[Contents: medical, TMI, weight discussion, fat hate]
Wait, 33? Is it really 33 weeks?
This whole time I have had no trouble knowing exactly how many weeks and days along I am, and now I'm just like SEVEN AND A HALF MONTHS PREGNANT RARRR LEAVE ME ALONE I DON'T KNOW ANYMORE.
But I can tell you that in just under three weeks, I get to stop the progesterone. I picked up my last refill of that the other day. And in just under four weeks I get the cerclage taken out. At my OB appointment this week I definitely had my doctor WAY UP IN MY BITS THANK YOU to check on cervical position and cerclage status. Apparently everything feels good and we should have no trouble just taking the cerclage out in the office at 37 weeks.
After that comes out, who knows what'll happen. When she put it in, my MFM specialist warned me that some people get it taken out and basically proceed directly to hospital for baby-birthin' time without passing go, some people go home and don't start labor until like 41 weeks. Like many things with pregnancy, IT IS A MYSTERY.
I'm getting kind of ready to be done though.
I mean, I don't want the kid showing up until April. PLEASE, DARK LORD, NO. But while I certainly chose to get pregnant, and I do not in any way regret this choice, fucking a this shit is getting old. I'm kind of over the tireds. I'm kind of over the painful hips. I'm kind of over the nausea OH YES IT'S BACK, I'm way over nothing in the way of food or drink sounding or tasting particularly good, I'm so far fucking over the hormonal bullshit, I'm getting over the times that The Kid makes me even MORE nauseated as they burble around in there, I cannot wait to be able to stop taking the prenatal vitamins that make me gag more often than not STILL, I'm JUST ABOUT DONE.
Conveniently, I am just about done, but, you know.
Also about halfway through writing this I had to stop and eat dinner, and it dawned on me "HEY MAYBE THIS IS YOUR THYROID" and it actually probably is. While unrelenting tired, appetite problems, and mood swings are all pregnancy symptoms and are the short summary of this past week, cold spots on my thighs and ass are not - those are definitely my thyroid. So is the brain fog. YAY AUTOIMMUNE DISEASE yes I have emailed my doctor and I have lab orders to check shit already.
Meanwhile, I have gained weight (although now that I know my thyroid swung a bit I wonder how much is that HA HA GOOD TIMES) and am FINALLY above my starting weight. Barely. If I am doing the math right, I did gain more than the "recommended" pound per week, and I'm sure if my blood pressure weren't fucking terrific my doctors would be freaking out, but that shit is the lowest it's been at any point during this pregnancy for the past two weeks. Instead I got "oh your weight looks okay" - not "we're happy with your weight" any more, I NOTE.
Plus I have literally no swelling. Seriously, none. I'm trying really hard to not get a bad case of the smugs about it. At my appointment this week my OB complimented me "Oh how smart you got a pretty chain to put [your wedding ring] on", because the necklace I was wearing has a pretty silver circular pendant with a small diamond in it. So I held up my left hand with my wedding ring on it and waggled it and said "Oh no, I'm still wearing it". She was surprised. The damn thing is LOOSE on me. Like it spins gleefully around my finger all damn day when I wear it. Trying and mostly failing to not have the smugs.
Also at my appointment this week, I brought up "hey by the way I have thyroid disease and while I do plan on trying to breastfeed, there's not a lot of good information out there about it, do y'all have anything?" and apparently they have a lactation consultant on staff who may have some stuff. So my OB is giving her a heads up so she can do some additional research and I have an appointment with her later this month.
I'm sure my insurance will try to charge me a co-pay for that visit, even though according to the ACA they're not allowed to any more. They definitely charged me a co-pay for when I got tested for a UTI, so I get to fight with them about that. My insurance company also does not have my plan's summary of benefits and coverage available on their subscriber portal - those are required to be available to me by law. They also charged me a whole fuckton of money for my cerclage, for each of the ultrasounds I got, keep trying to charge me co-pays for pre-natal visits... basically, they are terrible and I am super-sick of having to fight them on everything. I can't even get an answer from them about whether I'm supposed to "pre-certify" for my hospital baby delivery, which I need to know for the hospital paperwork that I really need to send in ASAP. So that's fun.
In more annoying shit The Man and I started taking childbirth classes this week, starting with "Infant Care". If you look at the outline on the website, this class is supposed to be 2.5 hours all about "oh shit now I have the kid home WHAT DO I DO". So covering feeding, bathing, clothes, car seats, sleeping, etc. and so on. I know this shit, because I've literally been through it with a sister who is nearly 13 years younger than me, with all of the babies I've cared for over the years, etc. and so on, so I was like wev about it. But The Man has literally zero childcare experience, so we thought it would be a good idea to learn some of this from a neutral, non-hormonal third party.
HAHAHAHAHAHAHAHAH which, that was a good plan, if that were what the class had actually been. I ranted about this on Twitter for a while on Sunday, but basically, our instructor was terrible and kept talking about shit the nurses do in the hospital, there was less than half an hour of hands-on practice (which only covered bathing and changing a diaper), she covered approximately none of the stuff in the packets we were given (which was all of the stuff we were led to believe the class would be about), talked way too fast, went fifteen minutes over, did not give us evaluations to fill out, and the class was in a room that you HAD TO USE STAIRS TO GET IN TO. So I'm writing a very long letter to the department overseeing this about all of THAT. It was a waste of our $55 and a waste of our Sunday afternoon.
This Sunday starts our actual "SO YOU'RE GOING TO HAVE A BABY" classes, that cover birthing techniques, the hospital tour, all that happy crap. Hopefully it's significantly better.
Finally, do y'all even see my belly? I mean holy shit. Also it is definitely starting to move lower. And while it's not clear in the picture, my waist has been getting... flatter. Like, I used to have a really deep crease right through my belly button dividing my belly, and that's flattening out. Also The Kid has pretty consistently been head-down these past few weeks. I have a foot wedged up under my rib cage on my right side. SO PLEASANT, THANK YOU CHILD.
Showing posts with label mental health. Show all posts
Showing posts with label mental health. Show all posts
Friday, March 7, 2014
Thursday, February 20, 2014
Shit Happening To My Pregnant Ass: Week 31
[Contents: TMI, pain]
Short version: hormones are seriously kicking my assssssssssssssss.
I've been upset by some stuff happening in my personal life the past week, and while it's all stuff that would upset or piss me off even if I weren't pregnant, because I am seven million goddamn months pregnant, all of the upset is accompanied by SO. MUCH. CRYING.
I'm not usually one to cry much, and I also really hate crying, so I try to avoid it. SO MUCH CRYING this past week, y'all. SO MUCH. OH MY FUCKING GOD CAN IT STOP NOW.
Crying so much also makes me even more tired than I am otherwise, yaaaaay!
The other hormone that's kicking my ass is motherfucking relaxin, STILL. My poor hips, y'all. My poor goddamn hips. I know I posted a few weeks ago that doing some PT exercises really helped and could get me pain-free. They still really help, but I haven't been pain-free lately. This may also have to do with the fact that I think "why yes, let's make like six stops after my pre-natal appointment sounds like a great plan" and then proceed to do it, but I blame the hormones. Fucking hormones. I semi-woke The Man up this week once as I was getting out of bed because my pubic symphysis cracked so fucking loudly. It's super freaky when it does that, but it feels SO good. And it really lessened the pain I was in.
The other thing that helps is laying with mah Snoogle Mini that my BFF gave me, because she is an amazing person. I lay on my side, then part of it goes between my thighs, the rest gets tucked under my belly and boobs, and it's awesome. I don't sleep with it all night, because it eventually bothers me to not have a pillow between my legs for the entire length of my legs, but when I'm just laying in bed reading or whatever I use it and it's great. It's thicker than my usual between-the-legs pillow and something about the thickness, the firmness, or the position shifts my hips around in a different way that helps ease them back in to a less painful position. RECOMMENDED. Also I'm 6' tall and definitely a fat lady, so do not let your height or weight worry you with this sucker.
I'm also at the stage where I waddle when I walk, and there is NOTHING I CAN DO ABOUT IT. Sometimes if my hips are really wonky it's more of a lurch. I AM THE EPITOME OF GRACE AND DIGNITY, FOLKS. Rolling over in bed is a five-minute production that makes me grateful I have a 100% metal bed frame that is solid enough I can grab my headboard and use it for leverage.
Speaking of bed, I spend a lot of time there! It's soft and comfy! Sadly I don't sleep more than 2-4 hours at a stretch anymore! I finally find a comfortable position and fall asleep. 2-4 hours later, I am woken up by one or more of the following:
I also just have a very limited amount of things I can do in a day, still. Like, I can usually manage doing a full up/down cycle on the stairs in my house a maximum of twice per day. There's fifteen steps to get from the front door to my house, and fifteen steps to get from the floor with my bedroom to the attic, where my sewing room and the laundry are. Oh and to leave the house there's another five stairs. If I am doing a lot of walking or standing (or sometimes even sitting), stairs are right out. And if I do too much of anything in a day, I can be totally wiped out and in extra pain for a day or three afterwards. STILL. AGAIN. GODS.
So I'm having to get even more strategic about what I do in a day and really planning that shit out - like today, I needed to be upstairs sewing, as I have a commission due the end of the month and someone staying with me next week. So in order to both be able to work AND have dinner, I had to plan something to throw in the crock pot. And plan on getting nothing else done besides the sewing and the dinner making, except maaaaybe being able to throw in a load of laundry while I'm upstairs already. It's a delicate balance between getting things done (which improves my mental health) and not moving too much (which keeps my physical health better), but not avoiding movement TOO much, because too little movement adds to the pain too. I frequently fuck it up. It's never ending fucking fun.
Also in really TMI land, so for most pregnant folks, at some point their boobs start, uh, leaking some proto-breast milk. That is week 30 for me apparently, because in the morning I have juuuuust a little bit of crusty nonsense on my nipples. GRACE, DIGNITY, ETC.
Short version: hormones are seriously kicking my assssssssssssssss.
I've been upset by some stuff happening in my personal life the past week, and while it's all stuff that would upset or piss me off even if I weren't pregnant, because I am seven million goddamn months pregnant, all of the upset is accompanied by SO. MUCH. CRYING.
I'm not usually one to cry much, and I also really hate crying, so I try to avoid it. SO MUCH CRYING this past week, y'all. SO MUCH. OH MY FUCKING GOD CAN IT STOP NOW.
Crying so much also makes me even more tired than I am otherwise, yaaaaay!
The other hormone that's kicking my ass is motherfucking relaxin, STILL. My poor hips, y'all. My poor goddamn hips. I know I posted a few weeks ago that doing some PT exercises really helped and could get me pain-free. They still really help, but I haven't been pain-free lately. This may also have to do with the fact that I think "why yes, let's make like six stops after my pre-natal appointment sounds like a great plan" and then proceed to do it, but I blame the hormones. Fucking hormones. I semi-woke The Man up this week once as I was getting out of bed because my pubic symphysis cracked so fucking loudly. It's super freaky when it does that, but it feels SO good. And it really lessened the pain I was in.
The other thing that helps is laying with mah Snoogle Mini that my BFF gave me, because she is an amazing person. I lay on my side, then part of it goes between my thighs, the rest gets tucked under my belly and boobs, and it's awesome. I don't sleep with it all night, because it eventually bothers me to not have a pillow between my legs for the entire length of my legs, but when I'm just laying in bed reading or whatever I use it and it's great. It's thicker than my usual between-the-legs pillow and something about the thickness, the firmness, or the position shifts my hips around in a different way that helps ease them back in to a less painful position. RECOMMENDED. Also I'm 6' tall and definitely a fat lady, so do not let your height or weight worry you with this sucker.
I'm also at the stage where I waddle when I walk, and there is NOTHING I CAN DO ABOUT IT. Sometimes if my hips are really wonky it's more of a lurch. I AM THE EPITOME OF GRACE AND DIGNITY, FOLKS. Rolling over in bed is a five-minute production that makes me grateful I have a 100% metal bed frame that is solid enough I can grab my headboard and use it for leverage.
Speaking of bed, I spend a lot of time there! It's soft and comfy! Sadly I don't sleep more than 2-4 hours at a stretch anymore! I finally find a comfortable position and fall asleep. 2-4 hours later, I am woken up by one or more of the following:
- My fucking hip hurts. (I am an obligate side sleeper, so I am always laying on one hip or the other.)
- I have to goddamn pee, AGAIN.
- FUCKING HELL SHIT DAMN I NEED FOOD.
I also just have a very limited amount of things I can do in a day, still. Like, I can usually manage doing a full up/down cycle on the stairs in my house a maximum of twice per day. There's fifteen steps to get from the front door to my house, and fifteen steps to get from the floor with my bedroom to the attic, where my sewing room and the laundry are. Oh and to leave the house there's another five stairs. If I am doing a lot of walking or standing (or sometimes even sitting), stairs are right out. And if I do too much of anything in a day, I can be totally wiped out and in extra pain for a day or three afterwards. STILL. AGAIN. GODS.
So I'm having to get even more strategic about what I do in a day and really planning that shit out - like today, I needed to be upstairs sewing, as I have a commission due the end of the month and someone staying with me next week. So in order to both be able to work AND have dinner, I had to plan something to throw in the crock pot. And plan on getting nothing else done besides the sewing and the dinner making, except maaaaybe being able to throw in a load of laundry while I'm upstairs already. It's a delicate balance between getting things done (which improves my mental health) and not moving too much (which keeps my physical health better), but not avoiding movement TOO much, because too little movement adds to the pain too. I frequently fuck it up. It's never ending fucking fun.
Also in really TMI land, so for most pregnant folks, at some point their boobs start, uh, leaking some proto-breast milk. That is week 30 for me apparently, because in the morning I have juuuuust a little bit of crusty nonsense on my nipples. GRACE, DIGNITY, ETC.
Wednesday, January 22, 2014
Shit Happening To My Pregnant Ass This Week: Week 27
[Contents: medical, mention of pregnancy loss]
AHHHHHHH THIRD TRIMESTER HOLY SHIT
HOLY SHIT
I spent a lot of this pregnancy not really expecting to get here, you know? Through the first trimester, I was on edge the ENTIRE TIME, because I was spotting pretty consistently, and because I had an early miscarriage in 2012. Then I got through twelve weeks and heard the heartbeat on the Doppler the first time, and it was AMAZING. I could not believe how tight I was wound. I mean, I knew I'd been wound seriously fucking tight, but all of a sudden I was so much more sanguine.
Then we found out my cervix was short and I was at higher risk of delivering early. Which didn't stress me as much as the first trimester, but still stressed me. Most days I could be pretty okay... some days, definitely not. Some days I was convinced I would lose the baby, and lose it before 24 weeks, and oh god, it was going to be terrible.
And then I didn't.
And now it's the third trimester.
And now even if I do deliver early - which I'm not even considered to be at high risk of anymore - every single day, the probable outcomes for The Kid look better and better. And I'm not having contractions, I have no signs of pre-term labor.. everything looks like yup, we're going full-term right now. Kid's growth is on track (and as of last update, hir legs were actually measuring ahead... SHOCK TIME, as both The Man and I are six feet tall), I'm feeling pretty good... wow.
So naturally I have to work not to obsess over kick counts.
My OB doesn't even want me doing them until week 28, and that's the typical recommendation. And there's not a ton of good evidence that they even prevent bad outcomes. And yet!
The Kid is generally pretty active. Generally within an hour after my eating something, there's a flurry of activity. Then late at night when I'm laying in bed. Usually right after I get up in the morning and pee (the first of like EIGHT THOUSAND TRIPS TO THE BATHROOM PER DAY GODS). It's pretty predictable. Some days, though, they're quieter. The day after, they're somewhat more active, and I get all sorts of fun round ligament pain, so my theory is GROWTH SPURT. Then after that we're back to HI WOULD YOU LIKE TO BE KICKED LIKE ALL DAY I HOPE SO BECAUSE THAT'S WHAT I'LL BE DOING.
Today is one of those days.
And even on the less active days, without fail, WITHOUT FAIL, I get to the point where I start worrying "oh shit, I haven't felt The Kid for a while", I get kicked. Unmistakably. Which is nice and reassuring and makes me laugh, because of course. So really, all signs are that The Kid is perfectly fine. And rolling over and changing positions and Kid how did you kick my hip what are you even DOING in there.
I've also managed to significantly improve the problems with my pelvis. I wrote a while ago that it was already spreading, and I came back from 2013 Midwestern Holiday and was in pretty solid, lurching pain for two weeks from PGP, which probably at this point at this point could be called symphisis pubic dysfunction, seeing as how that particular joint has cracked multiple times. Convenient part though is that a lot of the exercises recommended for that are the exercises recommended for my back. So I've been doing some pelvic tilts, pelvic side shifts to straighten out my spine (because I've noticed that's crooked again), some gentle leg lifts and rocks, things like that. And holy shit, have I mentioned I'm a huge believer in PT? Because now I'm not in pain anymore.
I still have to be careful - I can tell if I go up and down my stairs too many times in a day, for example, and I've more or less given up on doing a full grocery shop, because it's just too much. So I got groceries delivered last week. I can still stop and pick up a few things if we need them though, and that helps. But oh man, now it doesn't hurt to get out of bed any more. And my sciatica was flaring a bit, and that's eased too.
Fucking physical therapy, yo. Fucking MIRACULOUS.
I've also realized that oh shit, I need to eat like ALL THE TIME, and probably if I'm feeling just kind of bleah, it's because I need food. I can also tell if I skip my prenatal vitamins for a day, even if I replace them with a regular multivitamin. I don't know what's in them that makes the difference, but if I don't take them, I get way more emotional, and way more in the mood to just curl up in bed and never, ever leave. I had a day last week, after I'd skipped the vitamins for two days, where basically I was just a complete hormonal, weepy mess. And this weekend after skipping them for one day, I could feel myself going back there. So NO SKIPPING FOR ME too bad they still taste terrible.
OH MY FUCK GOD I'M GOING TO HAVE A BABY SOME TIME IN THE NEXT THREE MONTHS HOLY FUCKBALL SHIT
AHHHHHHH THIRD TRIMESTER HOLY SHIT
HOLY SHIT
I spent a lot of this pregnancy not really expecting to get here, you know? Through the first trimester, I was on edge the ENTIRE TIME, because I was spotting pretty consistently, and because I had an early miscarriage in 2012. Then I got through twelve weeks and heard the heartbeat on the Doppler the first time, and it was AMAZING. I could not believe how tight I was wound. I mean, I knew I'd been wound seriously fucking tight, but all of a sudden I was so much more sanguine.
Then we found out my cervix was short and I was at higher risk of delivering early. Which didn't stress me as much as the first trimester, but still stressed me. Most days I could be pretty okay... some days, definitely not. Some days I was convinced I would lose the baby, and lose it before 24 weeks, and oh god, it was going to be terrible.
And then I didn't.
And now it's the third trimester.
And now even if I do deliver early - which I'm not even considered to be at high risk of anymore - every single day, the probable outcomes for The Kid look better and better. And I'm not having contractions, I have no signs of pre-term labor.. everything looks like yup, we're going full-term right now. Kid's growth is on track (and as of last update, hir legs were actually measuring ahead... SHOCK TIME, as both The Man and I are six feet tall), I'm feeling pretty good... wow.
So naturally I have to work not to obsess over kick counts.
My OB doesn't even want me doing them until week 28, and that's the typical recommendation. And there's not a ton of good evidence that they even prevent bad outcomes. And yet!
The Kid is generally pretty active. Generally within an hour after my eating something, there's a flurry of activity. Then late at night when I'm laying in bed. Usually right after I get up in the morning and pee (the first of like EIGHT THOUSAND TRIPS TO THE BATHROOM PER DAY GODS). It's pretty predictable. Some days, though, they're quieter. The day after, they're somewhat more active, and I get all sorts of fun round ligament pain, so my theory is GROWTH SPURT. Then after that we're back to HI WOULD YOU LIKE TO BE KICKED LIKE ALL DAY I HOPE SO BECAUSE THAT'S WHAT I'LL BE DOING.
Today is one of those days.
And even on the less active days, without fail, WITHOUT FAIL, I get to the point where I start worrying "oh shit, I haven't felt The Kid for a while", I get kicked. Unmistakably. Which is nice and reassuring and makes me laugh, because of course. So really, all signs are that The Kid is perfectly fine. And rolling over and changing positions and Kid how did you kick my hip what are you even DOING in there.
I've also managed to significantly improve the problems with my pelvis. I wrote a while ago that it was already spreading, and I came back from 2013 Midwestern Holiday and was in pretty solid, lurching pain for two weeks from PGP, which probably at this point at this point could be called symphisis pubic dysfunction, seeing as how that particular joint has cracked multiple times. Convenient part though is that a lot of the exercises recommended for that are the exercises recommended for my back. So I've been doing some pelvic tilts, pelvic side shifts to straighten out my spine (because I've noticed that's crooked again), some gentle leg lifts and rocks, things like that. And holy shit, have I mentioned I'm a huge believer in PT? Because now I'm not in pain anymore.
I still have to be careful - I can tell if I go up and down my stairs too many times in a day, for example, and I've more or less given up on doing a full grocery shop, because it's just too much. So I got groceries delivered last week. I can still stop and pick up a few things if we need them though, and that helps. But oh man, now it doesn't hurt to get out of bed any more. And my sciatica was flaring a bit, and that's eased too.
Fucking physical therapy, yo. Fucking MIRACULOUS.
I've also realized that oh shit, I need to eat like ALL THE TIME, and probably if I'm feeling just kind of bleah, it's because I need food. I can also tell if I skip my prenatal vitamins for a day, even if I replace them with a regular multivitamin. I don't know what's in them that makes the difference, but if I don't take them, I get way more emotional, and way more in the mood to just curl up in bed and never, ever leave. I had a day last week, after I'd skipped the vitamins for two days, where basically I was just a complete hormonal, weepy mess. And this weekend after skipping them for one day, I could feel myself going back there. So NO SKIPPING FOR ME too bad they still taste terrible.
OH MY FUCK GOD I'M GOING TO HAVE A BABY SOME TIME IN THE NEXT THREE MONTHS HOLY FUCKBALL SHIT
Friday, January 17, 2014
Full Genetic Sequencing for Fetuses and Motherfucking Ethics
[Contents: ableism, eliminationist rhetoric, fat hate]
I briefly mentioned this article on Twitter yesterday: What Fetal Genome Screening Could Mean For Babies And Parents. That's a donotlink link, by the way. The article was published in Scientific American.
I'm not even sure I can adequately express how deeply I'm disturbed and frankly disgusted by the attitudes expressed by the scientists in the article. The first few commenters are even worse.
Basically, some bioethicists at Brigham & Women's Hospital in Boston, MA have published in The New England Journal of Medicine that YUP, parents should be able to get this with appropriate genetic counseling services.
That in and of itself isn't necessarily so bad, although "genetic counseling" leaves open a big door and there's lots of variation as to what it includes and entails. Then you get in to their reasons for arguing this. The big one cited is "Parents may emphasize diet and exercise more for a child at heightened risk of diabetes, for instance."
BECAUSE YES, SINGLING OUT A KID FOR DIFFERENT TREATMENT FROM DAY ONE FOR A DISEASE THEY DON'T HAVE BUT MIGHT GET IS SUCH A GREAT FUCKING IDEA, FOLKS.
I just... look. If you are different as a kid already, that's hard enough. Kids who have illnesses that require treatment, like special diet plans, medication, or other treatments visible in public, are incredibly stigmatized on a routine basis. And while the article makes the point that genetics do not guarantee a disease, this argument for fetal full genome sequencing completely ignores that. It's arguing you should treat your kid differently on the basis that they MIGHT get a disease (a disease we associate with OMG OBESITY, by the way - I don't think THAT'S a mistake), marking them from early childhood on as someone who's less than, someone to be pitied, mocked, someone who's impure.
The rest of the article is from some other scientist all dismissive of "perfect baby quest" concerns, and all "WELL IF PARENTS WANT IT THEY SHOULD GET IT". Which is a shitty, shitty argument. "Well I want it" is no basis for a solid ethical decision. And her reasons for dismissing ethical dilemmas about the potential for parents terminating a pregnancy because they found out they fetus' eyes would be brown instead of blue, for instance, is "well not everyone would get it". Which doesn't eliminate the ethical problems at all! And there's a brief mention of "well fetuses can't consent", but it doesn't even remotely touch on what the ethics are of having your genetics on record before you're even born, much less consent. Can you imagine insurance companies with that information, for starters?
Then you get to the comments, and the first few are so deeply ableist and eliminationist, jesus fucking fuck. They straight up say there are no ethical problems with this, and raising a child with an illness or disability is not loving. "That's the unethical thing", one person says. You'd be a bad parent to not get it is strongly implied, because giving birth to a kid with a disease is abusive.
Yes folks, someone argues that it's unethical for people with disabilities to even be born.
I... holy shit. This person thinks I shouldn't have been born. This person thinks that my kid shouldn't be born, because I opted for absolutely zero genetic testing or screening. This person thinks that a whole fucking bunch of people I know shouldn't have been born, because they weren't born "perfect".
Holy. Fuckball. Shit.
So yeah, you're damn right I disagree.
I absolutely think there is an ethical debate to be had here.
In some respects, this is a debate many pregnant people and their partners have. The Man and I had a discussion about it, although in our case the discussion was short. While full genetic sequencing was not offered to us, we were offered other testing, including a nuchal translucency scan, a quad scan, chorionic villi sampling, and more. We turned them all down. Part of that, honestly, is because The Kid is at low risk of developing anything those are testing for. The bigger part of it is that even if The Kid did have something that was being tested for, such as trisomy 21 (better known as Down syndrome), we wouldn't do anything about it. We wouldn't terminate the pregnancy. We'd have The Kid, and we'd love them, and raise them the best we could. The Plan would not change.
We did get the "standard" anatomy scan between 18-24 weeks. If that had discovered that The Kid had a condition wherein there was no way they would survive to term or outside my uterus, at that point we would have terminated. If that had discovered Trisomy 18 (also known as Edwards syndrome), where the majority of fetuses die before birth, and approximately 8% of those who are born survive past the first year, that would have prompted more conversation, although we likely would choose to continue the pregnancy anyway, with monitoring.
Those are our decisions. (And shoutout to my midwife and OB who are 100% supportive of them.) And yet this commenter thinks those are unethical. Wow.
But if you think that if a fetus has a disease, or a potential for a disease down the road - because let's be real, 99% of what fetal genome sequencing would find would be the potential for a disease - then that fetus shouldn't be born, where do you draw the line? Obesity is considered a disease - should fetuses with higher risk of obesity not be born? Ehlers-Danlos? What about my Hashimoto's? What about schizophrenia? Cancer? Does it matter what kind of cancer? Diabetes? Does it make a difference if it's Type 1 or Type 2?
Because here's the thing - we all get sick. Each and every one of us. Every single one of us carries within us the potential for a whole host of things, from heart disease to cancer to fuck all knows what else. And genetics are not a guarantee of disease. We don't even know which genes are tied to which conditions, in most cases, much less how the complex interplay between genetics and environment determines who gets what and when. We just cannot predict, outside of a few things diagnosable in utero, what any fetus will get in their life after they're born.
Moreover, we rank diseases and disabilities. I've already done it a few times in just this piece. I think most if not all of us have that sort of internal ranking. "Well Hashimoto's is bad and an autoimmune disease, but it's not thyroid cancer" is another one I have. I also think that our wider society's rankings of disease and disability go beyond their treatability, the pain and suffering they cause, their risk of death, etc. and gets way in to aesthetics. See also, obesity is considered a disease. As I mentioned earlier, I don't think it's a mistake that "diabetes" was the example given by the bioethicist arguing for fetal genomic sequencing. We perceive Type 2 diabetes as preventable, as well as caused by obesity - which we also consider preventable. It's one of the diseases where society really likes to blame the person for getting it.
And to use that potential of disease or disability as a screener to determine which fetuses should be born or not is so abhorrent. Even if they do have the potential for something that's really scary, that's not a guarantee. Conflating giving birth to a fetus with the genetic potential for something you don't like with abusing that child, or with a death sentence, is mendacious as fucking hell, not to mention unethical.
Finally, the idea of health at every cost comes out here. As if we owe it to ourselves, to society, to our children, to be absolutely healthy. To do everything we can to be healthy. And let's be real, it's a real narrow definition of healthy that's always used here, and it absolutely includes "not fat". It also doesn't include "uses a wheelchair", "has a mental illness", or "has a chronic disease that limits their activity". We're all supposed to be thin, preferably white, happy, active, totally able-bodied people. Anyone outside those parameters need not apply.
Fuck that.
Fuck that narrow definition of health, and fuck anyone who thinks I owe fitting in to that definition to them or to "society". And fuck anyone who thinks that as a presumptive parent, I owe it to anyone for my children to fit that narrow, ableist, racist, hateful mold. Fuck the entire idea that if you and your body and mind are less than "perfectly healthy", that you shouldn't be here. Fuck that fuck that fuck that.
I briefly mentioned this article on Twitter yesterday: What Fetal Genome Screening Could Mean For Babies And Parents. That's a donotlink link, by the way. The article was published in Scientific American.
I'm not even sure I can adequately express how deeply I'm disturbed and frankly disgusted by the attitudes expressed by the scientists in the article. The first few commenters are even worse.
Basically, some bioethicists at Brigham & Women's Hospital in Boston, MA have published in The New England Journal of Medicine that YUP, parents should be able to get this with appropriate genetic counseling services.
That in and of itself isn't necessarily so bad, although "genetic counseling" leaves open a big door and there's lots of variation as to what it includes and entails. Then you get in to their reasons for arguing this. The big one cited is "Parents may emphasize diet and exercise more for a child at heightened risk of diabetes, for instance."
BECAUSE YES, SINGLING OUT A KID FOR DIFFERENT TREATMENT FROM DAY ONE FOR A DISEASE THEY DON'T HAVE BUT MIGHT GET IS SUCH A GREAT FUCKING IDEA, FOLKS.
I just... look. If you are different as a kid already, that's hard enough. Kids who have illnesses that require treatment, like special diet plans, medication, or other treatments visible in public, are incredibly stigmatized on a routine basis. And while the article makes the point that genetics do not guarantee a disease, this argument for fetal full genome sequencing completely ignores that. It's arguing you should treat your kid differently on the basis that they MIGHT get a disease (a disease we associate with OMG OBESITY, by the way - I don't think THAT'S a mistake), marking them from early childhood on as someone who's less than, someone to be pitied, mocked, someone who's impure.
The rest of the article is from some other scientist all dismissive of "perfect baby quest" concerns, and all "WELL IF PARENTS WANT IT THEY SHOULD GET IT". Which is a shitty, shitty argument. "Well I want it" is no basis for a solid ethical decision. And her reasons for dismissing ethical dilemmas about the potential for parents terminating a pregnancy because they found out they fetus' eyes would be brown instead of blue, for instance, is "well not everyone would get it". Which doesn't eliminate the ethical problems at all! And there's a brief mention of "well fetuses can't consent", but it doesn't even remotely touch on what the ethics are of having your genetics on record before you're even born, much less consent. Can you imagine insurance companies with that information, for starters?
Then you get to the comments, and the first few are so deeply ableist and eliminationist, jesus fucking fuck. They straight up say there are no ethical problems with this, and raising a child with an illness or disability is not loving. "That's the unethical thing", one person says. You'd be a bad parent to not get it is strongly implied, because giving birth to a kid with a disease is abusive.
Yes folks, someone argues that it's unethical for people with disabilities to even be born.
I... holy shit. This person thinks I shouldn't have been born. This person thinks that my kid shouldn't be born, because I opted for absolutely zero genetic testing or screening. This person thinks that a whole fucking bunch of people I know shouldn't have been born, because they weren't born "perfect".
Holy. Fuckball. Shit.
So yeah, you're damn right I disagree.
I absolutely think there is an ethical debate to be had here.
In some respects, this is a debate many pregnant people and their partners have. The Man and I had a discussion about it, although in our case the discussion was short. While full genetic sequencing was not offered to us, we were offered other testing, including a nuchal translucency scan, a quad scan, chorionic villi sampling, and more. We turned them all down. Part of that, honestly, is because The Kid is at low risk of developing anything those are testing for. The bigger part of it is that even if The Kid did have something that was being tested for, such as trisomy 21 (better known as Down syndrome), we wouldn't do anything about it. We wouldn't terminate the pregnancy. We'd have The Kid, and we'd love them, and raise them the best we could. The Plan would not change.
We did get the "standard" anatomy scan between 18-24 weeks. If that had discovered that The Kid had a condition wherein there was no way they would survive to term or outside my uterus, at that point we would have terminated. If that had discovered Trisomy 18 (also known as Edwards syndrome), where the majority of fetuses die before birth, and approximately 8% of those who are born survive past the first year, that would have prompted more conversation, although we likely would choose to continue the pregnancy anyway, with monitoring.
Those are our decisions. (And shoutout to my midwife and OB who are 100% supportive of them.) And yet this commenter thinks those are unethical. Wow.
But if you think that if a fetus has a disease, or a potential for a disease down the road - because let's be real, 99% of what fetal genome sequencing would find would be the potential for a disease - then that fetus shouldn't be born, where do you draw the line? Obesity is considered a disease - should fetuses with higher risk of obesity not be born? Ehlers-Danlos? What about my Hashimoto's? What about schizophrenia? Cancer? Does it matter what kind of cancer? Diabetes? Does it make a difference if it's Type 1 or Type 2?
Because here's the thing - we all get sick. Each and every one of us. Every single one of us carries within us the potential for a whole host of things, from heart disease to cancer to fuck all knows what else. And genetics are not a guarantee of disease. We don't even know which genes are tied to which conditions, in most cases, much less how the complex interplay between genetics and environment determines who gets what and when. We just cannot predict, outside of a few things diagnosable in utero, what any fetus will get in their life after they're born.
Moreover, we rank diseases and disabilities. I've already done it a few times in just this piece. I think most if not all of us have that sort of internal ranking. "Well Hashimoto's is bad and an autoimmune disease, but it's not thyroid cancer" is another one I have. I also think that our wider society's rankings of disease and disability go beyond their treatability, the pain and suffering they cause, their risk of death, etc. and gets way in to aesthetics. See also, obesity is considered a disease. As I mentioned earlier, I don't think it's a mistake that "diabetes" was the example given by the bioethicist arguing for fetal genomic sequencing. We perceive Type 2 diabetes as preventable, as well as caused by obesity - which we also consider preventable. It's one of the diseases where society really likes to blame the person for getting it.
And to use that potential of disease or disability as a screener to determine which fetuses should be born or not is so abhorrent. Even if they do have the potential for something that's really scary, that's not a guarantee. Conflating giving birth to a fetus with the genetic potential for something you don't like with abusing that child, or with a death sentence, is mendacious as fucking hell, not to mention unethical.
Finally, the idea of health at every cost comes out here. As if we owe it to ourselves, to society, to our children, to be absolutely healthy. To do everything we can to be healthy. And let's be real, it's a real narrow definition of healthy that's always used here, and it absolutely includes "not fat". It also doesn't include "uses a wheelchair", "has a mental illness", or "has a chronic disease that limits their activity". We're all supposed to be thin, preferably white, happy, active, totally able-bodied people. Anyone outside those parameters need not apply.
Fuck that.
Fuck that narrow definition of health, and fuck anyone who thinks I owe fitting in to that definition to them or to "society". And fuck anyone who thinks that as a presumptive parent, I owe it to anyone for my children to fit that narrow, ableist, racist, hateful mold. Fuck the entire idea that if you and your body and mind are less than "perfectly healthy", that you shouldn't be here. Fuck that fuck that fuck that.
Saturday, November 16, 2013
Pregnancy as a cause of disability
[Contents: ableism, gender essentialism, medical]
So I have a lot of thoughts related to the #solidarityisfortheablebodied tag that I've been watching (and participating in) on the Twittermachine, especially in relation to pregnancy. This will probably turn in to a whole series of posts, but to start with, I wanted to record some of the tweets and talk a bit about how pregnancy can cause disability.
(Just as an FYI, #solidarityisfortheablebodied was started by Neal Carter to talk about ableism. It was inspired by #solidarityisforwhitewomen, which was started by Mikki Kendall to talk about racism in social justice movements, especially feminism. I really recommend checking them both out.)
So while participating in the tag, K Boyd, Cabell Gathman, and I were talking a bit about the intersection of pregnancy, ableism, and disability. Here are some of the highlights:
One of the things that continues to strike me about pregnancy is this overwhelming assumption of it and framing of the experience that it is the best, most fulfilling thing that a woman [sic] can ever do. That you will feel SO WONDERFUL in your second trimester, even if you felt horrid in your first trimester! It's fine! It's all great! (Don't believe me? Start looking at pretty much any pregnancy book or website out there.) And while the sites and books will talk about "round ligament pain", and "sore feet", and "mood swings", and while they'll often go in to detail about all of the things that can go wrong with the pregnancy, like placental abruption, they don't generally talk about how pregnancy can really be disabling.
The exception to that seems to be pelvic girdle pain, which is mentioned specifically both as "common" and "potentially debilitating". The Wikipedia article is way better (even if it does assume that all pregnant people are women). It's more detailed as to symptoms, potential effects, and way more thorough in terms of what treatment is available. "What To Expect" - which, I seem to recall hearing that this was so detailed it was too detailed about pregnancy and that's why no one liked it - has scant information, and scant options. And beyond that first mention of "debilitating", doesn't really go in to much else.
But PGP is far, FAR from the only change in pregnancy that can disable someone. Some of the easier ones to figure on are things like the loosening and spreading of your joints causing foot pain, or the lower back pain that can also be very common in pregnancy. Even in those cases though, the response often is "well get new shoes", "it's not that bad", "if you exercise more it will feel better". And yeah, foot pain and joint pain doesn't sound so bad. Until you have it, like I do, and when I went grocery shopping last Monday I could barely make it out of the store, hunched over the cart, unable to carry my groceries in, and having to slowly, painfully lurch my way up the stairs to my apartment, and immediately lay down. If you'd like to inform me that that's not disability, that that kind of pain isn't disabling, you can fuck right off. CAN'T. GET. MY. OWN. GROCERIES.
Then there's the nausea and vomiting, and the extreme nausea and vomiting known as hyperemesis gravidarum. HG can get people hospitalized. They literally cannot keep anything down, and are so dehydrated they usually wind up getting IV fluids and nutrients. It's incredibly dangerous both for the pregnant person and the embryo/fetus they're carrying. And even milder forms of "morning sickness" can be disabling. It's hard to function if you can't eat, if common smells make you ill, if you just feel like shit all the damn time with no relief.
Pregnancy doesn't just affect you physically though. There are so many mental and emotional changes that happen. Those often get dismissed as "hormones". And while hormones may be the cause, they're not always. Even if the cause is hormones, that doesn't make the effects any less real. Plus, any sort of mental health issue is incredibly stigmatized, and especially in women, tends to get pooh-poohed. "You're just lazy", "oh take a deep breath", "it's all in your head". Well that's fine and dandy (asshole), but when you're so ill you can't get out of the house, can't get out of bed? When you're afraid to move because WHAT IF IT HURTS THE BABY, and a part of you knows that's not really rational and it's the disease talking, but you still can't move? All the deep-breathing in the world ain't gonna fix that, and to suggest that it's such an easy fix, and that it's not disabling, is incredibly shitty.
And like was quoted above, lots of people do NOT experience debilitating, disabling side effects during pregnancy (and the ones I mentioned above are an extremely abbreviated list, mostly drawn from my own experience). That is genuinely awesome for them. My problem is when that becomes the only acceptable narrative for pregnancy, as it often seems to be. Again, the narrative we're presented about pregnancy so often is along the lines of "it's the most fulfilling, wonderful thing you can do!" and that completely erases people for whom it is emphatically not (such as myself!). It's one thing if you want to say "I found pregnancy amazingly fulfilling" or "I felt wonderful during my pregnancy", but to describe pregnancy in general as those things is bullshit. The kindest thing I can say about being pregnant is that it's incredibly uncomfortable and undignified, and part of the reason I use that phrasing is because if I tell it how it really is, I have gotten people jumping down my throat about how WELL JUST DO THIS and YOU'RE TERRIBLE and OH IT'S NOT THAT BAD etc. and so on. Many people are sympathetic - but that's also a function of the fact that I largely surround myself with people who aren't shitheads.
Which brings me to another point: I've gotten to the point, even this "early" in my pregnancy, a few times where I have significant trouble standing upright or walking. And even I hesitate to call that "disabled". I can't get groceries on my own, I have to plan dinners so that if I cook something that involves more than five minutes of effort one day, the next day I have to have something that only requires five minutes of effort, I'm back to doing PT exercises for my fucked up back and hips, I hate hate HATE that I have to pee all the time because goddammit I just got comfortable and standing up is going to hurt, and I dread the possibility of The Kid laying on my spine as they get bigger and aggravating my degenerated disks. And this is all shit that started after I got pregnant.
There's incredible stigma against disability, being disabled, and identifying as disabled here in the US. Being a pregnant person on top of that? There should be a really elegant math metaphor here, but I'll settle for "it way more than doubles the bullshit and stigma".
So I have a lot of thoughts related to the #solidarityisfortheablebodied tag that I've been watching (and participating in) on the Twittermachine, especially in relation to pregnancy. This will probably turn in to a whole series of posts, but to start with, I wanted to record some of the tweets and talk a bit about how pregnancy can cause disability.
(Just as an FYI, #solidarityisfortheablebodied was started by Neal Carter to talk about ableism. It was inspired by #solidarityisforwhitewomen, which was started by Mikki Kendall to talk about racism in social justice movements, especially feminism. I really recommend checking them both out.)
So while participating in the tag, K Boyd, Cabell Gathman, and I were talking a bit about the intersection of pregnancy, ableism, and disability. Here are some of the highlights:
#solidarityisfortheablebodied when pregnancy cn only be "inconvenient," never disabling. Pregnant ppl even ashamed to name it to themselves."@cabell: #solidarityisfortheablebodied when pregnancy cn only be "inconvenient" never disabling. Pregnant ppl even ashamed to name it to themselves."
— Cabell Gathman (@cabell) November 16, 2013
@kingdomofwench and just btw, I do become physically disabled when pregnant. :/"@MendyLady: @kingdomofwench and just btw, I do become physically disabled when pregnant. :/"
— K Boyd (@MendyLady) November 16, 2013
MT @MendyLady: @me Many people do not, and so it's awful that society assumes they do. But then for those of us who do, it's ..."@kingdomofwench: MT @MendyLady @me Many people do not, and so it's awful that society assumes they do. But then for those of us who do, it's..."
— Wench (@kingdomofwench) November 16, 2013
@kingdomofwench miserable to get our condition taken seriously. #solidarityisfortheablebodied"@MendyLady: miserable to get our condition taken seriously. #solidarityisfortheablebodied"
— K Boyd (@MendyLady) November 16, 2013
One of the things that continues to strike me about pregnancy is this overwhelming assumption of it and framing of the experience that it is the best, most fulfilling thing that a woman [sic] can ever do. That you will feel SO WONDERFUL in your second trimester, even if you felt horrid in your first trimester! It's fine! It's all great! (Don't believe me? Start looking at pretty much any pregnancy book or website out there.) And while the sites and books will talk about "round ligament pain", and "sore feet", and "mood swings", and while they'll often go in to detail about all of the things that can go wrong with the pregnancy, like placental abruption, they don't generally talk about how pregnancy can really be disabling.
The exception to that seems to be pelvic girdle pain, which is mentioned specifically both as "common" and "potentially debilitating". The Wikipedia article is way better (even if it does assume that all pregnant people are women). It's more detailed as to symptoms, potential effects, and way more thorough in terms of what treatment is available. "What To Expect" - which, I seem to recall hearing that this was so detailed it was too detailed about pregnancy and that's why no one liked it - has scant information, and scant options. And beyond that first mention of "debilitating", doesn't really go in to much else.
But PGP is far, FAR from the only change in pregnancy that can disable someone. Some of the easier ones to figure on are things like the loosening and spreading of your joints causing foot pain, or the lower back pain that can also be very common in pregnancy. Even in those cases though, the response often is "well get new shoes", "it's not that bad", "if you exercise more it will feel better". And yeah, foot pain and joint pain doesn't sound so bad. Until you have it, like I do, and when I went grocery shopping last Monday I could barely make it out of the store, hunched over the cart, unable to carry my groceries in, and having to slowly, painfully lurch my way up the stairs to my apartment, and immediately lay down. If you'd like to inform me that that's not disability, that that kind of pain isn't disabling, you can fuck right off. CAN'T. GET. MY. OWN. GROCERIES.
Then there's the nausea and vomiting, and the extreme nausea and vomiting known as hyperemesis gravidarum. HG can get people hospitalized. They literally cannot keep anything down, and are so dehydrated they usually wind up getting IV fluids and nutrients. It's incredibly dangerous both for the pregnant person and the embryo/fetus they're carrying. And even milder forms of "morning sickness" can be disabling. It's hard to function if you can't eat, if common smells make you ill, if you just feel like shit all the damn time with no relief.
Pregnancy doesn't just affect you physically though. There are so many mental and emotional changes that happen. Those often get dismissed as "hormones". And while hormones may be the cause, they're not always. Even if the cause is hormones, that doesn't make the effects any less real. Plus, any sort of mental health issue is incredibly stigmatized, and especially in women, tends to get pooh-poohed. "You're just lazy", "oh take a deep breath", "it's all in your head". Well that's fine and dandy (asshole), but when you're so ill you can't get out of the house, can't get out of bed? When you're afraid to move because WHAT IF IT HURTS THE BABY, and a part of you knows that's not really rational and it's the disease talking, but you still can't move? All the deep-breathing in the world ain't gonna fix that, and to suggest that it's such an easy fix, and that it's not disabling, is incredibly shitty.
And like was quoted above, lots of people do NOT experience debilitating, disabling side effects during pregnancy (and the ones I mentioned above are an extremely abbreviated list, mostly drawn from my own experience). That is genuinely awesome for them. My problem is when that becomes the only acceptable narrative for pregnancy, as it often seems to be. Again, the narrative we're presented about pregnancy so often is along the lines of "it's the most fulfilling, wonderful thing you can do!" and that completely erases people for whom it is emphatically not (such as myself!). It's one thing if you want to say "I found pregnancy amazingly fulfilling" or "I felt wonderful during my pregnancy", but to describe pregnancy in general as those things is bullshit. The kindest thing I can say about being pregnant is that it's incredibly uncomfortable and undignified, and part of the reason I use that phrasing is because if I tell it how it really is, I have gotten people jumping down my throat about how WELL JUST DO THIS and YOU'RE TERRIBLE and OH IT'S NOT THAT BAD etc. and so on. Many people are sympathetic - but that's also a function of the fact that I largely surround myself with people who aren't shitheads.
Which brings me to another point: I've gotten to the point, even this "early" in my pregnancy, a few times where I have significant trouble standing upright or walking. And even I hesitate to call that "disabled". I can't get groceries on my own, I have to plan dinners so that if I cook something that involves more than five minutes of effort one day, the next day I have to have something that only requires five minutes of effort, I'm back to doing PT exercises for my fucked up back and hips, I hate hate HATE that I have to pee all the time because goddammit I just got comfortable and standing up is going to hurt, and I dread the possibility of The Kid laying on my spine as they get bigger and aggravating my degenerated disks. And this is all shit that started after I got pregnant.
There's incredible stigma against disability, being disabled, and identifying as disabled here in the US. Being a pregnant person on top of that? There should be a really elegant math metaphor here, but I'll settle for "it way more than doubles the bullshit and stigma".
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