balloon animals

This is what I call it when my gut is hyperactive, because what it feels and sounds like is that my intestines are twisting themselves into a variety of playful, amusing shapes.  “Oooh, a giraffe!” I’ll tell my husband after my gut emits a particularly loud set of squeals and gurgles.

So far, it’s been a very balloony week.  This is my fault, well, I precipitated it.  I ate a real meal Sunday night.  What was the real meal?  Homemade meatloaf, mashed potatoes, and green beans.  Yum.  Super yum.  Worth it? I’m not sure.  Yesterday, I barely ate.  The one wedge of kit-kat (early halloween candy has made its way into our office) that I had when my blood sugar was feeling low sent my gut into a frenzy of activity.  I took a levsin.  That helped, some.  Today, I have two meetings to get through – one is going to be in a small, warm room with some important people.  I’m expecting noise, and so I’ll premedicate.

“latch on to”

Every now and then I do a search for “post lyme (disease) syndrome” to see if any new research results or information has been found.  Sometimes I find something interesting and useful, like this, Anti-neural antibody reactivity in patients with a history of Lyme borreliosis and persistent symptoms.  Often, it’s just rehashings of the “chronic lyme” controversy, like this Lyme Disease Complicates Doctor-Patient Relationship.  Despite its promising title, the story is actually less about the complications of the doctor/patient relationship for people who experience symptoms after standard treatment and more about a particular infectious disease doctor’s take on non-standard treatment protocols (the continuing use of antibiotics), and a caution that patients “latch on to” information on the internet to their detriment.

I found the doctor’s portrayal of how patients end up thinking that they have lyme or continuing lyme rather insulting.  It’s a significantly oversimplified one size fits all approach that paints everyone who wonders if they have reasons to consider lyme, treatment refractory lyme, undiagnosed lyme, post lyme, or “chronic lyme” as a boob who believes the first thing they read on a forum thread.  He also completely skips over the part that many of us, with or without a history of a lyme diagnosis, experience:  the doctors who are dismissive, invalidating of our symptoms and the impact they have on our lives, and who sometimes are just horribly uninformed.  That does happen, and when it does, it makes it a lot harder for a patient to be guided by that doctor.  I believe it has a cumulative effect as well, depending on how bad or how many bad interactions like this a patient has with health care providers, it can create a sense of deep distrust.  All of this is skipped over in the article, not even acknowledged as an afterthought or footnote.

I blame the interviewer to some degree – if this was meant to be about how symptoms of unclear etiology get in the way of doctor/patient relationships, then he did a poor job in guiding the doctor to discuss that.  I can’t help thinking maybe it wasn’t meant to be this but this was the label the editors slapped on the interview after listening to the doctor go on about how stupid and/or gullible patients are.

“is it your back?”

My husband is hurting.  His back, to be precise.  It’s all messed up.  He said that he’d had growing discomfort over about a week, and then by Monday it was acutely painful.  The poor guy.  And of course it happens after we’ve moved to a place with stairs.

So far, all he’s got is “back strain” and “spasm” and orders to rest and take pain meds.  It does not seem to be helping much.  And the pain meds are making him sick.  A little alarmingly, his blood pressure’s been spiking.  Although he’s overweight (and that’s probably what did in the back), his blood pressure’s always been really good.  During these episodes of feeling gross, I’ve had him check his blood pressure, thinking that maybe the pain med was dropping it.  Nope.  One thirty something over 89 is not low.  Diastolic-wise it’s quite firmly hypertensive.  Systolic, I guess there’s some debate as to whether 130s is hypertensive or pre-hypertensive.  My passive exposure to medical stuff leads me to the conclusion that this counts as a high blood pressure, but Dr. Google says “prehypertensive”.  If anyone knows if Vicodin can cause blood pressure spikes, please let me know!

I’m so worried about him.  I did get him in to see our primary care Monday, got x-rays, and he talked to a friend who is a neurologist on Wednesday.  We’re told that unless this continues or gets worse, he wouldn’t be a candidate for further imaging and that docs would recommend treating with pain meds, heat, and rest.  I hope we’re not making a mistake by being conservative about this.  My dad had a bad back and it plagued him his whole adult life.  I still remember a car ride back to Big City from my little brother’s college Way Up North one year in the early 90s, my dad had thrown out his back bending to lift a toilet seat.  The local hospital was just like “holy shit we can’t handle that, eh?” and drugged him up and sent us home to Big City where the BATHs abound and the back specialists can handle a disk that has basically exploded.

I do not want this for my husband.

Today is our anniversary.  😦  I bought him  a heat wrap yesterday as a present.  Happy anniversary, apparently 4 years is hot/cold packs.

 

exactly not

My first week at work, I was briefed by office mates on the “volunteer” requirement that staff share for events.  E.g. if you don’t “volunteer” to help at the one in September, you have to do the one in May.  And everyone “volunteers” for the one yesterday.  About a week and a half ago, our department had a big retreat style meeting.  At it, calls for “volunteers” were made for the event that happened yesterday.  Knowing that this was mandatory volunteering, and that if I didn’t take the lead I’d be assigned a task for this event, I approached the coordinator and said “Hi, I’m _________.  I’d like to help out with this, but I do have some physical needs.  I can’t stand for periods of more than about 10 minutes at a time and I can’t work in a warm environment without feeling sick.  What can I do?”  She thanked me for “volunteering” and said she’d get back to me.  A few days later, I got an email telling me that I’d be working in the lobby of the building basically doing door work for this event.  “It’s the coolest place in the building and you will be able to sit down if you need to.”

Flash forward to yesterday.  It was actually the warmest part of the building.  It was up two narrow, steep staircases of marble steps made slippery by the rain and with handrails that were too low to provide real support for the climber.  And there wasn’t a single chair in sight.

While we stood (emphasis on the standing) around waiting for her to give us directions, my hands started to swell up red and puffy, a sign that my blood is pooling in the dependent places and not making it up and around the rest of me.  My feet got hot and painful.  I heard the coordinator telling some other folks working in the lower lobby that after the stragglers came in they could go in to the event or “go about your day”.  I asked if that was the case for those of us working in the upper lobby.  She said yes, and one of the younger workers who was assigned to the downstairs lobby said “Ok, so what you really want to know is ‘when can I leave!?'”  Tee hee.

And right there, I realized how I end up disclosing health information at work that I’d rather not disclose.  That.  Comments like that.  Attitudes like that.  I know it was a joke.  But I don’t know these people and they don’t know me.  Hell, I didn’t know half their names.  And now, for anyone who might be inclined to think this way, I am the slacker who wanted to get out of the mandatory volunteering as soon as possible.  I’m not the good worker who is a team player giving it my all.  Thanks girlie, really.

 

Probably partly because I felt like I had to prove that I was a team player, I stuck it out and tried to work.  I was there for about a half hour (an hour total, half hour of waiting and getting instructions, half hour of working).  Then the ear ringing, dizziness, nausea, headache, and palptitations got to be too much.  I told a coworker that I had to go sit down.  I found a side room with a couch and sink and put a cold paper towel on my neck and laid down.  A short time later, another coworker came in.  “Are you ok?” he asked.  “I’ll  be alright.  I’m just a little dizzy.”  He was concerned and I felt like I should explain so he didn’t think he had to call an ambulance or something (again, disclosure I’d rather not do).  “I have orthostatic intolerance, it means my blood pressure gets really low when I’m standing up for any length of time and it’s worse in a warm environment.”

He said he’d let me rest, asked if I wanted to go back to my office.  Honestly, I wanted nothing more but I couldn’t imagine navigating those stairs then the busy Big City streets in my current state.  And I already was depriving them of one volunteer….me.  If I took someone with me, I would be not only calling more attention to my inability to pitch in but also taking someone else out with me.  How selfish!  I stayed in the side room for a bit.  People came and went.  I felt a bit better but not great.  And I was angry.  I was angry that the coordinator had been so careless with my needs, angry that the girl made a joke at my expense, and angry that now my already busy and difficult day was going to include feeling terrible for most, if not all, of the rest of it.

I did eventually go back to my office, unescorted.  Which was probably stupid but I really did not want the bullshit, the professional minefield that goes with being sick at work.  I saw the coordinator on my way out and said I was sorry to have to go but the lobby was just too much for me.

Back at work.  I told my boss a little of what happened.  She was concerned and (to my relief) seemed pissed off that the coordinator had been given a head’s up about my needs and did such a piss poor job of accommodating them.  I figured at some point after the event, the coordinator would email to check in…to see how I was doing and oh I don’t know, apologize for giving me an assignment that was exactly NOT what I could do.  Nope.

I’ve been wondering if I should write to her.  I’d like her to know that what I stated to her initially was not a preference but a need.  I’d like to know by what process she arrived at the conclusion that her chosen assignment would be ok for me.  And I’d like to know how she heard what I said to her initially.  Maybe I didn’t communicate this right.  Maybe I can do a better job in the future.  Or maybe she’s just a fucking idiot.

“damn your eyes!”

The line from Young Frankenstein is in my head.  The one to which Igor (“It’s pronounced ‘EYE-gore'”) retorts: “Too late!”

I’m hoping in my case it’s not.

Here’s the deal.  For a few years now, since at least 2008, my vision’s been getting a little blurry.  Not bad.  I always pass my vision screenings (although anyone who can think can compensate on those things…why do they use them?  You read it with your good eye then they show you the exact same chart and have you read it again, as if you won’t remember the order of letters and that that now blurred thing that might be a C is an E).

About two years ago, I notice that light on dark things looked weird.  I noticed it first when watching the opening credits in a movie, light titles on a dark background.  “Wow, that’s an irritating font” I told my husband.  He didn’t know what I meant.  I described the shimmering border on the letters, “It looks like they tried to put some fancy engraving effect on it or something but it just looks bad and makes my eyes water”.  With some concern, he explained that it was plain, unadorned white letters.  Shit.  Ok so off to the eye doc I went.  Nope, all good.  Nothing wrong there.

So now it’s two years later.  To the month in fact.  And I noticed last weekend when we were out at night that every light was way too bright, had massive halos on it with spokes of light shining out in a radial pattern broken up by striations of darker circumferal lines that were a little perturbed, warped.  The effect was sort of like seeing thumb prints on all the lights.  Shit.  Really.  I considered how I’d been so much more sensitive to light lately, which I had assumed was just the migraine status that I am always just this side of.  And now I’m realizing that it may not be.  I am experiencing glare effects in my vision, only in my right eye, to the point where it is making it hard to see the keyboard in front of me as I type even (the computer monitor light creates a glare that eats up the keyboard letter contrasts).

Off to the eye doctor I go.  I go to the same place because although I wasn’t in love with them, they had my most recent records and could make a comparison.  I got Ye Olde Timey Eye Doc, who explained patronizingly that “vision is never perfect”.  Excuse me sir, but I’m 40.  About to be 41.  And I am dealing with a vision defect that most people don’t encounter until they are much, much older (unless they have systemic diseases like diabetes, Sjorgrens, etc.).  “There is some mild clefting of the biologic lens” he tells me.  Like that means squat.  He explains (after I prompt him) that this could be the start of cataract.  But that it’s really mild and it’s not uncommon to see halos around pinpoint lights in the dark.  “That’s an extreme condition” (for seeing things) he tells me.  “So then this should be relatively stable, I mean it shouldn’t change  and progress quickly, right?” “It SHOULDN’T” he says.  Then says “Why don’t we check again in 6 months.”

Yeah, well, it’s getting bigger.  I’m not just using subjective measurement.  I’m using the radius of the distortion around a stable point.  The LED on my flashdrive from a fixed distance.  It’s getting larger.  And I’m having more daytime effects now too.  WTF.  I am trying to decide if I should call this doc back or just strike out to find another.  I think the latter will require support from another doc, my primary maybe, to get whoever I see next to realize that I do in fact have other health problems which could be causing this, whatever this is.  Cataract, vitamin deficiency, something.

And so the body has a new trick.  Just when  I was getting used to all the old ones.