snow happens

What is it that makes people drive like morons in the first snow?

Even in regions where every year, it snows.  More than a little.  More than rarely.  Did they forget how to drive in the snow in just 8 to 9 months?  That doesn’t seem plausible.  Are we all just skating the edge, running against the clock, trying to get in under the wire and with the first snow, we are still in denial of the change that makes us need to adjust what “leaving in time to stop at the store on the way home” means?  This has my vote, this or something like it.

In some ways, I think the first snow could be seen as like the onset of a new symptom in a chronic illness, or the return of a troubling one which you had hoped was gone but knew probably wasn’t gone for good.  You over do it.  You don’t accommodate for it, not initially.  You still try to run run run and get everything done.

And then you hit the gridlock, hell, you become the gridlock.

In addition to the first snow denial that was in full effect for this evening’s commute, there was also the not negligible effect of the cities and towns not being prepared for actual accumulation.  Why should they have been?  The weather forecasts predicted dustings only.  And here I sit, watching three to five inches pile up outside and wonder “will I get out in time to get to the doctor’s tomorrow”  and when I get there, will it be worth having raced to get there in time?

Probably not.  But I’ll try anyhow.  Otherwise, I may as well just crawl into a cave for the duration.

On the bright side, at least with winter, we know approximately when the symptoms (chills, unsteady gait, limited range of motion, risk of falling, and overall slowed activity and metabolic levels) will abate.  And on the other bright side, ok the slightly tarnished by the sort of misanthropy of this sentiment “bright” side, there is a sort of “ha! now you know how I feel every day!” aspect for me here.  Thought of getting up and out fill you with dread?  How will you get to your car?  From your car to your office?  Will you end up sweating into your work clothes from the exertion of simply trudging to the bus stop?  Welcome to my world.

On that note, to my fellow drivers in the “first” snow, I say buck up, accept reality and slow down a little for the love of god.  You’re not helping anyone, including yourself, if in your haste to deny the new constraints of your environment, you end up crashing.

“why don’t you just…”

…not tell me how to do my job when you have no clue.  When it’s asking for way too much, and when it comes from someone who doesn’t have a good idea what that job entails, it really is something I do not appreciate.

This week’s “why don’t you just” comes from a faculty member who thinks that the staff should just come in extra early (when we stay extra late nearly every night) whenever one of her students will need assistance, you know, to ensure that the full amount of assistance is given, no matter how long it takes.  “But we promise them!” she tells me sternly.  “I don’t see what the problem is,” she adds.  Yes, clearly she does not.

The staff are overworked.  They do not have enough resources to do even the jobs that they already do even with the extra time they commit in order to do them, often well and always sufficiently.  E.g., with a few exceptions for doctors’ appointments (my own and others’), the staff members have each come in early and stayed late most days this month.  And yet this woman thinks we can just do…well, more!   Come in early more, and “just go home a little early.”  My telling her that it doesn’t work like this fell on obstinately deaf ears.

The thing that is bringing me down about this is that the person who I’ve been having this discussion with is someone I thought was decent – by which I mean someone who is not so ignorant and short sighted that she couldn’t see that her own experience may not be a sufficient basis of judgment for EVERYONE else’s business.  If this person can think like this, then god damn, imagine how the not good people think?

It brings to mind a saying of my father’s:  “Why don’t you just stick a broom up my ass and I can sweep the floor while I’m at it?!”

got plans?

I did.  I had plans this weekend to pack for the upcoming move.  My body has other plans.

After finally feeling pretty decent this week, it has now been announced that I am going to get my period – and here are the cramps.


Just took one of my precious celebrex.  I should have taken one last night though.  Pain like this is pain you need to get ahead of.


I puked last night.  I spent today nauseous.  Zofran – I love Zofran.  It + ginger + fresh air breaks got me through birthday brunch.  It’s good to have gotten out.  My birthday was feeling like a bit of a bust.  I had to remind myself last night that this is just what my body is like now, that there’s no reason to think my birthday would be any different, so there’s no point feeling ripped off on account of feeling crappy yesterday or today.

woman receiving IV infusion at hospital, black and white with blue washout background

feeling really bad

Since the EEG, I’ve been considering why the hyperventilation condition brought the same sensations as when I feel really, really bad.  I.e., the buzzing, thudding, swaying, graying vision awfulness.  And here’s a thought:  Maybe I’m just hyperventilating when I feel those sensations, I mean when I feel them outside of intentionally hyperventilating for an EEG.  That’s the simplest explanation, right?

I started to feel the tingling this afternoon and I asked the people with me “I need an honest answer here.  Does it seem to either of you that I am breathing oddly?”  My husband asked “right now?”  I said “now and for about the last 20 minutes.”  My friend, who is a speech therapist (works in a B.A.T.H. with lots of TBI and stroke patients) and my husband both said no.  Total, that’s two “no”s, three if you count my own.  But I am not convinced.  Maybe I am “over breathing” very subtly.  How does one measure that?  No, really, that’s not a rhetorical question.  I’m going to ask about this at the follow up neuro appointment.

It would be a nice explanation.  Not easy to adjust necessarily, not if I am lacking awareness of doing it, but something that is relatively innocuous.  And presumably I could do something to try to become more aware of it and then stop doing it.  Wouldn’t that be nice?


On Wednesday, I sent an email out at work to the faculty and staff list letting everyone know I’d be leaving early (boss lady having approved my leaving early for medical procedure) so they would know that I wouldn’t be available for student walk ins.  It’s been a busy week, with it being the 1st week of classes.  “I need to leave at 12:30”.  At 12:28, my boss walks in with a student.  I have my bags on my shoulder, am turning off the air conditioners, and am literally halfway to the door.  She stops me and asks if I have a moment to meet.  “Oh, no, I’m so sorry, I don’t.”  She looks around.  “Well can we sign up for a time to meet with you?”  “No, I do that electronically and I just signed off…” I tell her.  I give the student my card and tell him that if he emails me I would be happy to set something up for next week.  “Are you leaving?” she asks, all alarmed and taken aback.  “Yes.  At 12:30” which by that point, it was.

At 2:00, I had an appointment for an MRI of my brain (with contrast) and my “orbits”.  I’ve had an MRI of my brain before.  Twice.  Once diagnostically without contrast in 2005 and god only knows where because I tried to track it down in 2008 and I think the place closed.  And once in…oh, maybe 2004? for a friend of a friend who was doing research at Yale and desperately needed a fill in subject after one canceled on her.  I don’t mind them too much, just the laying still part.

I did mind the one yesterday.  See, the body’s “new” or at least new relative to head MRIs, trick is overheating.  And MRIs make you just an eentsy bit warm sometimes, more so if you have metal fillings, which I have.  I did NOT go in there thinking “I’ll be my metal fillings will heat up.”  No I did not.  I went in there thinking “I hope I can lie still long enough for these pictures” and “I hope my head doesn’t hurt too much while I’m in there” and “I hope the sound sensitivity isn’t too bad because these things are loud” so this wasn’t some self induced symptom set.  Believe me, I was as surprised as anyone (i.e. the techs) when I got so damned hot I felt like I was going to puke and pass out in the tube and had to come out three times before I finally said “take the headphones off, take the sheet off, take my socks off, and roll up my pants.  If that doesn’t work, I’m taking off my pants because I want to get this done.”

This god damned blew.  But minus some items of clothing (and snuggly warm headphones), I was cool enough to get through the rest of the scans including the contrast just fine.

Now I know how microwave popcorn feels.  Except minus the buttery goodness.

Ok, out into the not hurricane (I live in land of B.A.T.H.s, remember?  According to the major news outlets, we were going to get a HUGE hurricane yesterday.  It turned out to be a mild to moderate rain storm that barely registered on the head/joint pain scale).  Then home for some food then off to the PCP for the follow up on many things.

And that did not go so great.  In retrospect, I don’t think it could have gone great.  I was thinking of writing this as if it did go great and then transitioning it with a reveal, a “tada” moment where I pull away the table cloth after setting out all that fine china and silverware so nicely (in case you aren’t following my very tortured analogy here, I’m going for the settings being my expectations for my visit, which I had arranged just so).  But I decided I’m just too drained and tired and, well, yeah.  Just too pooped for that.  Overall, it was productive and that’s good.  But ugh.  It was rough.  For everyone.  Poor PCP.  Poor me.  Poor husband who was taking notes.  Poor nurse who had to stay until after nine PM (yes, you read that right) when we finally finished.  Poor lab tech who will have to make sense of this req.  Poor ambulatory care staff at the local hospital who will have to administer the IV fluids with Mg and vitamins (yes, oh god thank god finally). Poor neurologist who will get the aftershocks of this appointment in the form of “wtf am I on this CMD for? It’s not doing shit and it’s making several things worse and I had a total breakdown in PCPs office and I think this CMD probably was a part of that”.  Did I say poor me yet?

And did I say poor PCP?  My celebrex rant, triggered thusly:  he suggested a consult to ENT for the sleep thing, I asked “ok but I have to tell you, I’m a little less game on this right now.  I’ve been catching some crap from my boss about missing work and so I’m sort of trying to prioritize what I miss work for.  So would the ENT be a consult where they have really specific directions for what to do or would it be a consult where they would be like the endocrine attending, like ‘um, I’m not gonna do anything really useful right now while you have time to do anything, so I’m gonna send you to someone else who also probably won’t do anything useful, i.e. a dietician, and then I’d like to see you in two months’?”, truly, I did say that.  And he looked taken aback.  So I went on.  I need to learn to do something about that.  I apologized and explained it’s been a rough summer.  I referenced some crappy history with doctors (being told I was having seizures all through adolescence when really I was probably just fainting from hypoglycemia and no one thought to check my blood sugar), that I’d had some things happen recently that kicked that up.  He asked what.  I said the neuro’s nurse had been crusty.  He said “nurses don’t count”.  Then I told him about the celebrex thing.  And he listened.  Then he said very quietly “and here I thought I was doing a pretty good job”.  It made me feel really, really shitty.  I apologized.  But he went on.  He told me that the insurance companies play games with them.  I said I know (but the nurse didn’t even submit the authorization for a month).  He told me that it’s hard to know what it is that they want you to say.  I said I know (but she didn’t ask me what it was I took it for) and that I didn’t think to tell her what I took it for.  His manner was not accusing or angry, but defensive.  It made me, well, I suppose scared.  I thought about this alot later.  Well, honestly I’m still thinking about why it would scare me and I suppose it’s because of parents (sorry, quoting Mel Brooks, High Anxiety).

Truly though, it’s the left overs of my mother’s emotional fuckery – the constant threat that she would leave and her leaving meant leaving me, us, to the physical abuse of our father and the sexual abuse of our grandfather (who lived with us).  Not that she was exactly a champion but (a) less abuse happened in her presence and (b) she was a potential champion to me (I think, not sure about that one…still working on it).  Anyhow, sorry for that detour down psych lane, but it was/is quite relevant.  So I was/am scared by my PCPs defensive, distancing reaction to my feeling that I was “abandoned” (his words, not mine) by his office this summer wrt the celebrex and pain management.  And please keep in mind, when I talk about getting authorization for my celebrex, we’re not talking about me being unhappy in a customer service sense, it’s not the kind of let down you have when the RAM chip you ordered by mail doesn’t arrive the exact day UPS said it would – we’re talking about not having something to take for the fuckloads of pain that go with having your period when you have endometriosis on/in your rectum and growing into the walls of your uterus, growing into the ligaments holding your uterus in place.  A spot on a ureter too.  Yes, they cut it out of some of those spots (not all).  But it grows back and it’s been three years.  So this is a significant amount of pain.

I went through two periods this summer with inadequate pain control, on top of the vertigo, the headaches, the fatigue, the…everything.  There are stretches of many days of this summer that are a shaky smear of shit, blood, pain, nausea and grief.  And if you don’t know why grief, you and I are at different points in the whole being sick thing.

So.  He’s telling me basically how hard it is to be a doctor and I do feel for him, but I think it’s triggering all this “eek, he’s going to abandon me more now because I made him feel questioned/less than perfect/less than adored!” feeling and so I start crying and then just fucking SOBBING uncontrollably.

Husband, who says he can handle all this, is still sitting in his chair.  Later he tells me that he didn’t know what to do.  I tell him gently “I think that it was good that you didn’t say anything because he was clearly feeling defensive and that could have made it worse.   But I definitely could have used some comforting.  I think a physical presence would have been nice.  A touch – in the future – god I hope there isn’t a future.  But you can come over in the future and touch me.  That would be nice.”  Husband thanked me for telling him that.  He sounded sincere.  I don’t think I’m resentful for him not moving while that happened.  I hope I don’t become so.

And now, it’s Saturday.  The sun is out.  The heat has broken.  My fillings finally don’t feel hot.  I have a script for IV fluids and various things I am deficient in from the local hospital’s ambulatory care although I left rather quickly in the nine-PM hour from the PCP’s office last night and only realized as we turned onto the foggy main road that I had totally neglected to ask how to access this service.  I guess I’ll figure it out.

“stay outta the hot sun”

This is the greeting that awaits me at the local dunkin donuts most days. Well, most non work days which today is for reasons I’ll discuss below.  On nonworkdays, there’s a fellow there – who I found a bit creepy at first (I find all men who speak to me without solicitation creepy) but who’s grown on me – I think he rolls in between 9:00 and 10:00 and just hangs out all day alternating between indoors and out to smoke and scratch lotto tickets in the parking lot.  And whenever he sees me, he says “Heeeey!  Howya doin’!  Stayin’ outta the hot sun!?”  I always reply that indeed I am.  I think he says this to everyone but to me it has immediate relevance because indeed, I must stay out of the hot sun.  You see, I am delicate.  I wilt easily.  Sun, hot or not, has always done me in.

And now that I’m…uh….less young, have migraines and chronic fatigue (notice I didn’t say “syndrome” there folks), I especially like to stay outta the hot sun.

Never more so than this summer.  First off, it’s been hot.  Fucking hot.  I know, it’s summer, it’s supposed to be hot.  In the winter, she’ll be complaining about the cold, you’re thinking to yourself (and assume that’s the singular, personal “you” there since I think I have all of one reader of this blog).  But no.  I do tire of the winter but it’s on account of the limitations that ice, snow, and limited light impose.  Otherwise, I like it.  I much prefer cool to hot.  I always have.  I like Fall and winter fashions.  I like boots and heavy tights in neat colors or with cool patterns on them.  I like heavier fabrics even, not just the feel but the look and the drape.  I like hats – always putting them on my head as a kid.  Scarves and gloves are favorite accessories and I am positively giddy when I can bust them out.

Conversely, I fucking hate showing skin.  I don’t like tank tops, tube tops are right out.  I mean, they look ok on some folks.  They even might look ok on me if they are the just right cut, fabric, color, etc.  But I do not ever feel comfortable in summer clothes.  I feel like I’m in drag.  I feel like I’m putting on dad’s shoes and walking around the house in them.  Tee-hee, look at me in shorts!  (which you will never see in fact, not now that I can’t wear combat boots to offset the blocky sportiness or worse, sausage evoking tubularity of shorts – which I find fully offensive on my long boned, pale form).  Long lightweight skirts are what you’ll find wound around me in the summertime.

In addition to the several heat waves of July and my general dislike of the summer, this summer, I have been beset by a sensation I am perplexed by.  Most especially, by what to call it.  I’ve discussed it here.  Dizziness?  Nope.  Not really.  No spinning.  Vertigo?  Well, I described it to my primary care physician and he said (and wrote) “what you describe doesn’t sound like vertigo”.  The neurologist I saw last week said it sounded like “central vertigo”.  My therapist and I have been calling it “imbalance”, with tongues firmly in cheeks.  So I’ve been “imbalanced” all god damned summer.  I had a brief break in early/mid August.  I mean brief.  And now it’s back.  I could cry.  I have cried.  A lot.  Because on top of the fatigue, the joint pain, the headaches, the faintness, the daily diarrhea, the endometriosis and adenomyosis-fibroids-whatever-the-hell-you-call-big-fat-uterus-because-endometrial-tissue-is-growing-INTO-the-walls-of-it pain, on top of all that shit, I’m “imbalanced”.

Another trick my body has learned.

I do want to catch you (singular) up with the neuro appointment and stuff.  Here’s the speedy version:

Probably “transformed/evolved migraine”, god only knows why.  Why for anyone?  MRI with contrast, emphasis on orbits b/c I have lots of unilateral eye pain and visual symptoms.  EEG b/c I had this er, strange episode at the start of all this “imbalance” in early July.  Long story involving not being able to orient to a room – not because of spins/dizzies, just like my brain lost the instructions for how to look OVER THERE.  Very creepy.  EMG b/c I had diminished vibratory reflexes and have “proximal weakness” in my arms.  Had that for a while.  Figured it was just deconditioning.  Probably though I should be able to wash my hair without needing to take breaks.  And my least favorite of them all, a lumbar puncture.  To rule out MS I suppose.  This hasn’t been scheduled yet.  And I’m hoping it ends up not needing to happen.  Had one with the neuro lyme.  It leaked. It sucked.   In the meantime, for the probably transformed migraine that this probably is, I have been prescribed a fucking scary drug called Zonegran/Zonisamide.  It’s an anticonvulsant.  It’s got ugly psych side effects.  He didn’t tell me about those in his office and I did specifically ask “what is the worst not rare side effect it has?”  Oh he didn’t mention “A small number of adults and children 5 years of age and older (about 1 in 500 people) who took anticonvulsants such as zonisamide to treat various conditions during clinical studies became suicidal during their treatment. Some of these people developed suicidal thoughts and behavior as early as 1 week after they started taking the medication.” [1]  Nope.  I guess that’s what I get for saying “not rare”.  Also, the reference I quoted goes on to say “There is a risk that you may experience changes in your mental health if you take an anticonvulsants medication such as zonisamide, but there may also be a risk that you will experience changes in your mental health if your condition is not treated.”  which is 100% true.  The crying started before the Crazy Making Drug (new entry, CMD), and believe me when I say that my condition is fully affecting my mental health.

So.  I’ve been on the CMD since Saturday.  I’m supposed to increase the dose tonight.  I felt pretty darned good on Monday aside from a wee bit of anxiety (it’s rare for me so I really notice it when I have it.  I can count on one hand the number of times I’ve experienced actual physically felt anxiety with the whistles and bells).  Every other day but Monday, I felt like shit.  And yesterday, woooodoggy.  Yesterday was horrible.  Yesterday night was a big fat migraine.  A real doozy.  I’m just ending my period, the weather’s wonky, my neighbor’s apparently taken up step dancing or is auditioning for STOMP or something, since starting the CMD I’ve been waking up mighty early (like 3:30 AM early) so yeah, we had the migraine mix going in full swing.  Since I woke up this AM with a headache still (not a big ol’migraine level one but a headache nonetheless), I called in and used up the rest of my precious sick time.

My one foray out of the house was to dunkies and CVS.  Indeed I am staying out of the hot sun.  At least today.


great idea!

Just reading the news this AM as I wait to do what I need to do with various, er, containers.

Here’s an excerpt from an interesting story – what a great idea!
He’s not a patient, but plays one for class
Students studying geriatrics in Maine live for weeks in N.E. nursing homes
By June Q. Wu
Globe Correspondent / July 19, 2010
Full story at the Boston Globe

Matthew Sharbaugh checked himself into a nursing home recently, complaining of chronic pulmonary obstructive disease, congestive heart failure, and right-side weakness from a recent stroke. He is 24.

Sharbaugh had signed away his youth for the next 12 days to play the part of an 85-year-old man in ailing health at the Old Soldiers’ Home in Chelsea.

A second-year student at the University of New England College of Osteopathic Medicine in Biddeford, Maine, Sharbaugh is one of six students living in a New England nursing home this summer as part of the school’s Learning by Living experiment, founded in 2005 to provide students interested in geriatrics with firsthand experience of the care of the elderly. This year is the first the program has expanded to include a facility in the Boston area.

Sharbaugh, who keeps a daily journal chronicling his observations, said last week: “I never really noticed how hard it is to live like this. I just always thought of old people as grumpy people who are easily upset.’’

By his fourth day, Sharbaugh, of Simsbury, Conn., came to appreciate the patience needed to cope with the daily frustrations facing wheelchair users: a misplaced TV remote, a notice posted too high.

Adjusting to his new life took time. His wheelchair beeped alarmingly every time he tried getting up or shifting his weight. His diet of pureed foods did little to satisfy his appetite. The first time he showered, he was unable to turn his wheelchair and ended up washing just the left side of his body.

Going to the bathroom became an art. With a twinge of shame, Sharbaugh learned to coordinate his bathroom trips with nurse shifts to avoid asking the same care provider for help more than once.

From his wheelchair, Sharbaugh also picks up on details that can enhance or detract from the quality of care for elderly patients.

He notes the importance of communicating at eye-level with the patient, of explaining medical procedures to the elderly and not simply to their adult children.

“It’s extremely difficult to hear the medical jargon and not know what it refers to,’’ Sharbaugh wrote in his journal. “When I have my practice, I will have to be sure to explain the patient’s care in terms that he or she will understand.’’

Established by his gerontology professor, Marilyn Gugliucci, Learning by Living is billed as the only program in the country that allows students to live for two weeks as patients in participating nursing homes, which willingly forgo the revenue, roughly $300 a day for 12 days, to support the initiative.

Gugliucci, who is the College of Osteopathic Medicine’s director of geriatric education and research, said she hopes to expand the program into a national fellowship for students interested in geriatrics.

….“There is a face and story behind every patient,’’ Sharbaugh wrote. “The patient should not be viewed by the conditions that ail them, but by the person beneath the disease.’’

over did (over done part 2)

On Monday, my day off, I overdid it.  Sunday was lost to an electrical problem in my apartment – that meant, for example, no grocery shopping (refrigerator was off) and no co0king.  So on Monday, my day off, I took on a few of the things I didn’t get done on Sunday items.  And I overdid it.

On Friday, I got home early.  The whole department closed up early and I just couldn’t rally myself to (re)start working on a project that’s been waiting in the background.  I will work on it, I truly believe that, but not when I need to completely immerse myself in it for several hours and I only have one hour of time.  So I did a bunch of mundane, routine “housekeeping” tasks at work Friday afternoon and went home early.  Partly as a result of the low level guilt of not working on the bigger project, of leaving early although I didn’t really need to, and partly because I had put off cooking all the lovely food I had gotten at the supermarket on Monday (which I put off cooking because I was overdone Monday and Tuesday), on Friday when I got home, I cooked.  I cleaned.  I washed some delicates in the tub.

It was hot.  The start of the heatwave that is going to sit on top of us all this week.  I had the broiler going in the stove and had water for veggies and pasta going on the burners.  I took lots of breaks, sat in front of the AC in the living room, then back to the kitchen to deal with the food.  By the time my husband got home, I was totally wiped out.  “I made food!” I said.  Like that was worth doing all this stupid overdoing.

And I paid for it.  Friday night, as I was falling asleep, I started to have the dizzies.  The cat meowed pitifully just as I was dropping off to sleep and I woke up abruptly, scanning the room for him.  In my scanning, I was looking at the bedroom door and wondering why it looked wrong, then realized that I was not looking straight ahead (as I had thought) at the door to the hallway but looking to my right at the door to the closet.  It took a long time to straighten out the orientation of the room.  An unpleasantly long time.  And thus began a round of vertigo that has been with me all weekend.

Some time ago, my husband and I were talking about doing things that I usually don’t do.  He had mentioned that he was ok with me sometimes taking a chance and doing more – this is something I struggle with constantly – the lack of my old ability, of my old self sufficiency.  I used to be able to do it ALL.  And I liked that.  A lot.  Having to adjust to not being able to do it all is difficult.  I’m over the hump on it, I mean the worst part was many years ago.  Now, I don’t tend to break down crying as much or get as frustrated and blow up as much.  But now, I struggle more with feeling like my life is very small.  Sometimes I just don’t want to settle for that.  It was in this context that my husband mentioned his acceptance of my limits but also his willingness to help me if I try and fall.

“I think sometimes you need to try it, even if for no reason other than to remind yourself that the limits you impose are for a good reason,”.  He’s right.  This week has been one big trial with some success but with a big price tag.  I honestly think it’s going to take me at least two weeks to recover from all the overdoing, two weeks of carefully measured out energy, of religiously adhered to schedules and routines, of enforced bed times, of eating when I need to whether I want to or not, of pushing fluids even though generally I have very little thirst at all and end up peeing out what I drink in about 20 minutes (I swear it’s like I have a hose that goes from my esophagus directly to my bladder, bypassing everything on the way).  But he is correct in that there is a small gain here and it’s reassurance that when I say “No I can’t do that” it’s for a very good reason.  It’s not just me wimping out or being lazy.  It’s me being judicious, it’s me wanting energy for the day to day, which means that no I may not be able to do this or that today if I want to be able to get up and drive myself to work tomorrow.