Trying to get it right, but it’s hard.  I spend so much of my life trying NOT to feel ill that I have a hard time actually choosing to induce the state in myself.  This seems reasonable.  But in the case of the blood and urine tests for histamine (looking for evidence of mastocytosis), I need to either test when I’m spontaneously symptomatic or do the things that will make me feel bad then test.  When I’m spontaneously symptomatic tends not to be when I can test.  E.g. most days, I feel much worse in the afternoon and evening, and I’m at work during weekdays until at least 4:30, which is when the labs are closing and closed.  I could do the 24 hour urine collection, which I’m supposed to start when I’m having symptoms, but again, work.  How exactly am I going to do a 24 hour urine collection when that 24 hours spans work time?

Funny thing about that.  My boss mentioned he was being tested for diabetes insipidous, which includes a 24 hour urine test (he mentioned it, not I).  “Oh, I think that’s a work from home day” I said to him.  “Yeah, I don’t really want to carry a jug around all day.”  I didn’t say “Man, I know what you mean, I’ve done like 3 of those things and it sucks”.  I didn’t say “At least you’re a guy and you can just, you know, GO right into the jug and not screw around with ‘hats’.”  I did say “well maybe you could get a fancy bag to put the jug in, and then it would just be fashion.”

Oh yes, I did say that.

Sometimes my mouth runs away with me.

On the topic of work, it’s been nearly 6 weeks since I submitted my requests for accommodations at work.  I was asked to come in and be interrogated by HR over two weeks ago, and since then I’ve emailed twice to ask how the process is going, see if they need any more info, and have heard NOTHING.  Not even a polite but uniformative email reply.  How’s that for professional?


I stopped the zonisamide last week.  I also stopped the florinef.  I had to, the nausea and crappetite (that’s “crap(py)” + “appetite”) made it hard to take a med that I was told to take with food to avoid an upset stomach. Upset?  After the last few weeks, I’m amazed my stomach’s even speaking to me.  But it is.

So, I stopped them close together.  And I started them near each other too.  I wasn’t going to because it violated all my training in experimental method but this was my god damned head and the vertigo and headaches were just too much.  So I had been on the zonisamide for just over 1 week.  5 days at 100 mg and 2 at 200 mg.  And I was still having the headaches (a couple of powerful ones at that) and vertigo.  I recall feeling quite horrible and thinking “you know what, I’m going to start this florinef (prescribed after I’d already started the zonisamide, everyone was all on the same page).

And some time later, I noticed I wasn’t having as much vertigo.

And now I’ve stopped both drugs.  And been off both for close to a week.

Guess what’s back.

So…did it
a)  Go away on it’s own
b)  Go away because of the zonisamide
c)  Go away because of the florinef
d)  Go away because of a combination of zonisamide and florinef

My money’s on A.  And not because I like that answer better (although it’s a tie as to whether that one or B sucks more), but because it fits my body so much better for this to be some completely random, unregulable event.   So I’m back on florinef to see what I can see.  Wish me luck.


And damn.  That drug (zonisamide) was bad news.  I stopped it on Wednesday after I heard back from the neurologist who said “stop taking it.  It’s not worth it,” and still it’s making me sick enough to need zofran (nausea med) and I’ve got blood in my pee now.  Holy cow.  So Wednesday night I came home and puked.  Thursday the diffuse pain I’d been having in my back and abdomen turned into rather localized pain that came and went – dull but bothersome in the back and sharp and radiating down in the front.  All on the left side.  I came home and puked again and had a wave of “wow that hurts”.  When husband got home, I went to the hospital.  They were quite nice.  We did not do a CT although the doctor went so far as to order one, then cancel it.  Which I’m ok with because honestly, my gut’s been looked at inside and out (and recently!) and my endo, well, this doesn’t seem like endo.  This seems like the drug.  It might not be but the timing is mighty suspect.

So I now know several things:

  1. I am a confirmed lightweight when it comes to narcotic pain meds.  1/2 mg of dilaudid put me out last night.
  2. I like zofran because I hate nausea.
  3. Zonisamide is definitely “not worth it”.  Not for me anyhow.

hard to swallow

scale image of pill camera used in capsule endoscopy vs. U.S. nickel

PillCam...hey I probably can choke that down.

Down the hatch Thursday. On the plus side, the capsule endoscopy prep is Mag-citrate and not that horrible gallon of liquid plastic crap.  On the down side, I have to do clear liquids “after breakfast” Wednesday. Ha, well that’ll be coffee then clear liquids for the rest of the day because, on the advice of the NP at my last GI doc’s office, I don’t eat breakfast.

And speaking of things to swallow, I had a big helping of familiar but difficult disappointment today, fortunately there was some compassion to wash it down:  I had my follow up/sick visit (nearly all visits are sick visits for me) with my primary care.  Nothing conclusive.  Abnormal fecal fat.  Low BUN.  As reported earlier, the blood cortisol was a little on the low end but still in normal.  24 hour urine was all good.  I asked “what’s low BUN mean?” and he said he really wants that fluid deprivation test the nephrologist ordered.  “It might be diabetes insipidous ‘light’.”  Which is exactly what the nephrologist wanted to rule out.  My PCP asked how the specialists were.  “Were they all ok?  Do you feel like any of them need to be corrected or put back on track for what I sent you to them for?”  “I need to know – it’s my job to coordinate this for you,” he added when I sort of pissed around on whether they all were doing what they were supposed to and how I liked them.  Ok, unpacking that, what I said was “I don’t know.  I think they were ok – I tend to judge doctors more on the follow through, as in how they do if and when tests for the obvious stuff come back negative or equivocal.

Ok, they all seemed decent.  Cardiology was best – she was addressing the hypotension.  Hadn’t gotten the tilt table test, he’s going to make sure she got the results.  I told him that my impression was that endocrine took a sort of a “let’s wait and see”, i.e., it seemed EndoDoc wants to see if what and how I eat is setting off my blood sugar and if that’s what’s making me feel shitty.  “Yes, but I wanted him to look at why you’re hypoglycemic,” my PCP said.

I told the PCP that the nephrologist seemed a little aspergers-y and that I thought he was paying a lot of attention to the lyme disease – which I don’t like, but maybe that’s not reasonable of me.  The PCP explained that Lyme disease can have implications for kidney function.  Ok, I guess I missed that.  I do remember that the nephrologist mentioned something about that.  I guess when doctors start talking lyme sequelae, my brain seizes up.   I mean I sort of heard it when the nephrologist told me that lyme can do something to your kidneys or fluid processing….I think my brain just loaded and ran the scrip I heard so often from my last PCP in CT, who I’d go to when some new thing was rearing its head or when some old thing had gotten worse and who would do a couple of tests, refer me to a naturopath or a questionable specialist, then declare me “post lyme chronic fatigue”-y or “chronic lyme”-y if nothing came back remarkable, which unfortunately went with her then writing me and whatever the symptom was off.  This is how I come to have a chronic rash, for example.  Or the cycling intense fatigue, fevers, malaise (boy that’s a loaded term…I’ll write about it some time) that have been in high gear since early Spring 2009.

BTW, this was the huge fucked up history that poor 1st year resident had to slog through on Friday.  That history plus the bristly prickliness I have about how it and everything that’s come since was all handled by too many of my primary cares, including the one who hemmed and hawed on my initial lyme diagnosis despite this rash.

large E.M. rash on torso, lyme disease diagnosed.  ELISA equivocal, western blot positive IgG and IgM but not CDC criteria

my big fat lyme rash, Summer 2002

At some point in my visit today, my current PCP also apologized for all the tests and appointments.  I told him I knew what I was signing up for – but that this is why I hadn’t rushed off to have that fluid deprivation test done.

Back to the results of what’s been done so far.  In addition to the abnormal fecal fat, normal 24 hour urine creatinine and cortisol, as usual, some vitamin levels came back crappy.  D is low (again) and a couple of Bs were on the very low end of the range.  My magnesium could be better, but it’s in range.  Well, we’ll see how the capsule endoscopy goes.  And the fluid thing.  There are a few things pending, but they aren’t really make or break sorts of things – a couple of repeats and urine electrolytes.  I see that look on his face – the “I’m doing everything I can think of but fuck if I know what’s going on with you” look, and I’m spooked.  He’s not given me reason to think that he’s going to wash his hands of me, get all dismissive of what’s up (e.g. no vitamin therapy, no low dose corticosteroid) but still I felt that sinking feeling.

I’m reassuring myself by reminding myself (with the help of my husband) that if in the end my PCP can coordinate my care, thoroughly investigate any new and enduring symptoms, and treat the chronic stuff as it flairs, he’ll be head and shoulders above most of the doctors I’ve seen in my life, and whole body lengths above nearly all of the doctors I’ve seen in the last 10 years.  Trying to keep my hopes up here.  Realistically up.

Ah, and as for the vertigo/imbalance thing:  He referred me to a neurologist, whom I’ll see soon and locally I hope.  “The dysequilibrium you described does not sound like vertigo” he wrote in his note (which he gives me a copy of at the end of the appointment – I said I liked this guy, right?)  We discussed that it could be migraine in overdrive, in which case I need something more than a prophylactic med (elavil) for it.  And that alone warrants neurology, or as the PCP said “What do I know?  I’m just a bug guy.”  Hardly, but I get his point.

So all that’s a lot to swallow.  But as I mentioned, I knew what I signed up for and it’s nice to have some compassion to wash it down with.

done, for now

Well I’m all done with the three specialists that my primary care referred me to.  Liked two, disliked one.  The cardiologist was nice, I blogged about my appointment with her already.  The nephrologist was, well, I blogged about that too.   And yesterday was the endocrine appointment.  The attending was decent.  Moving slowly, he wants me to keep a food diary and record my symptoms and blood sugar.  Not surprising.  Last night, my husband and I went looking to see if “there’s an app for that”.  Yep.  The ones we found were more for exercise/weight control type stuff, but I think one can be adapted to suit my needs.  Exportable data for Excel format too, which is neat.  Follow up with him in 6 weeks, at which point he’ll decide if it’s worth putting me through tests that actually kind of suck (my AM cortisol was a wee bit low – what they do beyond that involves putting your adrenal glands through a probably unpleasant work out, from what I understand).  So yeah, I’m ok going slower on that.

What was remarkable about the endocrine appointment was the very good experience with the 1st year resident at the B.A.T.H. endocrinology clinic who took my history.  For a guy who’s been a practicing physician for at most one month, he did a stellar job.  Hell, he’d rank as stellar when put up against some people I know who’ve been practicing for 20+ years.  I’m planning to write to the folks at his residency program to tell them this (maybe minus the dig about the 20+ year people).  I was a little concerned that praising a resident for being able to respectfully and compassionately navigating a complex history from a historically, um, high maintenance patient would set him up to be seen as somehow too “squishy” for medicine.  That concern is somewhat influenced by what I saw in grad school – PhD students who cared about teaching and students sometimes found that care used against them as a reason for why they were not where the faculty thought they should be in things like research and publications.  This was a seriously raw deal, since most PhD students are chronically underperforming in those regards when there is no research money to be had and only teaching stipends, but this didn’t seem to deter some of the more obnoxious faculty.  I also was thinking of my experiences working as a unit secretary, which admittedly were usually on surgical units and thus may not transfer well to internal medicine residency programs.  Before you shake your head and tsk tsk, keep in mind that I did marry one of those bastards so it’s not like I went in with prejudices, i.e. thinking all surgeons and surgical residents are assholes.  And I still don’t think that.  But I had plenty of opportunity to see the culture, to see nice residents bullied for being too nice, to see women on the orthopedic surgery service teased and hazed, to see the bitterness that can come out when idealism-based traits clash with the sometimes very cruel realities of residency.

So what did I do?  I asked an MD, because I figured he’d have a decent idea about whether the culture of an internal medicine residency program would be receptive to this sort of feedback.  And I’ll also be asking my primary when I see him next.  Which brings me to…

Thursday night, I had an appointment with my therapist (psych).  We spent a big chunk of time talking about how shitty I’ve felt this entire month.  The dizzy/vertigo/off balance thing has plagued me nearly every day of July.  How horrible!  Truly.  It sucks.  I had been struggling with whether to call my primary and say “hey I know I’ve got all these appointments and tests and shit to deal with the intermediate-long standing crap that’s up but right now, I’m having this new thing and can you help me?”  My therapist thought that was fine to do and encouraged it.  We talked about why I was struggling with this (afraid I’ll be “that patient” who’s always got a new complaint and what that means for me, afraid there will be nothing they can do) and after going over some “how can I say this/what’s the best way to express what is going on and what I want from them?” scenarios, I decided I’d call the next day.  On my way out of the therapist’s office, literally, I was halfway down the hall, my phone rang.  It was my primary care’s office. “We’d like to see you,” said the nurse.  “Wow, I was just going to call you tomorrow!”  “Well great minds think alike,” she said.  “What time do you have next week?”   So I have an appointment on Monday.  Here’s hoping that it’s not just “we looked at everything so far and there’s nothing new to say or do.  You’re just fucked.  Have a nice life.”  They haven’t given me any reason to think that they would take the attitude expressed in that last part, but many other doctors have.  And the first part, well that’s just my chronic worry about all this rotten health stuff.

Tonight, I have a sleep study.  And Thursday, I have the capsule endoscopy.  And then maybe next weekend, the fluid deprivation test that the nephrologist ordered – maybe.  And then maybe I’ll be done for now, maybe no more filling up jugs with pee or passing out on tables for a little bit while I celebrate my husband’s 30th birthday (yes, he’s a young’un).  Wouldn’t that be nice?  Ah well, this is what I signed up for when I said “work me up”.  Let’s hope it leads to some answers and/or treatments.

free at last!

I don’t know if it’s drugs or me or the weather, but I finally have felt  if not well then at least  not awful for several hours.  Several hours of work even.  Several hours of presenting tech options to barely college aged boys who really had much more important things to do than listen to me. 

Yeah, that attitude will last until they realize they need the help.  Damned boys.  Some of them are still in the “I’m not a momma’s boy” stage even when they get to college. 

For one of them, it took all of two hours and he was back here asking “Can I get this book on CD because it really is a lot of reading for me.”  We got to work with me offering only a little bit of moderate gibing.  1/2 hour later he had his required reading as a DAISY book, a free text to speech enabled reader, and even some nice enhanced voices all downloaded and working great on his computer. 

So.  I had already rescheduled this Thursday’s doctor appointment before I knew for sure how I was going to be feeling.  Not a huge loss.  I’ll take rescheduling perhaps unnecessarily if the consolation prize is that I don’t feel terrible.

“What’s going on?”

A friend recently asked this with regards to the health stuff.  She’s been a great friend through this.  She’s busy with her kids and her life several states away, but when we talk about my health problems, she listens and she asks questions and she expresses concern, support, and empathy.  I am so grateful for this.  Especially today, since it contrasts so sharply with some family of mine – specifically, my sister.

My sister knows I had my big follow up appointment on Thursday.  She called me Thursday and Friday, both times leaving a long voicemail message all about her.  Ok, whatever, she’s got her own stuff going on (looking for a new job to escape her PI who has modified the animal research protocols in her lab in bad, bad ways and who is truly an awful boss).  My sister and I talked today and we spent about 3 minutes out of the 45 minute phone call talking about my health stuff and then the rest was all about her.  And not anything new about her and her job search, but a replaying of the top ten greatest hits of what I call “fear and loathing in the biomedical research job hunt”.  She’s massively PTSD from all the family crap, and she has a tendency towards obsessive behaviors.  This was not a fun conversation.  Her transition from hearing about my medical news to the many minutes too long rehashing of the same old shit about her was quite abrupt:  “So, I don’t know if I told you but…” and then on to the thing she has told me nonstop for the last week.

Ugh.  Draining.  I’d understand if I was always unloading on her about my health problems, but truly I am not.  Part of why I blog so much on this shit is that aside from my husband, I don’t have anyone else in my day to day life that I do talk to about it.  Not honestly and unguardedly at least.  Privacy issues, stigma, and the emotional nature of dealing with chronic, disruptive health problems all keep me skimming the surface most of the time in my day to day.  I am very conscious of not wanting to “go on” about this stuff with people.  But I thought at least that my sister would give a shit about the outcome of all that testing.

Sometimes I’m such a blithering optimist.

So here’s what I wrote to my friend who asked “What’s going on?”  The topic started out because I asked if she had a suggestion on glucose meters (her husband’s got type 1 diabetes).  I figure this is a decent update for the blog too.

I got a new doctor who is doing an exceptionally thorough work up. So…had a glucose tolerance test and I’m hypoglycemic. I’ve been dizzy all damned week so he wants me to get a glucose meter to see if the dizzies go with blood sugar. I did a thing called a “tilt table test” a few weeks ago too. It’s meant to test autonomic function, which I guess in this case is really just about looking to see if your nervous system and your vascular system talk to each other right. And I failed it. They put you on a table and hook you up to a heart and BP monitor and you do all sorts of strange breathing exercises. Then they tip you upright to about 60 to 70 degrees so you’re basically “standing” without having gotten up and with most of your weight being borne by the table you’re strapped to. If you nervous system and your vascular system coordinate properly, you might get a little lightheaded but you don’t pass out. I passed out.

This wins me a cardiology consult and a nephrology consult (kidney). Cardio is to make sure it’s not an arrhythmia which has me feeling like shit all the time and which would account for the whole passing out/shittty vascular response I showed on the tilt table. Also, the doc heard a mitral valve murmur when I was in for my follow up (with dizzies).

Nephrology is because I guess I keep testing out as being dehydrated (that whole orthostatic hypotension thing, I stand up but my blood doesn’t) but having low sodium – that plus the feeling like shit plus the passing out on the tilt table might mean my body’s not balancing fluid properly. Apparently nephrologists check that.   Or this nephrologist checks that.  And hey, funny story – the nephrologist was a wee resident I and my sister worked with at the hospital wayyy back in the late 80s/early 90s.  Small world.

And then there’s an endocrine appointment. This is for the hypoglycemia and the feeling shitty.

I also have to pee in a jug for a day and do horrible things with poop and cups and vials and whatnot.

The common element in all of these appointments is the feeling shitty. The new primary care is being remarkably thorough about following the leads, which, while a bit of a pain in the ass to go through is good because I truly do feel fucking shitty and I’ve been dealing with this shit for years now. I’d like to know if there is something that can be identified and treated and he’s the first primary care I’ve had who seems to be interested in leaving no stone unturned before handing me the “well you’re just fucked, I have no answers, enjoy feeling shitty all the time, bye!” answer.

I signed myself up for this. After I discovered my boss was not going to be ok with me having surgery this summer and after I realized how much my (former) primary care largely was not good, I decided to (a) postpone surgery until winter break and (b) spend some time in the meantime finding a new primary care and hopefully getting a handle on some of this feeling shitty all the time shit.

So it’s finger sticks, cups, vials, and jugs for me for the next month or so.

That’s what’s up. And that’s also what happened to your care package that I said I was going to send you before the family road trip west. Once I saw this new primary in June, it was kind of like the staring pistol for a marathon….I had the tilt test and a round of cups and vials the week I was going to get stuff together for you. It ended up a bit of a mess. Sorry. I felt bad. Which is also why you haven’t heard much from me.