Which antibody?

I just got a call from my primary care’s nurse asking me “hey Dr. ________ thinks you had autonomic antibody labs done, do you remember which labs they were?”  Now one thing you have to know…these are not common labs.  The one in particular that they were thinking of is the serum ganglionic AChR antibody which goes with Autoimmune autonomic ganglionopathy (AAG).  Never heard of it?  Don’t feel bad.  Most doctors and labs have not either.  And if you just say “anticholinergic antibodies”, odds are you’re gonna get the wrong test.  Gotta be specific, especially on the ganglionic part.  This call wasn’t about me, or my medical record.  It was about another patient who he wanted to order this lab on and wanted to make sure he ordered the right one, where did I have it drawn, who ordered it, etc.   I almost asked if it was my cousin (our parents were adopted from different birth families, we were not raised together nor did we see each other often, but we share a LOT of medical problems….and she just started seeing my PCP this past November) but decided that would be crossing a line.

So there’s another reason I love my primary care.  He knows I came into his office with papers about AAG last Fall, telling him this is what I want to check for. And not only does a patient researcher not freak him out, he sees this as a resource.

Not quite spring cleaning

I cleaned up my blog roll a bit today.  There were some deadends on there (I miss you Queen!) and some links to pages that hadn’t been updated in years, so out they went.  I added a new one, Adam Tilted: Thoughts from a Dizzy Dude.  Hi Adam!  Stop by his blog and say hello.

That is the extent of today’s cleaning I think.  Very little actual cleaning will be done here at Chez Dyspatient.  Possibly tidying up the kitten room a bit.  My god he’s a little slob.  Ah and I just (literally just now) discovered that he is slowly eating his cat furniture.  I turned from my desk to see him chewing on the corners of the cat bed part on top of the cat tree, just in time to see a “GULP” swallow of something.  So I went over and found bits of carpeting all over the place, but more alarmingly, long strands of vinyl looking stuff and staples sticking out.  Yep, staples.  One loose even, sitting on the lower tier of the cat tree.  Oh good lord.  Well, hoping he didn’t eat a staple.  My living room now has a delightful lemony smell, due to the lemon wedge I just rubbed all over Mr. Riley Finn’s chewing corners.  Cats are supposed to hate citrus.  Every cat I’ve had has hated citrus.  But Riley just came over to me and rubbed his face all over my lemony hand though, so he may just think of it as seasoning.

Orange and white tabby kitten in a "cat tree".

Riley in his chew toy.

So the holter monitor is done.  And of course while I had it on, I only had little bursts of that pounding thing, not the sustained for a half hour kind that I had last week and earlier this week.  Eh.  I dutifully recorded it all on the crappy paper…ok, actually I used my iPhone’s notes and speech to text utility to make a log that I then transcribed to the paper one the hospital gave me.  Still quicker and more accurate than me whipping out pen, paper, phone to look at time, remember to push the button on the monitor, drop pen, mis-write something horribly and have to cross it out and start over next to it, oops that takes up too much space, just cross it all out and write a new entry on the next line and while I’m doing that I have another palpitation and should I just fold that into this log entry or add a new one?  Did I mention I have a bit of dysgraphia?  Hence personal peeve about the paper log.  It takes me three times as long to put print on paper as it does to make an electronic text notation.  Especially with speech to text capability.  But that’s done and I’m glad.  Now, back to work on Monday.  Woo-frikkin-hoo!

Still trying to see work as something I can do for now and enjoy the parts of that which are enjoyable.  Sometimes it’s tougher than others.  And I’m not sure how well I will be able to work with this heart thing but I’m gonna give it a shot.  It’s all I can do.

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.

Old school

Got a holter monitor on today, on account of the screwy stuff my heart is doing.  Maybe just POTS gone wild, but I need to make sure I’m not ignoring a potentially bad rhythm.  So 24 hour monitor it is.

While the monitor which records the signals from the leads has seen significant improvements since the last time I had any sort of prolonged monitoring device, the human data recording side has NOT.  I.e. there is still a crappy photocopied piece of paper that they hand out and tell you to record your activities, medications, and symptoms on.  Why is this not electronic?  Why is there not a “holter app” produced and distributed by the company that makes the monitor, that pairs with it via blue tooth and where you can record this stuff instead of scrambling for a sheet of paper and pen while short of breath and trying to remember to also push the button on the monitor?  Hell, I’d even take just an electronic log that DOESN’T pair with the monitor but at least gives you the freedom to program and then select symptoms with just a few taps.  It could be set up to do languages other than English on the patient side, to read items out loud or enlarge the font for patients with vision problems.  It could even prompt you to enter in activity if you haven’t tapped in a while, so the docs who are going to have to read and interpret your monitor’s data will have a better sense of whether you are at rest or not.

We have this technology.  For the love of god, why isn’t it in use?

I suppose one answer is that most cardiac patients are elderly and will be like “you want me to do what now?”  But most elderly cardiac patients also are not going to be able to easily read this tiny, degraded print on the paper log they hand out, or have arthritis and are gonna have a hard time writing legibly in those tiny little rectangles they give you to record your symptoms and activities.  How about for people without a mobile device, they give out a tablet where patients can tap in their symptoms?  It would be SO EASY.

I think another and more on target answer is that the human factor side of medicine is not always given the attention it deserves – not in a real, practical sense.  It’s so very reductionist and so very medical to ignore the patient side of things, to just say “now you need to make sure you do this difficult and pain in the ass thing over and over so that this test/treatment/whatever will work right…” and then just leave it at that.  We know that if you want better results, you need patient compliance with so many things because technology is only going to get you so far and very few tests and treatments are 100% patient-proof.  So acknowledge this, and incorporate it into the new designs. Sure, a smaller, more compact monitoring unit is going to help.  But how much better if in the next generation of at home monitoring devices (blood sugar monitors, BP, cardiac, EEG, the various gastric things they can now send you out with) used this spiffy new technology to make it easier for the patient to record their side of things?

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.

get well soon

An exchange with a friend and fellow blogger just now brought to light a sort of personal pet peeve.  “Get well!” and “feel better!” when said to people with chronic illnesses.  It just doesn’t work.  The sentiment is too easily heard as a command for the person to stop being sick with their chronic condition, a state of affairs they most certainly want but which frustratingly, and sometimes deeply depressingly, eludes them.  And to hear it said so glibly and casually, it can suck.  I know because I’ve been on both sides of it.

Of the two, I slightly prefer “feel better”.  My husband and I have occasionally amended it to “feel better, at least better than this…” but that only works between us because we have a good understanding about what my chronic health problems mean.  I.e. feeling “better” means only a lessening of whatever immediate thing is causing MORE distraction, disability, and devastation.  I.e. “good days” are days when the couch or bed is not your only sphere, they do not mean carefree, painfree days when one can engage in the same lovely ignorance of one’s body as the “normal” people routinely can.

Having a chronic illness means you sometimes “get better” but it’s often unpredictable and always fleeting.  And you don’t ever “get well”.   Wishes for you to do these things can come across as commands for you to push yourself beyond your very real physical limits, can come across as invalidating statements not of kind thought but callousness or outright meanness.  I wish it were otherwise, I suspect that often when people say it they truly mean just to say something nice.  Although when it comes to expressing their thoughts about illness, acute or otherwise, people without chronic health problems often betray their ugly thoughts about it.  “Oh I wish I had what you had,” a supervisor and mentor told me once, about my GI problems, “I could stand to lose some weight”.  Really?  You want this?  You want to not be able to eat anything without needing to run to the bathroom?  You want crippling cramps and gas and weight loss so severe and fast that your hair falls out and your nails and teeth get soft and you catch every infectious anything that comes within a mile of you?  You want to buy new clothes every month because the ones you JUST BOUGHT and only wore a handful of times don’t fit anymore?

I think it is my orientation, which existed before I got sick and didn’t ever “get well”, toward taking things literally. I am better than I used to be, but I still hear the literal in the sentiment…like an echo or a second voice speaking over the one that is attached to moving mouth articulating these blithe words.  “Get well!”  “Feel better!”  sound to me like demands that I throw away my crutches and walk, be healed!  Amen.  And when I don’t, when I fail to, I feel like I am letting these people down.  Like I will be judged.