Healthy Obsessions The Adventures of a Mild Obsessive Compulsive

Category Archives: Medical

Sometimes Grace is Too Hard to Manage

Today was a tough day. Healthwise.

I’ve been on a gluten challenge for two weeks now, at the insistence of the celiac specialist I’m seeing. And… she’s not wrong. I need an intestinal biopsy for an official diagnosis, which will make insurance a hell of a lot easier to deal with. And that requires me eating enough gluten to damage my intestines. But…

There are about a billion symptoms that go along with celiac disease (okay, that’s a bit of an exaggeration), and I’ve got half a dozen of them at the moment. Most distressing was the realization that I’m not actually absorbing the vast majority of my medications. And yeah, it’s pretty obvious. And no, I’m not going into detail on this one. Rare though discretion is on my part.

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Don't Trust Anything That Bleeds for Five Days and Doesn't Die

Was it Heinlein who said that? For some reason, I want to attribute it to him.

Any rate. If you couldn’t tell from the title of this post (and really, it’s a dead giveaway) I’m talking about menstruation. Here’s my menstrual calendar for the last year.

June 2009 – May 2010

I am apparently deeply untrustworthy.

Why I Love the Stanford Medical Clinics

Advanced Technology

Guess how I started my day today? With a spontaneous endometrial biopsy. Which is awesome. Aside from the pain part.

It actually is awesome. I’ve now seen three different gynecologists, two of whom are at Stanford (and I would have gladly seen the same doc both times, but she didn’t have any appointments available). One appointment was at PAMF, and that doc was quite nice, but also quite rushed.

I like PAMF. I get, for the most part, excellent care there. But one of the things that the Stanford docs have over PAMF is simply time. Stanford is an educational institution. Which means, sure, you may get a resident instead of a practicing physician, but it also means they have more time. And they’re more up to date on the newest tests and treatments. And they ask more questions. And they’re willing to run more tests. And they like exploring strange symptoms and conditions.

My first appt. at Stanford Gyn. took an hour, and in that time they did a thorough family history, did a pelvic exam, did a urine test, and gave me a sonogram. Right then and there. They wheeled the machine in and proceeded to show me my ovaries and point out my cysts. They also appreciated that I wanted to see those things.

Poly Cystic Ovary (not mine)

At PAMF, the doc prescribes the sonogram for me and then I have to schedule with Radiology. Which usually means the actual sonogram will happen in another two weeks. And the sonogram tech can’t show me my ovaries or point out where my cysts are, because only doctors are allowed to do that (which makes plenty of sense). But the doctors don’t have time, there, to do these tests themselves.

Today was a follow up to talk about my irregular menses, most likely caused by PCOS.  (I find the term “irregular” ironic in this case, since I bleed quite regularly —  every two weeks). The treatment I’d tried (which actually was prescribed by my endo at PAMF) hadn’t worked. It helped, a bit. Gave me a few more days between periods. But still.

The gynecologist who saw me today went over my options: birth control pills (this is always the first option, but one I don’t want to take), a hormonal IUD instead of the copper, Nuvaring, or a stronger dose of the prior treatment (progesterone pills, taken to provoke a full shed of the uterine lining). But, she said, I want to do an endometrial biopsy and we can discuss options after we get the results.

And she did it right then, right there.

This is the first time anyone has biopsied my endometrium. Considering my history of excessive/irregular bleeding, you’d think that would already have happened.

It wasn’t fun. In fact, it hurt quite a bit. Somewhat akin to the uterine sounding during IUD insertion. Except, in that case, I was already doped out on painkillers and other medications, so that probably actually hurts a lot more in reality.

But. I’m really glad my doctor did it.

(Also – I get that a lot of guys get squeamish talking about female biology, and some of my guy friends will complain about me talking so publically about it. But really, deal. Female  biology, and medicine, needs to be more openly addressed. Making it a taboo subject promotes ignorance, misunderstanding, and poor medical care.)

Follow Up Rant, Having Met the New Doc

I’m hesitant to be publically critical of doctors. They don’t like that, you see.  And getting decent medical care can be dependent on how much your doctor likes you. In a perfect world, it shouldn’t be. But. It often is. So, as I said, I don’t like publically criticizing doctors. However (you could totally tell there was a however coming, couldn’t you?)…

The doc I wrote about meeting  several weeks ago is… well… either he’s a flake or an idiot. I think I’d prefer thinking he was just a flake.

He was nice enough. Pleasant and friendly. Sat down with me to talk about the Celiac screening test I’d had done. And here, in bulleted list, were the things that bugged me:

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Meeting a New Doc Today

Seeing a new doc today. Feeling a bit stressed about it.

For years, when I told my doctors I thought something was wrong, they told me I was wrong. That I was perfectly healthy and maybe I was just depressed.

Fast forward to this past September and the double diagnostic whammy of Sleep Apnea and PCOS. Nothing wrong, my ass. (Actually, there’s nothing wrong with my ass – it’s one of the few body parts with which I’m completely happy).

Any rate, even though I’m going in to see this new doc with those two diagnoses in hand, with a referral from my primary care doc, and with an unquestionably positive Celiac screening test… I’m bracing for getting brushed off. Bah.

So, I’ve been reorganizing my Medical Info Binder. It seems like one of the few productive (and at least not destructive) things I can do with the excess worry-energy. Wanna see pics? I’m so ridiculously proud.

Medical Binder of Massiveness

Interior - With Tabs

Page one is a list of current diagnoses and medications (mostly blurred out for practicality reasons).

The tabs are for the different years. Thanks to the combination of my OCD and my Dad’s OCD, I have medical records going back to 1986. They aren’t all in here, and there are a few years that I didn’t keep track of. But it’s still pretty thorough.

And… it functions kinda like a safety blanket. Or magical armor. Or at least something to occupy my hands.

Fighting the FSA

Hah, my obsessive compulsive record keeping is not useless! (AKA, screw you FSA, and your little dog, too).

My FSA (Flexible Spending Account) is notorious (at least in my experience) for trying to deny payment. Last year they attempted to deny 12 claims, and successfuly denied an additional three – apparently they don’t think chiropractors count as medical expenses. The other claims? Doctor visits.

This year, they’ve tried to deny eight or so. The latest was the bill for my kidney infection treatment. So, I called them and my HR rep called them. Their answer? The receipt the hospital sends them is nonstandard. Only receipts the pharmacies send them are ever okay. Let me replay part of the conversation here:

Me: So, you’ll only deny hospital and doctor visits?

FSA chick: Yes.

However, if I send them an itemized bill (or Explanation of Benefits from my insurance company) they will approve the expenditure. It seems likely that they’re banking on most people either not caring enough to deal with the hassle or not keeping copies of their medical bills and receipts. However, I care. And I keep copies (of course I do – duh).

So I printed out my form letter (this happens so frequently, it seemed like a good idea to create a form letter) and faxed off a copy of my EoB to my FSA administrator.

I’m always filled with this feeling of righteous vengeance when I do this. Not that the FSA particularly cares, or that they’re likely to notice the scornful way I punch in their fax number. But I find it satisfying.

And here’s a handy dandy FSA calculator for figuring out how much it might save you. That is, assuming you want to delal with the hassle.

Sleep Apnea, A Family History (and Rant)

Technically, no one else in my family has ever been diagnosed with Sleep Apnea, but I’m pretty sure I’m not the first to have it.

What I’m about to say will no doubt provoke my father into an argument (one we’ve had before). But.

In 1990, one of my uncles mysteriously died. He was 38, seemingly hale and healthy. No one, at the time, could figure out the cause. All we knew was that during his sleep, he cried out and accidentally struck his wife. By the time she was fully awake and realized something was wrong, it was too late. She called for help, but the ambulance arrived far too late to do anything. The only theory the coroner had was that it was some sort of heart failure.

Sixteen years later another uncle cried out in his sleep, waking his wife. Her cry for help reached their son, who performed CPR while she called for an ambulance. This time, the ambulance arrived in time. It was cardiac arrest, in an otherwise hale and healthy man.

In the hospital, right after the attack but never again repeatable, my uncle evinced a heart arrhythmia. A prolonged QT, somewhat rare and unusual in that it strikes only during sleep. Very simply, that means that his heart took too long between beats.

My father may be right, and Sleep Apnea may have nothing to do with it. But. Sleep Apnea is known to cause cardiac arrest. Sleep Apnea is even known to cause not just heart arrhythmias, but also a prolonged QT.

“After adjustment for age and body mass index, the odds ratios were diminished but still remained significant: Sleep clinic OSA patients had a 2.6-fold greater risk of long QT syndrome than controls, while OSA patients from the general population were at 2.3-fold increased risk.”  – Jancin, Clinical Psychiatry News.

Then let us look at the other comorbid conditions:

Comorbid Conditions for Sleep Apnea

Each condition listed on that graph has enough supporting evidence to be included in the general sleep literature (although “pacemaker” is really more a treatment than it is a condition). But that graph, while lovely and useful (snagged from ResMed) is not absolutely comprehensive.  It can’t be, because 1) it only addresses men, and 2) there are new developments that haven’t yet been accepted into the cannon. We also have evidence of links to Ischemic Stroke, GERD, PCOS, and Metabolic Syndrome.

Let’s be clear here. Correlation does not necessitate causation. Just because two conditions often show up together does not mean that one causes the other. Many of those correlations are still under study, although some (like the one with PCOS) have enough substantiation to be widely accepted.

Then there are the other standard signs (not conclusive on their own, but alarming when taken in conjunction) like snoring, trouble sleeping, frequent wakings, and fatigue (though don’t ever tell a doctor you have fatigue, they seem to think that translates directly to “depression” or “hypochondria”). To my mind, the presence of any of those serious conditions is good enough reason for someone to get a sleep study. Combine them with each other or any of the other signs… yeah. Get thee to a sleep doc.

Back to my family. All on my mother’s side of the family we have: sudden death during sleep, cardiac arrest, heart arrhythmia (specifically prolonged QT), GERD, ischemic strokes, frequent wakings, trouble sleeping, snoring, fatigue, and –if we’re counting me– PCOS and… wait for it… wait for it… SLEEP APNEA.

Sounds like a party, no?

I may be emotional about this issue (all right, I’m definitely emotional about it). But that doesn’t change the fact that within that one branch of the family we have  10 of the conditions known to be linked to sleep apnea — in addition to Sleep Apnea itself. My mom alone has six of those conditions. Six.

There is no way I am the only one.

Edited to add: Oh, ya. And one of my maternal cousins has a Sleep Apnea diagnosis, too. There are at least two of us in my generation.

(Continually Updated List of References)

Putting the FitBit to Bed: Sleep Tracking

Some people apparently use it like this. And then wonder why it slips out.

To use the fitbit for sleep tracking, you slip it into the wristband that comes with it. In this picture (which I snagged from the engadget review) you can see the band and the fitbit. Do not wear it this way. It may look pretty and snazzy like this, but the fitbit will slip right outta there. (Enough reviews complain about this problem that it’s worth noting). Do the smart thing, slip the fitbit all the way inside the band. You won’t be able to see it anymore, but it won’t slip out.

You wear the band on your non-dominant hand. I don’t know why they specify the non-dominant hand, but I’m willing to accept that there’s a reason for it.

When you’re ready to sleep, press down on the button for several seconds until the word Start pops up. Do the same thing in the morning until the word Stop pops up. If you forget, it’s okay. You can add in sleep times manually on the website, too.

So far as I’m concerned, the sleep tracking is the most useful function of the fitbit.

On its own, the fitbit cannot give you conclusive information about your sleep. It can’t tell you if you have DSPS, or Sleep Apnea, or Restless Leg Syndrome. But it can tell you if your sleep is disturbed, which could indicate any of those conditions. Or could indicate that your cat likes jumping on your stomach at 2 am with claws extended.

This is what a good night looks like for me.

Each pink spike in the graph above indicates a time when I moved around while trying to sleep. It doesn’t necessarily mean that I fully woke up each time, just that my sleep was light enough, or disturbed enough, at that point that I moved. At a sleep lab they’d call that an arousal (which is nowhere near as fun as what I usually mean when I use that word). When you’re in a deeper sleep phase, you don’t move around much.

This particular graph is from last Wednesday and indicates a very good night for me. I had 17 brief arousals, and managed to get over eight hours of sleep. I also was asleep at a decent time, which is an issue for me (remember my prior post about charting sleep?).

And here’s a bad night.

A bad night.

You can see that I was a lot more restless that night (Sunday). I still woke up 17 times. But I stayed awake, or aroused, a lot longer. And as I said earlier, not aroused in the good way. I totalled six and half hours of sleep, although I was in bed for 13 hours. This is incredibly useful information; I wish to heck I’d had this info when I was a teenager getting nagged for sleeping in so late on weekends and being zoned out in morning classes (8am Italian was excruciating).

If I’d known how bad my sleep was, I might have been able to do something about it. Or my father (the pediatrician) might have.

You see, I have sleep apnea. Want to know what the difference between those two nights is? The good night, I used my CPAP. The bad night, because of congestion, I didn’t use my CPAP.

See what I mean about that sleep tracking being useful? On its own, the fitbit doesn’t tell me I have sleep apnea. But it does tell me when I’m having trouble sleeping. And these results are consistent enough for me to say that my CPAP definitely makes a difference.

Hours of sleep in March.

Here you can see how much sleep I actually got this month. Not how much time I spent in bed trying to sleep, but how much sleep. This is a key distinction.

You can also see how frequently I wake up during the night. There’s a huge variation there. Some of that correlates with how long I spent in bed (if you’re only in bed for four hours, you’re going to wake up fewer times than you would in eight). But there are other potential factors as well.

Times awakened.

This data can help me figure out if the nights I take a decongestant are, overall, better. Or worse. Or no different from other nights. Likewise with taking Ambien. Or with exercising before bed. Or having a glass of wine before bed. Or changing my diet. Or any other variable I care to examine.

Fitbit Ultra

Sleep That Knits Up the Ravelled Sleeve of Care (with charts!)

I promised you a sleep chart, and here I deliver unto you a sleep chart.

I made several decisions with this sleep chart that might not, at first, make obvious sense. Like, for example, starting the week on a Wednesday.

Sleep Chart 11/14/07 - 11/21/07

(Here it is in PDF: Sleep Chart 11-14-07 — 11-21-07-1. Clean templates are at the bottom of the post)

To tell you the truth, I don’t remember why I did that. I know I had a reason at the time, and it seemed to be a good one. Possibly because I wanted to show how far my sleep wandered between Thursday and Tuesday (seeing as I normally taught Thursdays and Tuesdays).

The other potentially less than obvious choice was the way I arranged the hours. The top of each column starts with 12 pm, so we have the day change (aka night time)  in the middle of the chart. I wanted to show my sleep patterns, and the best way to look at those seemed to me to have the time in which I ought to be asleep showcased as a solid block.

I made the night time hours a darker blue and the daytime hours pale blue, so I could tell at a glance if I was sleeping at the appropriate time of day. Green was for when I actually slept.

My ideal sleep pattern.

In a “normal” pattern, like the one to the left here, the green would have been closer to the center of the chart. That’s pretty much my ideal pattern.

In my actual pattern, well, the green kinda slops all over the place, filling up morning hours and dripping over into the afternoons some days. Except, of course, for the days when I had to be up in time to teach or hold office hours. In which case, those green sections are looking sadly anemic. (Four hours! Can you imagine being coherent enough to rein in a classroom of resentful 18 year olds on four hours of sleep? Gah.)

The one yellow block in my actual chart  is to indicate restlessness. The white block in the middle of the green indicates me being stuck awake for an hour. When I used an alarm to wake up, I wrote that down. When I took a medication, I wrote that down. When I got up to go to the bathroom, I wrote that down, too (bw = bathroom waking).

And here’s the addendum to that chart, which I kept on the same page.

Sleep Chart Addendum

I kept track of my hours of sleep debt at the bottom there. That week adds up to 10.5 hours of sleep debt, assuming 8 hours of sleep a night is the norm. It’s no wonder my charts made an impression on my doctor – they made it pretty clear that my sleep was crap.

If you’d like to try charting your own sleep, feel free to appropriate my templates. Or improve on them. Just, if you improve on them, please give me a copy, too!

As a side note, I realized while working on this entry that the date I’m referring to on Sat-Sun was my second date with my boyfriend. Kind of cool.

How I Learned to Stop Worrying and Love Data

When I say I love data, I don't meant this Data. Although I do love him, too.

You know that line about cleanliness being next to godliness? For me, it’s the collection and organization of data that is next to godliness. Except my version isn’t quite as catchy. I have this underlying belief that by collecting information, and organizing it, and presenting it correctly, we can figure out almost anything. (In my universe, God is a statistician). I can’t tell you how much I wish I’d taken statistics in school.

So, when faced with seemingly endless exhaustion and no solution for it several years ago, I started tracking my sleep.

I’d already gone to a doctor and asked for help figuring out why I was always so tired. She ran a blood test to check if I was anemic and then told me, “You’re just depressed.” Which was pretty, well, depressing. Looking back now, I wonder why she didn’t at least run a thyroid test (not that it would actually have helped, but at least it would have been more thorough). The thing is, I knew I was way more tired than I ought to be. I was 25 and needed more naps than my 85 year old grandmother.

I knew that I had a wonky sleep schedule, staying up until somewhere between 2 and 6 am and then sleeping as late as I possibly could whenever I had the chance. Which, considering that I taught two days a week and then graded or lesson planned the rest, meant that I did that the majority of the time. But then those two days when I actually had to get up and go somewhere and be vaguely alert and coherent were excruciating.

This is what exhaustion looks like, only far cuter.

It wasn’t that I didn’t want to get to sleep earlier, it was that I couldn’t. I would lie in bed, unable to fall asleep, and then give up and read a book. Or grade papers. Or write. Or IM with friends on the other side of the planet.

I began keeping a sleep chart, to actually track when I fell asleep, when I got up, and how I felt during the day. (I’ll see if I can find a copy and post it here, later.)

I also began reading The Promise of Sleep by William Dement, which had been a gift from an ex-boyfriend of mine.  (That ex had been more worried than I was about my ongoing exhaustion. He was certain I had a sleeping disorder long before I was even willing to consider it.)

Reading that book, and looking at my own sleep patterns, it seemed pretty clear that I had what’s known as Delayed Sleep Phase Syndrome. Which simply means that my body wanted to go to sleep at the wrong times. My circadian rhythms were off. The book also talked about several potential treatments, most of which would require prescriptions.

Unsurprisingly, I was pretty wary of going in to a doctor and and asking for help with my exhaustion again. So, I prepared. I actually called up a friend who worked in a military think tank to go over my approach. I wasn’t going to ask for any specific medications (hello, Ambien!). I wasn’t going to tell him what I thought I had. I was simply going to present facts. Then, if necessary, I would present my argument. I gathered together several weeks worth of sleep charts, with the times I’d been asleep highlighted in green.

I went in to my new doctor (you didn’t think I was going to stick around with the lady who told me I was just depressed, did you?). I presented the evidence. He looked at my charts in silence. He looked up at me. “All right,” he said, “I have to confess. I need you to show me how to read this.”

I showed him. He looked at my charts again, and began exclaiming. “What? You don’t get to sleep until after 2 am? You never get to sleep until after 2 am! No, no, no. This is too late. We need to do something about this!”

He ran off, grabbed me some samples of Rozerem (which, I’m sad to say, turned out not to work for me), and told me to call him in two weeks and let him know how it was going. If it wasn’t going well, I was to come back in and we’d try something else.

And that was how I discovered that I could use my OCD need to track data to get myself decent medical care.