I'm on twitter, although I am still not one of the cool kids, but I'm getting there.
This is me, here. I've left it open for now, so if you want to follow me, go for it, but I can't promise anything profound. More likely lame. I have to say that the nicest feature of Twitter is that you can see exactly who is following you, unlike with blogs where anyone can subscribe or click and secretly lurk.
Which reminds me, it's De-Lurking week, so come on out people!!!
(Okay, that was last week or the week before, but so what, I'm a day late and a dollar short all the time...you expected fast on this?)
I have likely gained back a few pounds. My darling evil husband decided that if I had one beer, he should buy me a bottle of wine, and tempted me with many many sugary treats. So I cheated, and now I am getting back on the wagon sugar wise. A little is fine, but not this much.
I was very disturbed to read this story. I thought that things were getting better, but I guess not. This happens too often people, for women going through stillbirths and miscarriages. I remember telling some politicians and staff about this issue and they didn't believe me. They figured it was just more raving from the crazy dead baby lady. Not quite. At the end it talks about the laundry staff having to be treated for shock. Yeah, I'll bet. PTSD, nightmares, depression, flashbacks.
The trauma is overwhelming.
Trust me, I know.
Showing posts with label miscarriage. Show all posts
Showing posts with label miscarriage. Show all posts
Monday, January 19, 2009
Wednesday, April 02, 2008
A case of the blahhs and the rambles
I have lots to do---phone calls, buy paints, pay bills, file stuff, and yet, I don't.
After my rather manic post a few days ago, I relaxed a bit as I read your comments and realized that the whole reason I picked my hospital was because they are very good about respecting women and taking care of them during birth. Okay, they sucked back in 2003-04 when it came to miscarriage care before 20 weeks, but they have transferred all obstetrical care to one area of highly trained people, who are better at this, and really, every single hospital always sucks in this area. I wish someone in the system would figure out that there is no magical line, where women need good care when losing a baby after 20 weeks, but losing a baby is nothing and sort of like an appendectomy before 20 weeks.....there is no magical switch people. Really.
One thing about support groups is that you hear lots of stories about lots of different hospitals and how they act during the worst experience anyone can have. You get the good, the bad, and the ugly. And over time, it's important to remember that some can deteriorate, and some can improve. I know a couple of them did such a horrendous job with some patients that a wholesale change occurred throughout the hospital. People were told, policies were changed, and lots and lots of training occurred.
So there is hope, and maybe, just maybe, I'll get to have an experience like I did with Matthew, literally the perfect birth scenario, (except for the dead baby part).
Ba-dum-bum--bah
(dead baby joke, scuse me)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I know I'll feel better after this painting and shifting furniture gets done, I already feel better about the officewhichisbecomingthebabyroom. My organizer came by and she and I emptied years worth of paper and crap and what-have-you. I'm not really sure I need to have 10 year old copies of Today's Parent or Mothering Magazine, and I know that so much has changed that keeping those is pointless. Plus, a lot of these parenting magazines make me feel kind of shitty, you know? I know what my kid needs, but they all seem premised on guilt. Useless.
But dudes, the funniest part is that I hardly go into that office, and really only Mr.Cotta does. And oh lord, the crap he had kept! Half eaten protein bars, old water bottles, empty boxes with disks and user guides from old phones we no longer own, boot disks for Win95, 98 & 2000, backup disks for ancient computers we don't have anymore, critical documents like ownership papers for the car stuffed into envelopes and stuck under other piles of crap, and cables and wires and plugs and earphones all unlabelled for electronics all over the house.
All I'm gonna say is... calling me disorganized and blaming my ADD for the inability to find stuff in this house is no longer fair game. If we can't find a scrap of paper or someone loses something, I am NOT THE ONLY ONE TO BLAME.
I have a filing system by the way. The organizer helped me set it up. I have a beautiful filing cabinet upstairs with all of our stuff in it, one drawer is this years bills and records, alphabetical, and the other drawer is permanent records, like mortgage papers for the house, and warranty documents for stuff. I also have a filing cabinet on the main floor, which is made of nice dark wood to blend into the rest of the furniture and has some temporary files in one drawer, like bills to pay, and in the other drawer has all my electronic stuff for my camera, my computer, etc. all nicely tucked away so no one has to stare at my junk. And my laptop can go in the drawer, or sit on top.
He thinks filing cabinets are nice, but never looks in there. Ever. He asked a question about the mortgage documents the other day, and I told him to look in the filing cabinet and he didn't for days until I pulled the file. I guess it was too hard to reach to his left, only one foot away, open the drawer, and pull out the file clearly labelled, "Mortgage Cotta house - ## Address".
le sigh....
I adore the man, I do. The way I write about him, I'm sure it sounds like I don't, but I figure, well, loving someone means loving them for their good sides and their faults. All of them, all the bits. Even the bits where there they are quite sure they are perfect and are unable to see that have feet of clay too.
Poor pseudo-ADD man. He thinks it's only me---oh yeah, whatever.
After my rather manic post a few days ago, I relaxed a bit as I read your comments and realized that the whole reason I picked my hospital was because they are very good about respecting women and taking care of them during birth. Okay, they sucked back in 2003-04 when it came to miscarriage care before 20 weeks, but they have transferred all obstetrical care to one area of highly trained people, who are better at this, and really, every single hospital always sucks in this area. I wish someone in the system would figure out that there is no magical line, where women need good care when losing a baby after 20 weeks, but losing a baby is nothing and sort of like an appendectomy before 20 weeks.....there is no magical switch people. Really.
One thing about support groups is that you hear lots of stories about lots of different hospitals and how they act during the worst experience anyone can have. You get the good, the bad, and the ugly. And over time, it's important to remember that some can deteriorate, and some can improve. I know a couple of them did such a horrendous job with some patients that a wholesale change occurred throughout the hospital. People were told, policies were changed, and lots and lots of training occurred.
So there is hope, and maybe, just maybe, I'll get to have an experience like I did with Matthew, literally the perfect birth scenario, (except for the dead baby part).
Ba-dum-bum--bah
(dead baby joke, scuse me)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I know I'll feel better after this painting and shifting furniture gets done, I already feel better about the officewhichisbecomingthebabyroom. My organizer came by and she and I emptied years worth of paper and crap and what-have-you. I'm not really sure I need to have 10 year old copies of Today's Parent or Mothering Magazine, and I know that so much has changed that keeping those is pointless. Plus, a lot of these parenting magazines make me feel kind of shitty, you know? I know what my kid needs, but they all seem premised on guilt. Useless.
But dudes, the funniest part is that I hardly go into that office, and really only Mr.Cotta does. And oh lord, the crap he had kept! Half eaten protein bars, old water bottles, empty boxes with disks and user guides from old phones we no longer own, boot disks for Win95, 98 & 2000, backup disks for ancient computers we don't have anymore, critical documents like ownership papers for the car stuffed into envelopes and stuck under other piles of crap, and cables and wires and plugs and earphones all unlabelled for electronics all over the house.
All I'm gonna say is... calling me disorganized and blaming my ADD for the inability to find stuff in this house is no longer fair game. If we can't find a scrap of paper or someone loses something, I am NOT THE ONLY ONE TO BLAME.
I have a filing system by the way. The organizer helped me set it up. I have a beautiful filing cabinet upstairs with all of our stuff in it, one drawer is this years bills and records, alphabetical, and the other drawer is permanent records, like mortgage papers for the house, and warranty documents for stuff. I also have a filing cabinet on the main floor, which is made of nice dark wood to blend into the rest of the furniture and has some temporary files in one drawer, like bills to pay, and in the other drawer has all my electronic stuff for my camera, my computer, etc. all nicely tucked away so no one has to stare at my junk. And my laptop can go in the drawer, or sit on top.
He thinks filing cabinets are nice, but never looks in there. Ever. He asked a question about the mortgage documents the other day, and I told him to look in the filing cabinet and he didn't for days until I pulled the file. I guess it was too hard to reach to his left, only one foot away, open the drawer, and pull out the file clearly labelled, "Mortgage Cotta house - ## Address".
le sigh....
I adore the man, I do. The way I write about him, I'm sure it sounds like I don't, but I figure, well, loving someone means loving them for their good sides and their faults. All of them, all the bits. Even the bits where there they are quite sure they are perfect and are unable to see that have feet of clay too.
Poor pseudo-ADD man. He thinks it's only me---oh yeah, whatever.
Friday, October 12, 2007
The Power of Magic
I have so many things to blog about, and I can't choose which ones to do.
Like my ultrasound next Tuesday, which is stressing me out. And now I really have found out how my husband feels about all this, I'm feeling guilty for putting him through all this torture and stress again.
You see, he has been acting stupidly happy, in fact, boyishly adorable, sending me long gushy emails all about the great things that we will do for the next 9 months, and signing them "Love, Your Baby Fadder". I mean, heeelllllooooo who is this romantic dude and where did my regular husband go?
And he really didn't want to try again, or at least that's what he said, usually whenever he was tired of my hormonal rollercoaster. But a few times, after we had lost Georgia and Mira, he simply lost it and freaked out and told me he wanted to get a vasectomy. I thought he blamed me and was trying to punish me, but instead he was in so much pain, that he really wanted to shut the door and run away. Men really do grieve differently than women, not worse or better, but differently. My support group kept telling me that, and I didn't believe them.
He kept telling me that he was fine and it was no big deal, he was in control of his emotions, and that men just didn't feel the same way. Of course, this was crap.
So last night we go out to dinner to get away from the paint fumes in my house, and we start talking about the Bruce Springsteen concert Monday. He has tickets, 2 really fabulous ones, and we are discussing going. I knew I might be tired, so we discussed him taking a friend or even Kaz, who has been raised on rock and roll since he was a baby.
I regret this now, but I told Mr.Cotta all about my magical thinking fears and how I was determined not to be ruled by them this time. He said, "What's that?" and I explained about how it works. Since I know you guys don't click through all the time, here below is the Overview from Wikipedia. (but you should really really read the entire article if you have EVER experienced infertility or a pregnancy loss-it's a bit of an eyeopener.)
According to Frazer, magical thinking depends on two laws: the law of similarity (an effect resembles its cause), and the law of contagion (things which were once in physical contact maintain a connection even after physical contact has been broken). These two laws govern the operation of what Frazer called "sympathetic magic", the idea that the manipulation of effigies or similar symbols or tokens can cause changes to occur in the thing the symbol represented. Typical examples of sympathetic magic include the use of voodoo dolls, and the fetishization of cargo cults. Others have described these two laws as examples of "analogical reasoning" (rather than logical reasoning).
Typically, people use magic to attempt to explain things that science has not acceptably explained, or to attempt to control things that science cannot. The classic example is of the collapsing roof, described in E. E. Evans-Pritchard's Witchcraft, Magic, and Oracles Among the Azande, in which the Azande claimed that a roof fell on a particular person because of a magical spell cast (unwittingly) by another person. The Azande knew perfectly well a scientific explanation for the collapsing room (that termites had eaten through the supporting posts), but pointed out that this scientific explanation could not explain why the roof happened to collapse at precisely the same moment that the particular man was resting beneath it. The magic explains why two independent chains of causation intersect. Thus, from the point of view of the practitioners, magic explains what scientists would call "coincidences" or "contingency". From the point of view of outside observers, magic is a way of making coincidences meaningful in social terms. Carl Jung coined the word synchronicity for experiences of this type.
Adherents of magical belief systems often do not see their beliefs as being magical. In Asia, many coincidences and contingencies are explained in terms of karma in which a person's actions in a past life affects current events. Likewise in the west, ideas of "motivation" and "positive thinking" in themselves achieving outcomes are not seen as magical by those who tout their benefits.
A common form of magical thinking is that one's own thoughts can influence events, either beneficially, by creating good luck, or for the worse, as in divine punishment for "bad thoughts". Freud reflected on these phenomena in his essay, "The Uncanny". These beliefs reflect an incorrect understanding of the boundaries of self - i.e. one can indeed will to move one's own arm, but not the ashtray on the table[citation needed], at least not by any direct means (e.g. we can will our arm to move the ashtray, or there may be even less direct routes of influence). We can also make the opposite error: thinking that outside agencies can see into or influence our thoughts (paranoia).
Another form of magical thinking occurs when people believe that words can directly affect the world. This can mean avoiding talking about certain subjects ("speak of the devil and he'll appear"), using euphemisms instead of certain words, or believing that to know the "true name" of something gives one power over it, or that certain chants, prayers or mystical phrases will change things. More generally, the identification of a symbol with its referent.
Magical thinking has prevented me from enjoying my pregnancies and my life, and has never once protected me from the pain and grief of losing a child. All it has done is suck the joy out of my life and left me with sadness over all the precious moments I wasted. I could have been celebrating the short time I had, and instead, I tried to "protect" myself from the world. Fat lot of good it did.
So how does this relate to Bruce Springsteen? Well, in 2004 I miscarried Georgia at 16 weeks, a little while after I went to the Madonna concert. Great tickets, (8th row floors!) I had an absolutely awesome time, and yet----for years I felt guilty for going, like the rock concert caused my miscarriage.
Stupid, eh?
Magical thinking is one of the biggest reasons why I believe that we have to get accurate diagnosis for pregnancy loss and infertility. You see, whenever I start to think that rock concerts cause pregnancy loss, I just whip out my copies of the chromosomal analysis, and the placental pathology and the letters and reports I got from various doctors. I read, read, read, read. And there really is nothing like logic & science to beat the tar out of a little voodoo black magic bullshit.
I also am fighting the magical belief that I can't have a live baby because Ivory Snow baby soap flakes are no longer in production, and my two living babies only had clothes washed in them. (Powdered detergent is different, in case you wondered) Second biggie, is that I lost my favourite brown Gund Teddy Bear when I was 11 weeks pregnant with Mira, and that Teddy is what kept all the babies alive. Teddy's disappearance killed her. I can't even buy a new Teddy exactly like it to try to replace it because Gund doesn't make them in the "tender style" of fur anymore. (I have pictures, and tried to build another one at Build-a Bear, but it isn't the same!) Third biggie, is that when Dr.J. does my prenatal care and delivery my babies live, and when she doesn't they die. And she ISN'T delivering babies anymore, gahhhhhh. And worst of all, after Matthew died, I was convinced that his chromosomal problem was punishment from God. I thought that since my bad egg was the cause, and I insisted we try that month, it was my fault. I went so far as to believe that it was because I forced my husband to have sex with me on a Tuesday when he was tired from working, instead of waiting for the weekend. Yep, having sex on a Tuesday causes dead babies.
Utterly ludicrous, I know.
There are lots of other minor ones, like buying maternity clothes, and getting baby stuff, but those I am going to try and conquer by calculating how much circulation I'll be cutting the blood flow off to my uterus with splitting tight clothes, or by remembering how hard shopping was with newborn Mac after I hadn't bought a damn thing for him for nine months. I swear I whimpered in pain through that whole damn store. *Shudder*
And yes, this is the reason why I have become a science freak, so that I can conquer my terror and stop having panic attacks at every turn. I don't want to be afraid to live my life. I don't want to feel guilty anymore.
So after all this discussion, I told Mr.Cotta about my fear of rock concerts and miscarriage, and he suddenly freaked out and told me I wasn't allowed to go to the concert with him, that we could take no chances! I kept trying to explain that the concert couldn't be a cause and that I am purposely trying to confront my fears about magical thinking, and not give in to them, that in fact, I SHOULD go to to the concert, and live my life based on scientific facts, not irrational fears, even if it's emotionally hard, because I don't want to live in superstitious hell. Unfortunately, he will have none of it. The look of fear in his eyes was simply unreal. I know he won't shake it. He was upset the rest of the night.
So, Monday night I guess I'll be at home, with my feet up, gestating quietly and meekly.
I am not good at meek.
Like my ultrasound next Tuesday, which is stressing me out. And now I really have found out how my husband feels about all this, I'm feeling guilty for putting him through all this torture and stress again.
You see, he has been acting stupidly happy, in fact, boyishly adorable, sending me long gushy emails all about the great things that we will do for the next 9 months, and signing them "Love, Your Baby Fadder". I mean, heeelllllooooo who is this romantic dude and where did my regular husband go?
And he really didn't want to try again, or at least that's what he said, usually whenever he was tired of my hormonal rollercoaster. But a few times, after we had lost Georgia and Mira, he simply lost it and freaked out and told me he wanted to get a vasectomy. I thought he blamed me and was trying to punish me, but instead he was in so much pain, that he really wanted to shut the door and run away. Men really do grieve differently than women, not worse or better, but differently. My support group kept telling me that, and I didn't believe them.
He kept telling me that he was fine and it was no big deal, he was in control of his emotions, and that men just didn't feel the same way. Of course, this was crap.
So last night we go out to dinner to get away from the paint fumes in my house, and we start talking about the Bruce Springsteen concert Monday. He has tickets, 2 really fabulous ones, and we are discussing going. I knew I might be tired, so we discussed him taking a friend or even Kaz, who has been raised on rock and roll since he was a baby.
I regret this now, but I told Mr.Cotta all about my magical thinking fears and how I was determined not to be ruled by them this time. He said, "What's that?" and I explained about how it works. Since I know you guys don't click through all the time, here below is the Overview from Wikipedia. (but you should really really read the entire article if you have EVER experienced infertility or a pregnancy loss-it's a bit of an eyeopener.)
According to Frazer, magical thinking depends on two laws: the law of similarity (an effect resembles its cause), and the law of contagion (things which were once in physical contact maintain a connection even after physical contact has been broken). These two laws govern the operation of what Frazer called "sympathetic magic", the idea that the manipulation of effigies or similar symbols or tokens can cause changes to occur in the thing the symbol represented. Typical examples of sympathetic magic include the use of voodoo dolls, and the fetishization of cargo cults. Others have described these two laws as examples of "analogical reasoning" (rather than logical reasoning).
Typically, people use magic to attempt to explain things that science has not acceptably explained, or to attempt to control things that science cannot. The classic example is of the collapsing roof, described in E. E. Evans-Pritchard's Witchcraft, Magic, and Oracles Among the Azande, in which the Azande claimed that a roof fell on a particular person because of a magical spell cast (unwittingly) by another person. The Azande knew perfectly well a scientific explanation for the collapsing room (that termites had eaten through the supporting posts), but pointed out that this scientific explanation could not explain why the roof happened to collapse at precisely the same moment that the particular man was resting beneath it. The magic explains why two independent chains of causation intersect. Thus, from the point of view of the practitioners, magic explains what scientists would call "coincidences" or "contingency". From the point of view of outside observers, magic is a way of making coincidences meaningful in social terms. Carl Jung coined the word synchronicity for experiences of this type.
Adherents of magical belief systems often do not see their beliefs as being magical. In Asia, many coincidences and contingencies are explained in terms of karma in which a person's actions in a past life affects current events. Likewise in the west, ideas of "motivation" and "positive thinking" in themselves achieving outcomes are not seen as magical by those who tout their benefits.
A common form of magical thinking is that one's own thoughts can influence events, either beneficially, by creating good luck, or for the worse, as in divine punishment for "bad thoughts". Freud reflected on these phenomena in his essay, "The Uncanny". These beliefs reflect an incorrect understanding of the boundaries of self - i.e. one can indeed will to move one's own arm, but not the ashtray on the table[citation needed], at least not by any direct means (e.g. we can will our arm to move the ashtray, or there may be even less direct routes of influence). We can also make the opposite error: thinking that outside agencies can see into or influence our thoughts (paranoia).
Another form of magical thinking occurs when people believe that words can directly affect the world. This can mean avoiding talking about certain subjects ("speak of the devil and he'll appear"), using euphemisms instead of certain words, or believing that to know the "true name" of something gives one power over it, or that certain chants, prayers or mystical phrases will change things. More generally, the identification of a symbol with its referent.
Magical thinking has prevented me from enjoying my pregnancies and my life, and has never once protected me from the pain and grief of losing a child. All it has done is suck the joy out of my life and left me with sadness over all the precious moments I wasted. I could have been celebrating the short time I had, and instead, I tried to "protect" myself from the world. Fat lot of good it did.
So how does this relate to Bruce Springsteen? Well, in 2004 I miscarried Georgia at 16 weeks, a little while after I went to the Madonna concert. Great tickets, (8th row floors!) I had an absolutely awesome time, and yet----for years I felt guilty for going, like the rock concert caused my miscarriage.
Stupid, eh?
Magical thinking is one of the biggest reasons why I believe that we have to get accurate diagnosis for pregnancy loss and infertility. You see, whenever I start to think that rock concerts cause pregnancy loss, I just whip out my copies of the chromosomal analysis, and the placental pathology and the letters and reports I got from various doctors. I read, read, read, read. And there really is nothing like logic & science to beat the tar out of a little voodoo black magic bullshit.
I also am fighting the magical belief that I can't have a live baby because Ivory Snow baby soap flakes are no longer in production, and my two living babies only had clothes washed in them. (Powdered detergent is different, in case you wondered) Second biggie, is that I lost my favourite brown Gund Teddy Bear when I was 11 weeks pregnant with Mira, and that Teddy is what kept all the babies alive. Teddy's disappearance killed her. I can't even buy a new Teddy exactly like it to try to replace it because Gund doesn't make them in the "tender style" of fur anymore. (I have pictures, and tried to build another one at Build-a Bear, but it isn't the same!) Third biggie, is that when Dr.J. does my prenatal care and delivery my babies live, and when she doesn't they die. And she ISN'T delivering babies anymore, gahhhhhh. And worst of all, after Matthew died, I was convinced that his chromosomal problem was punishment from God. I thought that since my bad egg was the cause, and I insisted we try that month, it was my fault. I went so far as to believe that it was because I forced my husband to have sex with me on a Tuesday when he was tired from working, instead of waiting for the weekend. Yep, having sex on a Tuesday causes dead babies.
Utterly ludicrous, I know.
There are lots of other minor ones, like buying maternity clothes, and getting baby stuff, but those I am going to try and conquer by calculating how much circulation I'll be cutting the blood flow off to my uterus with splitting tight clothes, or by remembering how hard shopping was with newborn Mac after I hadn't bought a damn thing for him for nine months. I swear I whimpered in pain through that whole damn store. *Shudder*
And yes, this is the reason why I have become a science freak, so that I can conquer my terror and stop having panic attacks at every turn. I don't want to be afraid to live my life. I don't want to feel guilty anymore.
So after all this discussion, I told Mr.Cotta about my fear of rock concerts and miscarriage, and he suddenly freaked out and told me I wasn't allowed to go to the concert with him, that we could take no chances! I kept trying to explain that the concert couldn't be a cause and that I am purposely trying to confront my fears about magical thinking, and not give in to them, that in fact, I SHOULD go to to the concert, and live my life based on scientific facts, not irrational fears, even if it's emotionally hard, because I don't want to live in superstitious hell. Unfortunately, he will have none of it. The look of fear in his eyes was simply unreal. I know he won't shake it. He was upset the rest of the night.
So, Monday night I guess I'll be at home, with my feet up, gestating quietly and meekly.
I am not good at meek.
Sunday, June 24, 2007
Okaaaaayyyy
I had a busy weekend, and I'm trying to catch up on all of you now, I'm almost there. Reality asked how many blogs I read. That's kind of complicated because I also read adoptee blogs and political blogs and personal bloggers of various kinds & get news feeds from different sources. Total feeds are 171, but excluding news feeds, abandoned blogs, lurking only, I'd say 140ish, then take out the non-if/pg/mommy blogs, I'm down to 90 or so.
So my weekend? Friday, I went to a political fundraiser and met an executive from a hospital here in the big city. She was very kind and inquired about a certain article she had read in the newspaper recently. We discussed implementing some changes in the way women are treated after they lose pregnancies. And maybe spreading those policies around to some more hospitals. So, I went home, and had to write up a summary and links & research from my support group and send it off. Crossing my fingers it works out...
Unfortunately I was required to drop one kid off at a birthday party and ended up staying to help the poor mother because she was so utterly overwhelmed, and had not a soul to help her with 20 7yo kids all trying to make professional pottery. (Hint: smaller number of kids, more adults, less messy activity, sigh...)
It just got crazier from then on. I went to a goodbye lunch for one of the mom's at my kids school, (she's moving to England) and ended up in this heavy duty conversation about pregnancy loss and another woman at the table ended up crying because she was treated so badly after her 13 week loss, and I seriously don't think she had ever told anyone the whole story before. So my lighthearted-hope-we-see-you-soon brunch became very very emotional for all of us at the table. Ironically, I was NOT the person who brought all this up, but I seem to have become a lightning rod for the subject. We picked ourselves up eventually, but I think I'm going to phone the crying woman later and ask her if she wants to go out alone sometime and talk more.
The woman moving to England I'm going to miss a lot actually. She's one of the few people IRL who came right up and talked to me straight out about all the media and government things I'm trying to do about loss and IF. Incredibly kind and supportive, although she's doesn't understand medically necessary terminations, so I felt a bit self-conscious and edited myself a lot. I find the average member of the public just doesn't get the concept of fatal birth defects, so I can't assume she will either, but it pointed out to me the lack of education people have when we talk about what can go wrong in pregnancy. I hate to scare people, but I'm starting to wonder if we shouldn't have great big terrifying graphic pictures out there? Stop fudging it, and just get Doctors to admit publicly there is a big list of fatal things they can't fix. I'm not sure what the solution is....
I do know I feel better when I get things off my chest. This weekend the Globe had an article all about Happiness and whether it matters. Hmmm, I can think of a few bloggers who would agree with this writer. Some fave quotes...
"While positive psychology points to rising levels of depression as a legitimate problem in our society (Prof. Ben-Shahar warns of a great “emotional bankruptcy”), its solutions are inward-looking and facile. Imagine, for a moment, where we'd be if Martin Luther King Jr. had decided to purge his negative emotions by keeping a gratitude journal?"
"She (Dr.Held) cites a study by a University of Texas psychologist, who found that depressed people who vented their pain in journals healed much more quickly than those who steamrolled it over with a mantra of pep.
“When people put their pain into words it's not merely venting, it's healing,” says Prof. Held, who has treated hundreds of patients in private practice. “It helps you to reconstrue and reformulate. It can also lead to new ways of solving a problem.”
Does anyone think that sounds like blogging?
"James Coyne, a scientist at University of Pennsylvania who studies patient adaptation to chronic illness and treatment, recently disproved claims that an upbeat attitude slowed the progression of the disease. He believes the clinical insistence on a hopeful attitude and “the will to live” in cancer wards can often make sick patients feel worse. “People start to see it in terms of blame and if the cancer spreads it's somehow their fault.”
Even worse, by insisting that the sick, poor and downright miserable among us must simply buck up to get better, Prof. Coyne (who works out of the same university where the positive psychology movement is headquartered) echoes Ms. Ehrenreich's notion that we absolve ourselves of all need to be tolerant and patient.
“The expectation that people think positive and adopt a fighting spirit becomes a strategy of the people around them not to have to manage the burden of stress,” he says."
Yes, bad me for copying this much text, but geez, can anyone reading this blog remember how many times we've all been told to "just relax" and we'll get pregnant, or that stress and anxiety caused our miscarriages? Yes, I've talked about trying to be happier and more glass half full in general in my life, but only because it helps me get up in the morning and do stuff instead of hiding under my bed. I'm under no illusions that it will fix my infertility or make a baby live.
I think this article is on to something. Any opinions?
So my weekend? Friday, I went to a political fundraiser and met an executive from a hospital here in the big city. She was very kind and inquired about a certain article she had read in the newspaper recently. We discussed implementing some changes in the way women are treated after they lose pregnancies. And maybe spreading those policies around to some more hospitals. So, I went home, and had to write up a summary and links & research from my support group and send it off. Crossing my fingers it works out...
Unfortunately I was required to drop one kid off at a birthday party and ended up staying to help the poor mother because she was so utterly overwhelmed, and had not a soul to help her with 20 7yo kids all trying to make professional pottery. (Hint: smaller number of kids, more adults, less messy activity, sigh...)
It just got crazier from then on. I went to a goodbye lunch for one of the mom's at my kids school, (she's moving to England) and ended up in this heavy duty conversation about pregnancy loss and another woman at the table ended up crying because she was treated so badly after her 13 week loss, and I seriously don't think she had ever told anyone the whole story before. So my lighthearted-hope-we-see-you-soon brunch became very very emotional for all of us at the table. Ironically, I was NOT the person who brought all this up, but I seem to have become a lightning rod for the subject. We picked ourselves up eventually, but I think I'm going to phone the crying woman later and ask her if she wants to go out alone sometime and talk more.
The woman moving to England I'm going to miss a lot actually. She's one of the few people IRL who came right up and talked to me straight out about all the media and government things I'm trying to do about loss and IF. Incredibly kind and supportive, although she's doesn't understand medically necessary terminations, so I felt a bit self-conscious and edited myself a lot. I find the average member of the public just doesn't get the concept of fatal birth defects, so I can't assume she will either, but it pointed out to me the lack of education people have when we talk about what can go wrong in pregnancy. I hate to scare people, but I'm starting to wonder if we shouldn't have great big terrifying graphic pictures out there? Stop fudging it, and just get Doctors to admit publicly there is a big list of fatal things they can't fix. I'm not sure what the solution is....
I do know I feel better when I get things off my chest. This weekend the Globe had an article all about Happiness and whether it matters. Hmmm, I can think of a few bloggers who would agree with this writer. Some fave quotes...
"While positive psychology points to rising levels of depression as a legitimate problem in our society (Prof. Ben-Shahar warns of a great “emotional bankruptcy”), its solutions are inward-looking and facile. Imagine, for a moment, where we'd be if Martin Luther King Jr. had decided to purge his negative emotions by keeping a gratitude journal?"
"She (Dr.Held) cites a study by a University of Texas psychologist, who found that depressed people who vented their pain in journals healed much more quickly than those who steamrolled it over with a mantra of pep.
“When people put their pain into words it's not merely venting, it's healing,” says Prof. Held, who has treated hundreds of patients in private practice. “It helps you to reconstrue and reformulate. It can also lead to new ways of solving a problem.”
Does anyone think that sounds like blogging?
"James Coyne, a scientist at University of Pennsylvania who studies patient adaptation to chronic illness and treatment, recently disproved claims that an upbeat attitude slowed the progression of the disease. He believes the clinical insistence on a hopeful attitude and “the will to live” in cancer wards can often make sick patients feel worse. “People start to see it in terms of blame and if the cancer spreads it's somehow their fault.”
Even worse, by insisting that the sick, poor and downright miserable among us must simply buck up to get better, Prof. Coyne (who works out of the same university where the positive psychology movement is headquartered) echoes Ms. Ehrenreich's notion that we absolve ourselves of all need to be tolerant and patient.
“The expectation that people think positive and adopt a fighting spirit becomes a strategy of the people around them not to have to manage the burden of stress,” he says."
Yes, bad me for copying this much text, but geez, can anyone reading this blog remember how many times we've all been told to "just relax" and we'll get pregnant, or that stress and anxiety caused our miscarriages? Yes, I've talked about trying to be happier and more glass half full in general in my life, but only because it helps me get up in the morning and do stuff instead of hiding under my bed. I'm under no illusions that it will fix my infertility or make a baby live.
I think this article is on to something. Any opinions?
Monday, June 18, 2007
Miracles Anyone?
June 16th, 4 years ago we discovered that I had had a miscarriage at 12 weeks. It's been a quiet weekend for me, remembering this. Here it is. This is Mira's story.
A few years after having Mac, I decided it was time for another baby...I had always wanted a big family, and thought, why not? Considering my history of trisomy 18 eggs at only 29, I thought waiting around was not such a great idea. I went off the pill, got my period, and waited....and waited...and waited some more.
And had a hot flash.
And another.
Maybe I was overheated? Pregnant already? Off to see Dr.J. She figured I just might be pregnant, or maybe my body needed a cycle or two to adjust after coming off the pill, no biggie, she ordered some blood tests, and told me she'd call. And she did.
I wasn't pregnant, and my estrogen was undetectable, and my FSH was a little high. Like 86. Not having a clue what that meant, I asked. She told me it could be premature ovarian failure, or a lab mistake. So she reordered the tests. I still hadn't had a period and felt quite bizarre, so I went along with it.
Now it was 66.
I googled high FSH. And my universe fell in.
Every medical website held out absolutely no hope and had horrible things like higher risk of mortality and morbidity, osteoporosis, premature aging, sexual dysfunction, and of course, incurable infertility.
All of it utter exaggerated bullshit I know now, but then, terrifying and depressing. I'd been on Wellbutrin in anticipation of trying again, since I had heard that it was safe as an ADD drug in pregnancy, and was going to go off stimulants for the duration. This btw, was utter bullshit as well. Stimulants are completely safe in pregnancy, and Wellbutrin is a big unknown, not an SSRI, but something else, and the only studies are very small. Stimulants have been studied for years and after much searching by Motherisk at my request, they cleared them at therapeutic doses.
But I didn't know that then, I just knew that specialist after specialist was telling me I would never get pregnant again. Two different clinics here in Toronto refused to give me appointments, right over the phone unless I agreed to donor egg ahead of time. Standard policy for anyone who has ever had an FSH over 10 in their lifetime. Not exactly ethical medical diagnosis, IMO, and certainly inappropriate to discuss a treatment plan like an ultimatum.
One Doctor agreed to give me HRT at one point, I was so desperate for relief, and I went on the pill for a month. At that point I had had ultrasounds and bone scans and been poked and prodded and referred to the nth degree. Dr.J. remeasured my E2 & FSH after that month on Day 3 of the next cycle, and shockingly enough, after 3 weeks on the pill, my FSH was 4, and my E2 was 36. I was floored....she told me not to take anymore of the pills, and just keep coming back for more blood tests. And I did....I had magically snapped back to normal for months and months afterwards. Periods a bit off, but still coming 27-30 days apart.
The REs kept saying that the new tests were meaningless, and it was impossible for me to concieve without donor egg, and still wouldn't give me appointments, but Dr.J. finally found someone willing to treat me, or at least see me for a consult.
The day of the appointment with the RE, it turns out, was in the middle of March Break. Mr.Cotta was away on business and I was taking the opportunity to paint half our house and do some major work.
I go in to meet the RE Dr. W. covered in paint splatters feeling foolish. She is not so good with the bedside manner, but I can live with that, right? When she learns that once again my period is late, she insists that right there we do a urine pregnancy test, I look at her and think, "What an idiot, how can she be so cruel? Doesn't she know I'm out of eggs?"
Lucky I didn't say it, because the stick turned blue after she dipped it! I proceeded to faint right there on the spot, just like in the movies. Dr.W. and the nurse ran to catch me, and helped me over to the lab to get an hcg beta blood test. All the while I'm crying and babbling like a fool, "I don't understand, they said never, they said never...how is this possible?" I mean for Christ's sake, if 5 expert docs at 3 different major hospitals tell you it is completely impossible to get pregnant with POF and Dr. Google finds you a support group that says you can, who are you going to believe? Yep, you guessed....
My beta that day, at what we guessed was 17-18DPO, was 1100. And it kept doubling...perfectly.
At first, I didn't tell my husband, mostly because I really didn't think it was true, and hey why get him excited over a malfunctioning pee stick? Finally, I broke the news. He freaked, since he wasn't sure if he even wanted to be around a pregnant crazy woman after enduring a crazy menopausal woman for months. He came around after the first ultrasound. Week after week we went in and saw the baby swimming around, waving, and sucking it's little thumb. At 11 weeks the final ultrasound and I'd graduated from fertility school! I made it through the first trimester and nothing could go wrong, right?
Wrong.
We went for our nuchal test the next week, and since we were going in to a hospital based genetics clinic for it, SARS had taken over, and so had the stupid people. SARS was only ever spread around by the first family that got it in China and travelled back to Canada with it, and medical personnel after that. Not one person without a hospital connection even got sick. So naturally, instead of blaming themselves for not putting on a mask and washing their own hands, doctors separated wives from husbands, children from parents, and acted like jerks.
Even though I was high risk, Mr.Cotta was only allowed in the clinic waiting room. I asked the technician if I could see the baby's heartbeat first, and then I would gladly lay still for hours if need be while she did the rest. She mumbled something and started scanning. I kept asking her what was going on, and she kept ignoring me, which only made me panic more. Eventually she got my husband but still wouldn't tell us what was going on.
She left to consult with the radiologist and came back to tell us that our baby had died and there was no heart beat. I wanted to see the screen because I didn't believe her. She was merely a technician, and of course the radiologist wouldn't come in to tell us to our face, even though he was legally required to. I guess he couldn't face a woman with a dead baby...
We met with our specialist for the day and arranged for a second ultrasound at my own hospital's clinic to confirm the baby's demise, because I wasn't going to have a D&C unless I saw the baby had no heartbeat with my own two eyes. When we arrived at that clinic, we discovered that we had to pay for a second ultrasound if it was held on the same day, which of course sent me into hysterics. And cash only, no credit cards or cheques, or even receipts. For Americans, it may be hard to understand why paying out-of-pocket mattered so much, but the criteria for OHIP coverage in Ontario is medical need. We weren't there for a video to show to our friends, we were there to get a second opinion on whether or not our baby was dead. Before doctors turn off life support on a coma victim, they need 2 different EEGS, and yet somehow, I'm expected to end my baby's life with a D&C even if the first technician might've been an incompetent twit?Not for my miracle baby!
Mr.Cotta ran to a bank machine and paid. The second radiologist was nasty and refused to let me see the screen until I insisted, and even then only for a second. I just kept thinking, lady, we just paid you cash...HELLO, you aren't in charge this time. There was still no heartbeat according to her, and she made it clear that she had gone over everything again, but I was so angry and upset at this point, I didn't know what else to do. I had to go home, even though I still didn't believe it.
The next day we made an appointment to see Dr.W. about a D&C and she scheduled me in the day after that. I woke up in agony, not quite what I had expected. I was bleeding so badly I was sent for another ultrasound. Unfortunately, I had somehow retained a piece of placenta again and had to get a second D&C a few days later. During this I was also on large amounts of antibiotics because of the fear of infection.
Then the descent into a special hell, a third D&C when my uterus filled up with blood clots and my abdomen began to swell. Afterwards, I briefly felt normal, but I still had more blood clots and serious bleeding. Another couple of rounds of Cytotec and I began to believe I was cursed. All the while, I'm in hideous physical pain, which doesn't help my mental state. I spent that summer lying on my couch taking painkillers, crying and wondering why my one shot at pregnancy had ended, so late, so long after all that all those great milestones. I later discovered that she was a perfect little girl, chromosomally normal. (And yes they tested her tissue not mine...)
Goodbye, Mira. Mama & Daddy loved you, no matter how briefly you existed, no matter how small you were, you were our daughter, and I'll miss you forever.
A few years after having Mac, I decided it was time for another baby...I had always wanted a big family, and thought, why not? Considering my history of trisomy 18 eggs at only 29, I thought waiting around was not such a great idea. I went off the pill, got my period, and waited....and waited...and waited some more.
And had a hot flash.
And another.
Maybe I was overheated? Pregnant already? Off to see Dr.J. She figured I just might be pregnant, or maybe my body needed a cycle or two to adjust after coming off the pill, no biggie, she ordered some blood tests, and told me she'd call. And she did.
I wasn't pregnant, and my estrogen was undetectable, and my FSH was a little high. Like 86. Not having a clue what that meant, I asked. She told me it could be premature ovarian failure, or a lab mistake. So she reordered the tests. I still hadn't had a period and felt quite bizarre, so I went along with it.
Now it was 66.
I googled high FSH. And my universe fell in.
Every medical website held out absolutely no hope and had horrible things like higher risk of mortality and morbidity, osteoporosis, premature aging, sexual dysfunction, and of course, incurable infertility.
All of it utter exaggerated bullshit I know now, but then, terrifying and depressing. I'd been on Wellbutrin in anticipation of trying again, since I had heard that it was safe as an ADD drug in pregnancy, and was going to go off stimulants for the duration. This btw, was utter bullshit as well. Stimulants are completely safe in pregnancy, and Wellbutrin is a big unknown, not an SSRI, but something else, and the only studies are very small. Stimulants have been studied for years and after much searching by Motherisk at my request, they cleared them at therapeutic doses.
But I didn't know that then, I just knew that specialist after specialist was telling me I would never get pregnant again. Two different clinics here in Toronto refused to give me appointments, right over the phone unless I agreed to donor egg ahead of time. Standard policy for anyone who has ever had an FSH over 10 in their lifetime. Not exactly ethical medical diagnosis, IMO, and certainly inappropriate to discuss a treatment plan like an ultimatum.
One Doctor agreed to give me HRT at one point, I was so desperate for relief, and I went on the pill for a month. At that point I had had ultrasounds and bone scans and been poked and prodded and referred to the nth degree. Dr.J. remeasured my E2 & FSH after that month on Day 3 of the next cycle, and shockingly enough, after 3 weeks on the pill, my FSH was 4, and my E2 was 36. I was floored....she told me not to take anymore of the pills, and just keep coming back for more blood tests. And I did....I had magically snapped back to normal for months and months afterwards. Periods a bit off, but still coming 27-30 days apart.
The REs kept saying that the new tests were meaningless, and it was impossible for me to concieve without donor egg, and still wouldn't give me appointments, but Dr.J. finally found someone willing to treat me, or at least see me for a consult.
The day of the appointment with the RE, it turns out, was in the middle of March Break. Mr.Cotta was away on business and I was taking the opportunity to paint half our house and do some major work.
I go in to meet the RE Dr. W. covered in paint splatters feeling foolish. She is not so good with the bedside manner, but I can live with that, right? When she learns that once again my period is late, she insists that right there we do a urine pregnancy test, I look at her and think, "What an idiot, how can she be so cruel? Doesn't she know I'm out of eggs?"
Lucky I didn't say it, because the stick turned blue after she dipped it! I proceeded to faint right there on the spot, just like in the movies. Dr.W. and the nurse ran to catch me, and helped me over to the lab to get an hcg beta blood test. All the while I'm crying and babbling like a fool, "I don't understand, they said never, they said never...how is this possible?" I mean for Christ's sake, if 5 expert docs at 3 different major hospitals tell you it is completely impossible to get pregnant with POF and Dr. Google finds you a support group that says you can, who are you going to believe? Yep, you guessed....
My beta that day, at what we guessed was 17-18DPO, was 1100. And it kept doubling...perfectly.
At first, I didn't tell my husband, mostly because I really didn't think it was true, and hey why get him excited over a malfunctioning pee stick? Finally, I broke the news. He freaked, since he wasn't sure if he even wanted to be around a pregnant crazy woman after enduring a crazy menopausal woman for months. He came around after the first ultrasound. Week after week we went in and saw the baby swimming around, waving, and sucking it's little thumb. At 11 weeks the final ultrasound and I'd graduated from fertility school! I made it through the first trimester and nothing could go wrong, right?
Wrong.
We went for our nuchal test the next week, and since we were going in to a hospital based genetics clinic for it, SARS had taken over, and so had the stupid people. SARS was only ever spread around by the first family that got it in China and travelled back to Canada with it, and medical personnel after that. Not one person without a hospital connection even got sick. So naturally, instead of blaming themselves for not putting on a mask and washing their own hands, doctors separated wives from husbands, children from parents, and acted like jerks.
Even though I was high risk, Mr.Cotta was only allowed in the clinic waiting room. I asked the technician if I could see the baby's heartbeat first, and then I would gladly lay still for hours if need be while she did the rest. She mumbled something and started scanning. I kept asking her what was going on, and she kept ignoring me, which only made me panic more. Eventually she got my husband but still wouldn't tell us what was going on.
She left to consult with the radiologist and came back to tell us that our baby had died and there was no heart beat. I wanted to see the screen because I didn't believe her. She was merely a technician, and of course the radiologist wouldn't come in to tell us to our face, even though he was legally required to. I guess he couldn't face a woman with a dead baby...
We met with our specialist for the day and arranged for a second ultrasound at my own hospital's clinic to confirm the baby's demise, because I wasn't going to have a D&C unless I saw the baby had no heartbeat with my own two eyes. When we arrived at that clinic, we discovered that we had to pay for a second ultrasound if it was held on the same day, which of course sent me into hysterics. And cash only, no credit cards or cheques, or even receipts. For Americans, it may be hard to understand why paying out-of-pocket mattered so much, but the criteria for OHIP coverage in Ontario is medical need. We weren't there for a video to show to our friends, we were there to get a second opinion on whether or not our baby was dead. Before doctors turn off life support on a coma victim, they need 2 different EEGS, and yet somehow, I'm expected to end my baby's life with a D&C even if the first technician might've been an incompetent twit?Not for my miracle baby!
Mr.Cotta ran to a bank machine and paid. The second radiologist was nasty and refused to let me see the screen until I insisted, and even then only for a second. I just kept thinking, lady, we just paid you cash...HELLO, you aren't in charge this time. There was still no heartbeat according to her, and she made it clear that she had gone over everything again, but I was so angry and upset at this point, I didn't know what else to do. I had to go home, even though I still didn't believe it.
The next day we made an appointment to see Dr.W. about a D&C and she scheduled me in the day after that. I woke up in agony, not quite what I had expected. I was bleeding so badly I was sent for another ultrasound. Unfortunately, I had somehow retained a piece of placenta again and had to get a second D&C a few days later. During this I was also on large amounts of antibiotics because of the fear of infection.
Then the descent into a special hell, a third D&C when my uterus filled up with blood clots and my abdomen began to swell. Afterwards, I briefly felt normal, but I still had more blood clots and serious bleeding. Another couple of rounds of Cytotec and I began to believe I was cursed. All the while, I'm in hideous physical pain, which doesn't help my mental state. I spent that summer lying on my couch taking painkillers, crying and wondering why my one shot at pregnancy had ended, so late, so long after all that all those great milestones. I later discovered that she was a perfect little girl, chromosomally normal. (And yes they tested her tissue not mine...)
Goodbye, Mira. Mama & Daddy loved you, no matter how briefly you existed, no matter how small you were, you were our daughter, and I'll miss you forever.
Saturday, June 09, 2007
Last Rites
My little booboy is here! (Okay, at 10 almost 11 years old, he's not so little, but to me, Kaz will always be my baby.) Booboy is back from overnight camp with his school. They do a trip every spring and fall for "outdoor education". Or something like that---maybe it's just to suck money out of the parents? Not sure....
So I've been deep into family time today and yesterday, feeling a bit like Charon...
His first morning back we decided to carry out last rites for our two cats, long ago deceased, but of course, my hubby had never picked up their ashes and done anything with them. Some back story, they were his cats, or more specifically, his ex-wife's cats. They were all he got in the divorce settlement. A long first marriage? Kids? Not quite - she left him 4 months after the wedding, but she still took every last dime, every single stick stick of furniture, and his car. He was left with two of the nastiest, most vicious cats on god's earth. Hmmm, I should amend this, instead I should say that they were loving and kind and purrfect to Mr.Cotta until their last dying breath, and nasty and vicious to me and the kids at every opportunity.
I fed them, attempted to pet them, advocated for them to go to the vet, bought them catnip & treats, barely complained while they bit me & hit me and the kids, (they were declawed so the swipes became hits instead of scratches) aggravated our allergies, and vomited and shat everywhere in our home.
For 11 looooonnng years I patiently waited for the damn little loyal devotees of the first wife to notice that I was not an interloper and that our kids were not annoyances that were leaving soon, but it never seemed to happen. So when the cats died, one after the other, I wasn't very sad. Mr.Cotta was, so I tried not to dance a jig or anything. In fact, he was so sad that after taking them to the vet hospital, he never went back to pick up their remains. Instead of just having them sent directly to the local pet cemetary, he had paid for individual specific cremations for each cat, with little containers, but was too choked up to do the final bit.
And years later when I finally had to go get the little urns, I found out that no one would have thrown them into the garbage EVER. Apparently, not only are pet funerals big business but it is considered undignified by veterinarians to allow beloved pet's bodies to go into the waste.
Now don't get me wrong, if people feel a need to have pet funerals, then I'm ALL for it. Whatever gets us through the night and all---I just can't help but contrast this with the months of legal battles I endured to bury my daughters, and the incredible hypocrisy of a funeral industry that is willing to cremate pets without a burial permit for ooooh say the LAST 30 years, but refuses to help women who have miscarried babies under 20 weeks or 500 grams, the legal definition of a stillbirth here in Ontario. Most fish and birds weigh less than that, but pet owners have never ever had a problem getting whatever they want.
And horses? The police bury their service horses with full funeral honours and go into mourning as if a fellow officer died in the line of duty. Barbaro was given a decent funeral, and no one questioned why his owners would mourn.
And yet, for women who have lost their children...yes, I'm feeling a tiny bit bitter here. Can't, just can't go there....
This morning we scattered THE CAT'S ashes in the woods of the Don Valley. Mr.Cotta wanted to go to the zoo and scatter the cats remains in the bushes around the lion's enclosure but I gently explained there were too many small children around who might wonder why the strange man was in the bushes with the white powder. So the Don Valley it was...
The last words go to Mac:
"Mommy, is it true that some cats sleep in your bed?"
"Yes, Mac"
"Well, don't people get hurt that way?"
"No Mac, most cats don't hurt their owners. In fact, some of them snuggle and purr."
"REALLY, Mommy? Wow...."
So I've been deep into family time today and yesterday, feeling a bit like Charon...
His first morning back we decided to carry out last rites for our two cats, long ago deceased, but of course, my hubby had never picked up their ashes and done anything with them. Some back story, they were his cats, or more specifically, his ex-wife's cats. They were all he got in the divorce settlement. A long first marriage? Kids? Not quite - she left him 4 months after the wedding, but she still took every last dime, every single stick stick of furniture, and his car. He was left with two of the nastiest, most vicious cats on god's earth. Hmmm, I should amend this, instead I should say that they were loving and kind and purrfect to Mr.Cotta until their last dying breath, and nasty and vicious to me and the kids at every opportunity.
I fed them, attempted to pet them, advocated for them to go to the vet, bought them catnip & treats, barely complained while they bit me & hit me and the kids, (they were declawed so the swipes became hits instead of scratches) aggravated our allergies, and vomited and shat everywhere in our home.
For 11 looooonnng years I patiently waited for the damn little loyal devotees of the first wife to notice that I was not an interloper and that our kids were not annoyances that were leaving soon, but it never seemed to happen. So when the cats died, one after the other, I wasn't very sad. Mr.Cotta was, so I tried not to dance a jig or anything. In fact, he was so sad that after taking them to the vet hospital, he never went back to pick up their remains. Instead of just having them sent directly to the local pet cemetary, he had paid for individual specific cremations for each cat, with little containers, but was too choked up to do the final bit.
And years later when I finally had to go get the little urns, I found out that no one would have thrown them into the garbage EVER. Apparently, not only are pet funerals big business but it is considered undignified by veterinarians to allow beloved pet's bodies to go into the waste.
Now don't get me wrong, if people feel a need to have pet funerals, then I'm ALL for it. Whatever gets us through the night and all---I just can't help but contrast this with the months of legal battles I endured to bury my daughters, and the incredible hypocrisy of a funeral industry that is willing to cremate pets without a burial permit for ooooh say the LAST 30 years, but refuses to help women who have miscarried babies under 20 weeks or 500 grams, the legal definition of a stillbirth here in Ontario. Most fish and birds weigh less than that, but pet owners have never ever had a problem getting whatever they want.
And horses? The police bury their service horses with full funeral honours and go into mourning as if a fellow officer died in the line of duty. Barbaro was given a decent funeral, and no one questioned why his owners would mourn.
And yet, for women who have lost their children...yes, I'm feeling a tiny bit bitter here. Can't, just can't go there....
This morning we scattered THE CAT'S ashes in the woods of the Don Valley. Mr.Cotta wanted to go to the zoo and scatter the cats remains in the bushes around the lion's enclosure but I gently explained there were too many small children around who might wonder why the strange man was in the bushes with the white powder. So the Don Valley it was...
The last words go to Mac:
"Mommy, is it true that some cats sleep in your bed?"
"Yes, Mac"
"Well, don't people get hurt that way?"
"No Mac, most cats don't hurt their owners. In fact, some of them snuggle and purr."
"REALLY, Mommy? Wow...."
Saturday, April 28, 2007
Letting go of the blame
Many many sad things have happened to me in my life, and many many good things have happened to me as well. In previous posts I've spoken about guilt and fault and who should take responsibility for what's gone on. I'm working on shedding some of that guilt right now. It's pretty hard, in fact, it's almost impossible to shed those embedded truths I carry with me.
I'm wavering right now. That breakthrough I had this last week is still there, but shaking a lot. I noticed it just after I drove past the intersection where I had a car accident in 2003. I was 8 weeks pregnant, and it was a small fender-bender, but forever and ever I've wondered if that car accident caused my miscarriage 4 weeks later. I had an ultrasound afterwards, showing the baby perfectly fine, heart beating away, no bleeding, and every week afterward, the ultrasounds were perfect for growth, and movement. Until they weren't at 12 weeks.
I spent months afterwards trying to get chromosomal testing, and pathology reports done, partially to relieve my miscarriage guilt, and partially to find an answer so it wouldn't happen again. I found the answer, and logically I know that accident was irrelevant. But still---the guilt lingers. "Maybe I should've gotten the tires changed", "Maybe I shouldn't have been driving in the rain", "Maybe I should have been paying more attention". Except, that the accident was irrelevant, my clotting disorder was the problem, my endo was the problem, so why the hell am I feeling guilty about a car accident? (Let's even look at that word - "accident" - do accidents deserve guilt?)
So I'm going wayyyy back here, and thinking about what kind of control I really have over how my life turned out. And in the end, so many things I've blamed myself for, I had zero control over.
I had no control over the circumstances of my birth. I had no control over being born to an unwed mother, or over being adopted. I had no control over who my adoptive family was picked to be. Zero, zip.
That responsibility lies with my birth mother and father who made the choice to have unprotected sex and get pregnant, and then give me up to be adopted. They may have been pressured by society, or not, it doesn't really matter. Because in the end, it was not my fault that I was born in these circumstances, and I refuse to feel guilt about it.
Same with my childhood and my life growing up. I look at my kids now, and they have zero control over their lives, at such a young age it's really all about the adults who care for them. CAS picked lousy parents for me, and it was their responsibility to pick better ones, and safeguard me as time went on. But they didn't....so I'm not blaming myself.
I have ADD, which is almost always caused by genetics, undiagnosed & untreated throughout my childhood. I had no ability to take myself to the Dr. or get myself medication, heck even when I was older and could've gone to the Dr. by myself, I still had no way of diagnosing myself with something. So, who could've?
Well, maybe my adoptive mother, who knew all about special education and learning disabilities, but refused to see it in her own home. After all, "what would the neighbours think?" Or how about my elementary & high schools, or my teachers, or my University profs, or the counselling centre I went to for help with study problems and my disorganized life. Or how about the therapists I saw, the Dr.s who all ignored the signs & symptoms I had no way of knowing about?
Or maybe society & the media could take some responsibility for endlessly perpetuating the bullshit myth that ADD doesn't exist, and the medication for it is a bad thing. Or that it is caused by some mysterious issue with character or poor morals, *eyeroll*. Frankly, for me, medication has been a freakin' miracle. It doesn't work as well if my hormonal levels are messed up, like my thyroid or my estrogen, but when they are well-controlled, it works wonderfully. Now, that I know I have it, I can take responsibility for ensuring I control it with medication and lifestyle changes, but prior to diagnosis?
Fuck no, I'm tossing that guilt.
The guilt I carry about my infertility and my miscarriages is a little more complex...women are told nothing about our bodies beyond the basic mechanics or sex, even as adults. For many of us, it isn't until we stumble across that fateful book, Taking Charge of Your Fertility, that we finally discover how our bodies REALLY work. Even then, the fertility industry really tries to pull that one apart, pushing us to spend spend spend with them, but hesitating to diagnose us properly right from the beginning.
My Dr.s should've taken better care of me, diagnosed me properly from the start, pushed for evidence based medical studies that would help us all, instead of leaving me gasping in the dark, blaming myself and my body, leaving me riddled with shame, terrified to speak it out loud. Infertility and pregnancy loss are not shameful, they are just another medical condition, like cancer or heart disease, but they are treated by society as unmentionable subjects. Things to whisper about in the dark. Behind closed doors.
As an adult I've been able to research all of this over the years and I've used it to keep myself alive, and get pregnant. But why the hell should I have to do this alone? Where are the Drs. stepping up to the plate and diagnosing the causes of IF and miscarriage? I think it's much easier to blame women. "Yes, Mrs. Smith is habitual aborter. Unexplained. She should just give up." (aka We can't diagnose or treat this patient because she will hurt our clinic's success rates.)
Can you imagine anyone saying that about cancer? "Yes, Mr. Smith is a habitual tumourer. Unexplained. He should just give up." (No, instead we biopsy, we do pathology, we give drugs, we do surgery, we never ever give up, and we sure as fuck don't call the patient a name that attributes personal blame. And if you saw the "success rates" for cancer clinics? Ha! No one even defines those, much less uses them to deny treatment.)
(Oh and for those of you who think that infertility isn't fatal like cancer, my clotting disorder if left untreated, can cause sudden cardiac death, and my daughters certainly died during my miscarriages. Many infertile women are left disabled, in pain, and bereft of organs they view as precious as kidneys and livers and lungs.)
I did nothing wrong during my pregnancies. I did the best I could with the little information I had. I didn't fail.
Others failed me.
They failed you too. Don't let them get away with it. I'm not.
I'm wavering right now. That breakthrough I had this last week is still there, but shaking a lot. I noticed it just after I drove past the intersection where I had a car accident in 2003. I was 8 weeks pregnant, and it was a small fender-bender, but forever and ever I've wondered if that car accident caused my miscarriage 4 weeks later. I had an ultrasound afterwards, showing the baby perfectly fine, heart beating away, no bleeding, and every week afterward, the ultrasounds were perfect for growth, and movement. Until they weren't at 12 weeks.
I spent months afterwards trying to get chromosomal testing, and pathology reports done, partially to relieve my miscarriage guilt, and partially to find an answer so it wouldn't happen again. I found the answer, and logically I know that accident was irrelevant. But still---the guilt lingers. "Maybe I should've gotten the tires changed", "Maybe I shouldn't have been driving in the rain", "Maybe I should have been paying more attention". Except, that the accident was irrelevant, my clotting disorder was the problem, my endo was the problem, so why the hell am I feeling guilty about a car accident? (Let's even look at that word - "accident" - do accidents deserve guilt?)
So I'm going wayyyy back here, and thinking about what kind of control I really have over how my life turned out. And in the end, so many things I've blamed myself for, I had zero control over.
I had no control over the circumstances of my birth. I had no control over being born to an unwed mother, or over being adopted. I had no control over who my adoptive family was picked to be. Zero, zip.
That responsibility lies with my birth mother and father who made the choice to have unprotected sex and get pregnant, and then give me up to be adopted. They may have been pressured by society, or not, it doesn't really matter. Because in the end, it was not my fault that I was born in these circumstances, and I refuse to feel guilt about it.
Same with my childhood and my life growing up. I look at my kids now, and they have zero control over their lives, at such a young age it's really all about the adults who care for them. CAS picked lousy parents for me, and it was their responsibility to pick better ones, and safeguard me as time went on. But they didn't....so I'm not blaming myself.
I have ADD, which is almost always caused by genetics, undiagnosed & untreated throughout my childhood. I had no ability to take myself to the Dr. or get myself medication, heck even when I was older and could've gone to the Dr. by myself, I still had no way of diagnosing myself with something. So, who could've?
Well, maybe my adoptive mother, who knew all about special education and learning disabilities, but refused to see it in her own home. After all, "what would the neighbours think?" Or how about my elementary & high schools, or my teachers, or my University profs, or the counselling centre I went to for help with study problems and my disorganized life. Or how about the therapists I saw, the Dr.s who all ignored the signs & symptoms I had no way of knowing about?
Or maybe society & the media could take some responsibility for endlessly perpetuating the bullshit myth that ADD doesn't exist, and the medication for it is a bad thing. Or that it is caused by some mysterious issue with character or poor morals, *eyeroll*. Frankly, for me, medication has been a freakin' miracle. It doesn't work as well if my hormonal levels are messed up, like my thyroid or my estrogen, but when they are well-controlled, it works wonderfully. Now, that I know I have it, I can take responsibility for ensuring I control it with medication and lifestyle changes, but prior to diagnosis?
Fuck no, I'm tossing that guilt.
The guilt I carry about my infertility and my miscarriages is a little more complex...women are told nothing about our bodies beyond the basic mechanics or sex, even as adults. For many of us, it isn't until we stumble across that fateful book, Taking Charge of Your Fertility, that we finally discover how our bodies REALLY work. Even then, the fertility industry really tries to pull that one apart, pushing us to spend spend spend with them, but hesitating to diagnose us properly right from the beginning.
My Dr.s should've taken better care of me, diagnosed me properly from the start, pushed for evidence based medical studies that would help us all, instead of leaving me gasping in the dark, blaming myself and my body, leaving me riddled with shame, terrified to speak it out loud. Infertility and pregnancy loss are not shameful, they are just another medical condition, like cancer or heart disease, but they are treated by society as unmentionable subjects. Things to whisper about in the dark. Behind closed doors.
As an adult I've been able to research all of this over the years and I've used it to keep myself alive, and get pregnant. But why the hell should I have to do this alone? Where are the Drs. stepping up to the plate and diagnosing the causes of IF and miscarriage? I think it's much easier to blame women. "Yes, Mrs. Smith is habitual aborter. Unexplained. She should just give up." (aka We can't diagnose or treat this patient because she will hurt our clinic's success rates.)
Can you imagine anyone saying that about cancer? "Yes, Mr. Smith is a habitual tumourer. Unexplained. He should just give up." (No, instead we biopsy, we do pathology, we give drugs, we do surgery, we never ever give up, and we sure as fuck don't call the patient a name that attributes personal blame. And if you saw the "success rates" for cancer clinics? Ha! No one even defines those, much less uses them to deny treatment.)
(Oh and for those of you who think that infertility isn't fatal like cancer, my clotting disorder if left untreated, can cause sudden cardiac death, and my daughters certainly died during my miscarriages. Many infertile women are left disabled, in pain, and bereft of organs they view as precious as kidneys and livers and lungs.)
I did nothing wrong during my pregnancies. I did the best I could with the little information I had. I didn't fail.
Others failed me.
They failed you too. Don't let them get away with it. I'm not.
Friday, April 20, 2007
Research, thinking, and memeing
I love surfing for news and studies and stuff....much easier than thinking up my own shit...course, then I read it and think up more stuff....damn.
Maybe that's why Jess and Reality have given me a Thinking Blogger Award!
*Blushes*
*Takes Bow*
*Scuffs floor with shoe*
I'm lousy at speeches so here is some stuff to read. Helpful? Thinky?
Some of you have pointed out this Chatelaine article. Which has pointed to this government study and recommendations on IVF funding. (I've been lobbying for this review for ages, shhhh.) I'm a little ehhh about it, because I believe that all fertility treatment should be paid for, not just adding the male factor patients, but all of us, full stop, but also because I think too many people suffer bad diagnosis. They may need IVF, they may IUI, or miscarriage treatment. We should fund everybody, IMHO.
My favourite quote from my Doctor, "Idiopathic is when the Doctor is an idiot who doesn't want to find the pathology."
Anyway, now making many phone calls and emails to my friends in Govt. hehe
Also Macleans has a good article on an adoptee who has written a book about her reunion, which had good and bad aspects. (Warning: the title & header of this article is not so good...worst choice of words ever, but it has nothing to do with the book review, so skip the title, and note the book.)
And yesterday's Globe & Mail had a good article on egg freezing and the fabulous Dr. Seang Lin-Tan of McGill IVF. Not only does he freeze eggs but he invented IVM - in vitro maturation, a technique for getting usable eggs from women who have PCOS and poor responders to stims. IVM has been around for years and I have to say I'm astonished that more clinics don't use it, considering the incredible success rates women have with it--women who get rejected from other clinics.
Awesome quote from Dr. Kutluk Oktay of Cornell - "McGill has obviously been a leader in the field," he said. Yes, it's true...Cornell isn't your only choice, ladies and gents. Canada Rocks, baby!
Of course, this may not help the rest of us, because the asshats at Health Canada are already stepping in to regulate it....men can whack off in a cup, and freeze their sperm for absolutely no reason at all, no government restrictions....but women? Nahhhh, they have to be CONTROLLED. *Sigh*
This Dr. also does egg freezing, a slightly different method, but still amazing, and something I wish I could've done years ago, so that now, I might have a damn egg left somewhere on the planet. Grrrrr.....
I have to think up who I am giving Thinking Blogger awards to now, but damned if I have too many choices. Plus some of you already have it. Well, I have to think up who to give it to again.
Here are the rules:
1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think,
2. Link to this post so that people can easily find the exact origin of the meme,
3. Optional: Proudly display the 'Thinking Blogger Award' with a link to the post that you wrote (here is an alternative silver version if gold doesn't fit your blog).
Making me think:
1. Nicole at Just Crazy Enough to Try - Her adventures with Bipolar, her science background, her law degree, and her attempts to make a baby are truly amazing.
2. Jenny at A Natural Scientist - I love her reviews of science topics for the rest of us...the non-degree holders who love the subject but need a tutor!
3. Manuela at Thin Pink Line - yes, she's behind a password, but seriously awesome posts about adoption and infertility and feminism and life. (Email her at seekingpinkline@gmail.com maybe she'll let you in, K?)
4. The contributors (Kate, Delphi, msfitza, and Julian's Mom) to the Miscarriage, Stillbith, and Infant Loss Directory - a fabulous resource for anyone who wants to learn about this subject, or get support.)
5 . Niobe at Dead Baby Jokes, who writes the most amazing heartwrenching posts while grieving the loss of her twins. I've learned more about grief from her than I have in real life in years.
Whew...long post, but know, all of you, I love you guys, and you ALL make me think.
*Smooches*
Maybe that's why Jess and Reality have given me a Thinking Blogger Award!
*Blushes*
*Takes Bow*
*Scuffs floor with shoe*
I'm lousy at speeches so here is some stuff to read. Helpful? Thinky?
Some of you have pointed out this Chatelaine article. Which has pointed to this government study and recommendations on IVF funding. (I've been lobbying for this review for ages, shhhh.) I'm a little ehhh about it, because I believe that all fertility treatment should be paid for, not just adding the male factor patients, but all of us, full stop, but also because I think too many people suffer bad diagnosis. They may need IVF, they may IUI, or miscarriage treatment. We should fund everybody, IMHO.
My favourite quote from my Doctor, "Idiopathic is when the Doctor is an idiot who doesn't want to find the pathology."
Anyway, now making many phone calls and emails to my friends in Govt. hehe
Also Macleans has a good article on an adoptee who has written a book about her reunion, which had good and bad aspects. (Warning: the title & header of this article is not so good...worst choice of words ever, but it has nothing to do with the book review, so skip the title, and note the book.)
And yesterday's Globe & Mail had a good article on egg freezing and the fabulous Dr. Seang Lin-Tan of McGill IVF. Not only does he freeze eggs but he invented IVM - in vitro maturation, a technique for getting usable eggs from women who have PCOS and poor responders to stims. IVM has been around for years and I have to say I'm astonished that more clinics don't use it, considering the incredible success rates women have with it--women who get rejected from other clinics.
Awesome quote from Dr. Kutluk Oktay of Cornell - "McGill has obviously been a leader in the field," he said. Yes, it's true...Cornell isn't your only choice, ladies and gents. Canada Rocks, baby!
Of course, this may not help the rest of us, because the asshats at Health Canada are already stepping in to regulate it....men can whack off in a cup, and freeze their sperm for absolutely no reason at all, no government restrictions....but women? Nahhhh, they have to be CONTROLLED. *Sigh*
This Dr. also does egg freezing, a slightly different method, but still amazing, and something I wish I could've done years ago, so that now, I might have a damn egg left somewhere on the planet. Grrrrr.....
I have to think up who I am giving Thinking Blogger awards to now, but damned if I have too many choices. Plus some of you already have it. Well, I have to think up who to give it to again.
Here are the rules:
1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think,
2. Link to this post so that people can easily find the exact origin of the meme,
3. Optional: Proudly display the 'Thinking Blogger Award' with a link to the post that you wrote (here is an alternative silver version if gold doesn't fit your blog).
Making me think:
1. Nicole at Just Crazy Enough to Try - Her adventures with Bipolar, her science background, her law degree, and her attempts to make a baby are truly amazing.
2. Jenny at A Natural Scientist - I love her reviews of science topics for the rest of us...the non-degree holders who love the subject but need a tutor!
3. Manuela at Thin Pink Line - yes, she's behind a password, but seriously awesome posts about adoption and infertility and feminism and life. (Email her at seekingpinkline@gmail.com maybe she'll let you in, K?)
4. The contributors (Kate, Delphi, msfitza, and Julian's Mom) to the Miscarriage, Stillbith, and Infant Loss Directory - a fabulous resource for anyone who wants to learn about this subject, or get support.)
5 . Niobe at Dead Baby Jokes, who writes the most amazing heartwrenching posts while grieving the loss of her twins. I've learned more about grief from her than I have in real life in years.
Whew...long post, but know, all of you, I love you guys, and you ALL make me think.
*Smooches*
Wednesday, April 11, 2007
Glowing--but not from what I'd like
Hey, just me here....glowing superhero chickie! No, not glowing with the joy of pregnancy---hahahahahahahahaha -puh-leeze like that would happen in me?
Nope, just glowing from an isotope. I think it makes my eyes glisten & sparkle just so!
Of course, that could also be rage for my friend Reality, who is going through a miscarriage, which could be ectopic, and has been treated horrendously by a medical establishment who couldn't get their heads out of their asses if they tried.
I get outraged by this stuff because I have been through a lot and I have worked my ass off trying to make sure that women get treated well when they are losing a very much wanted pregnancy. But do the damn Doctors listen, oh nooooo, can't do that.
#%^#$%&$#^%&
Sigh----breathe deeply, release outrage....
First part of my test went well today. My 2 hour uptake was 11%, but after they adjust the calculations, it may change. Next part of the uptake & scan, Wednesday afternoon! Weeee, 2 hours in an ugly lead-lined room....more fun! (I'm not asking for luxury, but could they choose a different paint color besides vomit green? Just sayin....) In all seriousness, if you want to know more about thyroid stuff (in all it's variations) my current favourite site is Thyroid Manager. It has some good scientific stuff, but is in a slightly easier to read format than PubMed.
Very tired....going to bed now. I have some stories to tell, but can't do it right now. Tomorrow, a much better post, I promise.
Nope, just glowing from an isotope. I think it makes my eyes glisten & sparkle just so!
Of course, that could also be rage for my friend Reality, who is going through a miscarriage, which could be ectopic, and has been treated horrendously by a medical establishment who couldn't get their heads out of their asses if they tried.
I get outraged by this stuff because I have been through a lot and I have worked my ass off trying to make sure that women get treated well when they are losing a very much wanted pregnancy. But do the damn Doctors listen, oh nooooo, can't do that.
#%^#$%&$#^%&
Sigh----breathe deeply, release outrage....
First part of my test went well today. My 2 hour uptake was 11%, but after they adjust the calculations, it may change. Next part of the uptake & scan, Wednesday afternoon! Weeee, 2 hours in an ugly lead-lined room....more fun! (I'm not asking for luxury, but could they choose a different paint color besides vomit green? Just sayin....) In all seriousness, if you want to know more about thyroid stuff (in all it's variations) my current favourite site is Thyroid Manager. It has some good scientific stuff, but is in a slightly easier to read format than PubMed.
Very tired....going to bed now. I have some stories to tell, but can't do it right now. Tomorrow, a much better post, I promise.
Saturday, April 07, 2007
Yes, about those numbers....
Someone anonymously posted a comment on this post, with no other note, so I'm not sure why? Next time leave a name, my dear, I don't bite...
What I wrote was this, "Our babies deaths rank lower on the pyramid of pain than any other deaths. You quoted a study a while back that said 31,000 babies were stillborn in the US every year. I don't even know the number in Canada, because we don't even publish it every year. (We publish the number of potatoes we grow every year, but not dead babies.)"
Anonymous said...
http://www.statcan.ca/Daily/English/050712/d050712d.htm
April 06, 2007 8:06 PM
Now, if you click on the link you will discover a report from Statistics Canada on Stillbirths. Only problem is that it is totally inaccurate, which is why I made the point that we require precise counts on crops we produce, down to the bushel, but don't count medical events like dead babies.
Inaccurate, you say? How so?
Well the legal definition of a stillbirth in Ontario, here is defined as 20 weeks gestation or over 500 grams in weight. This is the same in almost every other province, and most other states...some vary the number of weeks or weight, but the gist of it is that everything over that "counts" and everything under that has no existence.
That StatsCan table is for stillbirths over 28 weeks, a completely different criteria, therefore useless, for comparison value with other countries and provinces. It also does not distinguish between medical terminations and natural stillbirths, important because prior to the advent of prenatal diagnosis, medical terminations at that stage were only done if a woman was too ill to continue on, or wished to end the pregnancy voluntarily. This lack of distinction makes historical comparisons for public health purposes impossible.
Last July a couple of stories like this one here publicized this problem, it's behind a firewall, sorry, but you can purchase a copy, or get it from a university with a subscription. The quick summary is that thousands of births, stillbirths, and infant deaths have gone undocumented in the last 15 years in Ontario because of some major screw-ups in the office of the Registrar-General. And since Ontario is the largest province in Canada, all of the maternal-fetal health stats in Canada are skewed as a result. Which messes up the stats for the entire western industrial world. The government is now attempting to go back and fix this, but it's a big job.
(In case my non-Canadian readers are wondering why this happened, we stupidly elected an extreme right wing guy named Mike Harris at one point, and he imposed excess fees and paperwork for birth registration, (along with other excess fees for every damn thing you can think of from driving your car to paying your electric bill) so he could cut our taxes. Long story short....we're still trying to unfuck the mess....)
Back to our main point, since the invention of ultrasound, most people find out about miscarriages, fetal anomalies, and just about everything prior to 20 weeks. But that doesn't even get counted.
No one even counts those pregnancies, those losses, nothing, nada, zip, zilch.
And when the line is fuzzy, when the numbers aren't precise, when the weight is little low, the Doctors quite often ever so helpfully don't bother the parents with the paperwork. You see, stillbirths, live births and deaths requires HORDES of paperwork. And losses under 20 weeks, require none, except for the bill of course. So it looks like the rate of stillbirths is holding steady or dropping, when in fact, we're just discovering the losses earlier.
In my ideal world, public health and agencies like StatsCan record every positive beta, track the course of every pregnancy and every outcome. Whether that outcome is a joyful one or a sad one, the gestation, any health events connected to the mother and father are simply recorded. (Yes, even the ones that end in clinics with teenagers crying and praying their parents never find out.) Privacy legislation has been in effect for years so that names and identifying info is separated from health records. We do it for hip operations, cancer tumours, learning disabilities, chicken pox, literally every health event under the sun...except for this.
Why should this be counted to?
Because it's damn hard to solve a problem when you have no idea how big it is.
What I wrote was this, "Our babies deaths rank lower on the pyramid of pain than any other deaths. You quoted a study a while back that said 31,000 babies were stillborn in the US every year. I don't even know the number in Canada, because we don't even publish it every year. (We publish the number of potatoes we grow every year, but not dead babies.)"
Anonymous said...
http://www.statcan.ca/Daily/English/050712/d050712d.htm
April 06, 2007 8:06 PM
Now, if you click on the link you will discover a report from Statistics Canada on Stillbirths. Only problem is that it is totally inaccurate, which is why I made the point that we require precise counts on crops we produce, down to the bushel, but don't count medical events like dead babies.
Inaccurate, you say? How so?
Well the legal definition of a stillbirth in Ontario, here is defined as 20 weeks gestation or over 500 grams in weight. This is the same in almost every other province, and most other states...some vary the number of weeks or weight, but the gist of it is that everything over that "counts" and everything under that has no existence.
That StatsCan table is for stillbirths over 28 weeks, a completely different criteria, therefore useless, for comparison value with other countries and provinces. It also does not distinguish between medical terminations and natural stillbirths, important because prior to the advent of prenatal diagnosis, medical terminations at that stage were only done if a woman was too ill to continue on, or wished to end the pregnancy voluntarily. This lack of distinction makes historical comparisons for public health purposes impossible.
Last July a couple of stories like this one here publicized this problem, it's behind a firewall, sorry, but you can purchase a copy, or get it from a university with a subscription. The quick summary is that thousands of births, stillbirths, and infant deaths have gone undocumented in the last 15 years in Ontario because of some major screw-ups in the office of the Registrar-General. And since Ontario is the largest province in Canada, all of the maternal-fetal health stats in Canada are skewed as a result. Which messes up the stats for the entire western industrial world. The government is now attempting to go back and fix this, but it's a big job.
(In case my non-Canadian readers are wondering why this happened, we stupidly elected an extreme right wing guy named Mike Harris at one point, and he imposed excess fees and paperwork for birth registration, (along with other excess fees for every damn thing you can think of from driving your car to paying your electric bill) so he could cut our taxes. Long story short....we're still trying to unfuck the mess....)
Back to our main point, since the invention of ultrasound, most people find out about miscarriages, fetal anomalies, and just about everything prior to 20 weeks. But that doesn't even get counted.
No one even counts those pregnancies, those losses, nothing, nada, zip, zilch.
And when the line is fuzzy, when the numbers aren't precise, when the weight is little low, the Doctors quite often ever so helpfully don't bother the parents with the paperwork. You see, stillbirths, live births and deaths requires HORDES of paperwork. And losses under 20 weeks, require none, except for the bill of course. So it looks like the rate of stillbirths is holding steady or dropping, when in fact, we're just discovering the losses earlier.
In my ideal world, public health and agencies like StatsCan record every positive beta, track the course of every pregnancy and every outcome. Whether that outcome is a joyful one or a sad one, the gestation, any health events connected to the mother and father are simply recorded. (Yes, even the ones that end in clinics with teenagers crying and praying their parents never find out.) Privacy legislation has been in effect for years so that names and identifying info is separated from health records. We do it for hip operations, cancer tumours, learning disabilities, chicken pox, literally every health event under the sun...except for this.
Why should this be counted to?
Because it's damn hard to solve a problem when you have no idea how big it is.
Tuesday, April 03, 2007
On that whole Oprah issue
I blather on too long sometimes in people's comments. So I'm going to put some of it on my own blog. This post is in reply to this post.
Dear Catherine,
I'm not sure I'll say this right, I hope you understand what I'm trying to get at. My heart breaks for you when I read some of your posts, and all I can offer is a few thoughts. Not much, I guess.
This is my take on Oprah, for what it's worth. The difference with infant loss and Oprah as opposed to other show topics, is that she has serious personal issues around denial of her own child's death. And I feel like she is trying to say that we should ALL grieve the same way, by going on and on about "God's plan", and just "move on & forget". Well, you know my opinion on that already.
Some people think her silence on this issue because of the connection to the rape she suffered that caused the pregnancy, but I don't believe that's why Oprah can't talk about it. Twenty years ago, when she disclosed her sexual abuse and rape, she focused on the pain at first, as she needed to, then focused on creating change, by going to Congress and getting laws changed to protect kids. She talked a lot about the process of her therapy and her pain, and how she was going to use it for the better.
She left the part about her dead child out though. Never mentioned, never spoken, like the biggest secret ever. Total utter denial of its existence, until she was recently confronted in the media. And not only does she not discuss her pain, or ours Catherine, but she keeps repeating over and over again that it's "God's plan" that our babies die. This is just bad theology, and it also is something she would never have said about her sexual abuse.
Imagine Oprah standing in front of a child, and telling her it was God's plan that the girl be raped? That God purposely wanted her to be raped and abused so that she could go onto some bigger higher purpose....That would NEVER happen. It would never happen to cancer patients after they die, or the Tsunami victims, or gee, let's see, can you imagine Oprah saying it about 9/11?
In fact, if anyone ever said that the 9/11 victims had to die, that it served God's higher purpose, "all part of his plan", they would be accused of terrorism. Muslim clerics who have espoused this view have been convicted of inciting terrorist acts.
Our babies deaths rank lower on the pyramid of pain than any other deaths. You quoted a study a while back that said 31,000 babies were stillborn in the US every year. I don't even know the number in Canada, because we don't even publish it every year. (We publish the number of potatoes we grow every year, but not dead babies.) Why is it that maternal-fetal health is the lowest priority in the world? Maybe because no one gives a damn if women and babies die? Sort of like 20 years ago when no one cared about child sexual abuse or rape?
The pivotal difference in that fight, was Oprah coming out, and opening up her heart enough to work for change. The first step is awareness, which means yes, sad stories, acknowledgement of our losses, and giving us credit as legitimate grievers. Next, was figuring out where the problem was, and dealing with it. For sexual abuse victims she went to Congress and fought to help abused kids, she made it clear that they were telling the truth, not lying, that their suffering wasn't just a "nothing." For pregnancy loss, she could do the same thing. She could have researchers on her show that talk about how they can't get funding for studies to help save babies. She could talk about how cheap and easy it would be to save so many of those babies, instead of spending money on NICUs and funerals later. She could talk about the morality of a public that craps on women who have abortions, but refuses to pay for prenatal care for women who stay pregnant. About churches who believe an embryo is a life worth protecting when it's on it's way to an abortion clinic, yet refuse to hold funerals or burials when our babies die.
She could easily fill an hour, and keep us spellbound doing it.
I want her to do that for US, Catherine, for all of us who have ever lost a very much wanted pregnancy. I know it's incredibly hard, that's why in all these years she has never been able to do it. And maybe she never ever will. But in the same way that she would never tell a rape victim to "get over it" or "forget about it", I don't want her or Rev. Run to deny me my right to my legitimiate grief.
My fondest wish is for Oprah to use her righteous indignation to help us save our babies. Lori left a great quote on my blog, "Dear God, there is so much pain and anguish in your world - why don't you send help?" And God answered, "I did send help - I sent you."
Catherine, I believe God sent YOU. He sent me. He sent all of us, even Oprah.
Love your friend,
Aurelia
Dear Catherine,
I'm not sure I'll say this right, I hope you understand what I'm trying to get at. My heart breaks for you when I read some of your posts, and all I can offer is a few thoughts. Not much, I guess.
This is my take on Oprah, for what it's worth. The difference with infant loss and Oprah as opposed to other show topics, is that she has serious personal issues around denial of her own child's death. And I feel like she is trying to say that we should ALL grieve the same way, by going on and on about "God's plan", and just "move on & forget". Well, you know my opinion on that already.
Some people think her silence on this issue because of the connection to the rape she suffered that caused the pregnancy, but I don't believe that's why Oprah can't talk about it. Twenty years ago, when she disclosed her sexual abuse and rape, she focused on the pain at first, as she needed to, then focused on creating change, by going to Congress and getting laws changed to protect kids. She talked a lot about the process of her therapy and her pain, and how she was going to use it for the better.
She left the part about her dead child out though. Never mentioned, never spoken, like the biggest secret ever. Total utter denial of its existence, until she was recently confronted in the media. And not only does she not discuss her pain, or ours Catherine, but she keeps repeating over and over again that it's "God's plan" that our babies die. This is just bad theology, and it also is something she would never have said about her sexual abuse.
Imagine Oprah standing in front of a child, and telling her it was God's plan that the girl be raped? That God purposely wanted her to be raped and abused so that she could go onto some bigger higher purpose....That would NEVER happen. It would never happen to cancer patients after they die, or the Tsunami victims, or gee, let's see, can you imagine Oprah saying it about 9/11?
In fact, if anyone ever said that the 9/11 victims had to die, that it served God's higher purpose, "all part of his plan", they would be accused of terrorism. Muslim clerics who have espoused this view have been convicted of inciting terrorist acts.
Our babies deaths rank lower on the pyramid of pain than any other deaths. You quoted a study a while back that said 31,000 babies were stillborn in the US every year. I don't even know the number in Canada, because we don't even publish it every year. (We publish the number of potatoes we grow every year, but not dead babies.) Why is it that maternal-fetal health is the lowest priority in the world? Maybe because no one gives a damn if women and babies die? Sort of like 20 years ago when no one cared about child sexual abuse or rape?
The pivotal difference in that fight, was Oprah coming out, and opening up her heart enough to work for change. The first step is awareness, which means yes, sad stories, acknowledgement of our losses, and giving us credit as legitimate grievers. Next, was figuring out where the problem was, and dealing with it. For sexual abuse victims she went to Congress and fought to help abused kids, she made it clear that they were telling the truth, not lying, that their suffering wasn't just a "nothing." For pregnancy loss, she could do the same thing. She could have researchers on her show that talk about how they can't get funding for studies to help save babies. She could talk about how cheap and easy it would be to save so many of those babies, instead of spending money on NICUs and funerals later. She could talk about the morality of a public that craps on women who have abortions, but refuses to pay for prenatal care for women who stay pregnant. About churches who believe an embryo is a life worth protecting when it's on it's way to an abortion clinic, yet refuse to hold funerals or burials when our babies die.
She could easily fill an hour, and keep us spellbound doing it.
I want her to do that for US, Catherine, for all of us who have ever lost a very much wanted pregnancy. I know it's incredibly hard, that's why in all these years she has never been able to do it. And maybe she never ever will. But in the same way that she would never tell a rape victim to "get over it" or "forget about it", I don't want her or Rev. Run to deny me my right to my legitimiate grief.
My fondest wish is for Oprah to use her righteous indignation to help us save our babies. Lori left a great quote on my blog, "Dear God, there is so much pain and anguish in your world - why don't you send help?" And God answered, "I did send help - I sent you."
Catherine, I believe God sent YOU. He sent me. He sent all of us, even Oprah.
Love your friend,
Aurelia
Tuesday, March 27, 2007
Hard Work
I've had some really intense discussions lately, with my husband, with friends, with reporters, online with people, and with my therapist.
I have a strong sense of justice. Injustice bothers me so intensely I literally cannot sleep. I have focused on generic injustices in the universe but I'm starting to focus on myself more. Like, maybe I deserve some justice too. Personally.
Pink is pink, green is green. Repeat it a billion times in a row, and pink will still not be green. Even if 'they' think it SHOULD be.
From my own birth through every reproductive event in my life, the world has told me how I SHOULD feel. No one ever ASKS me how I feel, or why I feel this way, or believes me if I don't give them the answer they like.
Okay, many of YOU ask and care, but some people in my world IRL, don't. Some blogreaders don't.
So as far as being an adoptee, infertility, miscarriage, stillbirth, momming, working, grieving, and just plain old living:
Dear World,
Don't tell me how to feel.
Ask
Don't tell my feelings are "wrong" because it doesn't fit your predefined world view. Just accept that I have a right to any damn feelings I want.
Don't dismiss me, minimize my feelings, or pretend I'm stupid. Don't 'label' me depressed because I'm not 'over it' in the precise timeframe you want me to be. I may never feel 'over it.' My actions may be wrong, my beliefs and theology may be messed up, my words may be inappropriately phrased.
But my feelings are never wrong, they just are what they are.
I may never get the justice I want, and I have to figure out how to sit with that. If none of the people who have hurt me ever apologizes to me or explains what happened, I may feel shitty forever.
I am sad my babies are dead.
I am sad I was adopted.
I am sad I was adopted by the people I got stuck with.
I am sad my ovaries are in organ failure.
I am sad I may never get pregnant or stay pregnant again.
I am sad the world thinks these issues are no big deal.
I am also strangely enough, still a happy productive accomplished person and a good mother. It is possible to go through life and carry some sadness and still be happy to exist. It's just heavier baggage to carry.
Even if you, World, don't think this juxtaposition of my feelings SHOULD exist.
Damned impudent nervy woman that I am...
Signed,
Aurelia
P.S. I feel like the last week has been a marathon every day. And pressing publish feels like an emotional release. The good kind.
I have a strong sense of justice. Injustice bothers me so intensely I literally cannot sleep. I have focused on generic injustices in the universe but I'm starting to focus on myself more. Like, maybe I deserve some justice too. Personally.
Pink is pink, green is green. Repeat it a billion times in a row, and pink will still not be green. Even if 'they' think it SHOULD be.
From my own birth through every reproductive event in my life, the world has told me how I SHOULD feel. No one ever ASKS me how I feel, or why I feel this way, or believes me if I don't give them the answer they like.
Okay, many of YOU ask and care, but some people in my world IRL, don't. Some blogreaders don't.
So as far as being an adoptee, infertility, miscarriage, stillbirth, momming, working, grieving, and just plain old living:
Dear World,
Don't tell me how to feel.
Ask
Don't tell my feelings are "wrong" because it doesn't fit your predefined world view. Just accept that I have a right to any damn feelings I want.
Don't dismiss me, minimize my feelings, or pretend I'm stupid. Don't 'label' me depressed because I'm not 'over it' in the precise timeframe you want me to be. I may never feel 'over it.' My actions may be wrong, my beliefs and theology may be messed up, my words may be inappropriately phrased.
But my feelings are never wrong, they just are what they are.
I may never get the justice I want, and I have to figure out how to sit with that. If none of the people who have hurt me ever apologizes to me or explains what happened, I may feel shitty forever.
I am sad my babies are dead.
I am sad I was adopted.
I am sad I was adopted by the people I got stuck with.
I am sad my ovaries are in organ failure.
I am sad I may never get pregnant or stay pregnant again.
I am sad the world thinks these issues are no big deal.
I am also strangely enough, still a happy productive accomplished person and a good mother. It is possible to go through life and carry some sadness and still be happy to exist. It's just heavier baggage to carry.
Even if you, World, don't think this juxtaposition of my feelings SHOULD exist.
Damned impudent nervy woman that I am...
Signed,
Aurelia
P.S. I feel like the last week has been a marathon every day. And pressing publish feels like an emotional release. The good kind.
Monday, March 26, 2007
YouTubing it for my peeps
I need to cheer up so I'm going to do a list of all the Youtube videos that have any relation whatsoever to pregnancy, infertility, miscarriage, or loss also music videos that talk about this stuff and this time, I'm not including "cute baby goes splat videos", they can go on another post.
Any suggestions? Additions?
First up - Lady Saw - No Less than a Woman "Infertility" - awesome video
Free Hugs Campaign - Because sometimes hugs can really help after a BFN
Nine months of gestation in 20 seconds - Because some of our pregnancies only last 20 seconds, I know some of mine have. (Baby in last 2 seconds of movie, pause just before if you don't feel like looking)
Dixie Chicks - Not Ready to Make Nice - I know it's about politics, but this also sounds like I felt after I lost my babies....
Dixie Chicks - It's so hard when it doesn't come easy - can't find the video, anyone out there?
Monty Python - Every Sperm is Sacred - C'mon I had to put this one in, puh-leeze.
Monty Python - Sex Education - Everyone thinks babies are made this way, but I think they left some important parts out, like the injections? And the infertility financing credit card?
(You have to do an easy sign in for the above one BTW, YouTube thinks it's dirty, apparently the word clitoris is rather shocking, snort!)
Monty Python - Hospital Sketch - Illustrates the way I usually view Drs. and hospitals.
Any others, doesn't have to be Youtube...just leave them in the comments or email me and we'll add them to the list!
Thanks!
Any suggestions? Additions?
First up - Lady Saw - No Less than a Woman "Infertility" - awesome video
Free Hugs Campaign - Because sometimes hugs can really help after a BFN
Nine months of gestation in 20 seconds - Because some of our pregnancies only last 20 seconds, I know some of mine have. (Baby in last 2 seconds of movie, pause just before if you don't feel like looking)
Dixie Chicks - Not Ready to Make Nice - I know it's about politics, but this also sounds like I felt after I lost my babies....
Dixie Chicks - It's so hard when it doesn't come easy - can't find the video, anyone out there?
Monty Python - Every Sperm is Sacred - C'mon I had to put this one in, puh-leeze.
Monty Python - Sex Education - Everyone thinks babies are made this way, but I think they left some important parts out, like the injections? And the infertility financing credit card?
(You have to do an easy sign in for the above one BTW, YouTube thinks it's dirty, apparently the word clitoris is rather shocking, snort!)
Monty Python - Hospital Sketch - Illustrates the way I usually view Drs. and hospitals.
Any others, doesn't have to be Youtube...just leave them in the comments or email me and we'll add them to the list!
Thanks!
Wednesday, March 21, 2007
Not sure why I'm saving this - so I'm sharing it
Updated with a correct drug name and another study link.
I started blogging long after my last confirmed pregnancy and loss happened. Recently a few bloggers, long-term ones, mentioned how long they had been TTC and been blogging, and I laughed at first, then realized with a shock, I've been doing this longer...and my last pregnancy longer than a chemical of a few days, was in 2004. The blogosphere barely existed back then.
I'm an old fart.
And some of the things you all now take for granted, like getting chromosomal analysis done on yourselves or your lost pregnancies, or using intravaginal prometrium instead of PIO, I helped make those things standard.
(Sounds strange, but all I'm going to say right now, is that I am a a tenacious bitch who threatens to sue at the drop of a hat, and then forces a policy change as a result. Never fuck with an obsessed grieving mother. Never.)
But I don't talk about it all here, and that is useless to me and to my blog friends like you all, who might need to read this or see it or know why I show up on your blog and give out useless assvice. Because maybe it isn't useless, at least sometimes.
(If any scientists reading any of this blog ever, have any corrections, updates, misspellings, whatever, please email me at aurelia dot cotta at gmail dot com, or leave a comment and I will fix it. I want this right if I'm going to save any wanted pregnancies. Thanks for your help!)
One thing I've done is try to fight for better diagnosis of miscarriage and pregnancy loss. There is very little evidence based medicine that researches how often and why miscarriages occur, and designs methods to prevent and treat them. The rule about not diagnosing miscarriage causes until after 3 losses is utter bullshit, based on population stats, but not lab & pathology reports. And that is a crime against all women's health IMO, not just the infertile. I am not a lab experiment dammit!
So, this is the method I will use again if I ever can get a damn egg out of my ovaries, and persuade it to speak to a sperm. I doubt I'll ever need it, (*sob*) so maybe you guys can use it?
First thing is, that chromosomally damaged pregnancies can't be saved using these meds. And lots of losses, especially early ones that do not show a heartbeat or movement or growth, are chromosomal. But lots aren't. Many miscarriages, premature births, stillbirths and things like IUGR, quite often can be a result of placental dysfunction, clots, calcifications, inflammation, improper formation, etc. (not always, but sometimes)
My endometriosis adhesions could have caused the my placental inflammation, or a gene I have called PAI-1 4G/4G, which causes reduced fibrin clearance. In other words, my blood doesn't sweep away the crap that accumulates when something tears in my body. ( a cut, a scrape, a placenta attaching to a wall, etc.) It's sort of like having the opposite of hemophilia, ie. too much clotting, as opposed to not enough. This gene and endo have been linked, but because of epigenetics, (what happens to you in your life like your environment, viruses, infections, or medical conditions can switch your genes on and off, therefore, biology isn't destiny) I don't put much stock in the idea that we are helpless against our genes.
For example, this gene can cause death in sepsis in meningitis and pneumonia. In fact, most people don't die from these diseases, but the ones who get very ill, quite often have this gene. But we have vaccines for those things, so I got the pneumovax shot, and meningitis (Mena.ct-ra) shots, and I no longer worry about the gene in that respect. I'll keep getting any new shots I find, and I go to a cardiologist once a year for checkups. Is there a fix for this gene in pregnancy? Not a fix precisely, but a treatment protocol I dreamed up with my RE's help.
I know about the inflammation on my placenta, because I hired a placental pathologist look at the remains of both my late miscarriages. Her name is Dr. Carolyn Salafia and she is at Early Path Consultations here.
She has lots of scientific info on her site about placentas and pregnancy. I love her to pieces!!!
Anyway, basically the idea is that as soon as you ovulate or transfer an embryo you start using hcg (as a micro dose shot, 1000 iu/day or 3000 iu/every three days & not just as a trigger), baby aspirin, progesterone, prednisone, and folic acid. This study describes one version.
After confirming pregnancy, (2 successive blood hcg tests, inbetween micro hcg shots, beta goes up you are preggers, down you aren't), you switch the aspirin to heparin and keep it all up for the first trimester.
You check the progress of the placenta formation by doing weekly early dopplers on the uterine arterial blood flow.
In the second trimester you continue the heparin, use weekly progesterone shots (17-hydroxyprogesterone caproate) study citation here instead of suppositories or prometrium and continue folic acid. Prednisone can be stopped when you feel comfortable with the doppler numbers and your blood pressure stays nice and low.
It's not too late for people to get a report from Early Path, if your losses occurred even a few years ago. Slides from every placenta & birth or pregnancy loss, even terminations, are always kept for 10 years by law in most jurisdictions (Canada & US), so you could ask your hospital or Doctor to send slides and whatever paper records and test results you have.
I know this all sounds complicated, but it's easier than delivering dead baby after dead baby, until you get a live one, and a hell of a lot less traumatic I think.
I'm going to explain more about some of this in subsequent posts and what has happened to me in the past. I just can't write anymore today.
I started blogging long after my last confirmed pregnancy and loss happened. Recently a few bloggers, long-term ones, mentioned how long they had been TTC and been blogging, and I laughed at first, then realized with a shock, I've been doing this longer...and my last pregnancy longer than a chemical of a few days, was in 2004. The blogosphere barely existed back then.
I'm an old fart.
And some of the things you all now take for granted, like getting chromosomal analysis done on yourselves or your lost pregnancies, or using intravaginal prometrium instead of PIO, I helped make those things standard.
(Sounds strange, but all I'm going to say right now, is that I am a a tenacious bitch who threatens to sue at the drop of a hat, and then forces a policy change as a result. Never fuck with an obsessed grieving mother. Never.)
But I don't talk about it all here, and that is useless to me and to my blog friends like you all, who might need to read this or see it or know why I show up on your blog and give out useless assvice. Because maybe it isn't useless, at least sometimes.
(If any scientists reading any of this blog ever, have any corrections, updates, misspellings, whatever, please email me at aurelia dot cotta at gmail dot com, or leave a comment and I will fix it. I want this right if I'm going to save any wanted pregnancies. Thanks for your help!)
One thing I've done is try to fight for better diagnosis of miscarriage and pregnancy loss. There is very little evidence based medicine that researches how often and why miscarriages occur, and designs methods to prevent and treat them. The rule about not diagnosing miscarriage causes until after 3 losses is utter bullshit, based on population stats, but not lab & pathology reports. And that is a crime against all women's health IMO, not just the infertile. I am not a lab experiment dammit!
So, this is the method I will use again if I ever can get a damn egg out of my ovaries, and persuade it to speak to a sperm. I doubt I'll ever need it, (*sob*) so maybe you guys can use it?
First thing is, that chromosomally damaged pregnancies can't be saved using these meds. And lots of losses, especially early ones that do not show a heartbeat or movement or growth, are chromosomal. But lots aren't. Many miscarriages, premature births, stillbirths and things like IUGR, quite often can be a result of placental dysfunction, clots, calcifications, inflammation, improper formation, etc. (not always, but sometimes)
My endometriosis adhesions could have caused the my placental inflammation, or a gene I have called PAI-1 4G/4G, which causes reduced fibrin clearance. In other words, my blood doesn't sweep away the crap that accumulates when something tears in my body. ( a cut, a scrape, a placenta attaching to a wall, etc.) It's sort of like having the opposite of hemophilia, ie. too much clotting, as opposed to not enough. This gene and endo have been linked, but because of epigenetics, (what happens to you in your life like your environment, viruses, infections, or medical conditions can switch your genes on and off, therefore, biology isn't destiny) I don't put much stock in the idea that we are helpless against our genes.
For example, this gene can cause death in sepsis in meningitis and pneumonia. In fact, most people don't die from these diseases, but the ones who get very ill, quite often have this gene. But we have vaccines for those things, so I got the pneumovax shot, and meningitis (Mena.ct-ra) shots, and I no longer worry about the gene in that respect. I'll keep getting any new shots I find, and I go to a cardiologist once a year for checkups. Is there a fix for this gene in pregnancy? Not a fix precisely, but a treatment protocol I dreamed up with my RE's help.
I know about the inflammation on my placenta, because I hired a placental pathologist look at the remains of both my late miscarriages. Her name is Dr. Carolyn Salafia and she is at Early Path Consultations here.
She has lots of scientific info on her site about placentas and pregnancy. I love her to pieces!!!
Anyway, basically the idea is that as soon as you ovulate or transfer an embryo you start using hcg (as a micro dose shot, 1000 iu/day or 3000 iu/every three days & not just as a trigger), baby aspirin, progesterone, prednisone, and folic acid. This study describes one version.
After confirming pregnancy, (2 successive blood hcg tests, inbetween micro hcg shots, beta goes up you are preggers, down you aren't), you switch the aspirin to heparin and keep it all up for the first trimester.
You check the progress of the placenta formation by doing weekly early dopplers on the uterine arterial blood flow.
In the second trimester you continue the heparin, use weekly progesterone shots (17-hydroxyprogesterone caproate) study citation here instead of suppositories or prometrium and continue folic acid. Prednisone can be stopped when you feel comfortable with the doppler numbers and your blood pressure stays nice and low.
It's not too late for people to get a report from Early Path, if your losses occurred even a few years ago. Slides from every placenta & birth or pregnancy loss, even terminations, are always kept for 10 years by law in most jurisdictions (Canada & US), so you could ask your hospital or Doctor to send slides and whatever paper records and test results you have.
I know this all sounds complicated, but it's easier than delivering dead baby after dead baby, until you get a live one, and a hell of a lot less traumatic I think.
I'm going to explain more about some of this in subsequent posts and what has happened to me in the past. I just can't write anymore today.
Monday, March 12, 2007
Drama, Drama, DRAMA BABY!
I'm having a bit of a day, a few days, which is why I've been out of touch and not blogging/brighting. (DD's invention, web writer = briter, not blogger, K?) This weekend was husband's birthday, and we tried to give him a nice day. Sunday we had a bunch of people over for dinner, and today, I had some adventures in therapy.
I had a very long EMDR session with my therapist today, and worked on some issues around my adoptive family and my miscarriages. How do these connect? Pretty simple, society refuses to acknowledge losses it is uncomfortable with. The loss of my biological connection at birth matters to me, and the loss of my very much wanted miscarried children matters to me.
But to the world, not so much.
I know, worth comes from within, and I shouldn't worry about what others think, but I'm not made of steel, and there are limits to how many shitty people I can take per square inch. So I'm working this out in my brain. It's hard, overwhelms me sometimes, and then it gets a bit better. Sort of like trying to make a wild rollercoaster ride into a nice smooth train ride, it takes time to untwist all that neurosis.
Speaking of ignoring my emotional limits, I topped off my day with a nice long interview with a reporter at the cemetary. We sat around the gravesite in the freezing cold, talking and drinking lousy coffee. (Yes, I really know how to entertain the fourth estate...fuck...oh well)
This really got my adrenaline pumping...the article won't be out for a long long while btw, she'll let me know when I guess. Feels like an eternity at this point, plus she's making it about other parts of Canada, not just my city.
So, I'm excited and exhausted and yes I know I seriously did way too much today, I plan on vegging tomorrow and reading all of you brighters. I have barely looked in on your blogs all this weekend and today.
Must sleep now...rollercoaster is coming to an end for the night.
I had a very long EMDR session with my therapist today, and worked on some issues around my adoptive family and my miscarriages. How do these connect? Pretty simple, society refuses to acknowledge losses it is uncomfortable with. The loss of my biological connection at birth matters to me, and the loss of my very much wanted miscarried children matters to me.
But to the world, not so much.
I know, worth comes from within, and I shouldn't worry about what others think, but I'm not made of steel, and there are limits to how many shitty people I can take per square inch. So I'm working this out in my brain. It's hard, overwhelms me sometimes, and then it gets a bit better. Sort of like trying to make a wild rollercoaster ride into a nice smooth train ride, it takes time to untwist all that neurosis.
Speaking of ignoring my emotional limits, I topped off my day with a nice long interview with a reporter at the cemetary. We sat around the gravesite in the freezing cold, talking and drinking lousy coffee. (Yes, I really know how to entertain the fourth estate...fuck...oh well)
This really got my adrenaline pumping...the article won't be out for a long long while btw, she'll let me know when I guess. Feels like an eternity at this point, plus she's making it about other parts of Canada, not just my city.
So, I'm excited and exhausted and yes I know I seriously did way too much today, I plan on vegging tomorrow and reading all of you brighters. I have barely looked in on your blogs all this weekend and today.
Must sleep now...rollercoaster is coming to an end for the night.
Sunday, March 04, 2007
Those difficult moments
(I know part of this post may upset some adoptees and birth mothers out there. I'm sorry ahead of time, please know that each situation is unique, I'm not referring to you, and really this post is about my husband and me.)
Yesterday we all went out to a family party that was meant as a celebration for my 10 year old niece. There was a bunch of extended family there, and for the first time, the little girl I mentioned waaaay back here.
When I first heard that this very young relative was pregnant unexpectedly, I had wondered out loud to my husband about the possibility of us adopting the baby, simply because knowing her, I knew that this woman would not be a very good mother, and I didn't want CAS to seize the child and take her away from all her blood relatives and give her to strangers to raise or let her bounce around foster care. It wasn't something we had done anything about, and she of course, had no interest in giving up her child. But she also had no interest in being a good mother, she really sincerely thought it would be lots of fun to hang out with a baby, assumed she would gets "lots" of money from it, (yes, a quote). Totally unrealistic...
Well, over a year later, back in the real world, it has been very very hard for her to keep her child. She gets daycare subsidies, but works nights in a bar, so she never sees the little girl. (She refuses to try and get a day job, "too boring.") Her ex-boyfriend keeps trying to get more and more time with the child, and gives her some money, but not much because he has very little money. Two parents (who are more like kids themselves), no high school education, no parenting skills, and no motivation to try. Yes, the child will have food and shelter courtesy of grandparents, and no-one will physically hurt her, but still not exactly a great situation...
Anyway, the baby was there, with her grandmother, and all of us. I kept it together and tried to be nice and polite, baby chit-chat and all. (Honest admission: It is hard for me to see any baby anywhere, not just this one.) The hostess had called me and given me a heads up that they would be there, which I was glad for, since I could stick myself in the right frame of mind ahead of time.
The strange thing was my husband reaction...Mr. Cool and Collected was acting so strange, I couldn't get over it. He was running around COOING after this little baby girl. Trying to get her attention, making goo goo faces. He was positively yearning for her to pay some attention to him, to play with him, to hug him.
He NEVER does this, with any baby except our own boys, and they haven't been babies in ages. It was just so hard to see him, so obviously wanting a child, and knowing that it probably won't happen.
He never talks about our lost daughters, just alludes to "the reason we bought the car," or "what happened before."
For years now, he has acted like he doesn't even want me to try to get pregnant, that he has no interest in having more kids, and that he only goes along with all my obsessions just to keep the peace. (Interspersed of course, with comments that make it clear he wants to have a baby. And of course, we are still having sex, blah blah blah *eyeroll*) A few months after one of our miscarriages, he actually told one of our mutual friends that he was only going along with my renewed attempts to get pregnant because he knew it wouldn't work anyway. That really hurt...
But now I wonder, did he really mean that when he said it? Or is he just desperate to not get hurt again, to not be disappointed again, to not have another terrible loss eat us both up. When he said that, was he only trying to protect himself? Gahhhh, if he would rather stick a fork in his eye than talk about his feelings, then how am I supposed to know what's going on?
I'm starting to wonder if any man on earth exists who will talk about his feelings openly and honestly. Somewhere? I've met a few...but not a lot. And in the blogosphere, well, there are very few male bloggers who talk about infertility and loss. IRL, not very many ever show up at my support group meetings.
I'm starting to think that there must be some secret group of men out there who talk about their feelings when women are not present....like a club we don't have the password for.
Yesterday we all went out to a family party that was meant as a celebration for my 10 year old niece. There was a bunch of extended family there, and for the first time, the little girl I mentioned waaaay back here.
When I first heard that this very young relative was pregnant unexpectedly, I had wondered out loud to my husband about the possibility of us adopting the baby, simply because knowing her, I knew that this woman would not be a very good mother, and I didn't want CAS to seize the child and take her away from all her blood relatives and give her to strangers to raise or let her bounce around foster care. It wasn't something we had done anything about, and she of course, had no interest in giving up her child. But she also had no interest in being a good mother, she really sincerely thought it would be lots of fun to hang out with a baby, assumed she would gets "lots" of money from it, (yes, a quote). Totally unrealistic...
Well, over a year later, back in the real world, it has been very very hard for her to keep her child. She gets daycare subsidies, but works nights in a bar, so she never sees the little girl. (She refuses to try and get a day job, "too boring.") Her ex-boyfriend keeps trying to get more and more time with the child, and gives her some money, but not much because he has very little money. Two parents (who are more like kids themselves), no high school education, no parenting skills, and no motivation to try. Yes, the child will have food and shelter courtesy of grandparents, and no-one will physically hurt her, but still not exactly a great situation...
Anyway, the baby was there, with her grandmother, and all of us. I kept it together and tried to be nice and polite, baby chit-chat and all. (Honest admission: It is hard for me to see any baby anywhere, not just this one.) The hostess had called me and given me a heads up that they would be there, which I was glad for, since I could stick myself in the right frame of mind ahead of time.
The strange thing was my husband reaction...Mr. Cool and Collected was acting so strange, I couldn't get over it. He was running around COOING after this little baby girl. Trying to get her attention, making goo goo faces. He was positively yearning for her to pay some attention to him, to play with him, to hug him.
He NEVER does this, with any baby except our own boys, and they haven't been babies in ages. It was just so hard to see him, so obviously wanting a child, and knowing that it probably won't happen.
He never talks about our lost daughters, just alludes to "the reason we bought the car," or "what happened before."
For years now, he has acted like he doesn't even want me to try to get pregnant, that he has no interest in having more kids, and that he only goes along with all my obsessions just to keep the peace. (Interspersed of course, with comments that make it clear he wants to have a baby. And of course, we are still having sex, blah blah blah *eyeroll*) A few months after one of our miscarriages, he actually told one of our mutual friends that he was only going along with my renewed attempts to get pregnant because he knew it wouldn't work anyway. That really hurt...
But now I wonder, did he really mean that when he said it? Or is he just desperate to not get hurt again, to not be disappointed again, to not have another terrible loss eat us both up. When he said that, was he only trying to protect himself? Gahhhh, if he would rather stick a fork in his eye than talk about his feelings, then how am I supposed to know what's going on?
I'm starting to wonder if any man on earth exists who will talk about his feelings openly and honestly. Somewhere? I've met a few...but not a lot. And in the blogosphere, well, there are very few male bloggers who talk about infertility and loss. IRL, not very many ever show up at my support group meetings.
I'm starting to think that there must be some secret group of men out there who talk about their feelings when women are not present....like a club we don't have the password for.
Friday, March 02, 2007
The email I want to send my Dr.
Dear J,
I may see you before my follow up appointment, because I’m in agony over my legs still. My x-rays at the ER were clear, but the burning pain radiating out from my knees is getting worse. I think I need a bone scan or a CT to check for hairline fractures. Or maybe I have soft tissue damage in which case something is definitely wrong because this should be getting better, and it really is worse every day. Yes, maybe I’ll come in to see you so you can poke at them too.
But about that nagging thyroid issue….
I saw the new endocrinologist today, and as I told your receptionist, it was a complete waste of my time. And tonight I’ve been angry, in tears, in despair, frustrated, and finally bitter.
She’ll send a report to you, but the quick and dirty sum-up is that she thinks that the RAIU results and scan are irrelevant, since my TSH is normal. She refused to order another RAIU or scan and refused to consider the possibility that amphetamines or dopamine could influence the test result. She then proceeded to parrot precisely everything Dr. Evil wrote in her report to you. This BTW is why I don’t believe that doctors should ever know about the existence of a prior diagnosis when the patient is attempting a second opinion.
So, you know what her theory is? That I have PCOS and/or insulin resistance.
hahahahahahahahahhahahahahaha
Even though I have no cysts, my Day 3 LH has never been higher than my FSH, I have always had normal insulin, blood sugar, testosterone, DHEA, and androgens. And my RE, Dr. Expert has always said that PCOS and POF cannot coexist in me. A physiological impossibility based on my labs and ultrasounds.
After I pointed out my test results to her, she started to climb back down a bit to say that I have some sort of transient hypoglycemia or insulin resistance, caused by the fact that I am eating all wrong. She thinks I eat the right type of food, just not often enough. This is based on the 2 minute description of what I ate YESTERDAY. She thinks I only eat every 6-7 hours, and eat nothing but refined carbs. Except that is NOT what I said. For example, I said that I love eating chocolate. I rarely eat it, but I love it. That doesn’t make me a pre-diabetic, it makes me human. I have had acne and hairy legs, but those are classic symptoms of estrogen/progesterone swings. I said that I do eat snacks, but she ignored it, and focused on the mention that I might’ve had a coffee as a treat as an example of my “bad eating".
I’m ignoring all the condescending brochures & magazine clippings she gave me like this one: “The Diet that could make you a mom!” --- (wow I’m so happy she gave that one to me, since that world famous fertility doctor I go to will be shocked! to hear that this all new! diet! is the cure! for all my dead babies!)
Yes, you can just imagine my reaction to someone telling me that my children would be alive if I hadn’t scarfed down that loaf of Wonder Bread.
Thank God I actually know the cause of my miscarriages. I can only imagine the psychological trauma this dimwit would inflict on some of the grieving mothers I know. I’m also ignoring the *super exclusive* lab requisitions she graciously allowed me to have. You’ve run my blood sugar and creatinine before. Not exactly a shit hot diagnostician is she?
So, in all seriousness, we have to talk about a better plan. Specifically, I need to get the appropriate tests & treatments done for the actual illnesses I DO have. And can I see a Dr. who will diagnose me based on lab results, and not my diet choices for one day, or on the spare magazines clipping lying around her office? I have a couple of requests and some ideas. We can talk about them at my follow up appointment. I don’t think I can bear to talk about this in person right now.
Thanks,
Aurelia
(Pssst: And to you, my lovely blog readers, now I have to go eat some fruity puffs soaked in a bowl of vodka with sugar & insulin on top. I'm trying to zero out my fertility so that if one of those dastardly little spermies ever finds an egg, I can write off the next pregnancy ahead of time without even bothering to POAS. Great plan, huh? *eyeroll*)
I may see you before my follow up appointment, because I’m in agony over my legs still. My x-rays at the ER were clear, but the burning pain radiating out from my knees is getting worse. I think I need a bone scan or a CT to check for hairline fractures. Or maybe I have soft tissue damage in which case something is definitely wrong because this should be getting better, and it really is worse every day. Yes, maybe I’ll come in to see you so you can poke at them too.
But about that nagging thyroid issue….
I saw the new endocrinologist today, and as I told your receptionist, it was a complete waste of my time. And tonight I’ve been angry, in tears, in despair, frustrated, and finally bitter.
She’ll send a report to you, but the quick and dirty sum-up is that she thinks that the RAIU results and scan are irrelevant, since my TSH is normal. She refused to order another RAIU or scan and refused to consider the possibility that amphetamines or dopamine could influence the test result. She then proceeded to parrot precisely everything Dr. Evil wrote in her report to you. This BTW is why I don’t believe that doctors should ever know about the existence of a prior diagnosis when the patient is attempting a second opinion.
So, you know what her theory is? That I have PCOS and/or insulin resistance.
hahahahahahahahahhahahahahaha
Even though I have no cysts, my Day 3 LH has never been higher than my FSH, I have always had normal insulin, blood sugar, testosterone, DHEA, and androgens. And my RE, Dr. Expert has always said that PCOS and POF cannot coexist in me. A physiological impossibility based on my labs and ultrasounds.
After I pointed out my test results to her, she started to climb back down a bit to say that I have some sort of transient hypoglycemia or insulin resistance, caused by the fact that I am eating all wrong. She thinks I eat the right type of food, just not often enough. This is based on the 2 minute description of what I ate YESTERDAY. She thinks I only eat every 6-7 hours, and eat nothing but refined carbs. Except that is NOT what I said. For example, I said that I love eating chocolate. I rarely eat it, but I love it. That doesn’t make me a pre-diabetic, it makes me human. I have had acne and hairy legs, but those are classic symptoms of estrogen/progesterone swings. I said that I do eat snacks, but she ignored it, and focused on the mention that I might’ve had a coffee as a treat as an example of my “bad eating".
I’m ignoring all the condescending brochures & magazine clippings she gave me like this one: “The Diet that could make you a mom!” --- (wow I’m so happy she gave that one to me, since that world famous fertility doctor I go to will be shocked! to hear that this all new! diet! is the cure! for all my dead babies!)
Yes, you can just imagine my reaction to someone telling me that my children would be alive if I hadn’t scarfed down that loaf of Wonder Bread.
Thank God I actually know the cause of my miscarriages. I can only imagine the psychological trauma this dimwit would inflict on some of the grieving mothers I know. I’m also ignoring the *super exclusive* lab requisitions she graciously allowed me to have. You’ve run my blood sugar and creatinine before. Not exactly a shit hot diagnostician is she?
So, in all seriousness, we have to talk about a better plan. Specifically, I need to get the appropriate tests & treatments done for the actual illnesses I DO have. And can I see a Dr. who will diagnose me based on lab results, and not my diet choices for one day, or on the spare magazines clipping lying around her office? I have a couple of requests and some ideas. We can talk about them at my follow up appointment. I don’t think I can bear to talk about this in person right now.
Thanks,
Aurelia
(Pssst: And to you, my lovely blog readers, now I have to go eat some fruity puffs soaked in a bowl of vodka with sugar & insulin on top. I'm trying to zero out my fertility so that if one of those dastardly little spermies ever finds an egg, I can write off the next pregnancy ahead of time without even bothering to POAS. Great plan, huh? *eyeroll*)
Thursday, February 22, 2007
Nervous as all get out
I'm nervous because I am helping someone do some research for an article on infant loss and miscarriage and infertility, and I'm praying it works out. It won't be out for awhile, and I have no idea if I'll even be in it, btw. It may end up it has nothing to do with me, just the issue.
In fact, I'm so nervous, I'm like a cat on a hot tin roof. I'm worried it won't work out well, I'm worried it will work out perfectly, I'm worried I'll look like an idiot, I'm worried I will end up harming an issue so close to my heart.
I'm worried about what will happen next!!!!!!!
The reporter is lovely and kind and smart, the paper is a good one, the cause is noble.
But I'm quivering like a bowl of Jell-o.
Shit.
In fact, I'm so nervous, I'm like a cat on a hot tin roof. I'm worried it won't work out well, I'm worried it will work out perfectly, I'm worried I'll look like an idiot, I'm worried I will end up harming an issue so close to my heart.
I'm worried about what will happen next!!!!!!!
The reporter is lovely and kind and smart, the paper is a good one, the cause is noble.
But I'm quivering like a bowl of Jell-o.
Shit.
Tuesday, February 20, 2007
How Thinking in Reverse Can Help Me Think Straight
Lots of weird thoughts have been swirling around in my head lately. Disjointed bits of things that seem to have no theme.
But there is a theme, sort of. And if I reverse or rephrase the situation it helps me to figure out why I'm uncomfortable. (Again, not saying anyone should feel the way I do, I'm not even sure I KNOW how I feel. I'm still fumbling in the dark on this stuff.) Which makes this a long rambling post...apologies. I'm going to continue and expand on more of the bits in the coming days and weeks, but this is what I've got today.
So a few thoughts for you. There is a lot of stuff in the blogworld, and real life, that pits women against each other. Breastfeeding vs. formula, ART vs. adoption, SAHM vs. WOHM, donor gametes vs. use your own genes, "real infertiles" vs. "only sort of infertiles", physical disabled, vs. mental disabled vs. "normal healthy people." (WTF is a normal healthy person, btw?)
You get the idea....
And all along we get mad at each other, instead of using my favourite political tactic, "Follow the money" or even "Let's fight the real enemy." (Pick any or all here, government, corporations, male run society, medical establishment, religious authorities...) Women do this to each other so much, I swear it boils my blood. I know I personally get triggered, and lose it, and later think, "WTF did I do/say/type this?" And the real jerks get away with it....and laugh their asses off at us. Don't believe me, see this . Should be mandatory viewing IMHO.
So, my first rewording is on Starbucks cup #208. The original text says:
"I wish couples who desperately take every means to conceive a child would realize that adoption is a wonderful alternative. A child who becomes your child through adoption completes a family. Just as when you commit to your spouse or partner there are no biological ties, yet a family was formed. This child enters a family the same way! It is not blood and flesh that form a family, but the heart."
(This reminded me of Pizza Hut and it's stupid campaign, which offended everyone in adoption, and IFers. They were smart enough to take it down pretty quick after some of us blogged about it. If you google it now, you can only see the site by clicking on cache.)
Just to make it really clear that this isn't about adoption or ART, but about why some mega corporation has a lot of nerve trying to tell the IF community and those involved in adoption how to live, a couple we had over for dinner helped me "rewrite" #208 for you.
Bob is a paraplegic, and Janet has female IF, and as a couple, they don't think Starbucks would ever put this on a cup:
"I wish paraplegics who desperately take every means to walk again would realize that wheelchairs are a wonderful alternative. A wheelchair that replaces your legs completes your body. Just as when you get in your car there are no bodily ties, yet a way to get around was formed. This wheelchair entered their lives the same way! It is not blood and flesh that form a body, but the heart."
As Bob said, "Any disease or social situation you insert here would end up offensive sounding, and if they wouldn't dare do it to me as a paraplegic, why should Starbucks do it to you?"
Do any other rewrite, like for breast cancer or gay marriage, or WHATEVER, and you will see why Starbucks was wrong, and we shouldn't be fighting each other, but them.
Another rewrite:
Unhelpful things to say to a woman who has had a miscarriage, or gone through IF:
"You're young, you can have other children"
"It probably would have been abnormal anyway"
"This was for the best"
"You're lucky you are alive"
"At least you didn't get to know it"
"It's over with now you can get on with your life."
"Better luck next time"
"Time heals all wounds"
"Why are you complaining, you have other children/ a good life / a husband / money?"
"Just adopt"
Society has become a little more aware and fewer people say these things anymore, but just 20-30 years ago, infertility was treated as if it was irrelevant, and infant loss never ever spoken of. Miscarriage under 20 weeks is still written off as less of a loss than over 20 weeks. We are now slowly getting some respect, but just barely.
Hmmm, respect, so what if we rewrote this for someone else? No one would say these phrases to a paraplegic or a cancer patient. Try to picture a Doctor saying to a woman with breast cancer, post-mastectomy, "This was for the best." Hmmmm, maybe not?
Can we try rewriting it for adoption now? Please?
"You're young, you can have other children" (To birth mothers)
"It probably wouldn't have had a good life anyway" (To birth mothers)
"This was for the best" (To birth mothers and adoptees)
"You're lucky you are alive" (To adoptees who have the nerve to be pro-choice)
"At least you didn't get to know it" (To birth mothers or adoptees)
"It's over with now you can get on with your life." (To birth mothers or adoptees)
"Better luck next time" (To birth mothers)
"Time heals all wounds" (To birth mothers and adoptees)
"Why are you complaining, you have other children/ a good life / a husband / money?" (To birth mothers and adoptees, throughout their lives)
"You should try IVF. Just do fertility treatment." (To adoptive parents)
Society has only very very recently begun to think about adoptees and donor kids who are not so grateful to have had their entire race, religion, genetic history, health history, culture, language, and geneology erased and rewritten by judges and social workers and Doctors. As an adoptee, I'm often told how I should feel about my childhood and parentage, even though I'm a 38 year old fully competent grown woman. No one would dare tell me how I should feel about any other thing in life. But adoption? Infertility? Miscarriages? Open season people...
What can help me as an adoptee feel respected? Open adoption helps a bit, and not having money involved helps. Open records and reunion helps a bit. Honest communication helps a bit.
But it will never be the same as if I was raised by my genetic parents. And it will never be the same for a birth mom or donor parent who doesn't raise her genetic child. Raising an adopted or donor child will never be exactly the same as if you raised genetically related children.
It will be different, not better or worse, but different. Why is saying that so threatening?
What is this myth that all families have always been exactly the same forever? Why do we pretend this mythical family structure is so perfect or desirable that we have to torture each other and shit on each other's feelings to retain the fantasy?
Minimizing the feelings of another person is never helpful, and never respectful, IMHO. In any situation in life. Whether it is adoption, or infertility, or cancer, or who we love. It can't just be about us, or our desires or fantasies. Truly becoming a full member of society requires us to stretch, and try to respect others' feelings of pain & joy, however incomprehensible they may be.
Corporations like Starbucks, or fertility clinics, or government/private adoption industries have a huge financial stake in making sure we are at each other's throats engaged in the Mommy Wars instead of analyzing their actions and motives. We need to analyze their real agenda, and ask more hard questions of them instead of assuming they are benign entities with our best interests at heart.
To sum up, when in doubt, rewrite the question. Does it work for other situations?
If not, maybe we need to rethink the whole idea. Maybe we need to fight the real power.
But there is a theme, sort of. And if I reverse or rephrase the situation it helps me to figure out why I'm uncomfortable. (Again, not saying anyone should feel the way I do, I'm not even sure I KNOW how I feel. I'm still fumbling in the dark on this stuff.) Which makes this a long rambling post...apologies. I'm going to continue and expand on more of the bits in the coming days and weeks, but this is what I've got today.
So a few thoughts for you. There is a lot of stuff in the blogworld, and real life, that pits women against each other. Breastfeeding vs. formula, ART vs. adoption, SAHM vs. WOHM, donor gametes vs. use your own genes, "real infertiles" vs. "only sort of infertiles", physical disabled, vs. mental disabled vs. "normal healthy people." (WTF is a normal healthy person, btw?)
You get the idea....
And all along we get mad at each other, instead of using my favourite political tactic, "Follow the money" or even "Let's fight the real enemy." (Pick any or all here, government, corporations, male run society, medical establishment, religious authorities...) Women do this to each other so much, I swear it boils my blood. I know I personally get triggered, and lose it, and later think, "WTF did I do/say/type this?" And the real jerks get away with it....and laugh their asses off at us. Don't believe me, see this . Should be mandatory viewing IMHO.
So, my first rewording is on Starbucks cup #208. The original text says:
"I wish couples who desperately take every means to conceive a child would realize that adoption is a wonderful alternative. A child who becomes your child through adoption completes a family. Just as when you commit to your spouse or partner there are no biological ties, yet a family was formed. This child enters a family the same way! It is not blood and flesh that form a family, but the heart."
(This reminded me of Pizza Hut and it's stupid campaign, which offended everyone in adoption, and IFers. They were smart enough to take it down pretty quick after some of us blogged about it. If you google it now, you can only see the site by clicking on cache.)
Just to make it really clear that this isn't about adoption or ART, but about why some mega corporation has a lot of nerve trying to tell the IF community and those involved in adoption how to live, a couple we had over for dinner helped me "rewrite" #208 for you.
Bob is a paraplegic, and Janet has female IF, and as a couple, they don't think Starbucks would ever put this on a cup:
"I wish paraplegics who desperately take every means to walk again would realize that wheelchairs are a wonderful alternative. A wheelchair that replaces your legs completes your body. Just as when you get in your car there are no bodily ties, yet a way to get around was formed. This wheelchair entered their lives the same way! It is not blood and flesh that form a body, but the heart."
As Bob said, "Any disease or social situation you insert here would end up offensive sounding, and if they wouldn't dare do it to me as a paraplegic, why should Starbucks do it to you?"
Do any other rewrite, like for breast cancer or gay marriage, or WHATEVER, and you will see why Starbucks was wrong, and we shouldn't be fighting each other, but them.
Another rewrite:
Unhelpful things to say to a woman who has had a miscarriage, or gone through IF:
"You're young, you can have other children"
"It probably would have been abnormal anyway"
"This was for the best"
"You're lucky you are alive"
"At least you didn't get to know it"
"It's over with now you can get on with your life."
"Better luck next time"
"Time heals all wounds"
"Why are you complaining, you have other children/ a good life / a husband / money?"
"Just adopt"
Society has become a little more aware and fewer people say these things anymore, but just 20-30 years ago, infertility was treated as if it was irrelevant, and infant loss never ever spoken of. Miscarriage under 20 weeks is still written off as less of a loss than over 20 weeks. We are now slowly getting some respect, but just barely.
Hmmm, respect, so what if we rewrote this for someone else? No one would say these phrases to a paraplegic or a cancer patient. Try to picture a Doctor saying to a woman with breast cancer, post-mastectomy, "This was for the best." Hmmmm, maybe not?
Can we try rewriting it for adoption now? Please?
"You're young, you can have other children" (To birth mothers)
"It probably wouldn't have had a good life anyway" (To birth mothers)
"This was for the best" (To birth mothers and adoptees)
"You're lucky you are alive" (To adoptees who have the nerve to be pro-choice)
"At least you didn't get to know it" (To birth mothers or adoptees)
"It's over with now you can get on with your life." (To birth mothers or adoptees)
"Better luck next time" (To birth mothers)
"Time heals all wounds" (To birth mothers and adoptees)
"Why are you complaining, you have other children/ a good life / a husband / money?" (To birth mothers and adoptees, throughout their lives)
"You should try IVF. Just do fertility treatment." (To adoptive parents)
Society has only very very recently begun to think about adoptees and donor kids who are not so grateful to have had their entire race, religion, genetic history, health history, culture, language, and geneology erased and rewritten by judges and social workers and Doctors. As an adoptee, I'm often told how I should feel about my childhood and parentage, even though I'm a 38 year old fully competent grown woman. No one would dare tell me how I should feel about any other thing in life. But adoption? Infertility? Miscarriages? Open season people...
What can help me as an adoptee feel respected? Open adoption helps a bit, and not having money involved helps. Open records and reunion helps a bit. Honest communication helps a bit.
But it will never be the same as if I was raised by my genetic parents. And it will never be the same for a birth mom or donor parent who doesn't raise her genetic child. Raising an adopted or donor child will never be exactly the same as if you raised genetically related children.
It will be different, not better or worse, but different. Why is saying that so threatening?
What is this myth that all families have always been exactly the same forever? Why do we pretend this mythical family structure is so perfect or desirable that we have to torture each other and shit on each other's feelings to retain the fantasy?
Minimizing the feelings of another person is never helpful, and never respectful, IMHO. In any situation in life. Whether it is adoption, or infertility, or cancer, or who we love. It can't just be about us, or our desires or fantasies. Truly becoming a full member of society requires us to stretch, and try to respect others' feelings of pain & joy, however incomprehensible they may be.
Corporations like Starbucks, or fertility clinics, or government/private adoption industries have a huge financial stake in making sure we are at each other's throats engaged in the Mommy Wars instead of analyzing their actions and motives. We need to analyze their real agenda, and ask more hard questions of them instead of assuming they are benign entities with our best interests at heart.
To sum up, when in doubt, rewrite the question. Does it work for other situations?
If not, maybe we need to rethink the whole idea. Maybe we need to fight the real power.
Saturday, February 17, 2007
Please think of Jenny
One of the bloggers I read, has suffered a miscarriage, her name is Jenny, and she has a blog at uterus monologues. This is a very sad moment for her and her husband, and I feel terrible for her. She needs some support from all of us in blogland. Her blog is password protected, but you can still see a front page, and can leave comments on one of the posts.
Or leave them here, and I'll make sure she see them.
This is so unfair...
Or leave them here, and I'll make sure she see them.
This is so unfair...
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