NIAW 2014 Wrap Up

Well, that's all she wrote - National Infertility Awareness Week 2014 is now over.

I have to say that I had no idea when I started how it would go.  I didn't want it to come off as preachy, but I also didn't want to let the opportunity go by to educate.  Many of my Facebook friends are very involved in politics and community service and public policy (I went to college in DC, what do you expect?) so I knew it was a chance to spread the word about infertility to an audience with potential influence.  Even after continually pruning my Facebook friends, I still have 552 friends.  That's a potentially large audience for my posts. I wanted to capture attention without being dismissed as politically motivated or requesting pity.

I received over 200 "likes" combined between my posts, and 26 comments as of now.  Several friends have messaged me to tell me that they, too, are struggling with infertility privately (or at least not on Facebook), and several others have called and texted and messaged me to express support.  The response has been overwhelmingly supportive and I do believe several people are more informed now than they were before. I'll call that a win!

The best part was how cathartic it was for me.  I truly feel better than I have in months after this week.  I had no idea that's how it would go down.  I think putting our struggle in words and out in front of the public eye was validating to all the fears and pain I've gone through. It also was my own personal soap box to pontificate on the unfairness of infertility and the various annoying and poorly informed comments I've heard throughout the process.

So here's the rest of this week's posts (I didn't get around to posting on Friday... whoops!).  As always, if you are going through or have gone through infertility and would like to use some of my words in your own NIAW posts on Facebook, please feel free to do so with a big hug from me.  If you are going to repost on a blog, please link back to my blog and give credit for sharing some of my words.  I am happy to put our shared struggle into words, if it helps you express your own feelings on it.

Without further ado, here's the rest of my week's posts:

Tuesday:
(The paraplegic bit is not my original work.  I don't know who wrote the list to give credit to, so if this is yours, please let me know in comments and I will gladly link to your original piece!)

In honor of National Infertility Awareness Week, I am posting each day to bring awareness to the condition and those of us fighting the good fight.

"So, what do you think people would say to you if you were paraplegic instead of infertile?"

1. As soon as you buy a wheelchair, I bet you'll be able to walk again!
2. You can't use your legs? Boy, I wish I was paralyzed. I get so tired of walking, and if I were paralyzed I wouldn't have to walk anywhere!
3. My cousin was paralyzed, but she started shaving her legs in the other direction and she could walk again. You should try that.
4. I guess God just didn't mean for you to be able to walk.
5. Oh, I know exactly how you feel, because I have an ingrown toenail.
6. Sorry, we don't cover treatment for paraplegia, because it's not a life-threatening illness.
7. So... when are *you* going to start walking?
8. Oh, I have just the opposite problem. I have to walk walk walk - everywhere I go!
9. But don't you *want* to walk?
10. You're just trying too hard. Relax and you'll be able to walk.
11. You're so lucky... think of the money you save on shoes.
12. I don't know why you're being so selfish. You should at least be happy that *I* can walk.
13. I hope you don't try those anti-paralysis drugs. They sometimes make people run too fast and they get hurt.
14. Look at those people hiking... doesn't that make you want to hike?
15. Just relax, you'll be walking in no time.
16. Oh do my legs hurt, I was walking and walking and going up and down the stairs all day.
17. I broke my leg skiing, and was on crutches for weeks, and was worried I'd have a permanent limp, but I'm 100% healed.
18. I'd ask you to be in my wedding party but the wheelchair will look out of place at the altar.
19. You're being selfish, not coming on the hike with us, and looking at all of my track & field trophies.
20. Don't complain, you get all the good parking places.
21. If you just lose weight your legs will work again.
22. If you would just have more sex, you could walk!
23. You don't know how to walk? What's wrong with you? Here let a real man show you how to walk!
24. You are just trying too hard to walk. Give up, and then you'll walk.
25. Here, touch my legs, then you'll walk!
26. Just take a vacation, and the stress-break will be sure to get you walking!

I've heard many versions of most of these comments myself. If you wouldn't say it to a paraplegic, don't say it to an infertile person. Unless you've been through the exact same thing, you don't know how it feels. And someone else's success story is not usually as hopeful or inspirational as you may think.

A simple "I am sorry you are going through this and am here if you need to talk" is plenty to support someone going through this! Anything else might be unintentionally hurtful.

Wednesday:

It's National Infertility Awareness Week, and I am choosing to post every day to raise awareness for a condition that affects 1 in 8 couples, most of whom struggle quietly. My husband and I are 1 in 8. And I don't think I have ever done anything quietly!

I wanted to take this post to mention the often forgotten warriors of this condition. As a woman, I am the victim most people think of when they think about infertility. And yes, I am the one who has to live in a body that has betrayed me, and I am hyper aware of every ache and twinge. I cannot escape it. I am the visible victim of infertility as I wear stretch pants due to swollen sore ovaries and my lower abdomen bruised from shots to stimulate my ovaries and give us a better chance at success after so long. Yet I am not the only one in this battle.

Some joke that men have it easy with this condition, and while they don't typically have dozens of needles poked into them each month, I cannot tell you how hard this has also been on my husband. Not only does he want a baby every bit as badly as I do, he also gets his hopes up right along side me each month, but then has to handle his disappointment quickly with another failure to comfort me. Yet he is unceasingly optimistic, which buoys me through my worst days.

He is my emotional rock. He holds me as I cry and gives me space to process the ugly days. He never complains about the mountains of vitamins I stuff into his weekly pill box, or the doctor appointments where he is required to attend and miss work. He balances our budget so we can afford month after month of treatment. He handles my hormonal roller coaster and my single-minded focus on our struggles with love and affection. He is delicate and loving as he carefully stabs me with a needle each night, kissing the spot after. He is insistent that he does not care how we become parents - through medical procedures, adoption, kidnapping (kidding!) - but that he knows it will happen somehow one day.

I honestly did not know my husband was nearly this wonderful when I married him. He has blown me away with his compassion and love. I just know that I would not have the strength to keep hope alive without his support, love, and strength. And I know more than ever that he will make a fabulous father one day.

Men are victims of infertility, too. They may not react openly, but this condition is tough on everyone. It is especially tough on a relationship. I am incredibly lucky to say we are weathering this storm together.

I love you and appreciate you more than you will ever know, sweetheart.

Thursday:

I have been posting every day this week for National Infertility Awareness Week. Because we are 1 in 8 couples struggling to have a child, and because infertility is not a bad word, it does not define me, is not at all shameful, and it is okay to talk about.
Today's message is a simple one. Those suffering cannot make it without the love and support of friends and family. Sometimes infertility brings former strangers together to commiserate over a painful struggle. Sometimes incredibly special friendships are created and cemented for life. For all the support we have received from so many, I say thank you. We infertiles remember who is there for us time and time again. We know we're not a lot of fun when all we can talk about is fertility treatments and depression, and we appreciate those who stick with us through the rough patches.

"Coming out" this week on Facebook has been an incredibly cathartic and therapeutic experience for me, far more than I could have imagined. To each of you who has called, texted, emailed, responded, "liked" a post, or messaged me this week, I cannot tell you how much your support means to me. Thank you for letting me share our story, and for embracing us as we struggle. To those of you who are fighting similar demons, it helps me to know we are not alone, and I hope it helps you to know that I am always here to talk or just listen or cry or celebrate when one of us finally, finally succeeds.

If you know or suspect someone is going through infertility and don't know how to talk to them about it, here's a great link to some fabulous suggestions (and I'm always happy to talk about it):  http://www.resolve.org/national-infertility-awareness-week/25-things-to-say-and-not-to-say.html


Saturday:

Thank you all for letting me recognize National Infertility Awareness Week. It was therapeutic for me, and I hope that I made even a little progress in getting the word out that infertility is an actual medical condition, that it's more common than you'd likely believe, that treatment is expensive and insurance in the US is woefully inadequate in its coverage for testing and treatment, and that emotional support is essential.

If you know 8 couples who have kids, chances are at least one of them took longer than a year to conceive and/or required medical intervention for it to happen. And chances are they've never told you.

If you know a couple who has been together a long time, don't ask when they plan to have kids - they very well may be struggling privately. Honestly, don't ask anyone that question. You never know what they might be going through.

If you know someone having a tough time, and they have tried on their own for 12 months (or 6 months if over 35 years old), please encourage them to see a Reproductive Endocrinologist for testing. An OB/GYN is great at pregnancy but not as familiar with the hormones and function of the reproductive system.

Don't tell someone going through infertility to "just relax" and that "it will happen when you stop thinking about it." That's not only very likely wrong, it's insulting and hurtful. If someone told you they had cancer or diabetes, you wouldn't give them that advice. It makes it sound like it's somehow their fault for not being relaxed enough. That's just simply not true.

Infertility is a real medical condition. There are always real medical reasons why conception hasn't happened (whether or not testing can uncover it). Respect that.

Infertility also does not (usually) mean barren, just less likely to conceive - anecdotal evidence of someone who tried for 8 years and finally conceived is a result of incredibly low odds replayed over and over and over and finally winning the lottery. It doesn't mean they were somehow misdiagnosed - it means they're infertile and got very lucky. It also doesn't usually give hope to other people battling infertility to hear stories like that. Avoid "I know this one person who..." stories. Usually not helpful at all.

I hope beyond hope that this is our last National Infertility Awareness Week without a baby (or at least being pregnant), but I know it's entirely possible we'll still be fighting this battle in a year. However, infertility has broken pieces of me, and while I may be able to glue it back together, I will forever wear the emotional scars, so I will always support the infertility community.

Regardless of whether we get pregnant this month or in 10 months, whether we have a biological baby or adopt, I know that this struggle will someday be resolved in some way. I look forward to that, and we will keep getting up to fight again after every time we get knocked down with another failure until we finally find an answer.

Thank you all for your kindness, sympathy, and understanding. Your support means the world to both of us. You've given me strength this week with your "likes", comments, messages, and phone calls. Thank you, thank you, thank you!

NIAW: Day 2

I'm choosing to post daily during National Infertility Awareness Week to make my voice as loud as possible to show people that infertility affects real people.

Today I posted another post on Facebook.  There's about half as many "likes" as when I "came out" yesterday, and absolutely zero comments, but I hope some people read it and learned something, and maybe I made a small step towards changing someone's view towards mandating insurance coverage for infertility.

This is what I posted today:

In honor of National Infertility Awareness Week, I will be posting a brief topic of interest each day on the subject to support my fellow infertility warriors.

Today I want to touch on insurance coverage. In 13 states, infertility coverage is mandated by law. For people who find themselves incapable of conceiving on their own, this is a huge relief. For those of us who don't live in those states, or whose insurance has a loop hole, the cost of trying to have a child can be overwhelming.

I want everyone to stop and think - what if you were told you had cancer, and only a 5% chance of spontaneous remission each month without treatment, with a cumulative 20-30% chance of long term survival. Testing alone costs upwards of $3000. Then there's a procedure that cost $3000 each month which would give you a 20% chance of being cured each month, with a maximum of 60% chance of cure after 4-5 months. Or you can pay $10-15k for an invasive surgical procedure with 50% chance of being cured, which you can try repeatedly with a cumulative 85% chance of remission regardless of how many times you try.

You'd want insurance to help you pay for that, so you can survive, right? Well, for the vast majority of couples facing infertility, their insurance covers little to none of that.

I know some of you are thinking, "But having a baby isn't life or death!" For those of us who have always dreamed of being parents, sometimes it feels like it's life or death. The depression rates for infertility patients is at the same level as those who have been diagnosed with terminal cancer.

I ask all of my friends who have children to imagine that someone kidnapped your child, and told you to cough up $10-30k for an 80% chance of having that child returned to you. Dreadful, right? That's the stuff of nightmares. Well, right now, for infertile couples, that's pretty much the options they face. Pay the money or risk never seeing your child be born.

The chance of having a child is essentially financial Russian Roulette. How many times can we afford to try before we bankrupt ourselves? Can we refinance our home? Can we max out credit cards? Can we beg family for private loans? At what point does continuing to try to have a child of our own become financially irresponsible? Are we willing and able to spend another $10-30k to adopt after failed treatments?

Insurance companies that cover these services are able to negotiate discounted rates with providers up to 60% cheaper than what their clients who pay themselves are charged. Having access to treatment at an affordable price can alleviate much of the stress and panic of finding yourself diagnosed infertile.

Having a child should not be a privilege of the wealthy and fertile. Infertility is a serious medical condition, and should be treated as such by laws mandating insurance coverage across this country.

#niaw2014 #infertility

National Infertility Awareness Week 2014

Today is Easter... and it's also 4/20, as my youngest sister-in-law reminded me this afternoon.

But it's also something else, something that means a great deal to me this year.

It's the first day of National Infertility Awareness Week 2014.

I remember last year reading about it, and thinking that it would never apply to me.  I was about 7 months into trying to get pregnant, and filled with optimism that we would certainly be pregnant within the year mark.

Not so.

As of today, we've been off birth control over 2 years.  We've been actively trying for 598 days, which is a little over 85 weeks.  It's also 1 year, 7 months, and 21 days.

No pregnancies.  We had the likely chemical pregnancy last cycle, so for two whole days I got to believe this might have finally happened for us.  But like a good dream where I have a pregnant belly or a baby, I woke up and it was gone and I was back to the nasty reality of infertility.

I have stabbed myself (or my husband has stabbed me) in the belly with a needle 22 times (so far).

I have gone through 21 cycles of hope and disappointment.

I can't count how many times I've cried.  I started crying around the end of my 8th cycle or so, and while it hasn't been consistent, I have a bad day or week around the end of each cycle ever since.

There's been probably a half dozen body-wracking sob fests.  My husband and my mother and my dear friends Hannah & McKenzie have been on the receiving end of some of the worst moments of my life, when the emotional pain became physical and I felt hopeless and miserable.

I feel like I lost 2013.  The entire year just went missing, somewhere between Cycle Day 1 and Ovulation and the Two Week Wait.  I have wished my life by in 2 week increments, hoping for a different end than the one I've seen over and over and over each time we try.

Dozens upon dozens of friends have gotten pregnant and delivered in the meantime.  A few have even gone on to conceive second children.  Each Facebook pregnancy announcement or adorable baby picture is like another dash of salt in the wound.

As we started testing and treatment, I gradually started becoming more open about our struggles.  At this point, I'll tell anyone.  I'm pretty sure I've mentioned our infertility to a grocery store check out lady at some point.  Not the nitty gritty, but just a simple statement of fact that we're having trouble conceiving or we're going through infertility treatment.  With friends, I'm open about the process and the cost.

Today, as the start of National Infertility Awareness Week, I took it one step further.  I came out about our struggles on Facebook.

Here is what I posted:

Today is not just Easter (Happy Easter!)... it is also the beginning of National Infertility Awareness Week. 

Unfortunately, this is a battle we've been personally trying to overcome for nearly two years now. There's a lot of misinformation out there about infertility, so I am choosing to step out of the shadows to bring a face to the experience. If you have any questions, I am happy to try to answer them. Please be kind and considerate in your comments, because while I'm open about our struggles, it's still incredibly difficult for me to go through this, and there are others who struggle more privately with the same condition.

Myths I have heard:
- "You're too young to be infertile!" - infertility is defined by the medical community as failure to achieve pregnancy after one year without prevention. For a woman under 30 like myself, 1 in 10 will find herself in that position. While there are increasing challenges as you age, infertility can strike at any age.

- "Can't they just fix what's wrong?" - in about 1/4 of the cases, infertility can be attributed to female issues, in about 1/4 of the case, it can be attributed to male issues. For 1/4 of infertile couples, both male and female issues contribute. And for 1/4 of couples (like us), no determinable reason can be found after extensive testing. For most causes they can uncover, there is no sure fix. It is a game of risks and chances, all of which are expensive, time consuming, and painful (emotionally and physically).

- "So if nothing's wrong, it'll happen as soon as you relax and don't think about it!" - this is one of the most hurtful pieces of "advice". Something is wrong, but tests are limited in what they can determine as a cause. I could go on and on about what could potentially be wrong, and what our chances of success would be with each, but none of them are going to "answer" our problem.

- "Just relax, it will happen eventually!" - doctors have proven that the "spontaneous cure rate" (or the "it just happened rate") is less than 5% per month. Over the course of 2 more years, someone our age with no explained cause of infertility has only a 20-30% chance of success.

- "Just do that IVF thing, or adopt!" - there is a grieving process to not having this happen as easily as it seems to happen for just about everyone else. Each month hurts like a loss as we dare to hope it will finally happen. Financially, most insurance carriers cover little to nothing for treatment. We have to pay around $1,000 per month right now, with thankfully some coverage, for only a 20% chance of success. If this doesn't work, we will indeed move on to IVF later this year, which will cost close to $10,000 and give us only about a 50% chance of success. That's a lot of money for not very good chances. But we're willing to continue to try, because we still dream of a baby who has my husband's nose and my eyes. If we lose that dream, we will gladly move on to other ways of building our family because we desperately want to be parents, but that's another grieving process that we have yet to go through.

For anyone wondering how to speak to someone going through infertility, RESOLVE's "Infertility Etiquette" page is a great place to start. If anyone has any questions for me, as I said, I'm happy to answer them. To those who are battling this alongside me, my heart goes out to you and I am always here to talk and be a shoulder to cry on.

Feedback so far has been overwhelmingly supportive.  I've had many friends "Like" and comment on my post, all to express support.  

Only one has tried the whole, "I know someone who struggled and eventually got pregnant!" comment, and one other has suggested I read "Taking Charge of Your Fertility" (which, while a good book for those initially struggling to make sure they've tried their best on their own, is not going to solve our infertility at this point and I'm very much aware of all of the book's suggestions - I could probably write a sequel at this point).  I'm glad at least no one has suggested lifting my hips up after sex, or eating gluten free, or taking cold showers (all suggestions I've heard in the past).

While I appreciate the comments as friends genuinely trying to be supportive and helpful, what many don't realize is that it's not so helpful.  For infertiles, someone else's story is anecdotal at best and not reflective of our own journey.  Simply because someone else got pregnant eventually does NOT mean that I will, too.  I also don't need to learn more about my cycle to get pregnant - I am seeing a doctor who is controlling every aspect of my cycle. Even if I were checking basal body temperature, during a medicated cycle it's pointless.

However, I knew by opening up that I couldn't control the response I got, and that while everyone seems to be well intentioned, many attempts at support can be misguided and end up hurting more than helping.  I'm in a good place emotionally today to handle whatever comes, so it was a good time to do this for me.

And speaking of infertility treatment, I had my final monitoring appointment yesterday morning.  A nice plushy lining right around 10mm.  I had a VERY active right ovary - there were 6 of measurable size.  One dominant was just under 20 mm, the smallest was around 11 mm.  Most were between 11-13mm, but one was 15mm.  There were a handful of smaller follicles that weren't in play, but make me hopeful that if I do move on to IVF with its higher dose of gonadotropins, that I will likely have a very good response.  On my left ovary, there was one measurable one at 16 mm, and a handful of tiny ones.

All together, we're looking at around 7 follicles that could be of big enough size by ovulation, and around 17-18 total follicles.  Wowza!  I'm super sore, I feel like someone tucked water balloons under my belly button and filled them up. Even lifting my legs to get into the car, I can feel the swollen portion of my lower abdomen with my thighs.  It's weird and uncomfortable.  Not outright painful usually, though walking around for awhile ends up rather uncomfortable.  It's a similar sensation to when you have strep throat and your glands in your throat swell and ache and are sore to the touch.  Except in my lower abdomen.

My E2 levels were around 190 on Thursday (two days earlier) with only one follicle over 15 mm.  So I'm guessing it didn't shoot through the roof or the doctor would have cancelled the cycle for a likely over-response and higher risk of higher order multiple pregnancy.  Still, I'd be lying if I said I wasn't slightly concerned about a multiple pregnancy here.  It's definitely a risk factor this cycle.

However, on the flip side, with all the failed cycles I've had so far, I feel relatively confident that we won't get every single egg.  I'm just hoping for one (or two... heaven help me, I'd be happy for two at this point, though twins have never been my dream) to fertilize and stick.

Also, with so many follicles, and a plushy lining, if this cycle doesn't work, I think I'll be all the more confident that moving on to IVF is the right decision.  If this doesn't work, I don't know that we have much hope with continued IUIs.

The doctor told me to do one more shot of Follistim 75 iu at 6pm last night, and trigger tonight at 10:30pm for an IUI on Tuesday at 9:30am.

I'm hopeful that it seems like there's at least 3 follicles, hopefully not many more, that are in play.  We have a really good chance this cycle!  This could be it!

And if not, I think I'll be okay.  I'll be disappointed for sure, and I won't promise that I won't cry, but overall I'm doing really well with the current plan.  A break would be nice, and I have already been verbally brainstorming with my husband about which alcoholic beverages I would want after a failed cycle (Margarita Day might replace Mothers Day for me this year, and I'd be hitting up the microbrew section of the local grocery store with enthusiasm).  And after that much needed break, I have high hopes that IVF (or FETs from the fresh IVF cycle) will hold our answer and our long awaited dream.

Here's hoping that this is my list National Infertility Awareness Week without a baby (or at the least, being pregnant this time next year)!  I hope the same for all of my lovely readers who are struggling with the same battle.

All the Emotions

I'm trying really hard to look at all of this from a positive angle, trying to be optimistic and hopeful, reminding myself that I'm young and our long term chances are good if we continue with treatment options.  I'm trying to believe that this cycle will work, and if it doesn't, that I'm okay with taking a long break and pursuing IVF.

The sum of the emotions, though, on any given day is overwhelming.

I'm sad.  I'm so sad that somehow we're broken.  I'm sad that we can't seem to do this on our own.  I'm sad that we don't have a child yet.  My empty arms ache, and I look every day in the mirror at my flat stomach wishing it had a few more stretch marks.  I feel broken and I don't know what's wrong or how to fix it.  I'm sad that I've spent months, and the entirety of 2013, counting life by in cycle days and days past ovulation, wishing and hoping for a dream that has failed to materialize.  I wish my life by in 2 week increments, and I am sad that I literally can't seem to stop myself and smell the roses most days.

I'm angry.  I'm angry that we have to spend money to get what people get so easily, many of those people who don't try or don't care or don't want it nearly as much as we do.  I'm angry that this isn't considered a condition that health insurance should cover.  I'm angry that artificial reproductive therapy is still somehow controversial - when I hear people say their families don't support their choices to pursue fertility treatment, it's infuriating.  Well, I don't support that someone has to deal with the pain of infertility, so there's that, too.

I'm hurt.  I'm hurt that people don't get it, even if they care.  Friends who make statements that hurt when they're just trying to help or not thinking of how their words will fall on my ears - anecdotes about people who tried forever and adopted and got pregnant, or off hand comments joking about how they might get pregnant by accident on a weekend trip with their husband, or trying to comfort by assuring me that I'll have a baby before I know it.  Really?  Before I know it?  Because I think I know how long I haven't had a baby.  Because I am very much aware that we've been trying for 20 months, and off birth control for 25 months, and that at this point, we've got less than a 5% chance on our own each month.  To get a halfway decent chance, which still isn't as good as your average fertile person trying on their own, we have to pay close to $1k each month.  I have to jab myself with needles and put my feet in stirrups and deal with all sorts of discomforts and inconveniences.

I'm scared. I'm so scared of everything.  This is my overwhelming emotion.  I'm scared that I'll never have a biological child, that we'll spend thousands upon thousands of dollars and end up at the end of the road without a child.  I'm scared that even when I process the grief and move on to adoption, either embryo adoption or foster-to-adopt, that it won't work or that I'll never have a newborn to bring home, that I'll never get that experience.  I'm scared of all the money and pain.  I'm scared of my own mental health as we continue down this path - I'm not sure how strong I am.  I try so hard to put on a brave face, but I'm so very scared.

I'm lost.  My biggest dream in life has always been to have children.  Early on, I chose to put my own career on the back burner to follow my husband's job, knowing that it would be nearly impossible for me to climb a career ladder with all the moves required by his job.  Also, we both wanted me to be a stay-at-home Mom once we had children, so it made sense.  My job was supposed to be to be a mother, and I just feel so useless.  I don't want to go climb on another career ladder just because I can't seem to have a baby.  I don't want a different job, I just want to be a mother.

I'm grateful.  I'm grateful that my marriage is strong, that I married such a wonderful man who is supportive and understanding (at least as much as you could reasonably expect any other human being to be when I am such a crazy emotional mess).  I'm grateful that he's open to all possibilities in family building, so I know that we will somehow, someday be parents.  I'm grateful that we can afford the treatment, that our insurance covers more than I expected, and that we've got the funds to try what we need to try for as long as necessary to somehow end up as parents.  I'm grateful that we adopted this dog 2.5 years ago.  She's my darling and I can't imagine not having her to cuddle with on my worst days.

I'm confused.  I'm not sure how this will all feel when it's over, whichever way and whenever it may end.  I don't know why we're in this position - no doctor has been able to even give me a list of possible reasons why we haven't conceived, just "unexplained".  I'm so confused why us, why me.  I've thought out every possible issue and solution, but there's no solid answers.  But regardless, eventually this journey will have an end, and I'm just not sure how that will be.  For the two days last cycle that I thought I was pregnant, it was so surreal and confusing.  I've spent a long time gathering information on infertility and making plans on how to deal with it - what will I do when that information isn't necessary anymore and it's time to start a new path?  I suppose I start from scratch on researching pregnancy and early childhood education.  It seems so weird that while I may always be infertile, I won't always be actively trying to conceive.  Being infertile, as much as I hate it, has oddly become part of who I am.  I'm not sure to what extend that's good or bad, but it's true.

I'm hopeful.  On my good days, I remember that someday I will be a parent. I have no idea how that will happen, or who that child will be, but I know how important that is to both of us.  We have a real chance this cycle, though sometimes I feel like I've emotionally written it off so that I can start actively preparing myself to take the next step - a 5 month break followed by IVF.  Oddly, I think I'm even more hopeful for our break than this cycle.  It will be nice to feel like myself again, not peeing on sticks (my husband will hide them at his office so I'm not tempted by OPKs or HPTs).  I'm sure we'll still aim for good timing and take vitamins, but no high stress and no medical intervention.  As no doctor has given us a reason we can't conceive on our own, it's entirely possible that we will.  And if we get to the end of those 5 months without conceiving, I'll be certain we've tried everything we could before pursuing IVF.  And we will have hopefully saved enough to pay for our cycle up front out of pocket.

I'm overwhelmed.  This journey is all consuming, and it's seemingly impossible to turn my brain off from the constant hum of thoughts about infertility and what it means and how to fix it.  The treatment involves lots of visits up to my doctors, which makes it impossible to plan visits to friends or trips out of town during treatment cycles.  I'm tired and sick of being a pincushion.  I'm really looking forward to our break cycles to recharge.

I'm proud.  I'm learning how to deal with the overwhelming emotions of this process.  I've found a good psychologist, though it took a few duds to find a good one, who is a great source of support on my worst days.  He's sympathetic without being condescending.  I'm better at communicating what I need and how I feel about certain things.  Even when friends recently announced a pregnancy, which I know for a fact happened their first month trying, I only cried for about 10 seconds and then I pulled it together and enjoyed the rest of my day.  To normal people, that may not sound like much, but it's a huge accomplishment to me, when previously other people's happy news would send me spiraling down into the "why not me?!" cave of despair.  I'm open and honest about our struggles, which I feel like makes infertility less of a taboo subject.  I hate that in some ways I've become "the infertile girl" but I like to think that I'm putting a face to a very real struggle that many people have, and by being open, I can make positive strides in educating people about how to talk about and deal with infertility in a sensitive way.

On any given day, at any given moment, these emotions are all jumping over one another to get to the front of my attention.  For half a second, I'm proud, but then I get sad and scared.  And then I'm happy and hopeful.  And then I'm angry and overwhelmed.  It certainly doesn't stop in the middle of the night - I am certainly infertile in my dreams, too, and often toss and turn with worries and concerns.  The only way I can quiet the voices is to go for a run, which I can't do during much of my cycle while medicated.

Right now, I'm somewhat over this cycle and this doctor (especially the 2 hour drives each way).  I don't have much hope for this IUI, though a little bit creeps in around the edges sometimes.  But I'm looking forward in many ways to having some months off, and in some ways I'm looking forward to IVF and its greater chances and control over the process.  I'm hopeful, not so much for this cycle but for my long term chances of being a mother.  I believe I'll have a baby in 2015, and right now at least, I believe we'll get pregnant with our biological child before the end of 2014.  That's what I'm clinging to for today.

The Next Step

I did it.... I made our IVF consultation appointment.

On May 14th at 7am, we will be on a phone call with our potential IVF clinic to discuss the process and (of course) the expense.

I never thought I'd be at this point.  I still really hope we can cancel that phone call if this IUI cycle works.

But I realized that I needed the appointment booked ahead of time because if this cycle doesn't work, it will help me emotionally to know what the next step is and be able to move on pretty quickly to a new plan.  And because I didn't cry today on the phone making the consultation because there's a hope I won't need it - if I waited until after this cycle, I probably wouldn't be able to get through the conversation without sobbing hysterically.

If this cycle doesn't work, we will probably stop treatment for the summer and just enjoy some "us time" before doing an IVF cycle in late September/early October.  We might possibly do one more IUI before then, but quite possibly not.  At the moment, that feels like the right decision.

We do still have a chance of getting pregnant in the meantime while waiting for IVF, which would be amazing (and that slight hope will hopefully keep me from being really depressed about it all).  Because the doctors can't find a reason why we can't get pregnant, it's possible our bodies might just figure it out after all this time in the 5 cycles we'd have on our own before pursing IVF.  That would be awesome!

My husband has also said that he will take my OPKs and HPTs and hide them in his office at work.  That way I'm not tempted to test during our break cycles.  If any cycle goes longer than 31 days, he'll bring home an HPT so I can test.  That's our deal.

Researching the clinic where we'd do IVF, I feel at peace with the decision.  It feels right.  I don't want to be here at this point, and I don't want to have to pay that much money or make these kinds of decisions, but it feels like a good solution to the problem we're faced with at the moment.  And if we get to September without being pregnant, that will be after 27 cycles of actively trying, with one unmedicated IUI, a medicated TI cycle, a hybrid (Femara/Follistim) IUI, and an injectibles (Follistim) IUI in the process.  It will be time for IVF, and there will be no denying that it has come to the point of necessary.

And after speaking with my sister-in-law and a friend who both got pregnant at this clinic, and hearing their glowing reviews, I feel like this clinic is a good fit for us.  Their focus on alternative care in coordination with IVF treatment - specifically meditation, yoga, massage, and acupuncture - seems like something that would help my anxiety considerably throughout the process.  It's also affordable, or at least as affordable as IVF gets.  My parents and brother still went, "Whoa... it's HOW expensive?!" when I told them, "And it looks like we can do IVF for under $7k!"  I guess the sticker shock has worn off a little bit after all this time.  At least we won't have to pay for a hotel, as we'll be traveling to my husband's hometown for treatment, as my brother and his fiancee are moving there so I can stay with them (I love my in-laws, but I'll be more comfortable with my brother for that length of time and during such a stressful process).

So... we have our plan.  I'm excited and nervous and scared and overwhelmed and sad and happy and anxious.

Let's hope we can cancel that phone consultation, though.  That would be the best news!

Onwards!

As expected, last cycle ended.  I begrudgingly kept taking progesterone suppositories as my doctor recommended, but my period showed up anyway 15 dpiui.  So at least I can move on!

Looking forward now, the doctor thinks I responded a bit slower than he'd like last time and my lining wasn't ideal, so he'd like to do just injectibles this month.

Now I've got mixed feelings about injectibles.  I've got a long standing aversion to twins (or - I can't even bring myself to imagine - triplets).  With injectibles, that's a very real possibility and even likelihood.  If I get pregnant, I've got about a 20-30% chance of twins.  Yow!  However, injectibles also bring around a 20% chance of pregnancy when combined with IUI.   And it means more control by the doctor on how many follicles and how big, and without risking the thickness of my uterine lining with the anti-estrogen properties of Femara like my hybrid cycles.  Again on the flipside, though, it also means more monitoring appointments, which means driving the 2 hours to my doctor's office more frequently during stimulation.

I'm hopeful, I really am!  Yesterday, I was thinking about what a great feeling I have for this cycle.  I think this might be it for us!

Today, though, my regular nurse was not in, so she had me see another nurse.  The other nurse is the same one that I saw the day I had my baseline appointment for my very first medicated cycle, after which I ended up sobbing in my car for a good hour before I could drive home.

This nurse is very nice and friendly, so it wasn't until today that I realized that she simply doesn't lift my spirits very much, and in fact exacerbates whatever worry I present.

Last time, I mentioned that I was excited to try meds in the hope that something would work, but scared about twins.  And she had replied, "Oh yes, twins are a very real possibility!  Especially at your age, you'd be looking at 20-30% chance of twins if the cycle works, and 5% chance of triplets.  But don't worry, we haven't had quads in at least 5 years."

Because yes, turning my fear of twins into triplets and quads really made me feel better about that.  I clearly know it's a risk, and not looking for you to deny that, but would it hurt to spin it?  She could have made me feel better about it by saying something like, "Well, yes, there's a risk of twins, but most women don't end up with twins.  In fact, over 70-80% end up with just one baby from this treatment."  Same damned numbers, better spin.

Today, I mentioned that this was our first injectibles-only cycle.  And she said, "Yes, and if this cycle doesn't work, the doctor will likely want to meet to discuss IVF as the next step."

Whoa, that came out of left field.  I wasn't ready for that one.  Trying to push it off, I said, "Well, we've got a 20% chance, so I'm hopeful!  Though I do realize that means there's an 80% chance we'll have to try again..."

And she cuts me off and says, "Well, 20% would be good!  We don't usually see people have that high of a chance, though.  Most people have 10-15% chance with IUIs."

I don't get the feeling she was disagreeing with the doctor (who is the one who told me the percentage chance), but still... we don't know exactly what's preventing us from getting pregnant, so we don't know exactly what percentage chance we really have.  It might be zero (or close).  I just don't know.  But way to make me feel excited about my chances, lady!

So I was a little upset.  Not devastated, but sad and scared.  I got in the car and did (as I frequently do) cry a bit on my drive home.

However, the more I thought about it, the more I realized that might be what's best for us after all.  For several reasons:

-  I'm scared of twins - there's no way to really mitigate the risk of twins with IUI while still maximizing the chance of success.  With IVF, we could do elective single embryo transfer, which would bring our chances of twins down to the same as an average couple - around 1-2%.

- I have a high antral follicle count consistently - I've never had them count fewer than 16 antral follicles, and today they counted 23. This indicates I would likely produce >10 follicles from an IVF cycle, which would mean I'd likely have several frozen embryos if the first fresh embryo transfer doesn't work.  And with the clinic we're considering, frozen embryo transfers are included in the initial cost for the first year after the fresh cycle.

- This process is expensive and scary, and once/if we finally are successful, I can't imagine how difficult it would be to go through all of this again while we have a child.  If we've got frozen embryos, a FET would be a lot cheaper, less stressful, and have a higher chance of success than resuming IUIs or another fresh IVF cycle.

- The cost isn't quite as bad as I thought.  The clinic we'd want to use costs under $4k for a fresh cycle, plus $750 flat for monitoring.  There's a military discount, though I'm not sure how much.  And we have some of the medications already, so there would be a savings there.  It's conceivable we could do this for under $7k, maybe even under $6k.

- I have a place to stay near the clinic.  Family lives nearby who I could stay with indefinitely, and repeatedly, if needed.

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So all that to say, I think this is going to be our last IUI cycle after all.

If it works, fabulous!  Even if we end up with twins, I'll now consider myself lucky since we saved the cost of IVF, which would be our next step.

And if it doesn't work, I think we're going to take some time to just step back from this process and wait until October, when we'd do an IVF cycle if we're not pregnant yet.  Because we're unexplained, it's entirely possible we'll get pregnant in the months we're waiting to cycle (though rather unlikely).  And for the moment, stepping back from all of this sounds like a good plan, for many reasons, but especially my physical & emotional well being, our relationship as a couple, finances, etc.

I was once told when the idea of taking a break sounds like it would be a relief, it means it's time to take a break.  I think after this cycle, if it doesn't work, I'll definitely be there, because right now taking a break sounds nearly as good as being pregnant.

Hope and Hurt (An Ode to a Chemical Pregnancy)

(The below is a compilation of entries made over the course of the past several days.  The post ends talking about a likely chemical pregnancy, so be warned if this is something that would be difficult to read about).

Written Thursday April 3rd:

I am writing this to post later.  I’ve never posted on delay before, but I feel like certain people who read this blog deserve to be told personally before I put it on blast for the world to read.  I also don’t want to have to eat my words if things don’t turn out as I hope.

I think I am pregnant.  I’m pretty sure I’m pregnant.  I really think I am probably pregnant.

I tested out my trigger.  Around 8 days past trigger (dpt), which is 7 days past IUI (dpiui), the test was glaringly negative.  Stark white.  Totally negative.  Same for 9 dpt and 10 dpt (8 and 9 dpiui respectively).

I was told not to test early – that it would lead to unnecessary early disappointment or false hope.  I might still be in the false hope territory, but the fact that I had 3 days of negative tests before today’s test makes me feel like I’m not stretching this too far. 

Yesterday I tested, and it was negative, and I let myself get negative and lose hope.  If this works out, testing yesterday would definitely qualify as unnecessary early disappointment.  I didn’t have much hope this cycle, I just didn’t feel like it would happen.  As I’ve previously written, I have felt like we were doomed to walk a long and hard path with infertility.  I was somewhat expecting to be in this for the long haul (and we still might – this is still early to even call it an official BFP and even then, early to know whether this is a viable pregnancy).

But for today, I feel hopeful.  Today I took another test, checked it at the 10 minute mark, and thought to myself, “Well, it’s negative again.” And I went to place the pee stick down (I keep them lined up to see the progression day-by-day for the cycle), and out of the corner of my eye, I saw a line.

I yanked the strip back up, and twisted my wrist back and forth trying to make the line look clearer.  I could see something, but I wasn’t sure if I was making it up.  I jumped in our Jacuzzi bathtub, which is in the corner where the only window is in the bathroom.  I yanked open the shades, and twisted the strip in front of my eye again.  Yes, it was… was it?  Yes, it was a shadow of a line.  It was where it was supposed to be, it was a line.  But only if I twisted it at the right angle, didn’t look absolutely directly at it, and had the right light.

I must be losing my mind.

So I did what every sane person would do – I ran to the backyard in my pajamas to look under bright sunlight.  Was the line still there?  Yes, yes it was.  There was a line!

I dropped to my knees, shaking and crying, and my confused dog walked over and licked my face.  I then went back inside, and had to check again under the bathroom lighting.

Yes, that whisper of a line was still there.

I texted a series of quick messages to a dear friend who has been through this all with me from the very beginning (I remember distinctly the day she told me that she had just gotten a positive pregnancy test, her 6^th month of trying, back in early 2012!):

I think I have a squinter!!!!

I am shaking and in disbelief.  

I am not sure, it’s VERY light, but it’s most definitely there, and more than yesterday or the day before. 

Damnit, you are the only person I am telling before my husband – CALL ME!!!! J

She did call me back promptly, and was excited for me.

I have second guessed myself a dozen times.  Every time I look at it again, and compare it to previous sticks from the past several days, I feel confident.  And then I think about it, and I second guess myself.

My husband asked me to meet him for lunch, and then texted me and told me to show up at 11am as he didn’t have much work to do and we could go buy him some new socks before grabbing lunch.

As we walked out of the building towards the car, I said, “You didn’t hide my tests last night like you said you would.”  (After being bummed by a 9 dpiui BFN, he told me he was going to take them away until 12 dpiui when it would be slightly more definitive).

Husband: “Oh, I’m sorry, did you test?”  (Sounding worried that I’d be upset).

Me: “Yup, and I got a squinter!  I think I might be pregnant!”

The look on his face was priceless. I’ve dreamt of making his face light up like that, seeing that grin of amazement and love and excitement.  I had far more elaborate plans early on for how I’d tell him during our first few cycles of trying to conceive, but in true “us” fashion, the simple and straight forward approach was the best.  He proposed to me when I was stark naked after stepping out of the shower.  Like I said, simple and straight forward is sort of our thing.

We went to lunch, and were both in a bit of a happy daze.  We talked a little about baby stuff, but mostly just how unbelievable and bewildering it is to find ourselves in this spot.  He says he always believed we’d get here, and I honestly don’t think I was ever sure it would happen for us.

After lunch, he had more time, so we went to the store to look at baby things.  Not because we were going to buy anything, but because we were so happy to finally be able to look at things and imagine needing them.

I’m a terribly impatient person, so I peed on another stick this evening.  It was still a squinter, but a slightly easier to identify squinter.  You didn’t have to avoid direct eye contact with the line to see it – it’s a shadow, but it’s definitely there.  My husband even says he sees it, though he isn’t sure it’s a line.  I keep telling him that seeing ANYTHING means it’s positive.

I know it could technically still be the trigger, which is where I guess false hope comes in.  But with 3 days of glaringly negative tests before this one, and a darker test this evening than this morning, I think it’s okay to say, with a shaky voice filled with the apprehension that comes from an emotional 20 months of trying to get pregnant, that today I am pregnant.

I am pregnant.

Those words alone make me cry.  Finally, tears of happiness.  Tears of hope.

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Written Friday April 4th:

Today is 11 dpiui.  I peed on another stick.  There’s still something.  It’s still not clear.  It’s a line, sort of, but it’s just ever so slightly barely there.

Part of me wants to withhold water and pee on sticks all day.  But I know that if I am pregnant (and really, it seems I’m pregnant for the moment at least, even though whether or not it’s a chemical pregnancy is dubious) that I need to hydrate.  So I’ll keep drinking water, and keep hoping.

I’m terribly impatient.  Patience is not a virtue I have.  I just want to know what’s going on, and I want to know NOW!

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Written Sunday April 6th:

Today is 13 dpiui.  The line seems to have gotten lighter.  In fairness, I think I’ve been trying to hydrate, and my pee has been more diluted.

On Friday (11 dpiui), I went to Lowes and bought materials to build a garden.  While I was there, I stopped at a nearby Dollar Store to pick up a bunch of their cheap pregnancy tests.  When I took one, the second line was light but definitely positive.

On 12 dpiui, I couldn’t get the Dollar Store cheapie to show a line.  About 20 minutes after peeing on it, something showed up, but it wasn’t the right width, and I’m not sure I’d even call it a faint positive.  But I could still get squinters on the Wondfos.

And now on 13 dpiui, which is likely 12 dpo, I was hoping my first morning urine would show a slightly more clear line.  No such luck.  I’ve peed on a few Wondfos since then and did another Dollar Store test.  The Dollar Store test seems to be negative, and the Wondfos are back to the same “I am pretty sure there’s a shadow of a line, but I might just be imagining things” place that I was when I first got a hint of positive on 10 dpiui.  It doesn’t help that it’s raining today, so there’s very little natural light, which is usually the only light I can see the damned lines in anyway.

Dr. Google is again evil.  Pictures of other people’s progression to 12 dpo shows a more obvious line.  Sure, there’s people out there who swear their children are the result of squinters up until 14 dpo and later, but I find myself wondering if they really knew when they ovulated, and if perhaps they just ovulated a day or two later than they thought.

I’m double guessing everything.  Did I mistake a late lingering trigger for a BFP?  Logic tells me no, as it was gone 3 days before I got a positive test, and it did get darker on 11 dpiui from 10 dpiui.  Was there a line at all?  I keep double guessing this, and then I go and look at them again, and I know there’s a real line.  And my husband saw it.  And friends I sent it to (who know this stuff) saw it.  So it was there!  So then that leaves me wondering if it’s a chemical pregnancy or I’m just dealing with various forms of diluted pee and very slowly increasing hCG.  And since my doctor won’t move up my beta blood test, I’m stuck wondering if my period is going to show up on Tuesday like it’s any other month.

Patience is so totally not a virtue I ever claimed to have.  I’m dying a little bit with waiting.  I was so sure that getting that BFP finally after so long would be some sort of finish line, the end of the worrying and struggling.  I had no idea that waiting AFTER getting a BFP is even harder than waiting BEFORE getting a BFP.

If you were to put a gun to my head and ask me what I thought was going on, I’d tell you that I think this is a chemical pregnancy and that my period will come this week.  It gives me mixed feelings, as I’d obviously love to be (and most importantly, stay) pregnant, but the fact that I did get pregnant somehow gives me some hope for this process working.  That someday I’ll end up with a baby at the end of all of this.  I’m just not sure if that’s going to be after this pregnancy or if it will take a bit longer.

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Written Monday April 7th:

Today is 14 dpiui.  Today (or tomorrow) is normally when I would expect my period.  The pregnancy tests swear they are 99% accurate for the day you expect your period.

Today on a First Response Early Result, I got a clear negative test.  On the Wondfo that I dipped, also negative.

It’s over.  I mean, I guess it’s not over until my period shows up, but there’s only the most incredibly minute of chances that this could possibly be a sticky pregnancy.  It’s most likely a chemical pregnancy, where the sperm fertilizes the egg, but it just simply fails to implant or continue developing.  It’s incredibly common, but most people don’t test as early as a crazy infertile woman like myself.  If I had just waited until 14 dpiui to test, I would have only seen a negative and not been the wiser that I was, for a few moments at least, pregnant at last.

My only concern now is when to stop the progesterone.  It will likely artificially hold off my period until I stop taking it.  I emailed my nurse to see if I’m allowed to stop taking it tonight.  I’m supposed to wait until Thursday, but that feels torturous and probably unnecessary.

I’m also mildly concerned about an ectopic pregnancy.  I’m going to ask for a blood test to make sure my hCG levels are back to zero before starting the next cycle.

Oh well, I always said I didn’t want to subject my child to a December birthday.  I guess now I won’t have to.  But January sounds nice, right?  Please, oh please, oh please?!

Inevitable

I know... I know... I shouldn't test early.  It only leads to false hope or unnecessary disappointment.  I certainly know this by now, at least the disappointment.  I'm already anticipating more disappointment.

But when I don't pee on a stick during the 2WW, it's pretty much all I can think of.  So it's easier to test and slowly lower my expectations, letting a teensy bit of hope cling as disappointment gradually sets in.  Until it's over, and I get my period, and by then I'm fully ready to move on.

So today is 9 dpiui.  I peed on a stick.  Glaring negative.  Not even an evaporation line to taunt my imagination.

According to the interwebz, the brand that I use, Wondfo, can detect as little as 5 units of hCG (most brands, even the expensive ones, only detect when it's 25 units or more).  Meaning that by 9 dpiui, slightly more than 50% of pregnant women can see a positive.

Yes, I do realize that means at least 40% of pregnant women still wouldn't get a positive test for another day or two or three, that implantation doesn't even occur in some women until 10 dpiui, but it makes that 20% chance of success that we were told we'd have from this cycle feel like it's also been halved.  So now I feel like I've got 10% chance of success, and 90% chance of failure.

I know, I know.  I'm overthinking it all.  I'm a pessimist.  I'm taking statistics and dragging them into emotional territory where they have no business being.

I'm a bit disappointed and disillusioned.  If it ends up being false disappointment and I get a late positive, I'll gladly eat my words and look like a fool.  But so far I'm batting 20/20, and I'm not talking vision.  Twenty cycles, twenty BFNs.  You get used to it after awhile, a little.  Lowering expectations seems to lessen the disappointment that seems to be inevitable.

No tears yet.  I'm sure they'll come in a few days when that lingering hope disappears.  For today, I'm just emotionally drained.  I kept busy by doing household chores and cleaning my car and helping a friend build a hanging plant shelf.  I'm not even overly sad - just resigned.  I'm not sure when, if ever, I'll feel truly hopeful again.  Despite whatever chances these medicines and procedures give us, I feel like I'll always have a bit of an expectation for that, too, to fail.