NIAW

NIAW Wrap Up

I thought I’d share with you all the posts and links I’ve been sharing all week on Facebook.

Sunday April 20
Today marks the start of National Infertility Awareness Week (NIAW). Infertility affects approximately 7.3 million people in the US alone. I am one of them. I’ll be sharing a little of my story throughout the week along with some outside resources. But it’s Easter so I thought I’d start with cats. Because cats.
http://www.buzzfeed.com/flopsie/infertility-explained-by-33-impossibly-adorable-ca-n33f

Monday April 21
Today for National Infertility Awareness Week I’m sharing some great info on infertility etiquette. I’ve heard many of the don’ts, usually from very well-meaning people. I’ve also seen at least a dozen other versions of this list by bloggers. This is a great resource to learn how best to support those with infertility.
http://www.resolve.org/support-and-services/for-family–friends/infertility-etiquette.html

Tuesday April 22
Today’s #NIAW post is brought to you by acronyms. Much like the military, the infertility (IF) community loves acronyms. Not everyone gets a diagnosis when they get tested for infertility, many people have “unexplained infertility.” I am one of the lucky ones who at least has a diagnosis: Polycystic Ovary Syndrome or PCOS. PCOS affects different women different ways. For me it means my hormones are wonky and I don’t always ovulate, which obviously impacts fertility. It also means that common tools like ovulation predictor tests (OPKs) don’t necessarily work for me because I have a high baseline level of the hormone (LH) they test for. And PCOS is also linked to insulin resistance and because my father is diabetic I am hyper-aware of this added risk factor to me developing type 2 diabetes. I am also lucky that so far I have not had the issue with weight that many women with PCOS struggle with, although my BMI puts me in the overweight category my doctors don’t consider my weight unhealthy at this point.
http://www.resolve.org/diagnosis-management/infertility-diagnosis/polycystic-ovarian-syndrome.html

Wednesday April 23
Today is hump day so I thought I’d give you a link for #NIAW from a comedy website before shit gets real tomorrow. But I also wanted to talk about taboo and stigma. It’s really significant that sites that Cracked and Buzzfeed are posting about infertility in recent months, because it is a topic that is so often not talked about. I decided to come out about my infertility on Facebook this week because I think we need to break the stigma. We need to be able to have the hard conversations about it. We’ve been trying to conceive for two and a half years and while I’ve spoken with several people one on one I haven’t felt comfortable going public. I am ashamed that my body doesn’t work the way it’s “supposed to.” But like my battles with depression the more I talk about it the more I know I’m not alone and the less shame I feel.
http://www.cracked.com/blog/5-surprisingly-outdated-problems-infertile-couples-face/

Thursday April 24
Let me first get this out there, this post is going to be about loss, so if that’s a trigger for you please go ahead and skip it. I’ve known for a while that it would be important for me to talk about loss during my #NIAW posts. There are a lot of different experiences when it comes to pregnancy loss and infertility. For some couples they have no problem getting pregnant but have been unable to carry to term. For others they go through expensive, invasive treatments, get pregnant, and then suffer a loss. (And some never see a positive pregnancy test and deal with a different grief.) There is no hierarchy of infertility pain. It’s all painful. What some of you know but most of you don’t is that last summer we had a pregnancy loss. The pregnancy was ectopic (tubal) and not viable but I had to take chemotherapy drugs to “resolve” it because of the risk of my tube rupturing. It took about seven weeks to fully resolve. It was, without question, the hardest thing I’ve been through in my life. And feeling like I had to hide it from most people made it even harder. It’s still really difficult to talk about and there is still a lot of grief and guilt and plenty of triggers abound. The link I’m sharing today is the blog of my friend Sarah. Sarah has been through recurrent miscarriage due to genetic abnormalities. She shared this post a couple of weeks ago and I felt like it was a list I almost could have written myself. When I was dealing with the loss, the people who did know wanted to help and I had no idea what to ask for. Now I have this and hopefully I never need it again. But it’s a resource in case any of us know someone going through the pain of pregnancy loss, regardless of their fertility status.
http://one-daybaby.blogspot.com/2014/04/so-do-i-say-sorry-first.html

Friday April 25
Today for #NIAW I’m going to talk about another uncomfortable infertility topic: money. Fertility treatment is expensive. Few insurance plans cover it and when they do they often don’t cover much. We have been lucky. Tricare has covered all the testing and treatment that we have needed up to this point. But they don’t cover everything and we are getting close to the place of having to pay for treatment out of pocket. Yet we are still lucky because [local military hospital] is one of a whopping FIVE military hospitals in the country that subsidizes IUI and IVF as part of their teaching hospital program. Even subsidized, IVF is still not really in the budget for us anytime soon so fingers crossed we don’t get to that point.
Not everyone is so lucky. A single cycle of IVF, which is not guaranteed to work, costs an average of $12,000 out of pocket in the US. How many couples do you know that can afford even one cycle at that price?
The photo I’m sharing here is of me wearing a necklace that a friend of mine custom made for me as part of her efforts to raise money for IVF. You can read more about her story here: http://crowdfundingamiracle.wordpress.com/ And you can order some of her lovely jewelry here: https://www.etsy.com/shop/SoDamnCharming (She’s having a big 50% off sale right now in honor of NIAW, check it out!)

IMG_0217_neck

 

 

 

 

 

Saturday April 26
This is my last post for #NIAW. Thank you for reading, liking, commenting and generally being awesome people. I promise tomorrow I’ll go back to my regularly scheduled bitching about how stressful school is, but I reserve the right to bring the topic of infertility back up at any time.
There are about a million more points I want to make but I’m just going to hit some of the big ones here and now.
-There is this perception among some that infertiles are bitter, jealous, humorless, and angry with the world. And I definitely am sometimes. But that doesn’t mean that I’m not also happy for my friends and family when they are pregnant or that I don’t love their kids. I am and I do. But there is a certain amount of cognitive dissonance in which I am happy for you and sad for me. Read the attached link. I think this blogger does a beautiful job of capturing much of that feeling.
-I do sometimes have to hide some of you from my feed. It’s not personal but every ultrasound pic, baby bump photo, pregnancy symptom complaint, and infant pic is capable of cutting like a knife. I still love you and I’m still happy for you, but sometimes I also have to protect my heart. I still check in on you when I feel strong enough.
-I was so happy this year on April Fools when not only did I not see a single fake pregnancy joke post, but several of you shared this link: http://www.scissortailsilk.com/2014/03/28/the-joke-is-over-why-i-hope-not-to-see-pretend-pregnancy-announcements-on-april-1st/ Those “jokes” are never funny.
-The infertility community is amazeballs. All this time when I haven’t felt comfortable talking to my friends and family about this stuff, I’ve found some seriously incredible friends in my computer who just get it. I wouldn’t have gotten through this time without the support of that community and for that I am crazy grateful. I try to give back to them as much as I can (I spent this morning anxiously awaiting a friend’s test results and Googling what time it was in Hawaii).
-Infertility is a part of me but it’s not all of me.
-I love you all.

http://theunexpectedtrip.wordpress.com/2013/12/31/its-not-envy-its-absence/

In the end I got a pretty good amount of response, especially on the loss post. I’m really glad I did this.

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Resolve to know more

Did you know that one definition of resolve is “to convert or transform by any process”? Or that another is “to break up or disintegrate”? In the past year I have been broken up and I have been transformed. I am no longer the woman I was during last year’s National Infertility Awareness Week. In the year of changes, of falling to pieces and putting myself back together, I have come to know myself more.

I know my body more not only through the medical diagnosis of Polycystic Ovary Syndrome (PCOS), but also through my own mindfulness, where I tune into everything happening inside me. I know my heart and my mind more now too.

The hardest times of this year have been those when I haven’t known more, the periods of limbo. Waiting to know if the pregnancy was viable, if my tubes were blocked, if I had a polyp, if I needed a liver biopsy. Waiting for the pregnancy to “resolve” while knowing that regardless of what the doctors or blood tests said, that pregnancy would forever be integrated into my body.

I have learned the most about myself through these in-between times, the periods of silence and waiting. But this week I resolved to break the silence. For the first time in two and a half years I spoke openly and honestly with all my friends and family about my infertility. I have been relentless, sharing a bit more of our story and more resources every single day. I resolved to make sure everyone else knows more too.

Putting back together my broken pieces I know that infertility is a part of me. As I integrate this new facet into myself I see it on its own and I see its impact on the other parts of me. Like a puzzle with more than one solution I reassemble myself and know the whole is so much greater than the sum of its parts.

This newly resolved me didn’t get here alone. This is the year I connected more deeply with the greater infertility community, where I came to know more people and more stories. Like my whole, this one is greater than the sum of its parts. Which is really saying something because these parts, these people, are fucking amazing.

This is a year I came to know more. Now I resolve to do more.

Basic understanding of the disease of infertility.
About NIAW

Sensitivity

My whole life I’ve been told I’m too sensitive. Maybe I am, I dunno, is there such a thing? But that’s not the point.

I had a rather difficult evening and night last night. I was at the thesis show for the honors art program at my school when I found out that a guy I know, who I guess I consider a friend but it’s hard to say it’s not like we communicate outside of seeing each other on campus, had won the art competition I entered a couple of weeks ago. A lot like when friends get pregnant I was struck with immediate strong feelings of happy for him, sad for me. He wasn’t sure who had come in second, I checked my email just in case but it was just a rejection letter. No prize here. I was really disappointed. Way more so than I thought I would be. I hadn’t really expected to win (the piece I entered was figurative and they have never selected figurative work for this prize) but I was crushed. I’ve dealt with loss/rejection of art stuff before. It’s always disappointing, but for some reason this was just really bad. I was so upset I left the show before even getting a chance to say congratulations on the show to the people in the honors program that I know. Then I felt like a selfish dick

After that I had class during which I was upset and distracted the whole time. The whole damn time. I went home and cried a little to my husband and he comforted me and I thought I was better. I went upstairs to get something to eat, pulled out my phone, opened up Facebook, and saw a pregnancy announcement from the couple we went to NYC with. And I lost it. Completely and utterly lost it. Dropped my bag, threw down my phone, collapsed on the floor and started sobbing hysterically. My husband came upstairs thinking I was still upset about the art show loss. We went upstairs to snuggle in bed and I proceeded to have a complete breakdown. All the crying that hasn’t been happening over the past few months came out. Beyond ugly cry. And then I had an existential crisis about art and oh my god what if I’m not good enough, what if this isn’t the right career for me, what if I’ve made the wrong choice again? Which morphed into I’m invisible at school, nobody supports me, nobody acknowledges me or my work except for the one teacher I TA for. I just utterly lost my shit. And my poor husband tried to comfort me but kept saying things that only made it worse.

Eventually I calmed down and decided I would try to sleep. I pulled out my phone wanting to make a quick Facebook post and saw another post from our friend. Apparently the pregnancy post was a joke. The wife was logged into the husband’s account and thought it would be funny to make a post saying they were expecting.

I’m not sure if I was more angry at them/her when I thought it was real or when I learned it was a “prank.”

When I thought it was real I was upset because:
a. They’ve been married all of about seven months.
b. She’s about to go on a deployment and getting pregnant right before would be really irresponsible of her. (I’m assuming it would cancel her deployment?)
c. They didn’t tell my husband and/or I before announcing it on Facebook despite being really close to my hubby and knowing about our infertility struggles.
d. They were either announcing stupid early, like first positive test early, or they were pregnant in NYC and didn’t tell us (although now that I think about it she was drinking a lot so that wouldn’t have made sense, anyway).

When I learned it was fake I was upset because:
a. Fake pregnancy posts are fucking hurtful.
b. They can’t claim ignorance. They knew about our stuff before and she has been liking several of my National Infertility Awareness Week posts this week.

I just don’t understand how she/they could think this joke is okay, especially this week. It’s not okay. It’s not funny. It’s not “just a joke.” It’s hurtful. I’m angry. I don’t know if I should send her a private message or just leave it alone. I’m going to address the issue of fake pregnancy jokes without naming names in my last NIAW post on Saturday. Maybe that will get the point through. Or maybe some people are just so oblivious it will change nothing.

But I am NOT too fucking sensitive about this.

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Awareness

This week in honor of National Infertility Awareness Week I officially came out on Facebook as infertile. It was and still is scary. I’m honestly shocked by how little response I have so far gotten. I’ve gotten a small handful of likes on each post and zero comments or messages. I’m going to be posting something new each day this week about different facets of infertility. I’m extra curious to see what happens when I post about loss. Whatever, it’s not about that. I just honestly expected more of my friends and family but whatever. People suck I guess. (Did anyone else take that Buzzfeed quiz about how much you hate people? Jenn?) I am also absolutely NOT out about this blog. So if you’re my Facebook friend and read the blog, please don’t mention it. I still need this space to vent. But if you’re my Twitter friend, now that it’s private, I’ve been sharing a whole lot more about myself. The anonymity is less about you lovely people not knowing who I am and more about not wanting people who already know me to find the blog. So there’s been pictures and my name and talk about where I live on Twitter. That has been absolutely freeing.

Whatever happens I hope that my posts inspire even the smallest change in just one person. That alone would be worth it. That is why I’m posting. To increase awareness. To fight the stigma. To encourage empathy. We’ll see how it goes. At some point this week I will be posting for the blogger challenge, but I have a feeling that might not happen until Saturday.

Keep fighting the good fight, y’all.

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