When I read or (God help me) listen to Mike Pence, I am reminded of a quote from the late, great Texas journalist Molly Ivins: “If his IQ dropped a couple of points you’d have to water him twice a day.”
I always wonder if we had better public education about sex, women’s reproductive health, and pregnancy how would our world be different. My partner had a pregnancy miscarriage a long time ago and it was devastating, *but* I never had to worry if they would get proper care or be locked up over it. (One thing that shocked us both was learning stats on miscarriage.) I can’t imagine -- even if I wanted a child -- having one in an anti-woman state.
I think we need to start putting "students" in Students for Life in quotes. These people are not students. The president is in her forties. She also has two children with cystic fibrosis. Not one. TWO. Plus two other children. If she knew she carried the gene, why would she keep having children and roll the dice? This woman must have munchausen syndrome by proxy. Except she keeps giving birth to actually sick kids that will suffocate to death by 30. On purpose! She's a nut job.
I have another word than students for that lot, but I’m not typing it here.
I don’t know how you deliberately set out to get pregnant if you know how high a risk you have for something like cystic fibrosis. If I really wanted kids, I’d go the IVF route, if the embryos could be tested, and only have healthy ones transferred.
Life is hard enough without saddling a child with a condition like that right from the start if you can avoid that. I know some people will say that’s disrespectful of disabled people. But I’m disabled (MS), and I know how difficult it is to live with the limitations a disability can bring. My so. Is almost 35, and while MS is not directly heritable, having family with the disease raises your risk. I worry a lot about that. If I’d known I had MS before I had him, I don’t know that I would have.
Yeah I don't understand how someone could intentionally do that to a child not once but TWICE! I don't have children partly because of concerns about passing on bipolar. Can't even fathom doing it with cystic fibrosis.
My mom had 10 pregnancies, 7 living children. Five of us have disabilities or severe health problems. (One died of medical neglect.) I don't know about other religious groups, but my parents were conservative catholics and having as many kids as "god gives you", regardless of whether you can feed, house, educate, get medical care for all of those kids is definitely a catholic thing. That abuse broke up the family, and those of us who survive now barely talk to each other. (My mom always said I was to blame, though, because I "led [my siblings and their kids] astray" by abandoning her church. Yeah, she was anti-birth control, anti-abortion, anti-aid-in-dying, etc etc. She and Students [sic] for Life [sic] would have had a nice little Catholic Martyr Mother Hate Fest on everybody here.)
This is so hard. Two of my friends from very large catholic families are survivors of sibling sexual molestation, as occurred in the Duggar family. I am so sad for them as it is a lifelong wound facilitated by utter parental neglect.
Well if you are the one who led your siblings and nieces and nephews 'astray' then you're the strong one and you're the hero of this story. Of course being strong and heroic is often more painful than satisfying, but you did good.
My siblings surprised the hell out of me. I'm effectively the eldest and when I was 19, at Christmas Mass, I started a whisper down the row: "I don't believe any of this. How about you?" In a few minutes, the results came back. We were aged almost-11 to just-19, and none of us believed. Only my youngest brother, who had just turned 9, said "I'm not sure." (Mom gave me the evil eye for talking in church.) Since then--well, none of my five nieces or one nephew have any use for religion and none were brought up religious. So, yeah, mom blamed me for all that. In retrospect, maybe I was responsible, but it still doesn't feel heroic. It feels like a normal response to the abuse we were raised in.
Exactly. When I was younger, I carried some resentment that my parents had chosen to have three kids. My mom was married before, and had a daughter from that marriage when they married. My dad had rheumatic fever twice as a kid, back before antibiotics existed. It damaged his heart, and they didn’t expect him to live to be 18. He died at 44. My mom had dropped out of high school to marry the first time, so she didn’t have a formal education, or any real career skills.
His death turned my life upside down (the whole family’s, but let’s stick to me), and changed my future in ways it never recovered from. Financially, we went from comfortable to can we stretch the groceries through the week. College was out - and I spent my teen years raising kids and keeping house.
It wasn’t until I got past the ages my folks were when they decided to have kids that I got over feeling that it was incredibly irresponsible of them to have a passel of kids, knowing he would die young. There was no life insurance- his heart precluded that. But my mom was 24 when she had me. They were young, you know?
I can’t imagine, though, how much resentment I would have had if my parents knew I would have a 50-50 chance of something like CF, and didn’t either try to prevent that by prenatal testing, IVF, etc., or just not had kids at all.
I think it’s - well, evil might be a strong word, but something like it, to impose a life of suffering and misery on a child deliberately.
I'm so sorry you went through all that. Things were different back then. I'd like to think people are less likely to throw caution to the wind like that these days. But hearing about the leader of an anti-abortion group doing something so unbelievably irresponsible. Not only did they not try to prevent it but they already had one kid with CF and then decided to roll the dice on three more who might get it with one who did. It is evil. There's no other word for it. And this is the insanity leading the anti-abortion movement. These people are sick.
Health care for a child with CF is extremely expensive. Even if she thought it was ok to impose that on a child, how do you afford care for multiple kids with CF? And while she’s off having a career she probably thinks the rest of womankind shouldn’t, how much of the care for her two disabled children is falling onto the shoulders of their siblings or her mom - who didn’t sign up for it?
What's she supposed to do though. Defy god and use birth control? Deny her husband his god-given rights to sex? (🤮) Don't really see any options here that are compatible with her madness.
It's gross that this cult expects wives to act like their husband's kept mistresses. It seems you're right that this is evidently a cult centered on a cum fetish.
Chuck, get a ball and call off all summer vacations and start voting on the military appointments. You rule the floor so own it! Why doesn't the military have doctors on staff on base that provide abortions? It is federal land when you are on a base, right? I was born on an air force base in TX in 72. My mom did not go to the local hospital it was a military hospital, because my dad was in the air force. I am contacting my senator tomorrow - Fetterman.
The problem is the Hyde Amendment, which doesn’t allow federal money to be used for abortions, except in the case of rape, incest, life of the mother.
Military hospitals are all federally funded, as is the staff, all equipment, etc.
While I’d argue that the Hyde Amendment should be narrowly applied, Republicans are defining it as widely as possible. Tuberville is arguing that allowing paid time off to military members, or reimbursement for travel/lodging costs violate the amendment. I think that’s utter nonsense, but I think it does, unfortunately, apply to military hospitals providing abortion care directly. The federal government would be paying for the abortion.
Here’s the wording of the amendment:
“CHAPTER 4—PROHIBITING FEDERALLY FUNDED ABORTIONS
“SEC. 301. PROHIBITION ON FUNDING FOR ABORTIONS.
“(a) In General.—No funds authorized or appropriated by Federal law, and none of the funds in any trust fund to which funds are authorized or appropriated by Federal law, shall be expended for any abortion.
“(b) Health Benefits Coverage.—No funds authorized or appropriated by Federal law, and none of the funds in any trust fund to which funds are authorized or appropriated by Federal law, shall be expended for health benefits coverage that includes coverage of abortion.
“SEC. 302. TREATMENT OF ABORTIONS RELATED TO RAPE, INCEST, OR PRESERVING THE LIFE OF THE MOTHER.
“The limitations established in sections 301 shall not apply to an abortion—
“(1) if the pregnancy is the result of an act of rape or incest; or
“(2) in the case where a woman suffers from a physical disorder, physical injury, or physical illness, including a life-endangering physical condition caused by or arising from the pregnancy itself, that would, as certified by a physician, place the woman in danger of death unless an abortion is performed.”.
I think the holding in Roe and Casey was fundamentally correct: something as personal, as PRIVATE, as pregnancy should not be under the purview of the state but of the person who is pregnant. I think, I HOPE, we'll eventually get back to something like that or better; I mean, Canada has no laws regarding abortion and their per capita rate is less than ours. The public polling suggests we may get there. But I am furious and saddened by the women's lives who will be needlessly ruined in the meantime, women who suffered like those women suing in Tx, but also the women we don't hear about, whose lives and hopes and dreams and ambitions have been taken over by the state forcing them to have children they don't want or can't take care of.
Yes, I think we ultimately need something better. Bodily autonomy is more than just privacy. And we need a legal answer that can't be thwarted by deciding a fetus is a person. We've talked about that specifically before and I know Jessica and Grace are looking into at least one proposed theory so if they get feedback from lawyers I'm sure they'll share it in the newsletter.
"It's not that we don't have a problem, but we are dealing with it the wrong way." Exactly. Because of the addicts, and everything they touch that they destroy, whole communities sometimes, and because of the people who tried to get rich off the addicts, the government decides that the people who should suffer for it are those with the most grave disabling conditions, who are already suffering so terribly. That's what passes for justice in America. Also isn't the opioid epidemic worst among Republican demographics? Not surprising because they always fuck up everything for everybody else. This is also a perfect illustration of the dangers of letting AI make decisions by itself, making pain patients their guinea pigs. Sometimes this country is just one giant death cult. Wishing you better.
I’m a pain patient. I have multiple sclerosis, (secondary progressive form), osteoarthritis, and a form of inflammatory arthritis. They’re all degenerative and incurable. I’m on 90 mg a day of MSContin, a form of time release morphine, and I have oxycodone for breakthrough pain.
When the guidelines were changed a few years ago, it utterly decimated the ability of many like me to get relief. They’ve published, as of last year, IIRC, a new set of guidelines that aren’t so strict to try to fix this, but it took *years,* and they haven’t been as widely publicized. A lot of doctors haven’t caught up.
During the time the awful guidelines were in place, my pain doctor employed a new physician’s assistant. Now, bear in mind I’d been seeing this doctor for probably 7 years at the time, and had never failed a single mandated monthly drug test.
Her opener to me, after looking at my chart? “Unlike most pain patients, you actually have several very painful conditions.” (WTF??) Then we discussed how I used my medication. She looked at me, very perplexed, and said “But…you’re taking your medication exactly how you’re supposed to!” (Again, WTF??) I’m in my sixties, your basic middle class white woman - what the hell was she expecting? She then proceeded to cut my breakthrough meds in half “because it looks better on paper.” She informed me that she was planing to eventually cut my meds by at least 2/3. Fortunately, she got fired before she could do that.
But I know a number of pain patients unalived themselves during that time. I’d have been one of them, if she’d executed her plan.
I’m exceedingly heat sensitive - I can’t tolerate my house above 54* without getting sick. But even after more than ten years under care, I have to go out in 100* heat tomorrow to pee in a cup to prove I’m taking my meds as prescribed. It’s thoroughly obnoxious, and I’ll be lucky if it doesn’t push me over the edge into an MS flare.
Yup. had a similar interaction with my provider five days ago. She proceeded to gaslight me about "You don't *really* have daily migraines" (Yes, ma'am I really do. Have had for 20+ years), and "You are *really* not in that much pain" (Yeah, I am) so "I'm gonna take away your pain meds entirely". Because I'm a liar, I guess. Nobody calls me a liar or gaslights me like that. So she's out as my doc, and I've had a non-stop migraine for four days and an RA flare-up (that's what taking away pain meds does for me. Also no sleep.) Is she going to take responsibility? Thank goodness it's (relatively) cool here in Berkeley.
Yes, I hope so. Nobody (she reminded me, as a nasty parting shot) likes "complex patients" (meaning those of us with a bunch of health problems.) Then she called me "mouthy" and "uncooperative" in her notes.
There's a four letter word that I don't use being a man but I've seen women use to great effect in films and streaming series and such which would seem to be a good description for this doctor. Starts with a 'c'.
Now, now. I'm sure she's a perfectly nice person. Just shouldn't be a doc--or shouldn't do a job where she has to deal with old, mouthy, uncooperative people. She'd probably be fine in admin or something. The funny thing is, the clinic I go to was founded by Maggie Kuhn of the Gray Panthers. "Mouthy" was probably the *nicest* thing Maggie got called. (I keep wishing I could resurrect Maggie and send her to haunt some people like that unlamented doc...)
Dear gods & little green fishes! I’m so sorry. My provider believed me, and *still* cut my meds.
Btw - many years ago, before I knew I had MS, I spent about a year and a half with a minimum of 5 migraines a week. It was an MS flare, but I didn’t realize it at the time. I’m guessing you know that those of us with autoimmune diseases often have more than one. Can you get your doctor to send you to a neurologist, or schedule you for a brain/spinal MRI, with & without contrast? I’m not saying that you have MS, but that’s a way to rule it out. Daily migraines are nit normal. Something isn’t right, and it ought to be checked out. It took me 26 years to get diagnosed- a lot of doctors don’t listen to women, and autoimmune stuff is notoriously hard to get diagnosed.
Thank you so much for the suggestion. I've had several brain MRIs, the last just before the pandemic (March 2020) and have been told they were "normal." They were all ordered and read by a doc I liked and trusted. (Not by the one I've had trouble with recently.) Unfortunately, that great doc got her dream job across the country and I haven't been able to see her since she left 2 years ago. When I was first diagnosed w/ migraines, 2001-2002, that diagnosis was precipitated by a 4-month severe migraine, waking and sleeping. So, yeah, no kidding, I knew something was not normal. I do have a neurology referral so we'll see if anything can be done. I do have Crohn's, so maybe MS isn't that far a stretch. Thanks so much for the info and your concern and support! (You learn something every day.)
'a lot of doctors don't listen to women' - this is so true, and this whole conversation is very relevant to the topic of this newsletter: women not being able to get health care in this country.
Just another brick in the wall in the 'war on drugs'. Thank goodness you're still able to get your meds. 54 degrees; if that's not a typo, yikes. Best of luck in the heat tomorrow.
Yeah, Zach. It’s not a typo, 54* is right. All my existing MS symptoms come out to play when it’s warmer than that. Even with central air, I can’t keep my house that cool when the temperatures get above 80* outside. Summer is misery, and I usually end up having a pretty bad flare between August-October every year, depending on hot hot the summer is.
IIRC you're in Colorado Springs so at least you're at elevation when it comes to hot weather, but 54 is a hard target to hit, maybe only in oceanic climates at high latitudes. Other than that I'm at a loss for words; it sucks :(
It does suck. The hard thing about elevation is that it comes with stronger sunlight, so the house hears up, and holds onto the heat. From sunup to sundown in the winter, I don’t even need the heat on unless it’s cloudy.
I can’t do the ice vests because I have massive issues with my back. I have degenerative disc disease, bones that slip out of place, and the MS turned my back into one giant, knotted spasm. It took a physical therapist over two years before she could get the muscles to where she could tell one from another. The weight of anything on my shoulders just causes more spasticity. They’ve tried everything with my back. The most relief I’ve gotten is from dry needling, but as soon as it helps, I’m out of physical therapy visits for the year.
I hated gabapentin. It did nothing for that nerve pain, but it made my fatigue much, much worse. I could barely keep my eyes open. Same problem with tegretol. There really isn’t much for nerve pain that actually works for anyone. When I was on the gabapentin, I asked my neurologist, who told me he had patients on much higher doses, if those patients found it helped. He said “I don’t know. They’re all asleep.”
Anti-science is equal to anti-truth (because all science is is a rigorous method of searching for truth). They want a post-truth world, where you can't tell truth from lies so you decide to give up and say it doesn't matter and use some other standard for making decisions. It's extremely dangerous, and there's more than enough blame to go around for how we got here.
When I read or (God help me) listen to Mike Pence, I am reminded of a quote from the late, great Texas journalist Molly Ivins: “If his IQ dropped a couple of points you’d have to water him twice a day.”
It's a shame she's not still with us. The things she would have had to say about the last 16 years.
I was born here and I have no plans to leave these folks alone by moving, though I understand why someone of childbearing age would want to move.
I always wonder if we had better public education about sex, women’s reproductive health, and pregnancy how would our world be different. My partner had a pregnancy miscarriage a long time ago and it was devastating, *but* I never had to worry if they would get proper care or be locked up over it. (One thing that shocked us both was learning stats on miscarriage.) I can’t imagine -- even if I wanted a child -- having one in an anti-woman state.
I think we need to start putting "students" in Students for Life in quotes. These people are not students. The president is in her forties. She also has two children with cystic fibrosis. Not one. TWO. Plus two other children. If she knew she carried the gene, why would she keep having children and roll the dice? This woman must have munchausen syndrome by proxy. Except she keeps giving birth to actually sick kids that will suffocate to death by 30. On purpose! She's a nut job.
I have another word than students for that lot, but I’m not typing it here.
I don’t know how you deliberately set out to get pregnant if you know how high a risk you have for something like cystic fibrosis. If I really wanted kids, I’d go the IVF route, if the embryos could be tested, and only have healthy ones transferred.
Life is hard enough without saddling a child with a condition like that right from the start if you can avoid that. I know some people will say that’s disrespectful of disabled people. But I’m disabled (MS), and I know how difficult it is to live with the limitations a disability can bring. My so. Is almost 35, and while MS is not directly heritable, having family with the disease raises your risk. I worry a lot about that. If I’d known I had MS before I had him, I don’t know that I would have.
Yeah I don't understand how someone could intentionally do that to a child not once but TWICE! I don't have children partly because of concerns about passing on bipolar. Can't even fathom doing it with cystic fibrosis.
My mom had 10 pregnancies, 7 living children. Five of us have disabilities or severe health problems. (One died of medical neglect.) I don't know about other religious groups, but my parents were conservative catholics and having as many kids as "god gives you", regardless of whether you can feed, house, educate, get medical care for all of those kids is definitely a catholic thing. That abuse broke up the family, and those of us who survive now barely talk to each other. (My mom always said I was to blame, though, because I "led [my siblings and their kids] astray" by abandoning her church. Yeah, she was anti-birth control, anti-abortion, anti-aid-in-dying, etc etc. She and Students [sic] for Life [sic] would have had a nice little Catholic Martyr Mother Hate Fest on everybody here.)
This is so hard. Two of my friends from very large catholic families are survivors of sibling sexual molestation, as occurred in the Duggar family. I am so sad for them as it is a lifelong wound facilitated by utter parental neglect.
Well if you are the one who led your siblings and nieces and nephews 'astray' then you're the strong one and you're the hero of this story. Of course being strong and heroic is often more painful than satisfying, but you did good.
My siblings surprised the hell out of me. I'm effectively the eldest and when I was 19, at Christmas Mass, I started a whisper down the row: "I don't believe any of this. How about you?" In a few minutes, the results came back. We were aged almost-11 to just-19, and none of us believed. Only my youngest brother, who had just turned 9, said "I'm not sure." (Mom gave me the evil eye for talking in church.) Since then--well, none of my five nieces or one nephew have any use for religion and none were brought up religious. So, yeah, mom blamed me for all that. In retrospect, maybe I was responsible, but it still doesn't feel heroic. It feels like a normal response to the abuse we were raised in.
Wow. That's quite a story. I just really don't understand this martyr complex these women get at the expense of their children.
Like I say, It's a Catholic Thing. Sort of like "giving up" something for Lent?
Exactly. When I was younger, I carried some resentment that my parents had chosen to have three kids. My mom was married before, and had a daughter from that marriage when they married. My dad had rheumatic fever twice as a kid, back before antibiotics existed. It damaged his heart, and they didn’t expect him to live to be 18. He died at 44. My mom had dropped out of high school to marry the first time, so she didn’t have a formal education, or any real career skills.
His death turned my life upside down (the whole family’s, but let’s stick to me), and changed my future in ways it never recovered from. Financially, we went from comfortable to can we stretch the groceries through the week. College was out - and I spent my teen years raising kids and keeping house.
It wasn’t until I got past the ages my folks were when they decided to have kids that I got over feeling that it was incredibly irresponsible of them to have a passel of kids, knowing he would die young. There was no life insurance- his heart precluded that. But my mom was 24 when she had me. They were young, you know?
I can’t imagine, though, how much resentment I would have had if my parents knew I would have a 50-50 chance of something like CF, and didn’t either try to prevent that by prenatal testing, IVF, etc., or just not had kids at all.
I think it’s - well, evil might be a strong word, but something like it, to impose a life of suffering and misery on a child deliberately.
I'm so sorry you went through all that. Things were different back then. I'd like to think people are less likely to throw caution to the wind like that these days. But hearing about the leader of an anti-abortion group doing something so unbelievably irresponsible. Not only did they not try to prevent it but they already had one kid with CF and then decided to roll the dice on three more who might get it with one who did. It is evil. There's no other word for it. And this is the insanity leading the anti-abortion movement. These people are sick.
Health care for a child with CF is extremely expensive. Even if she thought it was ok to impose that on a child, how do you afford care for multiple kids with CF? And while she’s off having a career she probably thinks the rest of womankind shouldn’t, how much of the care for her two disabled children is falling onto the shoulders of their siblings or her mom - who didn’t sign up for it?
She's probably milking SfL to pay for a legion of domestic staff to raise her kids for her.
What's she supposed to do though. Defy god and use birth control? Deny her husband his god-given rights to sex? (🤮) Don't really see any options here that are compatible with her madness.
Do what she tells women who have abortions. Keep her legs closed.
Yeah but the husband thing. I guess there are other sex acts they could do but god's probably against those too.
It's gross that this cult expects wives to act like their husband's kept mistresses. It seems you're right that this is evidently a cult centered on a cum fetish.
It seems like 90% of "religion" just ends up being hang-ups about sex.
Chuck, get a ball and call off all summer vacations and start voting on the military appointments. You rule the floor so own it! Why doesn't the military have doctors on staff on base that provide abortions? It is federal land when you are on a base, right? I was born on an air force base in TX in 72. My mom did not go to the local hospital it was a military hospital, because my dad was in the air force. I am contacting my senator tomorrow - Fetterman.
The problem is the Hyde Amendment, which doesn’t allow federal money to be used for abortions, except in the case of rape, incest, life of the mother.
Military hospitals are all federally funded, as is the staff, all equipment, etc.
While I’d argue that the Hyde Amendment should be narrowly applied, Republicans are defining it as widely as possible. Tuberville is arguing that allowing paid time off to military members, or reimbursement for travel/lodging costs violate the amendment. I think that’s utter nonsense, but I think it does, unfortunately, apply to military hospitals providing abortion care directly. The federal government would be paying for the abortion.
Here’s the wording of the amendment:
“CHAPTER 4—PROHIBITING FEDERALLY FUNDED ABORTIONS
“SEC. 301. PROHIBITION ON FUNDING FOR ABORTIONS.
“(a) In General.—No funds authorized or appropriated by Federal law, and none of the funds in any trust fund to which funds are authorized or appropriated by Federal law, shall be expended for any abortion.
“(b) Health Benefits Coverage.—No funds authorized or appropriated by Federal law, and none of the funds in any trust fund to which funds are authorized or appropriated by Federal law, shall be expended for health benefits coverage that includes coverage of abortion.
“SEC. 302. TREATMENT OF ABORTIONS RELATED TO RAPE, INCEST, OR PRESERVING THE LIFE OF THE MOTHER.
“The limitations established in sections 301 shall not apply to an abortion—
“(1) if the pregnancy is the result of an act of rape or incest; or
“(2) in the case where a woman suffers from a physical disorder, physical injury, or physical illness, including a life-endangering physical condition caused by or arising from the pregnancy itself, that would, as certified by a physician, place the woman in danger of death unless an abortion is performed.”.
Thanks! I was wondering why no one was talking about doing this. I read the NYT, WAPO and LA times, watch MSNBC and no mention anywhere.
Some days I think the Ds just want the issue to disappear too much work to allow the majority of the population to have control over their bodies.
"the Ds just want the issue to disappear" - something both parties can agree on 🤦 :(
I think the holding in Roe and Casey was fundamentally correct: something as personal, as PRIVATE, as pregnancy should not be under the purview of the state but of the person who is pregnant. I think, I HOPE, we'll eventually get back to something like that or better; I mean, Canada has no laws regarding abortion and their per capita rate is less than ours. The public polling suggests we may get there. But I am furious and saddened by the women's lives who will be needlessly ruined in the meantime, women who suffered like those women suing in Tx, but also the women we don't hear about, whose lives and hopes and dreams and ambitions have been taken over by the state forcing them to have children they don't want or can't take care of.
I also hope that when women regain our right to healthcare that no Catholic hospital will be allowed to withhold care. This has to end.
Yes, I think we ultimately need something better. Bodily autonomy is more than just privacy. And we need a legal answer that can't be thwarted by deciding a fetus is a person. We've talked about that specifically before and I know Jessica and Grace are looking into at least one proposed theory so if they get feedback from lawyers I'm sure they'll share it in the newsletter.
I'd probably replace "likely don't realize" with "don't care that" but then you're being gracious despite (or perhaps because of) your suffering.
"It's not that we don't have a problem, but we are dealing with it the wrong way." Exactly. Because of the addicts, and everything they touch that they destroy, whole communities sometimes, and because of the people who tried to get rich off the addicts, the government decides that the people who should suffer for it are those with the most grave disabling conditions, who are already suffering so terribly. That's what passes for justice in America. Also isn't the opioid epidemic worst among Republican demographics? Not surprising because they always fuck up everything for everybody else. This is also a perfect illustration of the dangers of letting AI make decisions by itself, making pain patients their guinea pigs. Sometimes this country is just one giant death cult. Wishing you better.
Thank you!
Lee,
I’m a pain patient. I have multiple sclerosis, (secondary progressive form), osteoarthritis, and a form of inflammatory arthritis. They’re all degenerative and incurable. I’m on 90 mg a day of MSContin, a form of time release morphine, and I have oxycodone for breakthrough pain.
When the guidelines were changed a few years ago, it utterly decimated the ability of many like me to get relief. They’ve published, as of last year, IIRC, a new set of guidelines that aren’t so strict to try to fix this, but it took *years,* and they haven’t been as widely publicized. A lot of doctors haven’t caught up.
During the time the awful guidelines were in place, my pain doctor employed a new physician’s assistant. Now, bear in mind I’d been seeing this doctor for probably 7 years at the time, and had never failed a single mandated monthly drug test.
Her opener to me, after looking at my chart? “Unlike most pain patients, you actually have several very painful conditions.” (WTF??) Then we discussed how I used my medication. She looked at me, very perplexed, and said “But…you’re taking your medication exactly how you’re supposed to!” (Again, WTF??) I’m in my sixties, your basic middle class white woman - what the hell was she expecting? She then proceeded to cut my breakthrough meds in half “because it looks better on paper.” She informed me that she was planing to eventually cut my meds by at least 2/3. Fortunately, she got fired before she could do that.
But I know a number of pain patients unalived themselves during that time. I’d have been one of them, if she’d executed her plan.
I’m exceedingly heat sensitive - I can’t tolerate my house above 54* without getting sick. But even after more than ten years under care, I have to go out in 100* heat tomorrow to pee in a cup to prove I’m taking my meds as prescribed. It’s thoroughly obnoxious, and I’ll be lucky if it doesn’t push me over the edge into an MS flare.
Yup. had a similar interaction with my provider five days ago. She proceeded to gaslight me about "You don't *really* have daily migraines" (Yes, ma'am I really do. Have had for 20+ years), and "You are *really* not in that much pain" (Yeah, I am) so "I'm gonna take away your pain meds entirely". Because I'm a liar, I guess. Nobody calls me a liar or gaslights me like that. So she's out as my doc, and I've had a non-stop migraine for four days and an RA flare-up (that's what taking away pain meds does for me. Also no sleep.) Is she going to take responsibility? Thank goodness it's (relatively) cool here in Berkeley.
I hope you find a replacement provider who can do the job. This is what government out of control looks like, banning people's health care.
Yes, I hope so. Nobody (she reminded me, as a nasty parting shot) likes "complex patients" (meaning those of us with a bunch of health problems.) Then she called me "mouthy" and "uncooperative" in her notes.
There's a four letter word that I don't use being a man but I've seen women use to great effect in films and streaming series and such which would seem to be a good description for this doctor. Starts with a 'c'.
Now, now. I'm sure she's a perfectly nice person. Just shouldn't be a doc--or shouldn't do a job where she has to deal with old, mouthy, uncooperative people. She'd probably be fine in admin or something. The funny thing is, the clinic I go to was founded by Maggie Kuhn of the Gray Panthers. "Mouthy" was probably the *nicest* thing Maggie got called. (I keep wishing I could resurrect Maggie and send her to haunt some people like that unlamented doc...)
Dear gods & little green fishes! I’m so sorry. My provider believed me, and *still* cut my meds.
Btw - many years ago, before I knew I had MS, I spent about a year and a half with a minimum of 5 migraines a week. It was an MS flare, but I didn’t realize it at the time. I’m guessing you know that those of us with autoimmune diseases often have more than one. Can you get your doctor to send you to a neurologist, or schedule you for a brain/spinal MRI, with & without contrast? I’m not saying that you have MS, but that’s a way to rule it out. Daily migraines are nit normal. Something isn’t right, and it ought to be checked out. It took me 26 years to get diagnosed- a lot of doctors don’t listen to women, and autoimmune stuff is notoriously hard to get diagnosed.
Thank you so much for the suggestion. I've had several brain MRIs, the last just before the pandemic (March 2020) and have been told they were "normal." They were all ordered and read by a doc I liked and trusted. (Not by the one I've had trouble with recently.) Unfortunately, that great doc got her dream job across the country and I haven't been able to see her since she left 2 years ago. When I was first diagnosed w/ migraines, 2001-2002, that diagnosis was precipitated by a 4-month severe migraine, waking and sleeping. So, yeah, no kidding, I knew something was not normal. I do have a neurology referral so we'll see if anything can be done. I do have Crohn's, so maybe MS isn't that far a stretch. Thanks so much for the info and your concern and support! (You learn something every day.)
'a lot of doctors don't listen to women' - this is so true, and this whole conversation is very relevant to the topic of this newsletter: women not being able to get health care in this country.
Just another brick in the wall in the 'war on drugs'. Thank goodness you're still able to get your meds. 54 degrees; if that's not a typo, yikes. Best of luck in the heat tomorrow.
Yeah, Zach. It’s not a typo, 54* is right. All my existing MS symptoms come out to play when it’s warmer than that. Even with central air, I can’t keep my house that cool when the temperatures get above 80* outside. Summer is misery, and I usually end up having a pretty bad flare between August-October every year, depending on hot hot the summer is.
IIRC you're in Colorado Springs so at least you're at elevation when it comes to hot weather, but 54 is a hard target to hit, maybe only in oceanic climates at high latitudes. Other than that I'm at a loss for words; it sucks :(
It does suck. The hard thing about elevation is that it comes with stronger sunlight, so the house hears up, and holds onto the heat. From sunup to sundown in the winter, I don’t even need the heat on unless it’s cloudy.
I can’t do the ice vests because I have massive issues with my back. I have degenerative disc disease, bones that slip out of place, and the MS turned my back into one giant, knotted spasm. It took a physical therapist over two years before she could get the muscles to where she could tell one from another. The weight of anything on my shoulders just causes more spasticity. They’ve tried everything with my back. The most relief I’ve gotten is from dry needling, but as soon as it helps, I’m out of physical therapy visits for the year.
Thanks for the support. 🙂
Until they can find a substitute that does the job as well they need to keep giving people access to their medication.
Lee,
I hated gabapentin. It did nothing for that nerve pain, but it made my fatigue much, much worse. I could barely keep my eyes open. Same problem with tegretol. There really isn’t much for nerve pain that actually works for anyone. When I was on the gabapentin, I asked my neurologist, who told me he had patients on much higher doses, if those patients found it helped. He said “I don’t know. They’re all asleep.”
Anti-science is equal to anti-truth (because all science is is a rigorous method of searching for truth). They want a post-truth world, where you can't tell truth from lies so you decide to give up and say it doesn't matter and use some other standard for making decisions. It's extremely dangerous, and there's more than enough blame to go around for how we got here.
"The want a post-truth world, where you can't tell truth from lies..."
Yes this is exactly what they want. As Steve Bannon said, they want to "flood the zone with shit."