My faith in the world and the blogging community has been restored. I think I need more than a paragraph to collect my thoughts into words and since an unbaked challah is still calling to me from the kitchen (“Melissa? Have you forgotten about me? I’m ready. I am doughy goodness that you are counting on for later SO WILL YOU GET OFF THE DAMN COMPUTER?) and I wanted to point out just a few of the other thought-provoking things I read this week, I will leave my thoughts for later in the weekend. Thank you, Murray, for throwing this out there as well as When Eggs Go Bad and Thalia.

In addition, thank you to all who stuck through my extremely long story this weekend and offered advice along the way. I will, of course, keep y’all updated just in case someone else decides to pursue this route. My hope is that the Thursday appointment yields a referral to the specialist my friend, Lisa, recommended. And that he finds literally nothing wrong. So that all of this worrying and navel gazing and agonizing will have been for nothing. Because that’s just the way infertility goes. Just when you think you’ve got your body pegged, she gives you the old one two (is that a punching reference? I’m not sure. I hope so–shazaaaaam!).

And now onto the bloggy bloggy bloggies.

This was written last week on Friday and I debated whether to republish my entry and include this one since I read it after I posted. Instead, I give it to you now. And it contains stories of parenting post infertility, so stop reading now if you’re not up to hearing this. I didn’t want to write (children mentioned) at the top of this entire post because…well…this is the only mentioning of its kind in a small sea of other infertility blog posts today. But it does go on for the next five looooooooong paragraphs.

I have tried to write this idea down a few times now, deleting each time. And since I am probably going to put my foot in it anyway no matter what I do, I might as well just write this disclaimer at the top and then jump into making an ass of myself. Disclaimer: I am not saying this to bring more guilt onto Persephone or anyone else–who am I to tell you what is right to do? But I’ve done this and…that inward anger is more painful than anything anyone else throws at me. And this is more to say you’re not alone, everyone does it (though you know that from the other links inside your post), and we need to take a stand (against ourselves) and stop.

Long explanation, very interesting blog. First Fruits is what happened after The Barren Season. Persephone finally had twins after IVF. This week, she had a post where she gave herself the kind of beating only a woman mothering after infertility can give. And I wanted to talk about this phenomenon because (1) I did/do this so much and (2) it’s dangerous. She writes: “Actually, it never occurred to me to hold both my babies at once. I didn’t know how to hold both my babies at once. I didn’t know how to comfort both my babies at once. I didn’t know how to be a mother — the kind of mother I wanted to be — to both my babies at once.” She goes on to talk about IVF guilt and points towards I’m Waiting’s post about it as well. This is the guilt she means: you have the exact same thoughts every new mother has (that this is the babysitting job from HELL and when are the real parents getting home and this. is. so. hard.) but instead of rolling with them and feeling sorry for yourself and complaining to your friends, you keep it all inside and beat yourself up for feeling like this. You’re angry at yourself for not being grateful for every second with your new child. You’re angry at yourself for dreaming about leaving the child in her crib and walking over to Starbucks for a three. minute. break. You know that there are 7.4 million people just like you who are currently still waiting and you’re angry at yourself for not appreciating what you have. Are you seeing the theme here–inward anger. They should set up tattoo booths at fertility clinics so we can all just get it over with and stencil “I AM SO FREAKIN’ ANGRY WITH MYSELF” on ourselves. The other side of her post is tied to the fact that she has twins–and believe me, those thoughts hit very close to home as well–but it’s that first part, the guilt, that I wish everyone knew was normal. I mean the wishing for your old life back. Just for a few minutes. For a small break where you can just be yourself and get some rest and think. Because you know you used to be able to problem-solve, but you’re just confounded in this moment.

One of the best things a fellow stirrup queen did for me was to call me a few weeks into being at home and say, “so how much do you hate it?” And I didn’t hate it at all. But she gave me the space to just open myself up for a second and cry to someone who got why I wasn’t saying this to everyone else. I loved my babies (and I still do) and I worked hard to get them and I was so glad that they were finally home after three weeks in the NICU. But those new motherhood emotions are going to creep in–I promise you, I was just speaking to my cousin today and she was saying aloud what I kept inside all of those months–and stirrup queens need to know that it’s okay to vocalize them. And not feel guilty.

No matter what I say, I know that you will feel guilty because we all do. And you’ll keep it inside and hate yourself for not being 100% ecstatic 24/7 now that you have the child you worked so hard to create or adopt. But maybe this post will be in the back of your head and you’ll remember it and you’ll call a fellow stirrup queen and whisper about this. It’s okay if you don’t want to shout it to everyone in your family for fear of receiving the most annoying lecture of all time: “but you WANTED children. You worked so hard to have this child. If you didn’t want to be a MOTHER why did you put yourself through it?” But share it with another stirrup queen. Because it will make you a better mother to get out some of those emotions rather than turn them inward into one more reason you’re pissed at yourself.

And I hope, I hope, I hope, Persephone, that you will not be angry at me for being one more person telling you what to do when there is probably a long line of people yelling at you at this moment (two small people come to mind). I am merely saying…in not the most eloquent way…that’s it’s okay to feel this way and have a good cry.

Next blog! I wanted to stick that in bright orange just in case you skipped over my post about First Fruits. Please do go back to it when you’re in the right mood because it was my public service annoucement/soapbox for everyone who will ever experience parenting after infertility.

Sparkle at IF and the City has been teasing us for a while about something in the works. We still need to wait another week and a half, but to tide over readers, she told a story about seeing a psychic years ago. And you can almost picture her cringing her way into the room with her palm tentatively outstretched as she waits to hear her verdict. The psychic told her that she wasn’t sure if Sparkle would have children (gee, “wasn’t sure”–psychic, you’re being paid a lot of money. Do you think you could be more definitive?). Of course, this is currently in the back of her head four years into her IF journey. I’m actually curious how many of us have a story like this. I went to a psychic many years ago and so far all of her predictions have come true. Except one. The one about children. Unless. Gulp. She’s right and I’m wrong and I am about to spend a lot of money for nada.

A Dad Somed
ay had a well-written post comparing his new business to a baby. It needs constant attention and keeps him up all night. It took them a long time to name it. He has to speak to specialists for its “health and welfare.” And it’s so true. It’s just so true. Wishing him a lot of luck on this endeavour. Hope it grows and matures (and never turns around during the middle school years to say, “I don’t care what you went through to have me. I hate you I hate you I hate you.” Aaah…adolescence.). I’m just wishing you a lot of good luck and happiness.

For anyone who has experienced infertility or who is currently experiencing infertility. For anyone who has suffered through pregnancy loss. For those who have conceived naturally, utilized treatments, adopted, used third-party reproduction, or chose to live child-free: a movement.

It all began when Paz lamented that there should be a secret handshake for those who have experienced or are currently experiencing infertility. She was finally pregnant after multiple miscarriages and she wanted infertile women to know when looking at her pregnant belly that she was one of them still–in heart and mind. She was open to questions and to passing along any information she had obtained along the way.

This led to a lengthy discussion about a signal we could give one another as well as a tangible object that would invite questions and subsequently discussion about infertility. The conversation jumped from idea to idea–a pomegranate-shaped charm, a Livestrong-esque bracelet–until it finally settled on a simple thread.

With the idea being that it was an item that was easy to obtain no matter where you lived. It posed a minimal cost. It could be ornamented or braided any way the wearer chose. It could be sent through the mail. It was simple. It was discreet. We picked the embroidery floss #814 because it was the colour of pomegranates. Which was one of the fertility symbols considered along the way.

Royalyne stepped forward and got the ball rolling with a write up that we tweaked until it became this statement:

Pomegranates, a longstanding symbol of fertility, serve as a strong analogy to those suffering through infertility. Though each pomegranate skin is unique in colour and texture, the seeds inside are remarkably similar from fruit to fruit. Though our diagnosis is unique—endometriosis, low sperm count, luteal phase defect, or causes unknown—the emotions, those seeds on the inside, are the same from person to person. Infertility creates frustration, anger, depression, guilt, and loneliness. Compounding these emotions is the shame that drives people suffering from infertility to retreat into silence.

In addition, the seeds represent the multitude of ways one can build their family: natural conception, treatments, adoption, third-party reproduction, or even choosing to live child-free.

The pomegranate thread holds a two-fold purpose: to identify and create community between those experiencing infertility as well as create a starting point for a conversation. Women pregnant through A.R.T., families created through adoption, or couples trying to conceive during infertility can wear the thread, identifying themselves to others in this silent community. At the same time, the string serves as a gateway to conversations about infertility when people inquire about its purpose. These conversations are imperative if we are ever to remove the social stigma attached to infertility.Tie on the thread because you’re not alone. Wear to make aware.

Join us in starting this conversation about infertility by purchasing this pomegranate-coloured thread (#814 by DMC) at any craft, knitting, or variety store such as Walmart or Target. Tie it on your right wrist. Notice it on others.

Paz also created a write up that people could place on blogs, bulletin boards, and email forwards:

For anyone who has ever had a miscarriage, struggled with pregnancy, and all things infertile…there is a movement upon us that you might want to join. It’s rather simple actually: a discreet ribbon on your right wrist to signal to others that they are not alone in their struggles.

As someone who has had 5 m/c but am currently 5 months pregnant (YEAH), I wonder who looks at my big belly with sadness because they are in the month-to-month struggle. I mentioned to a friend that I wished there was some secret nod or international sign as if to say, this belly was hardwon. Well, she posted this quandary on her blog (http://www.stirrup-queens.blogspot.com/) and the response has been quite overwhelming…and a movement has been born!

The pomegranate-colored thread holds a two-fold purpose: to identify and create community between those experiencing infertility as well as create a starting point for a conversation. Women pregnant through any means, natural or A.R.T., families created through adoption or surrogacy, or couples trying to conceive during infertility or secondary infertility can wear the thread, identifying themselves to others in this silent community. At the same time, the string serves as a gateway to conversations about infertility when people inquire about its purpose. These conversations are imperative if we are ever to remove the social stigma attached to infertility.Tie on the thread because you’re not alone. Wear to make aware. Join us in starting this conversation about infertility by purchasingthis pomegranate-coloured thread (#814 by DMC) at any craft, knitting, or variety store such as Walmart or Target. Tie it on your right wrist. Notice it on others. Just thought I would pass the word along!

Lastly, we have a graphic people can add to their side bars in order to get the word out (and create a link to this post or a similar one so people understand what Infertility’s Common Thread is about). Feel free to take and place on your blog or create your own in order to get the word out to others:

http://photos1.blogger.com/blogger/4171/3241/200/Thread.2.jpg

and please add a link back to this post: http://stirrup-queens.blogspot.com/2006/09/history-of-infertilitys-common-thread.html.

Read more about the brainstorming that went on to create Infertility’s Common Thread and the many people who brought it to fruition through comments, discussion, and write-ups:
The Secret Handshake
Raise Your Right Hand
Operation Pomegranate
Common Thread Project

This afternoon, Murray sent me a link to a post in When Eggs Go Bad about how she had turned off the comments section on her blog. She wrote: “When I found myself worrying at 2.30 this morning about the dearth of comments, and feeling angry and hurt that the only time I get a lot of them is when my heart has been ripped out by a miscarriage, I knew I had fallen into the trap of letting this blog be for other people instead of for me.” She was frustrated by what she deemed the popularity contest taking place within blogging.

My initial thought was that she was commenting on the idea of a blogging heirarchy. There are certainly “celebrity” bloggers–even within the IF world. Which is…frankly…great. Because I like the idea that we’re tuned into other people’s lives outside our own. And I’ve learned many things from reading blogs–things I was able to apply to my own life (reproductive immunology a case in point). And frankly, the celebrity bloggers have not only been at this for a long time, building up a fan base, but they’re also damn good writers.

Then I stepped away from the computer for a few hours, but I kept thinking about this post. And a terrible thought hit me. About the fact that people pop out of the woodwork when there is a miscarriage in order to comfort. And is the comforting entirely empathetic or is it like looking at the charred remains of another person on the ground and thinking, “this time, the lightning hit her, therefore it can’t be hitting me.”

Please hit me for thinking this way.

Please tell me that this commenting phenomenon is not a case of shaudenfraude.

Please.

I haven’t experienced this phenomenon yet (having not had the ups and downs during the course of my blog–seeing that it is only three months old), so it was really off my radar EXCEPT that Thalia mentioned something like this in a post about why infertile bloggers stop writing once they become pregnant. She wrote: “The demotivation of losing your audience is hard, too. I know that my audience has gone from about 800 a day when I was about to miscarry, to more like 350 a day now – just above where I was before this last cycle.” Which also touches upon When Eggs Goes Bad’s other point–that people are around when all is terrible, but they scatter once the person becomes pregnant.

When I returned to the computer, Murray wrote this in the comments section: “It’s not the popularity thing that bothers me (though I do think that’s super weird – do you blog for comments or to work out your problems in a written way?). It’s more the support being there for her when she was hurting and now not so much. I understand it of course. If you’re doing well then presumable you don’t need the support as much. But what it probably feels like is kind of being abandoned now that she’s pregnant… I don’t know. It’s all just so complicated sometimes.”

It is complicated. Do you stop reading someone once they become pregnant? Do you think you’re more inclined to comment if someone is discussing something upsetting like a pregnancy loss or a failed cycle? And please tell me that my dark thoughts are entirely wrong and that when you’re comforting a fellow stirrup queen, it is entirely out of trying to remove some of their pain in order to lighten their load rather than penance as you wipe your own brow for having the loss happen to someone else that day other than you. Please please please tell me I’m wrong. What drives you to comment on the loss and withhold on the happy pregnancy updates? A lack of words beyond a head nod? Frustration that your neighbour in the Land of If is currently packing up to move to the mainland?

Like Murray said, it’s complicated.

Rainy day. Poopie mood.

In writing about my three past OBs and reading about reproductive immunology and speaking with Lisa (who is Lisa? Wait? Has she mentioned Lisa before?), I’ve sort of answered my own question by now. With the only problem being that the answer is “get the testing done” which leads to two questions–by whom and with what money?

Oh…wait…the question.

After the twins were born, the OB who delivered them (who was the doctor on-duty that night at the hospital) sat down in my room and said she wanted to talk to me. It’s never a good sign, by the way, when a doctor sits down. The babies were IUGR (intrauterine growth restriction) which means that they stopped growing in utero. They discovered this at 34 weeks and they were delivered that day. What could have been a huge problem leading to stillbirth was averted due to careful monitoring. Let’s at least thank OB #3 for following the guidelines for monitoring twin births. I’ve heard stories of OBs who don’t.

IUGR is sometimes caused by a clotting disorder (thrombophilia). Thrombophilia can also impede fertility and cause miscarriages. I had told this doctor about my fertility history while in labour, and putting all clues together (problems with implantation, IUGR babies), she told me that thrombophilia was a possibility. She said I should be tested for this because it’s important information to know not only if I want to get pregnant again. Thrombophilia can lead to other health problems later in life. So there you have it–go have fun with your new kids and try not to think about it!

When I went to the new OB, he laughed at me when I said that I wanted to be tested for a clotting disorder. He told me that reproductive immunology wasn’t real science and that I didn’t have a problem. Really? You can diagnose that with just your eyes? Amazing. But I’d still rather have a blood test.

Paz, who I’ve mentioned before (the chickie who kicked off Common Thread) was the first person I knew who benefitted from reproductive immunology and I started poking around to see if some of these things could apply to me. Then Lisa (oh…here’s where she’s mentioning Lisa) sent me this email:

My RE tested me after our second failed cycle and found elevated levels of IGM which may or may not mean a potential problem. He put me on Lovenox and baby aspirin for the remaining three cycles (which obviously did not help) but then my RE at Cornell told me he didn’t believe in the whole immunology thing and wouldn’t prescribe Lovenox. When I went to my OB once I was pregnant, he saw the previous test results and asked why I wasn’t on Lovenox. He sent me to a hematologist who put me back on it, but by then I was 12 weeks pregnant. I learned first hand how controversial the whole issue can be in the medical community. One thing I learned through this whole process: medicine is an art, not a science.

Lisa has pretty much the most rockin’ Secret Hope Story ever. She was over this week and we were talking about the controversy surrounding reproductive immunology. I had no idea that this division existed in the medical world, and the varying reactions made sense. The doctor who took it very seriously and urged me to get tested. The doctor who laughed it all off. And the ones in between who shrugged their shoulders and said, “maybe.”

And the patient in the middle who is circling the drain of what ifs. Who is admittedly a bit of a freak about worrying about the future. Early on in the relationship, I took Josh on an 18-mile canoe ride. Trapped in a boat on still water, he paddled hard to get back to the car and away from my incessant what ifs that I was using to see if he was husband material. Could he handle what ifs day in and day out? How well did he thrive when peppered with what ifs that involved nazis taking over America and forcing him to choose between me and every other loved one in his life?

That established, what if there is something to reproductive immunology and a simple blood test holds the key to whether I try for a few months or a few years to conceive again? What if taking heparin and some aspirin can keep another child from being IUGR (and two pounds at birth)? What if this knowledge can keep me from other medical problems such as a blood clot later in life? The answer is simple: take the blood test.

BUT.

Do I go to the OB who has already laughed me off and ask him to order it? Would he be aggressive and order the right lab work when he seems to have little respect for reproductive immunology? Do I make an appointment with my RE and jump back to his office even though I’m not completely ready to be back at the RE and I have no idea where he stands with this? Do I skip all known doctors and go straight to a hematologist? Two options not on the table–going to the doctor who suggested this in the first place since she no longer works at the hospital OR switching OBs.

I know most of you are screaming, “run don’t walk” when I tell you my OB laughed at me. Didn’t I learn anything from my three previous OBs? I promise you that I did. I stay with my OB for two reasons: (1) the RE recommended him because he refers out quickly to the clinic. He takes fertility issues seriously and when I met with him, he recommended only trying for three times on my own before returning to the clinic. (2) When you start throwing out OBs over every snicker, you’re going to be left with your vagina hanging in the wind because OBs altogether are a very smug group of know-it-alls. It could be the “playing G-d” status they have of bringing life into the world. But he took my other concerns seriously and spent over an hour speaking with me at my first appointment and pap smear. Can I blame him if he is siding with the anticontroversy on a controversial topic? And to be frank, I’m just tired. My standards have become too high for an OB. I want them to gallop up to my doorstep on a white horse and examine my hoo-haa while I remain in bed, watching the Food Network. And…well…the short of it is that I am sticking with this OB for the time being.

The next BUT.

If insurance is not going to pay for this, do I push for the tests? I know the knee-jerk answer is “yes.” But at the end of the day, I’m not a doctor with a plethora of additional information about hormones and blood disorders at my fingertips. I earned my honourary medical degree from the stirrups, which is obviously different from taking actual medical tests. Tests shmests. That said, if a doctor says it’s not necessary, do I push forward and say, “it is!” without proof of negligence over my health care?

Because at the end of the day, we’re passing the financial corner of the Bermuda Triangle of Infertility and the triangle is threatening to swallow us alive if we test these waters. We just don’t have the money. So I am also looking for advice from people who have had this type of blood work completed and had insurance cover it.

Which sucks. Bigtime. To make medical decisions based on money. I know all people who aren’t independently wealthy consider the financial aspects when making medical decisions. But…well…I just want it to be different.

As I said, writing about it this much has made me figure out my next step somewhat. At least for the time being unless you have advice–by all means, pass it my way. And by figure out the next step, it is the idea my husband came up with last night. Go to my GP. Someone neutral who probably knows little about reproductive immunology. Who will refer me to a hematologist. So it
looks better for insurance reasons. So the person doing the diagnosing is actually a doctor rather than one who plays one on the computer. Appointment is next Thursday. Come with me as we delve deep into the immunology controversy. Which makes this sound a bit less like a soap opera and a bit more like one of those sensational news shows. But whatever. I mean, it’s not like it’s a big deal. It’s JUST MY HEALTH!

Grrrr…

I didn’t have something happening twice today. Or in this post. But since there were three posts today and since I wanted to post one video, I felt like I had to have two of something as well.

Thank you to my brother for introducing me to this video. It’s what I watch when I’m trying to figure out the best way to kick apart someone after they ask me why I did fertility treatments since they’re so dangerous.

Creased Comics’ George Washington should not…by the way…be watched while at work. Those offended by foul language, cannibalism, hands burned by acid, willful neglect of British children, or cartoon testicles probably shouldn’t click on this link.

But it brings me so much happiness.