January 22, 2015
Sometimes I really struggle with my infertile identity. Not to mention integrating that identity within the rest of me. (Yes, I have a whole other life, I swear.) You might be surprised to hear that I struggle to find my place because there are so many places I can go since I’ve been around the Infertility Block many times. But here’s why:
In the land of ALL THINGS INFERTILITY (ie. General Infertility, Disease Specific Infertility, Loss of Babies & Organs) I most closely identify with other women who have had ectopic pregnancies. And yet, I often don’t fit well with them for two reasons: 1. I had a rare non-tubal ectopic pregnancy and 2. I identify more closely with abortion than miscarriage in the treatment of my two ectopic pregnancies. The latter is generally not a popular opinion so I’m unable to express it often.
The next group I most closely identify with is the hysterectomy crowd. Again, I don’t fit so well there either. Why not? Because apparently a large part of the hysterectomy experience is grieving the loss of your uterus or wrapping your mind around the fact that it was “ripped out” of you. Well…I do grieve the loss but I lost it long before it was removed. And I happily evicted it because it kept trying to kill me. See also: it wasn’t my first (or 2nd, or 3rd, or…) surgery or even my most emotional one. I’m down so many organs at this point it’s difficult to mourn the physical absence of something that never served me (appendix, fallopian tubes, uterus…). So…strike two.
I’m childless. But I intend to adopt.
I’m not actively pursuing any route to parenthood at this moment.
I’m not…anything. I’m just wandering the cafeteria looking for my peeps. A bunch of them are waving me over but when I go sit with them I often end up feeling even more alone as I realize that my experience was not really their experience. I know everyone’s experience is unique but I still crave the “Me too.” And I’m lucky to have so many people saying, “Come sit by me.”
And yet, sometimes the only place I feel comfortable is alone.
Maybe the real problem is that I refuse to wear pink on Wednesdays. I hate pink.
But also hate being whiny. Conundrum.
January 9, 2015
Never give up.
This is a phrase commonly used when a person is struggling in life or fighting an illness.
Once again, this is a post that came about because of a specific event but is actually a recurring theme in the infertility world. So while the specific event led to me actually writing this post, this post is not solely about that event or an attack on that person who most recently said that phrase. There’s been enough fighting on Twitter about this already I don’t care to encourage more of it. Which is why I thought perhaps more than 140 characters were warranted on the topic. Also, please note that this post has been sitting in drafts for MONTHS. I was only reminded that it was still sitting there because of a recent post on the very same topic.
Never give up.
If you have not attained your goals this phrase is perceived as a rallying cry to spur and cheer you on. It’s meant to help you get to where you want to be. Sometimes that’s a good thing. We all need our own personal cheerleaders sometimes to help us get through trying times.
However, if you have achieved those goals, you often become the one doing the rallying and cheering, “You can do it!”
I believe this all stems from our parents teaching us that anything is possible if you just try hard enough. That hard work is always rewarded. No pain, no gain. Insert more cliches.
But guess what? None of those things is true.
Maybe *you* never gave up and things worked out for you. That’s great. If never give up is your own personal mantra I’m good with that. Keep saying it to yourself as long as it helps you.
But all too often it is the rallying cry said to others. And it’s not fair to tell someone else that s/he should never give up. Because the moral of the story is that the ending is NOT always happy. And that’s OK. That’s life. That’s real.
It’s one thing to be at the finish line telling someone who is winded and whose legs ache to never give up, she can do it, just 100 more feet and she can stop running and finish the 5k. It’s quite another to say that to a person who is asthmatic with bleeding feet and an irregular heartbeat.
But the toll of infertility and specific diagnoses are not tattooed on people’s foreheads. The spread and extent of an individual’s cancer is not usually obvious from the outside. There are countless diseases and struggles in life that are not visible just by looking at a person. So you can’t know who needs to hear never give up and who needs to hear it’s OK to stop.
Just like there are countless cliches like if at first you don’t succeed, try try again there are also quite a few of the beating a dead horse variety.
Add to that the fact that you are sitting on the other side of the finish line – A PLACE OF PRIVILEGE – saying never give up. Even if you only intended that phrase to apply to your own struggle there’s an inherent implication that it applies to everyone with issues similar to yours. You only get to utter that phrase because it worked for you (privilege). It could just as easily have been you on the wrong side of that finish line.
To illustrate my point…if you had survived cancer, would you say never give up to a person who had decided to stop treatments for his cancer? Pops did far more chemo than he should have because of this mantra. He suffered more than he should have because stopping chemo was perceived as giving up and you’re not supposed to ever give up fighting cancer. Right?
Wrong. Each person gets to decide what is right for himself in any given situation. Preferably without all the bullshit cliches compelling him to choose one option over another.
But I digress. The point is this: the phrase never give up comes from a place of privilege. People who take issue with the phrase are just asking you to check your privilege. That’s all. Acknowledge it. Acknowledge that this mantra is not for everyone instead of perpetuating the myth that it’s never OK to stop.
I feel similarly about Hope as I’ve previously written.
January 7, 2015
I’ve been having a rough time of late. I had thought it was just the New Year and its endless onslaught of articles and proclamations about this year will be better and if you just do X, Y & Z – or STOP doing X, Y & Z – then you will be happier.
Well, we’re a week out and I’m thinking it’s more than that.
I’ve been reliving my ectopic #1 hell. More or less in real time (Sep – Feb). September and October weren’t any worse than other years but it kicked into high gear in November.
I believe this is largely for two reasons:
- TimeHop. Yes, I know I should just delete this horrible app that is a constant reminder of the loss and grief I was suffering 4 years ago. At least once a week I get the reminder that I was going for betas All.The.Goddamn.Time. You know why that is? Because at this time 4 years ago I as going for weekly betas. At this time 4 years ago my betas were all <50. And yet I still had to go for them and STILL ended up needing more methotrexate. It was a super dark time and I could barely function. Beta didn’t reach <5 until February. So I’ve got a few more weeks of this. At this point I feel I need to see this through to February. And THEN I will delete or mute TimeHop. But, while TimeHop is a punk ass bitch for reminding me, I don’t really need the reminder to relive it all – it happens all the time, just usually it’s more compacted and less drawn out over time. The fact is I’m just not over it. Or past it. Or even through it. I still feel broken. And occasionally, like now, fragile. That’s pronounced frah-gee-lay by the way. It’s Italian. Look it up.
- The contest I judged. I think this one may be more to blame than TimeHop, honestly. I’m still processing the emotional fallout from it (I haven’t even talked to my therapist about it yet since the drama of Xmas came first and I had to cancel on her just to judge the contest in the first place). When I agreed to judge the Sher I Believe contest I knew that there was going to be someone there making a documentary and I’d need to consent (or not) to being filmed. What I *didn’t* expect was that we’d all go around and tell our respective stories in front of that camera. I seriously doubt I’ll make the cut in the final documentary since the focus of the documentary is the 2013 contest. This is just some follow up footage, the majority of which will probably not be used. I write freely here in this space about my experiences. But you can’t see me while I type. So being filmed was…new/odd/interesting/more difficult/uncomfortable? As I said wrote, I’m still processing all of this so I’m not sure exactly how I feel about it. I just know that there were several elements of judging that contest that were difficult and one of them was telling my story on camera. Although… funny story…while telling my story (I went last) I felt like it was getting too long and I somehow completely skipped over my hysterectomy and endometriosis excision and jumped straight from surrogacy (which I only glossed over) to adoption. …Aaand this is why I need to blog more. Just typing out that sentence made me realize WHY I forgot to mention the surgery. In all candidness, I did truly forget in the moment. But I think it was because the looks on the faces surrounding me were too sad. I think I wanted to spare them all the sad. I have to live it. You don’t. Seeing people react with sadness to my words made me want to stop saying them. I write here to help me process. Not for sympathy or pity. Also, I do not like being the center or focus of attention. I know everyone thinks bloggers are narcissistic assholes but really, I can’t stand it. However, here on this blog, just like you can’t see me writing, or crying as I type, I can’t see your face while you’re reading. If I could…I’d probably just shut up. I mean…why do you think I always insert a joke when things get serious? When I do tell it in person, I usually require that everyone have a drink in hand. Preferably two. And yes, buy me one too, please. Or two. It’s a double fisted drink kind of story. So yeah, telling it, in person, on camera and without drinks…? Well…that’s why I brought chocolate.
So add on top of these two triggers that Xmas was a bit stressful and drama-llama-full, New Years proclamations irk me to no end and our adoption paperwork is STILL on hold and the Fox is just a bit – OK a lot – out of sorts.
December 31, 2014
It’s that time of year again. As in, the end.
I haven’t been a good blogger lately but I always do an end of the year post. Even though I sound like a broken record.
I reread last year’s post and cried at the fact that I pronounced 2013 an OK year because no one had died.
I cannot say that this year. This year I lost a friend to that fuckwipe Cancer. Fuckwipe Cancer is a distant cousin to that Bitch Hope and far, far worse than Hope could ever be.
This was also the year of #KitKaper. Or rather the year of The Caper That Wasn’t. Sadly this year, like all the ones before it, ends with no kit in my house.
This was the year that I live tweeted my road trip with my embryos for #KitKaper. And while the story would have been a millionbillionty times better if one or both of them became a baby, I do not regret the trip. Or the tweets.
What’s more, Alethea loved that I did it.
(Alethea is my friend who died this year)
So… I had a failed surrogacy, a surprise adoption that was not to be and a friend died.
Not a good year.
Not that nothing good happened this year.
Even though our surrogacy didn’t work out, B and I are still pretty tight. Worries about how it might change our friendship have not been an issue. She is more determined than ever to help me. She has baby stuff and clothes saved for me.
When Alethea first became sick back in April a small group of us began a chat session to talk about ways to help Alethea. That chat session is STILL GOING. It is the fucking Energizer Bunny of chat sessions. And all our friendships have been strengthened by it.
I participated in Sher’s I Believe contest as a judge. Now this one is a doubled edged sword. It’s both good and bad. It’s good because I was a part of something that helped others.
It’s bad because it was a difficult thing for me to do and it left me in a bit of a fragile emotional state. A state I have not yet climbed out of.
There’s been a lot of positive learning and growth over the year(s).
But I still can’t call 2014 a good year.
I consider myself a realist. And I think that’s a pretty accurate statement given that most pessimists think I’m an optimist and most optimists find me too pessimistic. ;-)
But I’m considering changning that up a bit with regards to how I face 2015. Over the past five years I’ve progressively held less and less hope and set fewer and fewer expectations for the New Year. In fact, last year, I pronounced I would set none.
So I will follow suit this year but this time…I think I will just expect the worst. I will become a pessimist and just assume everything will be shit.
Consider yourself warned.
That’s just my way of trying to trick the Universe into making it a good year. Or at least a good year compared to my expectations of tragedy.
Hopefully I did not just hear the Universe say, “Challenge…ACCEPTED!”
Does the Universe look like NPH? I think not.
December 13, 2014
I haven’t been very vocal about this on social media. At first, I wasn’t sure if I should be. I mean…if I announce publicly that I’m a judge in a contest then the contestants are free to find me. And potentially attempt to curry favor with me.
That didn’t happen. Despite Sher Institutes publicly posting bios of the judges. But I should back up.
Jay – you all know Jay, right? If you don’t, you should. Head over to http://the2weekwait.blogspot.com/ and get to know her cuz she’s awesome. Jay pimped me out to Sher Institutes. Sher was looking for judges for their I Believe contest which awards two lucky couples (or a single, the contest does not require that you be coupled) a free IVF cycle and Jay thought I’d be a good fit.
In all honesty, I’m a bit wary of these types of things. The lottery, even with the abysmal odds, seems reasonable to me. It’s about as random as it can get. You don’t really expect to win and your life will not be any worse for losing. No ones judges your character – either your numbers hit or they don’t. End of story. But contests that pit sad stories against sad stories…well, that’s more subjective and more emotional for all involved. Who’s to say this situation is more deserving than that one? Especially when they ALL are deserving. Will the non-winners (I hate to call them “losers” in this case) somehow feel less worthy? Infertility already makes most of us feel somehow “less than.” We can’t do something that drunken teenagers do by accident. We can eat healthily and do everything our doctors recommend and still that meth addicted homeless woman gets pregnant but we don’t. I have nothing against drunken teenagers and meth addicted homeless women – they are worthy and deserving of help too. But others’ ability to get pregnant simply by looking at a man can certainly makes me feel a bit “less” sometimes.
If only insurance would cover this medical condition…but that’s a topic for another post. The point is this: most people don’t have insurance coverage for IVF. And most people can’t afford to go through multiple IVFs. And a lot of people can’t afford even one IVF. And Sher is giving them away. And they were going to do that with or without me. So I decided I’d rather be a part of it than not.
But how do you judge? How do you decide who should win? Here are some of the thoughts that ran through my head before I went to Vegas about how to pick a winner. Should I pick…
- Saddest infertility story?
- Generally this means who has suffered the most/’worst’ losses
- And how do you compare losses? Oy. That’s its own rabbit hole with no end.
- Generally this means who has suffered the most/’worst’ losses
- Saddest overall story?
- Many people had cancer, death in the family, serious accidents, etc
- Most financial need?
- We didn’t get financial info so this was largely a guessing game
- Those who require donor sperm/egg or surrogate?
- The contest only covers the cost of the IVF procedures, donor costs would not be covered.
- Never tried IVF before?
- Should you give it to the people who’ve never had the chance?
- Got pregnant with IVF before?
- Maybe now they have some additional info to ensure a better outcome?
- Those who are youngest and/or most likely to succeed?
- Those who are older?
- This may be their last chance
- Has a condition similar to my own or whose story somehow resonates with me?
My head was spinning. I was Alice down the rabbit hole trying to read the matrix code.
Fortunately I didn’t have to make this decision by myself. And I wasn’t the only one in the room who had all of the above thoughts running through my head. Pretty much everything that went through my brain prior to meeting the other judges had gone through their brains as well. And none of us had a good answer.
Because there isn’t one.
But FOUR couples are getting a free round of IVF.
And THAT I can feel good about.
November 30, 2014
Let’s see….my last post was titled October so I thought perhaps I should get at least ONE post in this month. Just under the wire, too.
Yes, I’m alive.
No, there’s nothing new to report on the adoption front.
Do I have writer’s block? I’m not sure. I think it’s really just apathy. I still have several half written posts with no real desire to finish them.
What have I been doing? Working. Reading. Cooking. Sitting on my ass binging on Netflix. And wondering whether the correct spelling is binging or bingeing. For the love of Kermit, someone, please set me straight on that one. I can’t watch Netflix again until I know the correct spelling.
So yeah, the mood here is… Go Apathy?
October 7, 2014
Honestly, this year I really wanted to sit around and watch horror movies and ignore October as the Pregnancy & Infant Loss Awareness month (day?). But the movement seems to have grown. Or I’ve just managed to find more members of my tribe. And so it’s become even harder to ignore.
But there’s this familiar feeling of not belonging that comes with October and miscarriage, stillbirth and infant loss awareness. I know people consider ectopic pregnancy as part of this remembrance – even if it’s not specifically listed – but I still feel different. I’ve never had a miscarriage so I can’t truly compare the two experiences. But those who have experienced both tell me that their ectopic experience was, in fact, different.
I recently had to talk a friend through an ectopic scare. Her situation pretty much screamed ectopic but turned out to be a miscarriage. Her second. But the days and weeks she spent not knowing whether the life inside her was trying to kill her…it seemed to change her. She experienced a much more complex spectrum of emotions. Which makes me feel a bit vindicated in thinking that they are, in fact, different experiences. I won’t try to argue that one is worse than the other – a loss is a loss is a loss – but I will argue that the complexity of emotions that come with an ectopic pregnancy are inherently different. And, well…more complex.
In addition to feeling like more people are sharing their stories this year, I also feel like they are sharing more blog posts and articles about the topic. Some of them are How To Support Your Friend Through A Miscarriage/Stillbrith/Infant Loss. Most of them talk about how important it is to name your lost ‘children.’
Yes, I put ‘children’ in quotes. That’s my way of distancing myself from my losses because they were so early. I did not lose children. I lost embryos/fetuses. It’s a distinction that I make because it helps me. What you do for your own situation is fine with me. But this post is (mostly) about my losses and in general I’m writing about early miscarriages and ectopic pregnancies, not stillbirth or infant loss. So, no, I don’t think there’s anything wrong with people naming their lost ‘children.’ Regardless of how early the loss was.
But I won’t – I can’t – name mine.
First, I have no idea what gender my three were. Sure I could assign gender neutral names or just pick arbitrarily. But I prefer not to.
Second, not only do I have no idea of gender I also never met my little ones. I never saw a heartbeat. I never saw a blob on an ultrasound that looked like an alien. OK, so there was a blurry blob of some kind with my second ectopic but it didn’t look like anything and the docs could barely tell it was there. The docs only thought it was my pregnancy because they didn’t see it elsewhere. Ectopics don’t typically show that well on imaging. My little ones never had proper room to grow. They didn’t develop normally. There was nothing to see even if the ultrasound could find them. It’s doubtful that any of them developed a heart to beat.
Third, despite never being technically alive (by definition of a heart beating), THEY STILL TRIED TO KILL ME.
And now we arrive at the crux of the complexity. This life, that may or not be actual life as defined by heartbeat, but most certainly is a blob of cells that are dividing and growing, became a danger to my own. This life, this life inside me that I desperately wanted, would have killed me without medical intervention.
And just for shits and giggles, let’s pare this down to just my first ectopic pregnancy. The one where I had to REPEATEDLY try to kill the two…life forces(?) growing inside me that did not want to go quietly. Five months. I battled them for 5 months. Every single shot of methotrexate I received felt like an abortion. Like I was killing them all over again (and I basically was). But they didn’t want to die. I loved them. But had to repeatedly kill them. Even if you weren’t the horror movie buff that I am I think you can easily see the comparison. If not, let me just spell it out for you:
You repeatedly shoot your kid-turned-zombie until you finally realize that a head shot is what it takes. Or maybe you’re just a really bad shot. Or too grief stricken to aim properly. Except you don’t actually have any memories of your kid from before she was a zombie. THAT.
So, no, I don’t want to name them.
I respect your decision if you choose to. But I just…can’t.
It’s so much easier to kill someone or something when they don’t have a name.
So while it absolutely is a loss…it is also something else. And that…something else is simply not capturer on October 15th. At least, not for me.