t take any benadryl again, so we’ll see how that goes today.  I woke up stressy as hell today, but did the deep breathing in bed.  I managed to work my way down after doing that for what felt like forever.  And I even got up before my husband today, which is something I haven’t done practically since this started.

My juicer came yesterday.  I’m excited to try, slowly, some juice today. I was going to start with watermelon, very watered down watermelon.

Advertisements

popovers and pelvic instability

Yesterday was a work at home but take the kitten to the vet in the middle of it day.

I got very little work done.  Some of this was due to the kitten, and some was due to the fact that I’ve been putting off routine housework, cooking, and self care for work.  Or for work related energy.  The work I did do involved massive shoulder pain (this is what happens when my staff is cut, too much for me to do alone) so I decided to call it and take care of house stuff.

I managed to get through sweeping and vacuuming ok – different shoulder motion than typing and mousing and the pain is very much an over-use injury attached to keyboard work.  Then I moved on to making my pumpkin pudding that I didn’t have time to cook over the weekend.  I didn’t have time because I was just exhausted.

Then I got ambitious and decided to do MORE dishes.  It was the dishes that did it.  I turned to put something away, with my feet and legs fixed forward rather than repositioned to be at the same angle as the rest of me, and “pop” went something on the lower left side of my pelvis.  Crap.  Laid down with the ice pack, now ice on the pelvis and heat on the shoulder.  But I really wanted to try making pumpkin popovers.  I had made plain ones a few weeks ago and they were ok but I thought I could do better.  I took this recipe for low fat popovers and modified it.

  • 1 egg
  • 2 egg whites
  • 1 cup all purpose flour
  • Heaping tsp ground cinnamon
  • 1/4 – 1/2 tsp ground ginger
  • Dash ground nutmeg
  • Dash ground clove
  • 1/4 tsp salt
  • 3/4 cup lowfat milk
  • 3 and 1/2 tbsp pumpkin purée
  • 2 tbsp sugar

Heat oven to 450ºF. Spray 6-cup popover pan or six 6-ounce custard cups with cooking spray. (I used nonstick cups very lightly greased with butter.) Place all ingredients in blender in order listed. Cover and blend on medium speed about 15 seconds, stopping blender to scrape sides if necessary, just until smooth. Fill cups about 1/2 full.

Bake 20 minutes. Reduce oven temperature to 350ºF. Bake about 20 minutes longer or until deep golden brown. Immediately remove from cups. Serve hot.

Notes:

  • As usual, I didn’t think to measure and record my modified ingredients carefully, just eyeballed them and hoped for the best. So pumpkin, spices, & sugar amounts are estimates.
  • Use room temperature ingredients and preheat popover/ muffin tins for more “pop”.
  • You can use regular muffin tins. Just less pop.

Even in my ill-tempered oven, they came out pretty good.  photo of cooked pumpkin popover
Not heavily pumpkiny, but I think more pumpkin would weigh them down.  Next time, I’m using more spice too.  A nice treat for sitting on the couch in my now clean living room with ice and heating pads and kitties.

guts for garters

That is one of those phrases that is, if you stop and think about it, quite awful.  It is also one that pops into my head when my guts start spasming.  As they are now.  What prompted today’s trick?  It could be that I ate breakfast (how dare I?!).  Apparently that is still forbidden, eating before 11:00 AM.  It could be work stress.  I just was put on notice yesterday that the departmental staff appreciation dinner is in June (a very ill timed day in June) and that we are ALL expected to go.

Go and do what?  Go and watch other people eat while my window of being able to eat anything trickles away?  Go and stay out and up late on a Monday, the start of a week and a particular Monday that happens to be the day before a conference I have to go to half-way across the state?  Go and not drink but watch other people drink and get drunk, and socialize with each other but not with me  because I’ve been judged to be not a team player?

Golly.  Why not.

So my guts are in an uproar.  And so a work at home day has turned into a day on the couch.  I refuse to feel bad about this.  As soon as I finish this post (while I wait for my yummy magnesium powder drink to cool off enough to gulp down), I’m changing into my jammies, rounding up my kitties, and flopping on the couch with a heating pad and some netflix.  There’s my employee appreciation.  And they can have my guts for garters, for all the good it’ll do them.

no, thank you

I am not good at saying no.  I like to think I am, but truthfully, I am not.  I have discovered this as I have gotten sicker.  I suppose I should have noticed it way back when my blood sugar and endometriosis were my biggest problems.  Specifically, the blood sugar.  I have passed out more times than I’d like in public due to not saying “No, I don’t want to keep walking around looking for a place where EVERYONE wants to eat.  I need to eat now, you all can stand out here and debate it but I’m ducking into this convenience store and buying a snack….”  There were a few times in my mid twenties when I tried this, always inelegantly.  And that is another example of being bad at saying “no”, doing it but doing it badly.

That’s, unfortunately, still where I’m at.  My health problems mean I have to say “no” alot.  These days, I often preemptively decline by avoiding situations which I suspect would lead to a whole bucket full of poorly executed “no”s or worse, going alongs and ending up with hell to pay health-wise.  This gives me the reputation as someone who does not WANT to, rather than someone who cannot.  I’m not sure there’d be a hell of a lot more understanding for me if it was the latter, but I can tell you there is zero for the former.

E.g., my boss sent out an email yesterday letting the office know about a food discount event going on at a local touristy landmark.  Local as in normal healthy people could walk there, wander around, and walk back without it destroying their day or week.  Not local enough for me.  And not something I think I can do.  Walking there and back is one thing, but add in the wandering around a food court full of stuff I  can’t eat anyhow during my lunch break, and if I choose to bring my own food so I don’t bottom out bloodsugar-wise, I will reduce my stamina but a significant amount due to having to lug the extra weight around while I walk and wander.  So this is something that seems like a clear “hell no” but I am reluctant to reply and say that.  I guess I’d like to better understand her point in inviting me.  I’ve discussed these limits with her, it’s come up in the context of work related social events that my boss’ boss’ boss holds periodically throughout the semester.  Does my boss think that my reluctance to attend those big boss events is based in something other than physical limitations, and does she therefore think that I’m like some faker debutante waiting for just the right invite to get off my ass and flounce off gleefully and spiritedly?  Or is she just being polite in inviting her big fat crippled worker along to this particular event?  Knowing which would help me figure out how to say “no”, with some grace and dignity.

way above and beyond

Well, if I didn’t think my primary care doctor deserved medals, ticker tape parades, and a statue on the town green before, I do now.  I went in with my list of crap, which included “this pounding heart thing”.  Now, a word about that.  This pounding heart thing has been creeping up on me.  For a while now I’ve noticed that when something alarms or upsets me, like a loud noise or an unexpected brake light (we’re not talking deeply upsetting here, just one of those “gaaaa!” moments is sufficient now to trigger it), I’ve been having a rather strong physical response.  Specifically, my heart just gets a’ pounding and doesn’t let up for some minutes.  Didn’t think much of it.  Until it started happening more and more often.  Most recently, it was triggered by someone dropping a clipboard on a floor near me, watching a TV show where someone was being chased (a TV show I’ve seen before and didn’t react like that to), and listening to a “scary” part of a children’s audiobook.  Yep.  Children’s book.  Scary!  When these moments happen, I am not usually feeling highly emotional.  E.g. the clipboard or my cell phone chiming to let me know I have a voicemail after a phone call came in.  Sure, it happens when I’m angry or feeling very apprehensive too, or when I get an email from our new secretary freaking out about a project that came in when I was on vacation when our supervisor specifically told the office to send any projects like that to her during my vacation.  But major annoyance, while annoying, does not usually make my heart flip the hell out.

So what the hell is this?   I’m having a hell of a lot of PVC type “flip flops” right now too.  They’ve gone together with the pounding.  Like the pounding, these are happening more often (I mentioned that right?  Multiple times a day now?).  And I’m having shortness of breath when the pounding thing happens.  Oh and the last bit, I have chest pain when it’s been going on for about 5 minutes.  Not horrible “oh my god I’m dying” chest pain but a knot of pain that is unmistakably painful.

When I made this appointment, they had started becoming more frequent and intense.  By the  time I got in today, I had just had this shit going on solid for 5 days.  And I was like “Ok, I guess we should talk about this first…” and lay this all out for him, children’s book and all.  Bam.  Poor primary care, talk about dropping a bomb on him.  I did mention it in my visit request, but truly, if things had been this bad when I made the appointment, I’d have stressed the urgency and not requested it as  a “check up” kind of visit.  He got to hear the flip flopping thing (PVCs perhaps) although I didn’t have either pounding or flopping when I was being EKG’ed, of course not, and this is why I don’t go to the ER for this.

So he said “ok kiddo, you can either go across the street to the ER or I can send you down the road to the cardiologists’ office where they said they can do an echo right now.”  I hemmed and hawed a little, because he added that he didn’t want me driving anywhere by myself right now.  “Uh, if I go to that hospital, it’s $200 for me to walk into the ED and at least $150 more for every cardiac test they run.”  So he says “I will drive you to the cardiologist.”

No shit.  I was so taken aback.  In the end, his office coordinator ended up driving me over AND back.  Holy shit, can you believe it?  I need to send them flowers.  At least.

I’d like to think this is all just stress, well no, I what I’d really like is for it to stop happening, but it is and I’d like an explanation that is not that my autonomic dysfunction has decided to target my heart now.  My primary care was mostly worried about a vascular event, I know this because he kept talking about wanting a measurement of my aorta.  Ultimately, whatever it is, as with all things with me, it seems there will be no easy answer.  The cardiologist finally read the echo (hours later, yay) and apparently my aorta is ok.  So, I’m following up with cardiology tomorrow.  “I won’t be able to get an appointment tomorrow,” I told my primary care when he said for me to see them tomorrow.  “Oh no, WE’LL get you an appointment tomorrow” he said, chuckling.  His secretary called me less than a half hour after I left to tell me I have an appointment with the cardiologist tomorrow.

Ironic drive home music?  Bonnie Tyler’s Total Eclipse of the Heart.

 

2/20/14 update:  This morning’s trigger, mixing a sound clip of Henny Youngman and The Circle Jerks’ Operation for a CD I’m making for a friend.  I always get a little thrill when an audio mix comes out particularly good.  Today, that little thrill resulted in a sustained heart rate of  110.

way up north

I have something like a flu right now.  I say something like and not just “the flu” because while it feels very much like the flu (sore throat, fever, aches, headache, a bit of nausea) it feels like the flu at about 20%.  Now keep in mind, I have a quite recent memory of a very bad flu that left me completely unable to get out of bed for a solid week.  When I say this is 20% as bad as that, know that 20% is still plenty awful.  It started Tuesday morning.  This is the week before classes start.  And this week, my supervisor and coworker had decided that we’d all go on a field trip way up north to the Great New England Wilderness to give a day long mini-conference.  I cannot miss this conference.  Had I been involved at all in the planning, I would have pointed out that flu season and three days before classes start is perhaps not an ideal time for such an endeavor.  I was not involved in the planning.

So I’ve known about it for a while.  I made my plans and tried to take some solace in the fact that next week, I’d have two work at home days.  These work at home days were so crucial, more so since next week Mr. Patient is going out of town Wednesday through Saturday for a conference.  I had planned on taking those days as my work at home days and then one as a vacation so I wouldn’t be stuck getting in and out of Ye Olde Historic Northeastern City on my own.  The energy, time, and expense that this costs me is significant, it’s enough to derail me for weeks.

And then my boss dropped a bomb.  She’s going on vacation next week so my work at home days are suspended.  “Yeah, I’m gonna need you to go ahead and come in every day that week…” I found out right before Christmas break.

Fuck.

To recap:  By going way up north today, I’m being asked to do an exceptionally physically difficult thing today on even less reserve than normal (i.e. flu-like illness that’s gone on for 4 days now with no sign of relenting), then to do an exceptionally physically difficult thing all week next week.  This is a recipe for hospitalization in my book.  I am left wondering if my boss really just does not get it or if she gets it but waives it when it’s inconvenient for her.

lock out

I recently posted about the accessible door to my building being locked for an event.  I have since found that the security guards in my building had started locking the door routinely in the evening.  That is, the building is still open, services in the building are still accessible for anyone who doesn’t need that door, they are just not accessible for anyone else because the guards locked them out.

Why?  I asked.  Of course I did.  The guard told me “They told us to start locking it to save energy, but now that I know you need it I won’t lock it until I see you leave.”

Um…..no.  So I wrote to the building manager, who initially thought I was saying the accessible door was locked when the building was locked (?!) but said he would look into it once I explained that I meant only the accessible door was locked during operation hours.  A few days later, I checked back in. I was told that the building had no such policy but that one of the guards had proposed that they start doing locking the only accessible entrance to the building after the guards noticed that “too many non-disabled people were using that door….” and they wanted to save energy.

Savor that for a moment.  Let it sink in.

This isn’t the first time I’ve seen accessible come up against “environmental”.  In the summer, the powers that be at this same building decided they would set the air conditioning system to less cool “to save energy” and would shut it off at 5:00 because “no one is in the building then in the summer”.  This was sent out just after an email about employee summer hours, where you can opt to work late 4 days a week then have the 5th day off.  So much for no one in the building after 5:00.  The air conditioning email was peppered with environmental rhetoric, but it was clear that this was about money.

I’ve encountered it more casually too, a fellow grad student once chastised me for taking “the lazy box” (elevator) instead of the stairs on a day when I was in so much pain and so dizzy that I had barely made it in to school.  I guess that one wasn’t so much about environmentalism, but about fitness. Both appeals (to environment, to fitness) involve people assuming some higher ground to justify the ignorant and marginalizing behavior.  Both involve people making groundless and hurtful assumptions about other people’s abilities and motivations.  They are similar in that they are both justifications for discriminating against people with mobility impairments.  And while people have the right to hold their ignorant views, they don’t have the right to impose them on everyone.  They don’t have the right to lock the fucking door.

recognition

My employer recently held an employee recognition event.  Notice that it’s not “appreciation”.  That isn’t directly relevant to this story, but I thought I’d mention it because it struck me as darkly humorous initially and a little more so after the event itself.  “Come on down to employee recognition!  See people you barely know get recognized for having worked here for a damned long time” went the gist of the many emails I got about it.  It was in my building, so  I thought it might be something I could go to and sit awkwardly at (see “awkward pumpkin painting”) and put in my face time at events.  Because it’s been required of me that I go to events.  It was put in writing even, back last spring.  It’s never been rescinded in writing, so although I find it burdensome (if not downright impossible) to go to most things and although I don’t know of another employee who has a written requirement to attend ALL events and functions, I’m honestly just not ready to sue.  So I try to go, when I can.  I assume if I don’t, I’ll get passed by for a raise again, seen as a poor team player, you know, all that.

But yesterday was busy.  We’re down a staff member in my office and while we do have a temp, we’ve still divided up some of the permanent position’s work among the permanent staff.  So I have other responsibilities and we’re heading into a bit of a busy time for me.  And we’re now interviewing (finally!) for the open job, and the interview schedule is messing up my schedule a bit.  I usually work from home Tuesdays and Thursdays but this past week and next I’m in all over the place.  So yesterday, despite the emails we had all gotten inviting us to recognize other employee’s recognition, I ended up working straight into the afternoon without giving this event another thought.  Until I went out for a break, at a time that I later realized was about an hour before the event started.  On my way back into the building, noticed they’d locked the accessible entrance.  “That’s odd,” I thought.  But then they had locked it the night before too.  The night before, it was late and I figured they just screwed up and locked the wrong door.  See, the front of my building has two doors.  A revolving door (not accessible) and an accessible, normal door.  The back of my building has a door too.  A non-accessible door due to it being up a flight of stairs from street level and having no button press-opener.  To get to the non-accessible back door, you take the elevator to the building’s second floor.  To get to the accessible front door, you go to the first floor.  Got it?  Ok, back to last night.

After encountering the locked accessible door again last night, and having to wait until no one was coming through the revolving door to use it (I don’t move fast enough for some people and have been clipped in these doors before, so I’ve stopped using them)…I thought “When I’m leaving tonight, I’ll go out on the first floor and ask the security guard if this locking the accessible door is a new thing.  If it is, I’ll drop a line to the building manager to let them know that’s not ok.  They’re pretty good about fixing things like this.”  Then I went back to my office and worked.

It turned out I worked well through the event without realizing it.  On my way out of the building, as the elevator neared the lower floors, I heard a lot of noise coming through the doors.  They opened on the second floor, which deposits you on a balcony/mezzanine level that looks out over the lobby and the accessible entrance, and I saw a big fancy looking event going on, people filling the lobby, little cocktail tables, music.  Ah, right.  The employee event.  “Ok,” I thought, “not going out that way then.  And I guess I know why that door was locked tonight.”  Making a note to follow up on the whole locked door thing,  I made my way out to the back, inaccessible door.  Still, I believed I had a choice in this.  I didn’t need the accessible door yesterday, so I chose to go out the back.  I was wrong, it turned out.  Because it turned out that even if I had needed it, I couldn’t have used the accessible entrance to my building to get out last night.

The security guard who was stationed at the back entrance was the regular.  He’s chatty.  We’ve chatted while I’m waiting for Mr. Patient to pick me up on cold nights when I don’t want to wait outside, or on nights when I’m feeling to bad to stand and wait.  The security guard was very animated last night.  He told me that they had shut down the front entrance of the building “without telling anyone!  They’re just sending people back here” he said, incredulous, “and those people are pissed!” he added.  He told me people had been “yelling in my face all night” because of the inconvenience of having to find their way to the back entrance to the building.  “One woman was freaking out because they shut off elevator access to the first floor, the elevator went down and the door wouldn’t open so she came out here and was screaming ‘what the hell!?  I was stuck in the elevator!'” (I doubt very much that she was screaming.  This is a young man in his twenties.  To him, any woman who is angry and verbal is likely seen as “screaming”, so I took it as a cultural hyperbole meant to convey the intensity of her emotional state).

Meanwhile, I’m thinking “that totally could’ve been me”.  “Uh, yeah, what about people with disabilities?” I asked him.

“Whaddya mean?” he said.

“I mean what if someone with a wheelchair or a brace or a walker wanted to get in…or out of the building tonight?  What are they supposed to do?”  He shrugged and gestured to the doors and the stairs that lay just beyond them.  “You’re kidding me, no plan?”

“Nope.  I guess carry them?” he said laughing.

I was pissed off.  I was personally pissed off because there are days when I HAVE to use the accessible entrance to get in and out of my building.  If was just a matter of them locking the door but with security there, and it was one of those days, I could ask to have it unlocked.  But they turned off the elevator.  No way to get down there even.

As I was in the car and going past the front entrance of the building, I saw that there was a cop standing in front of the accessible door, arms folded across his chest, looking imposing.  I suppose he was the one who was turning people away who were approaching the entrance from the street.  Man, it’s a good thing I didn’t know he was out there.  I have such authority issues, and I was so pissed.  I’d have been over to him in a flash, asking him to explain what the hell someone in a wheelchair was supposed to do.  Cops LOVE that kind of attitude, women “screaming” in their faces and what not.  Like I said, good thing I didn’t know he was there until I was safely separated from him by the car door, mechanical motion, and the busy street traffic.

I was pissed off on principle too.  I have seen people in wheelchairs and scooters in my building.  I know that they would have been left stranded, either on the sidewalk trying to get in or (possibly worse, I think) on the second floor without a way out.  I had troubling dreams last night about needing to use a guide dog and no one believing that I needed the dog.  I woke up a few hours after falling asleep, remembered the end of the day and the door thing, and was pissed off all over again.

So, not employee appreciation, recognition.  But apparently not even recognition for the disabled employees.

hangry?

Holy crap, it was just a matter of time before pop culture came up with a word that describes so much of my existence.  I spent years with undiagnosed blood sugar problems.  Years that postponed my ability to drive, a real crimp in the lifestyle of a late teen.  Years that made me think that my glucose mediated emotionality was just something I had to work on in psychotherapy, emotional regulation really goes right out the window when your blood sugar is plumeting, but who knew?  Not me!  I had hints.  I worked as a unit secretary while a starving (literally) college student.  One night, the nurses, sick of my shitty mood, said “Have you had ANYTHING to eat today?” and when I grumpily conceded  that my work schedule resulted in my missing the two weekend meals my crappy meal plan offered, they practically held me down and did a finger stick.  A $20 was pressed into my hand and a nurse walked me to the cafeteria to get food.  “No, not that.  Get this.  You need sugar” she said, swapping my diet soda for a sugary one.  Another “hint” came later, when I was married to the ER resident.  I came home from grocery shopping in a wretched mood.  I was actually slurring my words too, as I muttered expletives at my husband, the groceries, the cabinets, and the refrigerator.  “When was the last time you ate?” my ex asked me.  I don’t recall my exact words but my reaction went something like “YOU’RE JUST TRYING TO INVALIDATE MY TOTALLY VALID ANGER!  YOU MEN ALWAYS TRY TO MAKE WOMEN THINK THAT THEIR EMOTIONS ARE BIOLOGICALLY MEDIATED!  F*$K YOU BOB!”  Bob, to his credit, calmly mixed me a juice with a spoonful of sugar.  “Drink this.  If you’re still pissed off, we can fight then.”  Ah, the chagrin of realizing he was right.

And then the diabetic.  My grad school boyfriend who was a type 1 diabetic and who played games with his blood sugar and insulin like a gambling addict at the races.  Dietary restrictions be damned, he had a glucose infusion set and a blood sugar meter.  We checked my sugar a few times when I was being shitty, and what do you know?  Low.  60s and 50s and one horrible night, so low he wouldn’t tell me, just force fed me candy while I re-enacted scenes from the Exorcist.

So here it is, the pop culture reference I’ve been waiting all my life for.  Enjoy!

http://www.huffingtonpost.com/2013/11/12/hangry-hungry-angry-people_n_4256545.html?utm_hp_ref=mostpopular

we apologize for the inconvenience…

As I continue to work with a chronic illness, I am developing a real phobia of the term “inconvenience”.  On the subway, “inconvenience” means impassable obstacles such as a steep mountain of stairs between you and the street.  At work, it translates into no food, pain, migraines, fatigue.

I was thinking last week about what I would paint or draw if I could paint or draw.  It would be a series of dyadic scenes, one side is “what you see” and the other is “what I see”.  Keyboard and desk on one side; torture device on the other.  Rambling path through a hilly, sunlit park with people on bicycles, babies in carriages, and children on roller skates on one side; scorched, Escheresque hellscape crawling with demons on the other.

I’m thinking about this today because we have a standing meeting that was rescheduled from its usual standing time of my work start time to a half hour earlier.  It is also on the other side of a steep, cobblestoned hill (the short path involving slippery marble steps…the long path involving hordes of clueless undergrads, perpetual sidewalk construction, and other “inconveniences”).  Our receptionist also scheduled me for a back to back, so I have a meeting at my office (on the other side of the hill) set for exactly when the prior meeting ends.  Not ok, since the prior meeting always goes long and it takes me twice as long as my colleagues to walk back to our building after.  And if I want lunch today, I will have to drag that with me all the way, hoping that it is not getting too warm for the hour and a half or more that it’s not refrigerated (remember, my soft food/liquid diet = soups and puddings).  So I guess it’s to be pain and fasting for me today.  We apologize for the inconvenience.