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.

phone it in – ADA discussion on Talk of the Nation TODAY!

From the disability service list I’m on:

“Talk of the Nation” will feature the ADA on Wednesday, July 28, at 2:00 P.M. eastern time.

The program title is “20 years after the ADA.” People with disabilities are encouraged to call in and describe the effect the ADA has had on their lives. The show will air on many local NPR radio stations at 2:00 P.M. eastern time tomorrow, July 28. To call in with your comments during the radio program, dial 800.989.8255.

Check your local NPR station for the exact time in your area.

Bloody hell

Because this is just what I needed, I have my period today.  Fantastic.  Well, on the plus side, I’d rather be wracked by pain and constant diarrhea on a day I don’t have to drag my carcass to work.  On the down, I had hoped to clean the apartment, do some grocery shopping, and get to the lab to drop off specimens.  Once the two celebrex, one tylenol, and lomotil set in, I might be able to get about half of that done.

Bloody hell.  At least my friend who is coming up this afternoon is very familiar with this sort of thing.  She has horrible periods.  It’s one of the things we bonded over in college when we were living in the same dorm.  You get to know who will have NSAIDs mighty quick when you’re living in a dorm and you have endometriosis.  My god, did I get some awful periods back then!  Roaming the halls whimpering because I couldn’t sit or lay down bad.  Passing out in the girl’s room or at work bad.

So it’ll be ginger tea and a spot of wine on the menu tonight.  Then hoping for a better day tomorrow.

good and bad

The Bad:  The doctor’s appointment.  Not all bad, but I left (a) super hungry (bit of a wait before hand and it ran into dinner time) and (b) not super happy.  Too much talk of Lyme, Lyme left overs, Lyme-you-don’t-still-have-it-but-it-might-have-fucked-you-up-forever-the-end, etc.  Not by me, mind you.  To me, by him.  And to me, it’s like that annoying song that apparently everyone but you loves because you keep hearing it everywhere.  It’s like the medical macena.  He also played me the runner up for most annoying thing I hear over and over from doctors category:  “Has anyone diagnosed you with chronic fatigue syndrome?”  God damn I hate that question.  Because the honest answer is something like “No, but they sure like to bring it up!  So, do you want to be the first?  Step right up!”  Instead I say something like “No, but doctors have mentioned it.  They’ve also said ‘chronic lyme’, ‘post lyme chronic fatigue’, ‘post lyme syndrome’, ‘treatment refractory lyme disease’ and a lot of other stuff.  But no one has officially diagnosed me with any of it.”  And I feel like I sound super defensive and cranky.  Probably I do.

The Good:  A student with Asperger’s syndrome made eye contact with me today.  My first two meetings with him involved him looking nearly exclusively at the floor about a yard away from his right foot.  Today, blam, he looked me right in the eye.  I’m somewhat ashamed to admit, I can’t remember right now what he said.  I was so, well what’s the right word?  Not surprised, not pleased….um, pleasantly engaged in the contact.   I’m hiring him in the Fall because he seems like a nice kid, because he kicks ass with computers (kid’s running windows as a virtual machine on on old macbook he’s nursing into its “golden years”), and because he said he wants to work on campus, “maybe at the library.”  I suggested he could maybe work for me – I’m always on the lookout for nice people with computer skills, and I have a soft spot for people whose social confidence and/or network might be helped by working for a boss who is very direct, very empathetic, and who takes an active interest in mentoring and providing skill learning opportunities, i.e., me.

He said he would think about it, then returned the very next day with a print out of his schedule saying his parents and instructor said they thought it would be a good idea so he thought about it and he would like to work for me.  Very cool.

So I’m just going to focus on that, my friend coming up, mani/pedi day, iced coffee on the beach, and a four day weekend.  And the hell with the other shit.

winding down the week

Today is the end of the week for me.  During the summer, the staff where I work get some Fridays off.  And believe me, this has been wonderful.  This Friday, a good friend is coming to visit.  Next, doctor’s appointment.  Last, doctor’s appointment.  I can’t tell you how helpful it is to not have to take time off for these appointments.

I stayed home yesterday.  I was just so wrung out Wednesday.  What I did with my day off?  Not much!  Rested.  Ate.  Read.  Listened to audiobook.  Surfed the internet.  Mostly, just felt better.  Oh I also researched accessible ride options through my local public transit and discovered that they do provide them for “temporary” disability.  Which is wonderful.  If this dizziness crap keeps up, I’m going to see about applying for eligibility.  Today, I’m getting a ride in with a coworker, hoping to feel well enough to drive home, then meeting my husband to go to another doctor’s appointment.  If I’m not well enough, the car will stay put where I work indefinitely.

I do not like the latter option.  But I do like that there is a chance I will have other options for transportation to and from work.  Dealing with another limiting limit was getting me down.  This is a bit of a silver lining that makes me happy, or at least less hopeless.

Looking forward to my weekend!


So I was sitting in my car waiting for the taxi to take me home because I felt too shitty to drive (sorry little car, I’m abandoning you at work, again).  I was getting worked up about still feeling shitty, or feeling shitty again, depending on how you look at it.  OMG this is so limiting!!!!

Then my cab arrived.  It’s always so sudden when they arrive, no matter how long you’ve been waiting.

On the way home, we got onto the topic of education – how much it costs in this country.  Health care – how much it costs in this country.  As we were nearing my home, I asked the driver if he had any children (he had brought up his wife, who is American, and how she was thinking maybe they should move to another country).  “I have one,” he said looking back at me in the mirror, “and another on the way.”  “Congratulations” I said, because that is what you say.  He wiped his hand over his face and said “The first one is only 21 months.  My wife – had a difficult pregnancy.  I don’t know how we will do this again.”  “I’m sorry” I said, because I really meant it.  “But what do you do?  I think maybe she should have an abortion, but then the guilt” he pushed his fingers to his forehead in a sharp gesture, like he was pulling something out or pushing it in.  “I feel guilty even now, thinking of it,” he said.

So now what was it I was upset about?  Oh yeah.  My problems.

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.’’

back from the doctor, or “salt, salt, and more salt”

A woman sits in a doctor’s office on a hot day.  It’s been hot for nearly two weeks without much break – a day here and there where it goes below 90.  She gives her history which includes that she’s been feeling dizzy, off balance, for nearly all of the last 2 weeks (give or take a day here and a few hours there) when she overdid it in the heat the Friday before the July 4th.  She’s not sure that the two are related, but that was the only precipitating factor she can think of.  Migraines don’t last this long and she’s not having tinnitus or hearing loss. She doesn’t mention all this stuff about the migraines and the tinnitus because then she’d sound like a know it all Mrs. Snottypants and possibly annoy the doctor.  After she’s been talking for a minute or so, she feels unwell.  Beads of sweat form on her upper lip, she hunches forward instinctively – not in a sudden movement but a slow lean down until her torso is almost but not quite parallel to her thighs.  God only knows how many times she’s adopted this pose without anyone remarking on it.  She assumes that if anyone notices it, they assume she simply has horrible posture and is perhaps a little odd.  The doctor says “are you ok?” “Oh I just feel a little, uh, sick” she says.

And thus began my visit with the cardiologist today.  What ensued was her checking my blood pressure then getting my ass promptly up on the table, having me lay down, and calling for “anything salty” to the staff.  lol.  So I spent most of the rest of the history lying on my back eating some kind of super salty pretzel and chip snack mix.  And drinking two cups of ice cold water quickly (“there’s a reflex that is triggered by that – it gets your blood pressure up” she told me later).

So…I need salt.  She needs my tilt table results (those bastards still haven’t handed over the data!).  It sounds like I have “neurocardiogenic syncope” (I’m pretty sure that’s could be seen as a very fancy way of saying “you faint”).  I have enough crap/symptoms to make her want another echo (I showed her the two I’d had previously, 2006 and 2009), and when my “blood pressure stabilizes” a stress test.  For now it’s salt, compression hose, and a vasoconstrictor, “if you don’t mind that we try a medication,” she added.  I was rather taken aback by this, in a good way.illustration of person putting on compression hose.  Image from the Mayo Clinic.

“Will that make me feel worse at all?”  “I don’t think so, it shouldn’t” she told me.  “I’m mostly concerned because I get migraines.  Is a vasoconstrictor ok to take with migraines?” “Oh yes, actually, a lot of the migraine meds are vasoconstrictors” (oh now she’s excited) “this might work out pretty good for you.  Let’s start on a very low dose, and if you don’t feel well, stop taking it.”  Ok, so I like her.  I may not like where we end up, but I like her approach.

The cardiologist wants to see me in a month to see if I’m doing better on the drug and with hose.  “I know wearing compression hose in this heat would be hard,” she told me.  Hey, it was good of her to think of it.  I told her I’d try wearing them at work since I keep my office very cold.  We’ll see what we can do.  This is me being a good patient.  I have no idea if it will work but I figure hose can’t hurt….um, right?

a little help

This week, I’ve needed a lot of help.  I got rides in to work from my husband, rides home from two different co-workers, and today my little brother is going to drive me to the doctor.

I’m not so great about getting help.  I have a hard time convincing myself that people will not resent needing to help me.  I mean, one or two “favors” is one thing but every day?  Multiple times in a week?  I have this basic, deep rooted assumption that it will be too much.

I have had this for a long time. I’m not sure where it came from.  On reflection just now, I was thinking that the guy I was with before my current husband might be part of the cause.  This boy’s name was Tom.  I say “boy” because although he was only a few years younger than me, he had the maturity of a 18 year old.  An immature 18 year old.  When I got sick with Lyme, he went from freaked out to useless in pretty much no time.  The relationship staggered on for a few years like that, but by the time it ended, him and his useless, immaturity enabling family had decided that I was malingering.  They didn’t say that, they said I was “no fun”, a “granny”, and many other worse things in private I’m sure.  By the end, it had gotten so bad that I was being blamed for any conflict between Tom and his family, and I do mean any.  Tom failed a class (in grad school, you don’t fail classes) and he and his narcissistic father got into a fight about it.  As his dad hung up the phone on him, he yelled something about Tom having “a problem” in his relationship with me and that Tom “needed to fix it”.  Let me just say for the record, I had been nothing but deferential to Tom’s family initially.  It wasn’t until after they promised help with things like a move and two surgeries Tom had and then left us high and dry that I started to voice any objection to their behavior, and even then, I tried very hard not to put Tom in a position where I was pushing him to damn them all.  I was careful not to trash talk them, even when they had done something really, truly rotten.  And believe me, they did do really truly rotten things.

Now I should mention that this is the boy who had type 1 diabetes and who treated it like a chemistry experiment.  That is, he’d eat utter garbage but dose with insulin to “cover” for it.  I had a suspicion that this probably was not a great way to manage diabetes, but it was his life and his body and I’m all about the autonomy.  Or at least I was.  Right up until he got gallbladder disease which announced itself with a nasty bout of pancreatitis late one night.  He was admitted to the hospital after many hours in the ER with Wendell (I don’t recall the ER doc’s last name, just his first) the Wonder.  Wendell the Wonder loaded Tom up full of barium and sent him off for a CT scan – a probably unnecessary CT scan (no other films, no no, just the barium blockade and the extra high radiation exposure CT).  Wendell the Wonder kept Tom in the ER thinking his pain would recede and abnormal labs would resolve just because Wendell was paying attention to them.  No luck.  Tom remained ill.  The CT didn’t show anything interesting.  Tom was admitted.

Tom had a HIDA scan which, the very bad GI doctor informed us, was “within limits”.  The bad GI doctor diagnosed Tom with Gastroparesis Diabeticorum.  I wanted to say “golly doc, I can assign fancy Latin names to shit too.  How about this one?  ‘medicus blennus“‘  Long story short, Tom had gallbladder disease and it took a month and an MRI to diagnose it post discharge.  In the intervening month, Tom would eat like an idiot and ask me to excuse it.  I had already said “I think your gallbladder is fucked.  You get sick every time you have a high fat food.”  I made low to no fat foods for him.  I knocked myself out doing this, but the family fed him things like pasta primavera with cheese and cream sauce.  We’d go out for dinner and Tom would say “Do you think I can get a bacon cheeseburger?”  I finally had had it with this shit, and started saying “I think you should decide for yourself.  I think I don’t want to deal with you being sick all night tonight if you do eat it, so if it were up to me, no – you shouldn’t.  But it’s your body Tom, and clearly you want the bacon cheese burger.”  I was not being passive aggressive, I had been very clear with Tom about how worried it made me when he got sick.  A puking type 1 diabetic is not ok.  I was just completely frayed – I couldn’t understand why he would put this choice on me.  It’s like someone who is stumbling drunk holding up the car keys and saying “do you think I should drive?”  I mean, what are you supposed to say the fifth, sixth, and seventh time they do it?  What do you do when you keep saying “no, I don’t” but other more important people convince him that he’s fine, that it’s not a big deal, that to cave in and limit himself is a sign of weakness not just of body but of mind and basic worth?

During this time and beyond it, I was struggling with endometriosis and the Lyme Disease left overs.  I had doctor’s appointments.  I got sick at work and had to find a ride home.  I passed out.  I missed deadlines in my PhD program.  I knew I needed Tom’s help in the day to day, especially during high volume work times.  E.g., I was scheduling my preliminary exams (for the PhD) and I asked him what month would be good for him.  We get two weeks to take them.  He and I decided on a period when he said he would not be at high work load and could do more of the day to day like shopping and food prep.  “Ok,” I said, “but please don’t start your dissertation proposal until I’m done, ok?  Because I know if you do, you’ll be immersed in that and you won’t have time for food and stuff.”

My prelim time came and about 1/2 week before it, Tom lets it drop that he’s going to start writing his proposal.  His advisor had recommended he do so.  What about our deal?  Well it seems Tom didn’t remember it.  Or didn’t give a shit.  Or didn’t think I needed that much help.  Or thought he could do both.  What he claimed was to not recall, but I had noticed by that point that he “forgot” pretty much anything that was inconvenient to remember or which created the kinds of conflicts that learning to handle is part and parcel of being a grown up.

Our relationship had been strained by his not taking care of himself throughout the gallbladder period, by his family’s just god awful behavior, and by his “forgetting” so many things.  We didn’t fight about my needs and what they meant for us as a couple.  He just shut down.  Ultimately, I and my neediness were blamed for the problems in the relationship.  By “neediness” I mean practical, physical things but also my reaction to finding myself not only without help but supporting this overgrown boy during a time when, for the first time in my life, I did not have extra energy-based resources.

So, this years long experience has not helped my belief that I can need too much for people, that people can burn out, that stressors like a chronic, unexplained illness can create resentment and distance and fractures in what was – under better circumstances – a rather nice, rewarding relationship (and what it can do in the not nice, not otherwise rewarding relationships is another story entirely).  But I know that all this just plugged into an issue I had prior to getting Lyme and not getting better, prior to the endometriosis going into overdrive, prior to the chronic diarrhea and weight loss and malnutrition, prior to the sudden but now chronic hip pain.

I’m not totally sure what that issue is.  I suppose this is what therapy is for.

Today, my brother is taking time off of work to come take me to a doctor’s appointment that I am ambivalent about.  It’s to see a cardiologist.  I have seen a cardiologist before.  But the new PCP is chasing down leads and one of them goes to cardiology.  I’m doing it, and it may win me another day on a monitor or stress test or whatever.  I doubt that it will show anything though, so I’m having a hard time feeling really committed to this.  And I feel like I may be “wasting” a favor, I may be burning through what I can’t help but assume is a limited supply of good, helpful intentions from the people around me.

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.