Cast off the Island of Fertiles, Meet Meagan

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Infertility is hard to talk about, for those who live with it and for those who have never experienced it. I imagine that it’s mostly because infertility revolves around reproduction, which revolves around what happens in a couple’s bedroom. That makes it a touchy subject.

However, while people may be uncomfortable talking about reproduction, they bring it up children all the time without batting an eye: “How long have you been married?” is always followed by, “Do you have any children?” A seemingly well-meaning question, one asked out of curiosity with perhaps an attempt to find common ground. Yet that can sometimes be a difficult or awkward question when asked of someone who is infertile, especially because the answer, “No.” is often followed up with the question of, “Why not?” or “When will you have children?”

This leaves someone who is infertile in an awkward spot. If they answer honestly, “We don’t have children because (insert IF diagnosis here)” the question asker often feels uncomfortable because they a) don’t understand what that means, or b) didn't really want to know that much about your reproductive system. Sometimes, answering the question honestly also leads to well-intentioned but uneducated advice: “Well, I am sure if you just relax, it will happen” which is crushing when you have a medical diagnosis for a condition that prevents you from having children. It implies that “just relaxing” will take your disease away.

I’d like to change all that. I would like people to feel comfortable answering the often asked question. I would like people know and understand infertility and everything that goes with it. If the general public has an understanding of what infertility is and what the treatment options are, as well as an understanding that anyone can be infertile, it will lead to more compassion and understanding all around.

This is why, when my online friend Meagan offered to guest post on this blog, I was delighted and immediately took her up on her offer. It is important to understand everyone’s story and diagnosis, to hear their own perspective and outlook, to better understand what other’s go through so that we may be more sensitive, more understanding and more supportive.

Let’s break the silence about infertility together. So everyone, meet Meagan!

Tell us a little about yourself. I am 30 and hubby is 32. We have been married for 2 years, but have been together for almost 10!! We live in the Deep South. In the two years we have been married, I have watched (almost like an outer body experience) my body fail me. Right after we were married (two weeks) I was diagnosed with a dermoid tumor that had to be surgically removed. During that surgery it was discovered I had Stage 2 Endometriosis. We were told that if we were going to have kids, it was now or never. We never got the "honeymoon" period of being newlyweds. We had a missed ectopic that resulted in another surgery to remove my right tube less than a year after my previous surgery. This has left me with an abnormal right ovary (I do not ovulate from this side) and a poly-cystic left ovary and a left tube. In literal terms, I am at 50% capacity on natural TTC. 

The topic of infertility is often a taboo subject, why do you think that is and what do you think we can do to change that? I think it's because it's uncomfortable to talk about. It's deeply personal. IF consumes who that person is, and no one knows how to deal with that. To change that perception, we need to educate. I operate under the rule that I cannot get upset or mad at anyone if they say something insensitive because they do not know what I am going through. In that regard, I try to live my life according to that thought. I cannot walk a mile in someone else's shoes if I make no effort to understand what they are dealing with. That requires me to educate myself and LISTEN. I think if we can reach the "everyday" person we will make better headway in raising awareness of IF.

How long have you been trying, what is your diagnosis, what treatment methods have you tried (and if you feel comfortable) what has been the financial cost of treatment? We have only been trying a little over a year. In that time, we have been pregnant once that ended in a missed ectopic. That, in turn, ended up in emergency surgery because of a partially ruptured right tube. Our IF issues are strictly on me, the double whammy of Poly-Cystic Ovarian Syndrome (PCOS) and endometriosis have made it so my RE was amazed we got pg in the first place. Right now, I am at the very beginning of my IF journey. We are doing Clomid (I am on my third cycle now) with TI (timed intercourse) and trigger. Our IF journey will lead to IVF, we were told that in our initial consult and it hasn't changed. It knocks the wind out of your sails to hear that. Financially, even doing TI (which is cheap in comparison) is still quite expensive and very time consuming.

Many people have ideas (or misconceptions) in their head already of what treatment will be like. Did anything about treatment surprise you? Oh gosh, yes! I remember going into our consult with the RE thinking "this is it! We are gonna get our baby!!" I figured I would swallow a magic pill and end up pregnant. I was COMPLETELY wrong!! I didn't think that it would be so time consuming. I have to plan my life around monitoring appointments, BDing, etc. It's crazy!! I, in essence, feel like a lab rat every month. Also, I hate needles and in IF, your life revolves around them.

How does being infertile affect your life? IF consumes my life. No matter how hard I try not to let it, it sneaks in and takes over. The thing about infertility that no one thinks about is that it IS a disease. It affects a person physically, mentally, and emotionally. I thought I had a lot of triggers in life being a loss mom, but adding IF on to that and it's ridiculous!! I have been told so many times that I need to relax and reduce my stress and I will magically get pregnant. No, I will not if my ovary does not produce a good enough egg. I think that is where there is a disconnect. Even my hubby thinks that if I reduce my stress, it will be "fixed". IF doesn't just go away because stress is reduced or you lose weight or get drunk. It is still there, lurking, waiting to remind you of what you cannot do.

What made you decide to “come out” about your infertility? OR Are you open about your infertility? I think for me, it was because I didn't want to handle the questions. Those that knew about our loss were already asking if we were going to try again. I wanted to cut those off at the pass if I could. Not to mention, where I live in the Deep South, having children is a right of passage. We (women) are raised that having children is the greatest blessing we can have. I believe that is true, but I do not think that loss moms or IF moms need to be looked down on because we cannot do what others can. I do not go around shouting that I am infertile, but if someone asks, I am very open about what we are dealing with. I do not believe in sugar coating things and I lay it out straight. It tends to make people think about those probing questions b/c sometimes the answer is not what they want to hear.

Everyone knows that October is Breast Cancer Awareness Month but few people know it is also Pregnancy Loss and Remembrance month. As someone who has experienced a loss, what do you think is the most important thing for people to know in order to support someone close to them who has experienced a loss? I just wrote about this in my blog post. I think the most important thing to do for someone who has experienced loss is to listen. Be present. There is a lot of stigma associated with pregnancy loss. Loss moms experience a lot of guilt b/c they feel it's their fault their baby died. It's not. Being there, being present, and supporting loss parents during this raw time is the best thing to do. Do not ask if you can do something, do it. They will thank you, after, when they can breathe again. My best friend drove 2 hours to be with me after our loss. I could hardly say two words to her, but she was there for a whole weekend to help us. She cleaned, brought me flowers, and held my hand. I will never forget that as long as I live. She did not trivialize what we went through and she held on to our memory with us. A good thing to do is, if you know loss parents, to light a candle on October 15th. It is National Infant and Pregnancy Loss Remembrance Day. Light a candle in honor of a child and let that parent know. It will mean more to them than anything. Any time you can mention their child, you are validating their loss, reminding them you have not forgotten.

What is something you would really like people to understand about infertility? It doesn't go away if you "just relax" or "go on vacation" or "get drunk". It is a disease like diabetes. It's always there and for some it requires taking daily medications to have a body even marginally ready for pregnancy. Just for IF, I take 5 different medications and supplements to prepare my body. I have been doing this since July. It sucks to be reminded daily that I take this pill b/c this is low or I take this b/c my cycles are stupid. It will never go away and because of everything we are having to go through, hubby and I are talking about whether we want more than one child. This is something those unaffected by IF will never understand. It's heartbreaking and soul shattering and physically exhausting. It's a roller coaster with more valleys than peeks, but it jerks you around hard. It's degrading, demeaning, and plants a scarlet letter across your chest. It's scars, tears, and mourning of hopes and dreams. Mostly, it's lonely. Couples have been cast off the island of the fertiles. They have been relegated to the island of misfits, where their intimate life is figured down to a science.

Thanks so much for letting me do this!! I appreciate the opportunity. 

The Walk of Hope

"The name "Walk of Hope" embodies the emotion that most people living with infertility feel. They are hopeful their dreams of family come true. Some hope to simply find a peaceful resolution to their infertility journey. A Walk of Hope is an event that represents the infertility journey—a series of small steps, each one filled with hope and a reminder that no one should walk on this journey alone." source

On Saturday the 20th, I went to Resolve's Nor Cal Walk of Hope and it was an awesome experience. For those who don't know, Resolve is The National Infertility Association. They provide support and resources to people with infertility, treatment, those who have experienced a loss, those going through adoption, resources for friends, family members and so much more. They are an awesome resource and advocate for those struggling with infertility.

I got to the State Capitol at 9am and met up with my sister and niece, checked in and then walked around a bit. There were booths for the local IF clinics and they were giving out all kinds of free gifts; water bottles, t-shirts, pens and paper, reusable grocery bags with their logos on them and Resolve was giving away free FRERs and OPKs! There were also booths for support groups, and a booth for The Art of IF.

 

 

Then, a new friend Janell, met up with us. It was really nice to meet someone in real life who is going through all this and understands the struggles and ups and downs of infertility.

Around 10am The Resolve staff and MC for the event started the rally and the Sac State cheerleaders got everyone warmed up for the walk. There were prizes awarded to the team with the most people, best dressed fur baby and the team that raised the most money for Resolve. Then it was time for the walk to begin. Everyone lined up with their teams and walked through a big group of cheerleaders cheering us on. It was like at a football game, when they announce the players and they run through the double lines of cheerleaders - pretty cool!

One of the cool things was that there were women with babies and pregnant women there as well. One of the pregnant women was wearing a shirt that read: "5 Years and 4 Cycles of IVF" it was written across her baby bump. The back of her shirt read: "Don't ever give up." I love to see that those who have struggled with IF hold the rest of us and our feelings in their hearts. We are still supported and cheered on by those who have finally had success.

It was a really cool experience and I am honored to have been able to take part in such an awesome event.

Guest Poster: Infertility and Adoption

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One of my biggest goals, in being open about my infertility, is to spread awareness and I love being able to do so through this blog, especially when it becomes an outlet for people to tell their story and offer their perspective. A week and a half ago, I participated in The Walk of Hope (post and pictures coming soon) and also had a dear friend volunteer to share her story here.

Leah and I became acquainted through the online infertility community and she and her husband have decided to pursue adoption earlier than they had originally planned, due to infertility. Without further ado, here's Leah!

I’d like to start by thanking Sam for inviting me to share my story. IF is not something that is often thought of or discussed, but it’s something many of us struggle with. And while I am so grateful for the different options that are available now to “treat” infertility, it’s something that becomes a part of you and forever changes the way you think and view the world.

How long have you been trying, what is your diagnosis, what treatment methods have you tried (and if you feel comfortable) what has been the financial cost of treatment?

I stopped taking birth control in November 2012 and we started trying in earnest in January 2013. After a year without success, we went to have testing done at the RE. Unfortunately we were diagnosed with unexplained infertility, which essentially means that the testing is not advanced enough to actually be able to define the cause. We both had some borderline lab abnormalities, but nothing that was obviously the cause of our IF. Prior to having IF, I had decided that I never wanted to undergo IF treatment, so it was quite the internal struggle after hitting the year mark and trying to decide what to do next. However, in looking up adoption, I realized what a huge financial commitment adoption is, so we decided to do a few treatment cycles of clomid/IUI before pursuing adoption. Unfortunately my first cycle got cancelled due to over-response on the low dose clomid (which is why you NEED to be monitored while on clomid. I had 6-7 follies on 50 mg of clomid; there was no way I would have known without ultrasound monitoring). The next 2 cycles we had 1 and 2 follicles respectively and were able to do the IUI, however unfortunately both ended in BFNs. We were lucky enough to have insurance coverage for testing (except for random bills that got rejected ~$5-600), but treatment is 100% OOP for us. For those three cycles, with one cancelled, we probably spent between $3-4,000.

How has infertility affected your life?

 Infertility has had a huge effect on my life. Many negative, and some that are positive. I have never been as sad/close to depression as I was while coming to terms with IF and going through failed treatment cycles. I feel like it’s also made me more pessimistic/bitter. Sometimes it’s hard to imagine that good things can really happen when you’re faced with so many failures. On the positive side, I do feel like I’ve become more empathetic. You never have any idea what people are going through. My decision to do treatment after deciding that I “never” would also helped me to appreciate how easy it is to judge people’s decisions, but unless you’ve been in the place to have to make that decision, you have no idea what you would really do. I think that’s a really important thing to keep in mind instead of making snap judgments about others. Another positive is that through IF, I have met the most amazing, supportive people.

What is the hardest part about treatment?

 The BFNs. As hard as natural cycle negatives are, the treatment cycles are so much worse.

What made you decide to “come out” about your infertility?

I decided to come out about my IF because I’m a pretty open book. Plus I hate the stigma that IF has. If you tell someone you have diabetes or had appendicitis you get offered sympathy. If you tell someone you have IF they tell you to “relax” or “just get drunk.” Plus, I felt like I was carrying around this terrible burden that I couldn’t share with anyone. There are just certain situations that are difficult to be around while struggling with IF. And at least if people know, there can be some understanding about why you might not be able to hold your friend’s newborn baby or why you might leave a baby shower a little early. Luckily, everyone has been super supportive since I’ve come out about our IF.

What made you decide to move on from infertility treatments to adoption?

Adoption has always been something that I’ve been interested in. In an ideal world, we would have had 4 bio children and then adopted or fostered once our kids were older. So when it came time to decide, IF treatment or adoption, we were happy to go ahead and get testing done. If they could just tell us what was wrong and there was a treatment/fix for it. Unfortunately, we got the dreaded unexplained IF. Which in a way gives you hope that maybe someday you’ll get pregnant naturally and you just need more time, but in another way just says they don’t really know what’s wrong or how to treat it. As I mentioned above, the only thing that really pushed us towards IF treatment in the first place was cost. After a few failed IUI cycles, my husband and I had to sit down and have the talk about whether we were willing to go forward with IVF or adoption. I know that people do more IUI cycles than we did, but being 100% OOP, we just needed to do something with higher success rates. The pricing between IVF and adoption around here is about comparable, especially if you have to do more than one cycle. And since adoption was what was really in my heart rather than more IF treatment, we decided to go ahead with adoption at that time.

What has been the most difficult part of your adoption journey?

I think the two most difficult parts about adoption are the financial burden and the unpredictability. Going with domestic infant adoption, you’re looking at pretty significant costs, especially when you don’t make tons of money and have a lot of school debt.  We’ve had to make pretty significant changes in our money spending patterns – missing my good friend’s wedding in Mexico being one of them. We also have looked into more unique ways of saving money like plasma donation. Now, don’t get me wrong, I do not regret any of these things for one second and it is SO worth it. But on bad days it just seems unfair to think of much you are financially invested into something that for many people happens for free. Plus then after you have this huge investment you still have all the same costs that other parents have. The unpredictability was also a huge struggle for me. At least with IF, I knew approximately when I was going to be disappointed every month. With adoption, you can go from having a totally normal day, to finding out that a baby was born and they need to know rightthissecond if you’d be interested, to being devastated that the mother chose someone else all within a 24 hour period. It’s really hard to reconcile all of those feelings and still go about your normal day. And I guess I’ll add a third thing that I’ve struggled with: that feeling of not being worthy. At least with domestic infant adoption, it’s the expectant mother who hand picks which couple is chosen. Which is great, I’m happy that she has the opportunity because I’m sure that makes this terribly difficult decision just a little bit easier. But on the other side as prospective adoptive parents, every time a parent chooses another couple you suffer from that gnawing fear that you’re not good enough. And maybe you aren’t really meant to be parents. As someone who has never in my life won a popularity contest, I had many days that I feared that we would never be chosen. Even though in my heart I KNOW we’ll be great parents.

What is something you would really like people to understand about infertility and moving on to adoption?

My biggest pet peeve is the countless number of people who like to tell you about their friend xyz who adopted and then all of a sudden got pregnant. This bothers me both from an infertility perspective and a hopeful adoptive parent perspective. First, from the infertility standpoint, this is essentially saying that relaxing or not trying is the cure for IF. Which, clearly it is not. And it’s so hurtful that people think that’s an okay suggestion. And secondly, from a hopeful adoptive parent standpoint, this REALLY bothers me. To me, if feels like people are saying that you’re just adopting in hopes of having a biologic child. People saying that makes it sound like the child that I hope to adopt is not as desired as the child I could carry biologically. And that is absolutely and completely not the truth. I hope and dream for this child that I can adopt. While I may or may not ever have a biologic child, which is something that is completely separate from my desire to adopt. So please, don’t ever, ever tell someone going through the adoption process that now they’re going to get pregnant.

BE the Change

Mahatma Gandhi said: "Be the change you wish to see in the world."

He was right. If you want things to change, you have to find your voice and make the change. 

For a long time I have been complaining about the fact that the law in California that mandates the coverage of infertility treatment, specifically excludes the coverage of IVF. It makes me angry and it's unfair. How can a medical procedure not be covered by medical insurance?

I have complained, and complained and COMPLAINED about how ridiculous this is. We do not want to do IVF (it's not exactly a bag of laughs). We are not opting to do IVF rather than have a child naturally. We have no option to be able to conceive except through IVF because I have a medical condition.  I have whined and moaned and obsessed about the fact that IVF isn't covered by insurance, but have not actually tried to do anything about it because..well...how? How can one person make a difference?

Then I saw a news story on change.org and a light bulb went off. I CAN make a difference. I CAN be heard and I can make sure that others are heard as well.

I have created a petition to change the law that excludes IVF from coverage. You can be the change and sign it and let your voice be heard too! 

Let your voice be heard by clicking here.

The Waiting Place

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The first time I heard Dr. Seuss's Oh, The Places You'll Go! was at my high school graduation brunch. A friend read it aloud to all of us and I have found, throughout the years, that it applies to pretty much everything in life. There will be hang ups. There will be hard times. There will be times when you just have to wait. Right now, I am in The Waiting Place. It happens a lot during infertility treatment.

When you first go to see a Reproductive Endocrinologist (RE) you are gung-ho and ready to go. You have a long consult, ultrasound and the doctor orders lots and lots of tests. And then you just wait.

After what seems like forever, you finally start your first round of treatment and for the first two weeks there are a slew of ultrasounds and medications and blood work until you are waiting. Again.

Any new diagnosis or treatment plan change due to any problems that come up along the way? Guess what? You have to do some more waiting!

It seems like there is always something for which you have to hurry up and wait.

Some of you have asked, "When are you doing your IVF?" That is an excellent question and one I wish I was able to answer. We had hoped to be able to "cycle" in August but it looks like that will have to be pushed back a bit. Right now, we are saving money and applying for grants. So here we sit, in the waiting place, hoping to escape soon!

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If you are interested in helping us out of "The Waiting Place" click the link "How to Help" at the top of the page!

Citations

The Best Thing About Being Infertile

Often times in our lives, we focus on the negative things. It's easy to do. It's easier to give in to the negative emotions, easier to wallow in our sorrows. It is hard to remember that for every dark cloud, there is a silver lining. While there are many difficult things that go with being infertile, there is one spectacular thing: the community.

As I have mentioned before, there is a large online support system for women with infertility and throughout my journey I have come across many amazing women who offer unwavering love and support.

An example of this support came for me at an unexpected moment from a woman I have never met in real life. Caroline, fellow blogger from In Due Time, made me an offer I couldn't refuse. As a Stylist for Stella & Dot she offered to host a Trunk Party to fund raise for our infertility treatments! 20% of the profit from purchases made will go towards our Quest for Baby Lane. I was so touched by her offer and surprised by her generosity for a couple she's never met. It reminded me that there is hope and support around every corner.

To participate and shop for a cause, click the link below and get to shopping! You don't have to wait until the 1st, you can start shopping online, today through August 22nd. And don't forget to share it with your friends! Look good and feel good about where your money is going!

Samantha Lane's Trunk Show

Friday, August 1, 2014 | 7:00 PM

Let's Shop & Raise Money For Fertility Treatments!

Hosted by Samantha & Caroline

Breaking the Silence

When I was first received my IF diagnosis, I did what any normal person would do and scoured the Internet for resources and answers. For hours. And days. While obsessing researching, I discovered a multitude of support networks online. It was like an underworld for infertiles! It took a while to find the right one for me but soon, I had found a group of incredibly supportive women, all at different stages in their journey and all knowledgeable about a plethora of topics revolving around treatment options, diagnosis and medications.

One of my goals (besides raising money, click here to donate), in being open about our infertility journey, is to raise awareness about infertility and what women who suffer with this disease go through. One of the reasons that Infertility is such a taboo topic is because people don't really know that much the diseases that affect a woman's fertility AND they don't understand the treatments.

To help raise awareness and combat disinformation, some of the ladies I know have offered to open up about their infertility, treatment, journey so far and plans for the future.

So, without any further ado, please welcome, my friend Kate!

Kate, How long have you been trying, what is your diagnosis, what treatment methods have you tried (and if you feel comfortable) what has been the financial cost of treatment?

·         We have been TTC since August 2011. After going off the pill and not having a period, we went to the doctor to figure out what was wrong. After a series of tests and ultrasounds, it was determined that I have hypothyroidism and PCOS. My husband also had a sperm analysis and that was deemed to be good.

o   After that we started medicated cycles.

§  4 clomid cycles

§  1 femera cycle with trigger

§  1 injectables only cycle with trigger

§  3 clomid and injectable cycles with triggers

§  1 clomid/injects/trigger and IUI

·         We discovered during this IUI that my husband’s good count is gone. The count and motility were down to basically nothing.

§  1 clomid/injects/trigger and IUI

·         Sperm count increased and had better motility

§  2 femera/injects/trigger and IUI

o   After this many cycles and no baby, we decided to take a much needed break. Financially, these cycles cost about $1000-$1200 each- including monitoring and medications. Additionally, I traveled to St. Louis Mo (4 hours away) for each monitoring appointment.

How does being infertile affect your life?

·         I have a hard time being around children nowadays. It is physically painful to see them (especially my friend’s children) and makes my heart ache. I have lost friends over this battle due to comments they have made. Recently a friend of mine who knows every step of our journey told me that she “wishes I would hurry up and have kids so we can be in the same place in our lives”. I would if I could!

What made you decide to “come out” about your infertility? OR Are you open about your infertility?

·         I was fairly quiet about my journey, but I wouldn’t say I wasn’t open. This year at Christmas my sister put together an indiegogo fundraiser for me. She was able to raise $600 and surprise me with me it. After that, I have been very open. I have a blog that I kept updated and linked to my Facebook account, but I haven’t posted since our break started.

What made you want to do IVF?

·         We have not decided to move onto IVF at this time. Right now we are seriously considering a childfree lifestyle.

What is the hardest part about treatment?

·         The hardest part about treatment would be all the hormones raging through you. They gave me the worst mood swings ever!! I felt so bad for my husband.  Look up ecards on Clomid and you will understand. J Honestly, it really took a toll on my marriage.

What is something you would really like people to understand about infertility?

·         Infertility is a heartbreaking disease. Please be sensitive about your comments, even those about your own children. There are people out there who would love to be in your shoes.