This is tongue-in-cheek, you do realize?
I usually have one day a month that’s jam-packed with medical appointments, to the exclusion of all else, and that was Tuesday last. I started off at the dentist’s, where my mouth was judged ready for impressions and crafting of a Permanent Crown!
Next stop: Nurse Nycta for the monthly check-in and psych drugs. We reviewed all things and decided to reduce Lamictal again, this time to 50 mg, and in 2 weeks, 25mg. I felt pretty certain that mood symptoms are aligned with hormonal problems, which the mood stabilizer can’t touch. But she’s as concerned as I about some details the endocrinologist really hasn’t adequately verified, tested, or ruled out.
I mentioned recent heart palpitations; she immediately ordered an EKG, concerned about heart complications from Yaz. The next day, I noted down times when I felt my heart racing, and wouldn’t you know, the palpitations appeared and were most frequent during peak serum level timing, 1-2 hours after dosing. A couple days later, on the placebo pills – no heart palpitations. Can you see where this is going to go?
Nycta also ordered every blood test under the sun, including potassium (part of the heart risk equation), lipids, and all the stuff I really do need checked a couple times a year. Plus all the hormone levels, again.
Third stop: Hippie Dude. By then, I was mostly just worrying about the next appointment and fretting about how bad things had been the week before. I hardly remember what we discussed, other than feeling overwhelmed and anxious about what will happen next. Not the most productive session ever.
Fourth stop: the Reproductive Endocrinologist. The nurse asked me what brought me in, so I mentioned diagnostic questions, concern over lack of any relief, and next steps in treatment when Yaz inevitably fails. When I went in to the endo and tried to go through the same list, he shot me down on point after point. Endometriosis? No, doesn’t cause PMDD (I didn’t say it did) or cyclic symptoms (have you empirically verified the cyclic nature of my symptoms? No?) Perimenopause? No, my periods weren’t irregular before birth control pills and hormone levels appear normal enough to a cursory review (but no one has asked about other qualitative changes, e.g. to duration and flow.)
But nothing is improving, I said, and this is beyond unbearable. So he spent some time berating me for complaining after only 2 months, when I should expect to wait 4-6 months to stabilize on Yaz. It turns out that the only reasons he prescribed Yaz were because it’s FDA approved for PMDD (big fucking deal) and because it has only 4 days of placebos. So if fewer placebo days is what will stabilize things, then I should just skip the placebos, right? No, he says, take the damn placebos. WTF?!?
The next option, since I don’t want to try Lupron, is Danazol. I’m not going to get into the details of why those are scary options, but they are scary. Lupron and Danazol shut down the ovaries completely, so you can imagine the kinds of side effects that entails (chemical menopause, basically.)
OK, so I understand that I should give the Yaz another 2 months. But what about these heart palpitations? He tells me it’s caffeine. How is that possible, I asked, after just one cup of coffee in the morning, same as it’s been for years? That makes no sense. It’s all stress, he says, changing his tune. Again, while I’ve been pretty stressed recently, it’s hardly a change from the status quo. The only thing that has changed recently is Yaz, which is known to cause heart problems. On the drug information insert, you’re instructed to immediately get an EKG if you experience arrhythmia – but my Department Chair Reproductive Endocrinologist knows better than the people who got their pants sued off to ensure that the heart risk warning is included on the patient information sheet. Uh-huh.
During the entire 10 minute appointment, I felt belittled and insulted over and over. The nurse looked uncomfortable – as the doctor dressed me down, she wouldn’t look at me. The student/intern/white coat who was observing looked bored. I mean, the collective body language was just insane – it said, “you’re wasting our time, crazy woman” in no uncertain terms. I tried to stand up for myself and felt like an idiot for it because the doctor just insulted me further. So much for being assertive.
This is by-the-book treatment based on half-assed diagnostic work. I know it’s the standard treatment because I can read WebMD, and any other OB/GYN would also be able to follow the step-by-step algorithm to hormonal obliteration. Or better yet, an NP could do it, probably without being a jerk. The only reason to see a pompous expensive asshole of an endocrinologist is for greater expertise and more options for treating severe cases, and hopefully superior diagnostic expertise as well. FAIL.
So what comes next? Good question; that’s a post for another day. Suffice it to say, though, that this dead end is the end o’ the endo, as far as I’m concerned.
I tend to blog more when I’m upset, but I don’t want y’all to think that everything is always doom and gloom and panic and chaos, because it’s not. It’s just that when I feel well, I’m usually out living life, not writing about it.
Awhile back I started a gratitude journal, which is helping me keep a more balanced perspective on life. And there’s so much more to be thankful for than I could ever blog about. Really. So for the sake of balance (ha!) today I’m going to write about a few of the amazing and wonderful things that have been going on around me, despite the hormonal hurricane that just never seems to let up.
I’ve lost 60 pounds! I’m back to the size I was 5 years ago, and it’s marvelous. I still have a ways to go, but I can finally see my collarbones again, have only one chin, and actually recognize myself in the mirror. A size 12 is a real triumph after a size 20, and 32G is cause for champagne after 32J. I’m totally winning the love-my-body game! Well, aside from the evil ovaries.
I also have a really cute haircut. Instead of beating myself up about being utterly nonfunctional after a total hot mess meltdown on one of those wretched dysphoric days, I wiped my tears and went for a trim. Sure, I was trying to re-exert control. So what? I hated the haircut I had, so it was totally legit. I took in a picture of Ginnifer Goodwin’s adorable pixie cut, and the girl went utterly whackadoodle, leaving my hair about a third of the expected length. But I love it!
We went to the zoo this weekend, taking advantage of truly glorious spring weather, and I pished a bored kookaburra into responding! Pishing is a dying art in the age of mobile apps loaded with recorded bird calls, and in my opinion, less unethical than making a bird believe its territory is being invaded by a rival. Or in any case, less unkind than horrible little children screeching at the poor critters while their parents egregiously misinform them (read the signs, people – kookaburras are from Australia.)
But last weekend, I did sort of help harass some birds, all in the name of science and conservation, when I visited a bird banding station on Lake Ontario. Before anyone gets all PETA on me, it doesn’t hurt them and most birds are totally like whatever about it. Banding a small fraction of the migratory bird population gives us very important insights into biology and ecology; federally-licensed banders record the birds’ sex, age, weight, wing and tarsus measurements, and their fat stores – crucial for migration – are checked by gently blowing on their breast feathers.
Best of all, I got to hold a wild chickadee to release after banding! The spunky little chickadees are more aggressive than most larger birds, and she tried to bite my fingers. I listened to her tiny heart beating at an unbelievable pace that would spell instant death for humans: 550 beats per minute at rest! But that hyperactive heart is exactly right for the 12g of pure attitude that was my little “chubby” chickadee. Nature is amazing!
The field trip was part of an awesome class I’m taking. One of North America’s leading bird conservation institutions is in Central NY, and every spring they offer a field ornithology class. I waffled over spending the time and money, but Mr. Chickadee said I should do it because I’d regret passing up the opportunity. He was so right. I have to drive quite a distance and spend overnights nearby to minimize sleep deprivation (it really is a substantial commitment) but it’s been great. It has also encouraged
forced me to unplug for 18-24 hours every weekend, which is good medicine.
So there you go. I wouldn’t exactly say it’s all sunshine and lollipops, but there have definitely been bluebirds singing this spring. Eastern bluebirds, as a matter of fact.
Since getting my genetic drug sensitivity testing results, I’ve been fascinated with what genetics can tell me about how to best manage my health. Those initial testing results just whetted my appetite, so in January, Mr. Chickadee and I sent in 23andme spit kits.
I found the results pretty interesting. Everything is reported with indicators of certainty based on research – 4 star certainty usually means that there were at least 750 cases, 750 controls, and results replicated at least once in a study of similar scale. For you non-researchers, those are pretty high standards for certainty. The reports are split into categories based on whether it’s about ancestry or health.
In terms of Ancestry, I’m even more of a mutt than I had expected. I have 2.8% Neanderthal DNA, which I had no other way of knowing. I have 99.6% European ancestry (yep, pretty white) but that .4% includes Native American, East Asian, and Sub-saharan African genes – more diverse than Mr. Chickadee, with whom I share almost 78% of my DNA.
Health is broken up into 4 subcategories: health risks, drug response, inherited conditions, and traits. Drug Response is the simplest – there are only a few that get checked, but my results showed increased sensitivity to Warfarin, which would be very valuable information if I ever needed a blood thinner (currently dosage is best guess unless you have gene data.) There is zero overlap in the drug sensitivity/response data between 23andme and GeneSightRx reports, even though 23andme’s gene chips include all the right data for the more detailed drug sensitivity analysis.
Under Health Risks, I’m actually in pretty good shape! My most substantial risks are coronary heart disease (31.4%; 1.29x normal likelihood) and rheumatoid arthritis (6.3%; 1.49x normal likelihood). Unfortunately, heart disease isn’t much surprise – both my mom and grandpa had heart attacks in their early 50′s, and my mom didn’t survive hers. But only about 34-59% of heart disease risk is due to genetics, so I really do have a lot of power to reduce the likelihood of heart problems.
RA was unexpected, but knowing that it’s a risk would make it much easier to catch early, which makes it possible to achieve full remission instead of lifelong disability. Other risks to watch out for include cancers of the stomach and esophagus, PCOS (I have every single currently known genetic marker), and a few others.
But wait – here are a few of my reduced risk categories:
- Diabetes, both types
- Breast cancer
- Multiple sclerosis
Isn’t that awesome? It doesn’t mean I won’t become diabetic and won’t get skin cancer, but it’s just not as likely as the average person, and I’ll take those odds! I have average risk for many other conditions, including bipolar disorder and ADHD, so obviously we only know so much about genetics, and again, environment matters.
In the Inherited Conditions category (I think the category refers specifically to heritable genetic mutations rather than standard variations), I’m only a carrier for one mutation for a kidney disease. Since kids aren’t in the plans, that’s of little concern.
Traits was actually a more interesting category than I had expected. OK, so mostly just novel – it was accurate in predicting straight hair, brown eyes, ability to taste bitterness, blood type, smoking behavior, and several other details.
The big surprise? The Traits report showed that I’m probably lactose intolerant. I had no idea! It turns out that you can be lactose intolerant but still have a relatively high tolerance before your body rebels. And you can also be totally ignorant that your symptoms aren’t run-of-the-mill digestive variability.
Compared to everything else on 23andme’s extensive and fascinating reports, lactose intolerance seems, well, average. But unlike many other conditions, this condition is pretty much diagnosable from the results: genetics are entirely responsible for lactase enzyme production into adulthood.
It’s also something I can act on, today, right now. And so I shall. I’ve been cutting my dairy consumption and while I haven’t been strict enough about it to be certain, it does seem to make a positive difference. So despite my deep love of cheese and yogurt and ice cream, it seems worth continuing to limit dairy consumption (fortunately butter has so little milk protein that it’s safe to consume as much as I please. Well, aside from the coronary heart disease thing…)
All of this is from 23andme’s standard reports – interesting, entertaining, and potentially life-saving information. One of these days, however, I want to download all of my data and run it through Promethease so I can really dig into it.
Although my emotional health has been a bit variable lately, things have been improving in terms of physical health.
I’ve been working on losing weight for what seems like forever, and only started making real progress in April when I finished my PhD. I’ve made quite a bit of progress, I’m proud to say. Much of that has been the result of better regulation of symptoms that led to overeating, but the most recent drug made me so nauseated I could barely eat for a week.
I lost about 5 pounds. The crotch on my favorite fleece lounge pants (once skin-tight) has dropped about 4 inches. The next-size-down bras fit perfectly, including a blessedly underwire-free sports bra, for the first time in years. I had to buy some new jeans.
And I finally crossed The Line.
I’m no longer obese! My BMI is below 30. I literally jumped for joy. It made my
day week, boosted my mood, and almost made up for the nausea. Almost.
Mr. Chickadee sends me comics from his RSS feeds, pretty much every day. He knows what stuff is going to appeal to me, and sends me the best stuff. So today, I’m sharing a couple of comics that made me laugh really hard. All copyright belongs to the respective creators, of course.
P.S. If you don’t know XKCD (the stick man comics) you must hover your mouse over the image to see the complementary alt text. It’s a crucial part of the XKCD experience.