Follow me on the crazy, hopeful, discouraging, funny, and ultimately successful (one way or another) path to parenthood while facing infertility.

Sunday, April 20, 2014

Resolve to Know More About What Works For You

Happy National Infertility Awareness Week! This year's Blogger's Unite challenge is...



I could probably write a zillion posts on all the things that people could know more about when it comes to infertility. I am a little in love with this topic, because knowing more and helping other people to know more about infertility is kind of my thing. It is incredibly important to me to be as open as possible about my own infertility and to unflinchingly share the nitty gritty of what this process is like so that a) it takes any kind of shame or stigma right out of the conversation, b) I can fix misconceptions (ha ha) that are surprisingly prevalent about what it means to be infertile, and especially infertile FOR A REALLY LONG TIME, c) I can blanket people with information on how to better understand people who are struggling with infertility, because you just never know how this disease is going to touch you or the ones you love.

But, I am ridiculously open about all of this because it is what works for me. I do many of the things that I do when it comes to managing my infertility, battling my infertility, coping with my infertility because it is what I need to do to keep myself sane, to keep myself moving on, to be true to my own path on this godforsaken trip through hell. Even though I'm still deep in the flames, with a raw and not-yet-scabbed canceled IVF cycle oozing all over me, I still believe that it will be a trip THROUGH hell. I am doing a little too much sightseeing on the way to my destination, but I have faith that the destination is within reach.

It is important to me to stress that you need to Know What Works For You because there is a lot of information, misinformation, well-meaning advice, etc. that can make you feel like you must try this and that and that there is one good way to make your way through the infertile swamp. There's not. It's not one size fits all. It's not a sit-down dinner with no choices, it's a buffet. One where you can pick and choose what works for you and get seconds of some things and not go back for others and even change your mind about something you thought wasn't tasty the first time around. Everyone is different, and even on your own personalized journey you can change and morph and need different supports, different levels of knowledge, different tools to make your way through.

I'd like to share a few things that I feel are important to me to Know More about, because they help me. Not because I think they are magic fixes that will work for everyone. Not because I have the secret to success (obviously I don't given my timeline of failed treatments). But because they help me, and maybe they'll help you too, and I want to invite you to my buffet.

Resolve to Know More About Your Treatment. This is really important to me. I personally need to be an active participant in my medical care when it comes to my infertility treatment. I need to be well-researched, I need to have conversations with my doctor where I understand everything that is being done to me. I need to be able to bring ideas to the table and then have them discussed in relation to my unique case. I need to read books, and blogs, and (this is super important) credible websites that aren't trying to sell you something. I need to talk to others, but remember that I am not them and what works for someone else might not work for me. And vice versa. As cheesy as it sounds, knowledge really is power. What you don't know really can hurt you. Knowing too much and obsessing can hurt you too, though. The key for me is balance.

Resolve to Know When to Speak Up. This is a tough one. Once you know lots, you need to decide when to employ this knowledge. For me, I like to be able to ask a lot of questions and feel comfortable questioning decisions made around my care. I am not a pain in the ass patient (I hope), because I am not confrontational. But, when something seems a bit weird, it's important to go with your gut. You are one patient tracking one set of protocols/medications/pieces of advice. Your medical team is working with possibly hundreds of patients and, while it would be nice if they were, doctors are not superhuman. They make mistakes. They forget things. I need to be able to remind them, to pore over my history and my recommendations and feel comfortable with where we're going, medically speaking. I have actually caught mistakes in my protocols that would have compromised cycles. Does it make me mad? Yeah. But again, even though I am not a medical professional, I look out for me. No one else is going to keep close tabs on things as well as you can. I have had times where I wanted to not have to speak up and I didn't say anything when something seemed off, and it did not work out well for me. So, I feel like it's better to ask about something than to keep it to yourself. The worst that could happen is that your fears are unfounded. Speaking up isn't limited to doctors. Speak up if someone says something hurtful to you, even if it is unintentional. Speak up when there is an opportunity to educate someone who just doesn't know. Speak up to let your thoughts be known--sometimes you might feel like this is nobody's business but yours, and that's entirely possible, but it can be incredibly liberating to share information or your experience or gently tell someone that they are being insensitive to people who have difficulty conceiving. For me, it restores a bit of the feeling of power that I lose to the indignities of infertility.

Resolve to Know Which Doctor/Clinic is Right For You. This can change. We loved, loved our first clinic. So much so that we stayed for four years despite limited breakthroughs and a niggling feeling that there was more that could be done. So we did second opinions after our donor egg cycle failed and looked suspiciously like our other cycles, leading to fears that we had a different issue going on. It was very eye-opening. We had gotten comfortable, which isn't necessarily a bad thing--you want to feel comfortable with your medical team. But we had limited ourselves by staying with the familiar. In getting second opinions, we discovered things that we did not know were possible, new technologies and methods that weren't available where we were. We also discovered that we needed a combination of the innovative and the friendly. One second opinion was a little too aggressive for us, a little too "I know exactly what will get you pregnant" with no conversation, just confidence to the point of arrogance. A stance that our previous history was so tainted with outdated methods that it couldn't be used (no one else said this), and that that doctor's way was going to be THE way. That could be, but I had never felt so UNlistened to in my life, and anyone who says I WILL GET YOU PREGNANT feels more like a hard sell to me at this point. No one can promise that. I did not used to think that, but after years of this and twenty embryos come and gone and trying lots of different things, it is possible to throw all you've got at something and still not get pregnant. For us, a good match was responsive, easy to get ahold of, a doctor who treats us as integral members of the team and researches as well to make sure what I find out there is appropriate for me, as an individual. And an amazing lab. Your doctor is important, but the lab is crucial. A good lab can make the difference between success and failure, and I wish I had known that sooner.

Resolve to Know What Type of Support Is Best For You. At the beginning, support groups were great. But, the way that I personally seek support has evolved and changed along with our experiences. I cannot go to support groups anymore. I cannot go to yoga for fertility anymore. Not because they are not helpful, but because I cannot continue to be a part of a group where people come and go and I remain a fixture. It may not be the most PC thing ever to say, but I have found this to be true--when you have been at this for a long time and you realize that a particular meditation cd or alternative treatment or positive outlook is not going to actually get you pregnant, going to support groups where people aren't quite as dusty from the road can actually be less helpful and more harmful. I do not need someone to tell me to "just think positive" or exhort how important it is to take a particular herb or set an intention for my day to invite the Universe to grant me my request. That goes through me like a nail at this point. You can, actually, put incredibly warm and motherly energy into the cosmos and dedicate 30 minutes every day to meditation or journaling or praying and do wheatgrass shots and acupuncture and hip opening yoga poses and invite your baby spirit to come to you, and have those invitations denied. It feels pretty shitty when you are left behind and it seems like the magic works for everyone but you. I found support groups incredibly helpful in the first year or two of things, when I was on the same page as many people. But then I realized that other people who were still going through infertility after years of disappointment and loss and failure stopped coming to support groups. And now I know why. This is not to say that it's not important to impart your wisdom to help newbies on the road. That's where one on one support and blogging come in for me. Again, maybe not PC, but I can try to make myself not feel so lonely by finding other people in the blogosphere who seem to be magnets of misfortune too. I comment and enjoy blogs from people who have become successful, people who suffer through IUIs instead of IVFs, but I really gain solace from finding people who are on a similar trajectory as me. I don't rejoice that they are also deep in the muck, but it is an amazing source of support to find people who are at a similar point as you. It's tough, because when you join support groups or reach out to online groups, there isn't really a handbook for what to do when your infertile friends find success and you don't. I don't begrudge anyone their success, and I keep hoping to join in and cross over to the "other side," but in the meantime it really helps me to pick and choose how I garner support. I enjoy one on one interactions with other people as well. That takes away the inadvertent but inevitable feeling of either "I've been at this longer" or "I don't deserve to complain because I haven't been at it enough." Neither of those are constructive, but in groups comparisons happen. In groups a mob mentality of "This is the magic fix!" tends to happen, too. Which is great unless the magic fix was apparently a placebo for you. I kind of wish that there was a support group for people who are long-term infertility patients, because I feel like there are concerns that are unique to being in that position of being left behind and wondering if this is ever going to happen for you. I realize that would be exclusionary, but it might also be really helpful. Because I feel like this population that I unfortunately find myself in can be lonely and underserved and it might be good to find each other to give support that's targeted, where you don't feel like the sad sap horror story of the group.

Resolve to Know More About How You Can Become a Parent. For me, child-free living is not an option. Resolution for me cannot have a house with just me, my husband, and cats. So I know that the options available to us have to result in children. In the beginning, we had a flowchart that I created at the front of our "Family Planning Notebook" where I took notes on everything. I'm on my third notebook, and this flowchart is hilarious to me now. We would start with IUIs, then decide if we would attempt IVF or try IUI with donor sperm. We were willing to try IVF maybe twice. At that time we did not know that we'd need IVF for my set of issues as well, but already we were open to third party reproduction, not that we thought we'd ever need it. After the IUIs failed and we were told IVF was our path to parenthood, it was a no brainer. But then that didn't work, either, and we had our freak ectopic pregnancy that cost me my right tube and the early miscarriage that drove us to the egg donor decision. Not everyone would follow this new flowchart. I take it for granted that we do IVF, it seems like an extension of ourselves at this point, like regular tooth cleanings. But for some, that path ends at IUI. Third party reproduction is another fork that not everyone is comfortable with. To us it made sense. We want a baby, but we also want the experience of pregnancy if we can manage it. That is important to us, and it drives some of our decision making (ok fine, all of it). When egg donor failed, and we got all those second opinions, and we were told that it didn't look like my eggs were the issue but maybe sperm was, we decided to try donor sperm. And that is where the third party reproduction flowchart ends for us. We are planning a cycle with both of our materials with the new lab, but if that doesn't work out we will have embryos fertilized with donor sperm that's sitting in the cryofreezer as we speak. Would we try gestational carrier? No. That path is not an option for us. Will we try donor egg/donor sperm? I can't say never, but I doubt it if only for the fact that at this point cost is a huge consideration. There is a limit to the permutations we're willing to try because while we are fortunate financially, we are not of unlimited funds for this. We have come to the "End of the Road Conversation." It took us way longer than we thought to get here, but before signing on with a package at our new clinic, we decided that we would give it a year. Two fresh cycles and any frozens we'd have, and if we didn't get pregnant after that we would be officially done with the medical path. We would begin a journey toward domestic infant adoption, as when we were doing second opinions we also did orientation and information gathering with an excellent adoption agency. We have a plan that works for us. We have to be open to a lot of possibilities, and we put all those research skills to work, but knowing about all our options gave us power to make this decision. Because that's what's right for us.

Maybe some of this will be what works for you, too. But maybe not, and that's ok -- because one of the hardest things I've learned in this experience of prolonged infertility is that not everything that seems like great advice or a surefire way to increase success actually is, not for everyone. You have to go to that buffet and choose carefully, and revisit the buffet as your situation changes. What seemed like a great idea at the start may not be right anymore further down the road. Adjust and embrace flexibility, because bendy things take longer to break.

Resolve to know more. About the process, about options, but most importantly about YOU.

For more information about the disease of infertility and this glorious week of awareness and support, please visit these two links from RESOLVE:
Infertility 101
About NIAW


8 comments:

  1. Thanks for spreading the word!!

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  2. Jess, you're buffet analogy is wonderful and I think you give great advice for people facing infertility!!! I really do admire your strength after such a long journey on the road...and imagine the journey only gets lonelier the longer you face it and the more travelers you see come and go. Your idea for a long-term infertility support group sounds like a great idea...I feel like that should exist somewhere, but perhaps the blogosphere is the best place to connect with people in a similar place. I sincerely hope that your happy ending is just around the corner!

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    1. Thanks Kelsey! I totally agree that the blogosphere is a great place to find kindred spirits. Thanks so much for your thoughts and your kind words!

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  3. I think it is awesome of you (and others) to be involved at a political level even while you are going through it. I laughed out loud at "I am doing a little too much sightseeing on the way to my destination"---sightseeing through hell! Wonderfully put. I am going to create a static blog (one I don't add daily posts to, but that just has pages) filled with the mountains of research I have done and put it out there as a resource, and any time I post about my pregnancy on FB, I will link to that blog in the same breath.

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    1. Glad I gave you a chuckle! I think the info-blog sounds like a great idea. I really think sometimes people just don't know...don't know what it means to be infertile, don't know about treatments, don't know how to be friends with infertile people, don't know how to manage everything infertility piles on you... a compact resource would be a wonderful addition to facebook! :) Thanks for stopping by, lady!

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  4. Bravo, Jess! You are one strong lady. Speak up. Speak out.
    Love,
    Mom

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