Wednesday, May 18, 2011

a long one...

I’ve been having a rough week. A very rough week. And for the first time in my life I don’t know how to write about it. I moderate several miscarriage and loss boards on a website called babycenter, and I participate in several loss forums on Resolve. Many times people have come on, anxiously pregnant and looking for support. In order to protect those still trying to conceive, I redirect them to a pregnancy after loss board and close the discussion. I have gotten a lot of public flack for this, but many, many private thank yous. Women have been vicious to me. There was one woman who repeatedly messaged me mocking my losses and infertility and calling me names. She followed me from forum to forum ridiculing me and antagonizing me. What did I do to her? I’m still not sure, but she made sure to rub my nose in my repeat pregnancy loss as if I were the worst person on the planet.
I find it kind of funny when people do that. I mean, it’s horrible and I’m way too sensitive, but it’s kind of funny still; you’re sending me vicious hatemail that I wouldn’t send my worst enemy in order to “defend” someone whose post got locked? As if their right to post on the wrong board supersedes the rights of the hundreds of people who are posting on the right board and read the rules and abide by them? I wish I could say that was the first time and the last time that would happen. But people seem to get very upset when I enforce the rules that are clearly posted on the TTC board. I have gotten many messages that say something to the effect of, “I’m sorry your personal losses have made you bitter and overly sensitive, but I did nothing wrong by posting pictures of my ultrasound on the ttc after miscarriage board…” right…
Anyway, I’m getting off track here, what I’m trying to get at is an analogy I have often used in scenarios like this. When people come to a ttc board looking for support for their pregnancy I have been known to liken it to showing up at a homeless shelter and talking about the time you got locked out of your house. Yes, I’m sure it was terrifying to be standing on the outside with nowhere to go and no way to get back in, but you did eventually get back in. Women who have been TTC for a long time haven’t just been standing outside their house waiting to get back in, they’ve been wandering the streets for weeks, no destination, nowhere to go; just lost and hopeless and aimless.
With repeat pregnancy loss the analogy is a little different, getting pregnant doesn’t have the same finality. It’s more like showing up at a homeless shelter to talk about the time terrorists blew your home up in the middle of the night while you and your husband were sleeping inside of it. Yes, you got a new home, but who’s to say the terrorists won’t show up and blow this one up too? You’re not homeless anymore, but you’re not exactly safe either. So where do you go? There are not many support groups for people whose homes have been blown up, but there are homeless shelters on every other corner. Couldn’t you just go there and get support from them?
I may get a lot of flack for this, but I’m a stickler. And I don’t think your need for support is grounds for breaking the rules and asking for support from people who have none to give to your situation.
I miss my in-person support groups. A lot. I mean a real lot. I wonder how they’re doing and if their IVF worked and if they ever made peace with their insensitive mom. There’s something about female solidarity that is such a comfort to me. But there are many women in my groups (I went to 2) that have never been pregnant before. They don’t understand how scary it is to be pregnant after several losses, and my showing up to ask for support would be so hurtful to them. I know they would be sweet, and try to understand, but ultimately my ability to conceive (multiple times) would trump the feelings of failure they have after 3 or 4 IVFs and not a hint of a second line.  Ironically, the last time I went to group two of the women there said to me, “I hope you don’t take this the wrong way, but I am so jealous that you’ve been pregnant…”  I wanted to talk about what it felt like to deliver my fetus into the toilet after carrying it dead inside of me for a week, but I relented and bowed to the place of grief their comments came from. 
There’s a hierarchy of infertility and we always want to put ourselves and our personal pain at the top of it. Is it worse to struggle with multiple failed IVFs and FETs and half a decade of infertility OR conceiving somewhat easily and for some inexplicable reason never getting to meet these children? Is it worse to have secondary infertility or to never know the joy of having a child? What hurts the most? Obviously it’s whatever you personally are going through at that time. The hierarchy is bullshit, but all of us infertiles sign up for it and add our woes to the list. And then complain that it exists at all.
This has been a week from hell. I had a full blown anxiety attack on Saturday night after work. Why? Because I couldn’t find the pictures from my most recent ultrasound and I was sure that was a sign the pregnancy was doomed. I lashed out at my husband, screaming at him that he must have thrown them away. “those may be the only pictures we have of this baby and you threw them away like garbage!” Did he throw them away? No. In fact, my amazing husband stayed calm and didn’t argue with me. He went through every surface in our apartment until he found them. Did it help my anxiety when he handed them to me? No. In fact I was so deeply panicking by that time I could hardly breathe. All he could do was wrap himself around me and let me cry.
My OB refused to write me a refill for my progesterone. I’m ten weeks now and supposedly out of the danger of my pregnancy failing for that reason. “By ten weeks your baby has created a fully functional placenta which supplies all the hormones it needs. If your pregnancy fails now it will not be due to lack of progesterone.” Rationally I know she’s right. My husband agrees with her. Besides, what am I going to do? Stay on crinone suppositories for 9 months because I’m afraid to stop?
Stopping the progesterone has been a bit like freefalling. I have never had a pregnancy make it this far and so I have no coping mechanisms for this. What now? How do I know everything is ok in there? How do I know this house won’t be blown up in the middle of the night by terrorists?
The stasis is incredibly difficult. My OB agreed to do a heartbeat check on Monday with the warning that it was extremely unlikely we’d hear a heartbeat so early and it would probably make me more anxious. “no, no…” I assured her “I understand it’s a long shot…” And yet when she couldn’t find the heartbeat with the crappy doppler I barely made it out of the office without having a total meltdown. Last pregnancy my midwife tried to find the heartbeat with Doppler at 10 weeks exactly and couldn’t. I got the same schpeel about “it’s so early” and “it’s almost impossible to find now” and I believed it. Scheduled my ultrasound. And found out at 10w3d that our baby had died weeks before.
This week, my tenth week, has been by far the hardest. I start and end every day with the appeal “please don’t bleed.” My due date for my last pregnancy is next week and I keep thinking of myself with this huge round belly and a painted nursery…
It’s been a hard week but luckily I am coming out on the other side. When I had my miscarriage there were so many signs that that pregnancy was not going to work out, but this time the opposite is true. There are so many signs that things are going to work out. I just need to focus on that. I need to remind myself how sure I am and how strong this baby is. I have an order for an ultrasound and you know what? I’m not going to get it. I know that many women in my position want frequent ultrasounds, they want to see their baby constantly, and I understand why. But that has not been the case for me. in fact, this whole downward spiral of doubt and anxiety was, I believe, prompted by the ultrasound I got at 8w5d. I was confident and sure before that. Before I saw that tiny beating heart and got hit with just how vulnerable that tiny baby really is. I know I’m not the norm, but I dread the thought of getting another ultrasound. When I think about lying on that table I almost start to hyperventilate. So many ultrasounds have been disastrous for me it’s like I have post-traumatic stress disorder. I don’t want to be in that position again. Seeing the baby doesn’t make it stay alive. If I’m going to lose this pregnancy I don’t want it to end on that table looking at the dead baby trapped inside of me.
I know, it sounds crazy. But that’s where things are right now. It has been the week from hell. I have been so terrified I could barely function. But I’m still alive, and the baby is still alive, and my house is still standing.

10 comments:

  1. I totally agree about locking posts on babycenter boards when people don't follow the rules, it was definitely tough hearing about a pregnancy on a TTC after miscarriage group when I was struggling to get pregnant. Congrats on making it to 10 weeks. I just got a very faint BFP at 11dpo (2 days ago) and I know that I'm going to be full of anxiety too, but I admire how confident and I'm going to have some confidence in my new pregnancy too. Good luck to you and I'll definitely be following along.

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  2. (((HUGS))) I am so sorry you are having a tough week. Pregnancy after IF is what we all strive for, but are fully unprepared for emotionally. After years of TTC we know all the worse case scenarios, and it consumes us. I'm not a member of those boards on BBC, but I think what you are doing is the right thing-whether other women agree or not. It is a TTC after miscarriage board, not a pregnant after miscarriage board. BIG difference! Stay strong and don't let those other women get you down, they are the bitter ones.

    You are more confident and stronger than you think. You are going to be an amazing mom and I wish you all the best.

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  3. Hi Grace, I'm from the babycenter site (first the trying to conceive after miscarriage board, and now the ttc after mc graduates board), and happened to read your blog post here... just wanted to say I think you are doing a fine job with moderating the ttc after m/c one. People on babycenter can be really ridiculous, and clearly some people literally have nothing better to do than to harass you about shutting down posts relating to pregnancy. I mean really??? I enjoy being able to talk about my pregnancy on babycenter which is why I participate, and I've met some really awesome ladies there, but sometimes it's also a bit like being back in 7th grade all over again, haha.

    Anyway, stay strong :) Making it to 10 weeks is huge -- you will be out of the 1st trimester before you know it.

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  4. Hi Grace-

    I totally agree with the downfall of not going to support groups once you are preggo. (Honestly, I was truly surprised that your are not welcome after you get your BFP, I thought it would be OK for the first tri. But I do understand) After (just) once loss, I think I would really benefit from meeting with others that can help you keep positive and share experiences (in person). I can really see the need with mulitple losses. I have been on both sides. IF with no pregnancies (heartbreaking in a different way) and dealing with loss. I think both is equally awful, honestly. And I think it sucks that there is any kind of hierarchy about that... Anyway, if you need any support that I can give, let me know. I also miss the group (I really want to know how everyone else is doing too). But I can understand why they don't want preggo ladies present...

    I am sorry your week was so stressful. (((HUGS))) I hope that the rest of your first tri move quickly so you can start to relax. And, good for you, don't get the scan unless you WANT to. I am with you on that one. My last scan with the RE is tomorrow before we get released to the OB, and I am really looking forward to not having to get some kind of test done EVERY WEEK.

    Hang in there. You are a strong woman and will be a fantastic Mom.

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  5. thank you guys so much for all the suportive comments! i really appreciate it

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