Infertility Never Seems to Go Away

Infertility never really goes away. That’s one of the truths we’ve learned as we’ve collected stories over the past four and a half years. It can move below the surface for a time but it always comes back up. Some days and months are easier than others. When you’ve been dealing with infertility as long as we have, you can even go for years with everything being pretty okay. Then, the pain and anxiety come rushing in again.

While you’ve heard plenty about the events we’re hosting and the new projects we’re launching, it’s been quite some time since you’ve really heard from us, Maria and Elizabeth. In honor of learning that we’re receiving the 2018 RESOLVE: The National Infertility Association’s Hope Award for Innovation, which recognizes an “individual and/or organization/corporation who have demonstrated the creation and application of an innovative product, service, or medical procedure that has enhanced the lives of those diagnosed with infertility,” we’ve decided to speak the truth about what life with infertility is truly like for each of us these days. First up, Elizabeth. 

The ART of Infertility will receive the 2018 Hope Award for Innovation.

I see them as I round the corner. A group of children dashing across the lawn. Their presence and the long line of cars along the curb tell me that this get-together out our friends’ house isn’t the small affair I was led to believe it would be. Before I can make it to a parking spot, my twins cross my mind. That group playing on the grass should be larger by two. It would be if I hadn’t had a miscarriage. The tears come, as they often do these days. At least once, usually twice, sometimes three or more.

I’ve now been on a break from trying to conceive for nearly as long as the five years I tried.   I’ve been dealing with infertility almost a quarter of my life. After my diagnosis the first few years were the hardest. Then I began attending, and later hosting,  a RESOLVE: The National Infertility Association peer-led support group. I found my tribe. Life improved again when Maria and I developed The ART of Infertility.  I was no longer alone. I felt heard, seen. Seven years later, I’m feeling invisible again.

I think of what my children would be doing today at 4.5 years old if they’d survived. Milestones in the lives of my friends and family mean fresh wounds for me. Two of my best friends send their daughters off on the school bus together each morning. My sister mentions volunteering with them at school on popcorn day. Several of my last remaining friends without children are moving into parenthood now. I’m thrilled for them but I worry about what it will mean for me. How it will change our relationship.

I already avoid many social situations with parents and children I love. I’m afraid I’ll become further and further isolated. The space that I’ve occupied with my friends without children has been safe but now that safety is jeopardized.  I don’t want these things to hurt me the way they do. Each day is difficult in a way it hasn’t been in years. I don’t know how to work through these emotions when I feel like I already try so hard. I have many tools at my disposal. My art, my therapist, my work with the ART of IF. It scares me because I feel like I need more. What will it take? Or maybe I won’t ever feel better. Then what? Will I feel this way every day? Feel this stress, this heartache? Do I even truly want these feelings to go away? If they do, will it mean that I have lost the connection to the children that I wanted so badly and had for only a very brief time before they went away?

Elizabeth, curating Reimagining Reproduction, which debuted in LA during the month of June.

Working in the world of infertility has become my passion but I find that it’s now sometimes hard to personally relate and to feel relevant. I’m no longer in treatment but I’m not firmly in the camp of the childfree. This break I’m on has no end in sight. Maria and I work so hard and feel the work we do is so important but it’s hard to see so many others in the community move forward when we feel like we’re at a bit of a standstill in our own lives. I feel burnt out, exhausted, and many times I feel left behind. Receiving the 2018 RESOLVE Hope Award for Innovation comes at a time when I really need a boost. I need some wind in my sails.

Maria and I see the impact we make on others when our exhibits make them feel seen. Receiving the award from RESOLVE makes me feel seen at a time when I’ve really been struggling. The award is especially meaningful to us because RESOLVE brought us together when we met at Advocacy day in 2014. We’ve done so much in a short time but there is still an incredible amount of work to do. We hope that this recognition from RESOLVE will make more people aware of the work we are doing so we can continue to make experiences of infertility visible through art.

Maria (left) and Elizabeth (right) at Utah Infertility Resource Center’s gala, where ART of IF partnered to auction off pieces of patient-created art.

I ask that those of you who can relate to what I’m feeling, reach out. Let’s be there for each other. We don’t need to do this alone.

 

Persistence in the Age of Resistance

Today, May 18, is Infertility Advocacy Day. This year, RESOLVE: The National Infertility Association, is teaming up with the American Society for Reproductive Medicine. Nearly 250 constituents have gathered from around the country to fight for improvements for those living with infertility. Long-time advocate, Risa Levine, is among them and shares this message with us as today’s guest blogger.

To my fellow advocates,

We are at a strange place in our history for women of our generation.  After the dormancy of the post Viet Nam war era, we are finally seeing a reawakening of political consciousness, a resurgence of social activism in an era when most public engagement has been reserved for Super Bowl ticker tape parades. We are seeing people take to the streets outside government offices, we are seeing hundreds of thousands of women marching all over the country. And we are seeing crumbs of response. Bill O’Reilly is history. That’s something.

Most of us don’t remember the sixties, a time of anti war protests, suspicion of government, overthrowing of a well established social order. A time when “burn your bra” was not just a symbol or catchphrase, but a revolutionary, engaged act of actual resistance to social norms that far eclipsed the message attempted to be sent by wearing knitted pink pussy caps.

But for the most part, the resistance agenda has been reactionary, one of anger, fiery Roman candles in the night. An affirmative legislative agenda has not quite yet been identified and the methodology has been murky. This era of #resistance was triggered by one man, and the mistreatment of one woman. But there are myriad inequities that have been brewing for a long time. Occupy Wall Street reflected those divisions but failed to achieve meaningful change beyond sloganeering. Similarly, the signs at all of the recent marches range from reproductive rights to immigration to LGBT rights to guns – while all require respect for people, the only proposed solution, dump trump, doesn’t address the underlying problems.   “Resistance” alone, is not solutions-based.

Risa wth Gloria Steinem, her first role model, getting out the vote in PA

Anger – when properly directed – is good. Anger can be motivating. Anger can spur people to turn off the TV and take to the streets. But that “fight or flight” adrenaline response to anger without proper outlets, a cogent agenda and a clear end goal, can become unhealthy. And unrequited. The problem with resistance, like the mantra of the 60s, “never trust anyone over the age of 30,” is that it will, by definition, fail, as the aging process is scientific fact.

While our efforts to address the fundamental unfairness that is experienced by infertility patients should be – and because of some of our advocates’ efforts sometimes is – an issue for #resistance, it is more an exercise in Persistence. A diagnosis of infertility IS a pre-existing condition that could bar one from obtaining health insurance if the House legislation were to pass the Senate, but even the most liberal outlets neglect to include infertility on their comprehensive list of diseases that would bar infertility patients from coverage: we have much work to do to educate even our natural allies. Let’s not forget that.

However, when we hit Capitol Hill, we aren’t coming only from a place of adrenaline-producing anger. Anger at the unfairness, sure. But we aren’t acting merely in opposition to the current zeitgeist. We aren’t seeking confrontation. And we aren’t simply fighting a misogynist agenda. We are promoting education, family values, long term protection and science.  We are seeking to right a wrong practiced by both parties for decades. We are in it for the long game.  We are fighting for families. For traditional values reinforced by modern scientific advances. Love and Science, hand in hand. We must be above partisanship. We are above the divisions in this country. We personify Persistence.

Risa with Hillary Clinton in New York City: Discussing Matters of State.

Whatever your personal feelings about where we are at this very, very historical juncture, on May 18, stay focused on the positive. We are advocating FOR something. For more rights for ourselves and for our families. For future families.  For our military. For the safety and integrity of our bodies. We come in peace – we simply need to know that our health concerns are being addressed. We do and we will exercise our voting rights if we aren’t heard, but we come as constituents with problems that Congress can address. Ask them for their support. But don’t leave without their understanding.

 

 

Giving Tuesday as a Not Quite Non-Profit

We are working with our attorney to finish up the last of our final paperwork for filing as a non-profit. We are excited about what this will mean for the sustainability of The ART of Infertility (ART of IF) and the work we do to educate about the experience of infertility and provide a creative outlet and community of support for those living with it. For those of you new to ART of IF, or who need a refresher, here’s a link where you can learn more about our mission and our team.

A participant works on a memory box at an art workshop in Ann Arbor, MI.

A participant works on a memory box at an art workshop in Ann Arbor, MI.

Our articles of incorporation were filed in June. This means that, considering that our final paperwork is accepted and non-profit status is granted (and we have no reason to believe it won’t be), any donations will be tax-deductible retroactively to the date they were filed. Long story short, you give, it will be a future tax deduction.

However, we have really been struggling with asking a population who has already sacrificed so much, to give more. Many of you have to pay out-of-pocket to even get testing to receive an infertility diagnosis, let alone have an attempt to build your family through treatment or through adoption.

You scrimp and save, give up the large and small luxuries in life, max out credit cards, take out home equity loans, just to have a chance to have what comes so easily and virtually free to most, a child.

So, if you’ve passed the point in your fertility journey where every penny counts, or have access to insurance that keeps your out-of-pocket costs low, then yes, by all means, we could definitely use some cash!

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Our current storage space shortly after we moved in. It’s now filled to the brim and we need an upgrade!

Thanks to those of you who have generously shared your artwork and stories with us, we have an urgent need for a bigger storage space for our artwork and art workshop supplies for 2017. Ideally, we’d like a space that also allows us prep area for exhibits and workshops. You can help us by giving to our general fund at this link. Any amount, large or small, is greatly appreciated. Seriously!

If not, we totally understand. Here are some free and low cost ways to contribute to ART of IF to and the work we do to benefit the infertility community.

  1. Ask friends and family you think would be interested in ART of IF to follow us on social media. We’re on Twitter and Instagram @artofif and on Facebook. You can learn how to ask your friends to like our page on Facebook by following these instructions.
  2. Share a favorite blog post from ART of IF on social media.
  3. Send us your infertility artwork, permanently or on loan, so that we can share it through our exhibits, blog, and website. You do not have to be a professional artist. We welcome any form of expression by those of any skill level.
  4. An image from the series, "Infertility is the Worst" by Kelly Zechmeister-Smith

    An image from the series, “Infertility is the Worst” by Kelly Zechmeister-Smith

    Schedule a time to share your story with us via an oral history interview. Interviews can be conducted in person or via phone or Skype.

    Maria conducts an oral history interview during Advocacy Day events in Washington, D.C.

    Maria conducts an oral history interview with project participant, Angela,  during Advocacy Day events in Washington, D.C.

We consider it an honor and a privilege to collect and share your infertility stories through our art exhibits and oral history project. None of what we do would be possible without your participation and we are grateful every day for what the gift of your stories allows us to do. Please help us continue our work by contributing to ART of IF now.

All the best,

Maria Novotny and Elizabeth Walker, Co-Directors of The ART of Infertility

We Are Strong Women

No matter who you voted for, waking up last Wednesday morning morning it was clear: the world has been changed. For Elizabeth and me, this took on particular meaning as we finalized our presentation for Merck KGaA’s As One For employee education day, an event devoted to Merck staff understanding the perspectives of patients using their products.

We made the trip to Switzerland with six suitcases and two backpacks full of art and supplies.

We made the trip to Switzerland with six suitcases and two backpacks full of art and supplies.

Sitting in our Coinsins, Switzerland L’Auberge Salon (aka – our small but quaint hotel room) – we decided to devote this presentation to all the infertile women who have had to struggle to fight for their dreams, fight for their passions, fight for a child. In honor of all of you who have graciously shared either your time, resources or both to The ART of Infertility – we dedicate this to you – the infertile but ever strong woman.

Here is a bit about our own personal stories and how we have found strength in our infertility.

-Maria

Elizabeth’s Story.

My husband Scott and I met on New Year’s Eve 1999, married in May of 2004, and five years later, decided to add to our family by having a baby.

I went off the birth control pill in March of 2009 and started charting my cycles. My chart was a mess. Definitely not what you want your chart to look like while trying to conceive. By fall, my chart was looking better but I was finding that the time between ovulating and starting my period wasn’t long enough to be optimal for implantation and to sustain a pregnancy.

My first chart off birth control.

My first chart off birth control.

Right around that time, Scott’s sister, Shelley, got sick. She was the recently divorced mom of three little girls. The girls began spending Shelley’s custody days with us. Suddenly we were thrown in to sleepovers, play dates, homework, and bath time. We were the ones to tuck them in at night, soothe them when they woke up from nightmares, and nurse them back to health when they were sick. The circumstances were terrible, but having them living with us was one of the very best experiences of my life. Sadly, Shelley died in January of 2010.

That March, their dad moved them to Minnesota. With the girls nearly 600 miles away, we were devastated. This was made even worse by the fact that it had been over a year since we started trying to conceive and we were officially dealing with infertility. I wondered if the time that the girls lived with us would be the only time we’d ever parent. We needed to see a doctor to get started with testing and treatment but took some time to heal first. Well meaning friends and family, not knowing we were trying to conceive and unsuccessful, suggested that having a child of our own might help us heal. While we wanted a baby, it was no replacement for the precious nieces that we were longing for.

By the end of the year, we were ready. At Thanksgiving, I was headed to testing and my sister she announced she was pregnant her second month of trying to conceive. We spent Christmas of 2010 with the girls in a hotel in Minneapolis. The entire trip, I was receiving test results and scheduling more appointments.

Between the end of 2010 and the end of 2012, I was diagnosed with Luteal Phase Defect, Endometriosis, and Diminished Ovarian Reserve. We endured five rounds of oral meds with timed intercourse, four intra-uterine inseminations with oral and injectable drugs, I had a diagnostic laparoscopy, and I joined a RESOLVE: The National Infertility Association support group and then became the group’s host.

What I personally found hardest about infertility was being stuck in limbo as my friends and family had children, all the decisions that infertility forces you to make, and the fact that it’s an invisible disease. In order to make my infertility visible, I started creating artwork.

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The first piece of artwork I made during my IF journey.

The first piece created out of my infertility journey, made while on medical leave after an exploratory laparoscopy to remove polyps and endometriosis.

I learned that others were also using artwork to deal with infertility and in fall of 2012, pitched an “infertility art exhibit” to the Ella Sharp Museum in Jackson, Michigan, where I live. The exhibit would provide educational info on infertility, display the environmental portraits, artwork and stories of those living with infertility, and offer an art workshop.  They said yes.

Early 2013 brought our one and only IVF cycle. My retrieval led to complications (internal bleeding and ovarian torsion) for which I needed emergency surgery. After I recovered, we transferred two of our three resulting grade 5AA blastocysts. I got pregnant, but miscarried twins early on. This all happened between the middle of February and June 1st and I needed a break after all we’d been through.

I spent the rest of the year working on the exhibit, compiling facts, making artwork, and photographing exhibit participants. I wanted to show them participating in activities other than infertility that defined them.

What I personally found hardest about infertility was being stuck in limbo as my friends and family had children, all the decisions that infertility forces you to make, and the fact that it’s an invisible disease. In order to make my infertility visible, I started creating artwork.

In February of 2014, we transferred our last embryo and I didn’t get pregnant. My husband and I had reached the end of our journey in attempting to have children that are genetically ours. We needed time to grieve and regroup with the idea that we may eventually move on to living child free or adopting from foster care. Two and a half years later, we’re still working on healing from all we dealt with. We need a bit more time to come to terms with what we’ve been through, and rebuild our relationship. However, I am starting to feel the pressure of time and the need to make a decision about how we will resolve our infertility. We are still considering living child free, especially since we have such a close relationship with the nieces we parented for a time. We are also considering using donor embryo, an option that I started considering after hearing the story of Noah and Maya, who I interviewed for the project.

In March of 2014, The ART of IF: Navigating the Journey of Infertility opened at the Ella Sharp Museum. Along with raising awareness about infertility through the art exhibit, I began lobbying for infertility legislation on Capitol Hill with my first trip to Advocacy Day in D.C. that May, where I met Maria Novotny.

Maria’s Story.

This is where my infertility story begins – at yes, believe it or not, the age of 15. I met Kevin, my now husband, at this age. Throughout high school and college, Kevin and I dated on and off. Ultimately, upon graduation we decided to get married. Both of us came from big families. In fact, my family was so large that my parents actually had my brother when I was 18. So the idea of being infertile NEVER crossed my mind. In fact, I was often warned that I would be “too” fertile. This was a joke at the time, but now is all too ironic.

Kevin and Maria with family on their wedding day.

Kevin and Maria with family on their wedding day.

After marrying at the age of 23, we moved to MI for Kevin’s job and bought a house. Soon we began nesting, adopting dogs and shortly after decided to “try”….

Months passed and nothing. No success. A year passed. And we knew something was wrong. I booked an appointment with my OB/GYN. Tests came back and it was suggested we go to our local fertility center.

We attended a consultation and left feeling completely overwhelmed. We were 24 and grappling not only with the numerous options available as well as financial cost – but also with the fact that we were trying to understand our new infertile identity. We felt paralyzed. We were living in a new state. We had no family near us. And we had few close friends. So, we decided to look for support…

But couldn’t find anything. Desperate just to meet someone else who was infertile, we turned to the internet and “came out” with our infertility. We shared our story on our local city’s newspaper and asked others if they too needed support. Slowly but surely, we began to connect with others looking for a safe space to deal with issues in a city that was rated by Forbes Magazine as “the #1 place to raise a family.”

infertility-support-grand-rapids

At this time, I found myself needing to document my infertility journey. I felt a deep desire to capture the complex and confusing feelings that I was experiencing. So I began to write. Doing so, I wrote several pieces. One of which is titled The House, a piece now in The ART of Infertility which reflects on the house my husband and I bought prior to learning about our infertility.

As I began to do more creative writing pieces, I felt an increasing connection to return to school. As a college student, I majored in English. Learning how writing could help with emotional and physical healing, I started a Master’s program focused on writing and the teaching of writing. Graduate school became a place where I could escape the pressures of not conceiving, of not becoming a mom.

We attended a consultation and left feeling completely overwhelmed. We were 24 and grappling not only with the numerous options available as well as financial cost – but also with the fact that we were trying to understand our new infertile identity. We felt paralyzed. We were living in a new state. We had no family near us. And we had little to few close friends. So, we decided to look for support…

Today, I am in the last year of my schooling – finishing my PhD in an area that I call “rhetorics of infertility” which explores how writing and art are composition practices communicating the challenges women and men face when diagnosed with infertility.

And so, while I currently am not in treatment, nor am I pregnant – I still am very much in limbo. Very much in a place of not knowing what my next move should be. I am 30 now. I have lived the past 6 years knowing that I am infertile. But the need to make a decision about what to do next is so overwhelming that I am secretly hoping it will work itself out, that my husband and I won’t have to make a decision. This hope is what we call “limbo” – the not knowing of infertility and the sheer exhaustion that comes with its disease.

***

While we both have decisions to make about further growing our families, through ART of IF, Elizabeth and I have found more happiness, and peace than either of us has had in years. The connections that we have made with other infertile individuals and families, the work that we do in helping them along their journeys, and the awareness about the patient experience that we are able to raise, has given us fulfillment. For both of us, this project turned organization has become the baby that neither one of us could have.

We shared these stories with Merck employees, followed by a Q & A. Upon doing so, our co-presenter, a fertility specialist in the UK, concluded the session. She reminded all of us that while infertility can be difficult to learn about – both in terms of its sadness and depressing nature – we need to remember that infertility can make those dealing with it stronger. She spoke to the fact that The ART of Infertility is a testament to this. That when women face adversity, they can create beautiful things. We – the infertile – are strong (and powerful) women. We were very touched by her words and the important reminder that is especially relevant in this post-election time that we are now living. Let us not forget that our challenges have the potential to make us stronger and, through the lives we live and the work we do, we have the ability to make a positive impact on our own lives and the lives of those around us.

How have you found strength in your infertility journey? We would love for you to share it with us.

After traveling all night, we arrive at Merck to drop off the exhibit supplies.

After traveling all night, we arrive at Merck to drop off the exhibit supplies.

 

 

 

Group works to educate its community and raise funds for infertility treatment.

We’ve been pretty quiet on social media since returning from San Francisco because we’ve been busy working behind the scenes. Maria has been hard at work on her dissertation and I’ve been working with a student to reorganize and inventory all of our supplies and artwork. We’ve both been working on our 501(c)(3) paperwork and working with hosts in cities around the country to plan upcoming exhibits and workshops. Those that are confirmed are on our schedule. We hope you’ll join us!

In today’s guest blog post, we’re bringing you the story of a group of infertility friends in Indiana who has put together an infertility outreach and fundraiser event in their community. They plan to provide infertility education, fun activities for kids and adults, and to raise money to help those in their group pay for treatment. Thank you Brandy and Kelly Jania, Jennifer and DJ Cavenaugh, Jessica and Steve Ziller, and Amanda and Sherman Wallace, for educating your community and sharing your stories!

-Elizabeth

Group works to educate its community and raise funds for infertility treatment.

On Saturday June 21, 2014 the RESOLVE Peer-led Infertility Support Group first met at an eclectic coffee shop in Crown Point, Indiana. It began with the intention of preventing women and couples from feeling the isolation that infertility can cause. Brandy, the group founder exclaims, “I have to be honest. I started the group for kind of selfish reasons because I needed support! I never expected to gain true friendships with some of the strongest women I have ever met!”

The group began with three women and as of June 2016 the group has seen 35 women participate at various levels. As the group passed our two-year anniversary we took a moment to celebrate four miracles and the highly anticipated arrival of one rainbow baby expected in August!

These women not only offer physical support by meeting on a monthly basis but offer emotional support and encouragement, laughter, infertility education, personal experiences and let’s not forget the “can you believe what I was told?!” support. Jennifer says “The group makes me feel normal. I don’t feel like an outcast even though we all have different journeys. With it I don’t feel alone.” Amanda shared “The group gives me hope that I can make a family and makes me feel like I am not alone.” Our support group meets on the third Saturday of every month at 10 am at Sip and is looking to offer support to any woman who may feel alone.

The flier for the Fighting for Our Families Infertility Education and Fundraiser Event

The flier for the Fighting for Our Families Infertility Education and Fundraiser Event

In the state of Indiana, IVF can range in cost from $10,000 – $20,000. Medication costs can add another $3,000 – $6,000. Indiana is not required to provide infertility insurance coverage, as it is considered “elective”. Therefore, most looking to pursue infertility treatments are forced to pay out of pocket for treatments rendered. Some members from the group decided to plan the outreach/fundraiser event, Fighting for Our Families. It is scheduled for Saturday July 30th from 10 am to 2 pm at Fire Station 2, 7905 Taft St. Merrillville, IN and will have various speakers and educators as it relates to the infertility journey. There will also be vendors selling merchandise, a silent auction, activities for children, a DJ, bean bag tournament, 50/50 raffle, t-shirt sales, a bake sale, and lots of food! Jessica shares her feelings about the event saying “I am most excited about getting information out to the public. Facts. Where to find help and where to find support. I feel the State of Indiana really lacks the resources and information to help people through the rollercoaster that is the infertility process.”

When asked about the event, Brandy states “I am most excited about seeing the community as a whole come together. I mean, how incredible to see people coming together to offer support and learn information on a topic that seems so taboo.”

This year’s event will offer all funds received to be given to four couples: Brandy and Kelly Jania; Jennifer and DJ Cavenaugh; Jessica and Steve Ziller, and Amanda and Sherman Wallace. Read their personal stories below and please consider attending the event.

Kelly and Brandy JaniaThe Janias – We were married September 19, 2008 and in November 2010 we agreed we were ready to start a family. Our 5 ½ year journey has taken us to 2 OBGYN’s, 3 fertility specialists, HSG test, 9 clomid cycles, 2 unsuccessful IUI’s, Laparoscopy, 1 cyst measuring 10 inches with 2 ounces of fluid drained, 2 successful IVF’s that resulted in miscarriages, and endless blood work. Upwards of $30,000 later, we come before you with heavy hearts and empty arms but deeply hopeful for the long awaited positive pregnancy test and then a healthy and beautiful delivery of a baby of our own. We have been together for 13 years and have both devoted our professional lives to helping people; Brandy working in Social Services and Kelly working in the EMS field. We are by no means financially well off; however, the public service jobs are not fields to enter in hopes of becoming rich. After our most recent loss on March 17, 2016 we began seeing a Recurrent Miscarriage Specialist to determine next steps which appear to be a 3rd round of IVF.

DJ and Jen CavenaughThe Cavenaughs – DJ and I decided to start trying for a family in 2009. We never expected to go through all that we have and continue to do. After trying for a year we tried Clomid and got pregnant. Unfortunately, we miscarried a week later. Through an infertility specialist we went through 3 unsuccessful rounds of IUI with injectable medications. We got pregnant again naturally; this time miscarried a few days later. We have gone through 4 IVF retrievals since then with 10 embryo transfers. 2 Frozen Embryo Transfer cycles we were lucky enough to get pregnant with twins each time, sadly both of those pregnancies ended shortly after. Our last pregnancy we conceived naturally. This was the best looking one yet! Levels rose wonderfully and we were filled with so much hope. When I went for my 1st ultrasound the nurse said after a few minutes of looking, I’m sorry, there’s nothing here. I didn’t understand how that was possible. After waiting as long as we could it was determined to be ectopic, or a pregnancy of unknown location and I was given shots to end it. All this heart break but we are still Fighting for our Family!

Jessica and Steve ZillerThe Zillers– We have been on this journey for 5 years now, which has consisted of extensive testing, surgeries and procedures including blood work, hysterosalpingogram, two D & Cs, hysteroscopy, laparoscopy and sperm count tests. In November of 2015 through the recommendation of our fertility physician we attempted an unsuccessful IUI. During the testing for the IUI we learned that Jessica has a low AMH level.  A Low AMH level could mean our time is running out as her egg quantity may be very low. The current recommendation by our physician is to attempt IVF.   IVF is very expensive and without fertility coverage the last 5 years have drained us. It’s hard to sit idly by knowing that every month that passes while we save for IVF, could be bring us closer to a sad end of our journey.

Sherman and Amanda WallaceThe Wallaces – We have been trying to conceive for 5 years. In our years of trying to conceive we have seen 4 fertility specialists and undergone numerous tests. Every Doctor gives us different diagnoses which can be frustrating when trying to identify a plan. Through the various doctors it was determined that Amanda does not ovulate regularly, at one point had a blocked fallopian tube and other recently diagnosed medical conditions that make it difficult to conceive. After testing, Amanda was placed on Metformin and did rounds of Letrozole, which did assist with ovulation but left us with negative pregnancy tests. One doctor recommended IUI treatment. With all the medications, lab and procedure cost it was just not a financial option at the time. We’re hoping that with savings and some help from fundraising that we will be able to proceed with the treatment and achieve our dream of having our own little miracle.

 

 

Myth: Advocacy Day is Over and The Work Is Done

This past Wednesday Elizabeth, myself and several hundreds of other infertility professionals and infertile individuals met with our representatives asking them to support The Veterans Amendment to the Senate Appropriations Mil-Con Bill. This bill would provide funding for the VA to offer IVF to wounded veterans. Currently, the VA does not provide IVF coverage to our Veterans. You can learn more about this injustice hereWe just learned that the Senate will be voting on this issue this week! And so, our #IFAdvocacy work is not over — it is just beginning! Please take time this week to contact your Senators and urge them to support this very important bill! 

Below, we are busting the myth that Advocacy Day is just a one-day event. We provide reflections on Advocacy Day and some strategies to help you encourage those in your infertility support network to continue this important advocacy work all year long.

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Empowering! Exhilarating! Amazing! Awe-Inspiring! 

Elizabeth and Maria at Advocacy Day's Welcome Reception located in the Russell Senate Building.

Elizabeth and Maria at Advocacy Day’s Welcome Reception located in the Russell Senate Building.

These are just a few words that can attempt to capture the overwhelming rush of energy you feel attending an Advocacy Day.

This year though was particularly invigorating given the day’s partnership with veterans and advocating for the VA to change their anti-family-building policies that provide no IVF care to veterans (click here to find out specifics of these policies). Taking on such an issue opened many doors, both on the right and the left, highlighting to staffers, legislative aides and the representatives themselves the injustice these VA policies have on family-building for military families.

At the opening reception, we were powerfully reminded by a military family the importance of advocating for sponsorship of these veterans bills. A military spouse remarked

“War has changed their family, it shouldn’t keep them from having one.”

Upon uttering these words, you could hear the gasps of emotion from the audience. Energy was filling our lungs.

And on Wednesday May 11th, we took that energy and got to work walking the hill as we wore our orange ribbons and #IVF4Vets buttons.Twitter blew up, Facebook pages blew up, even congressional reps and aids seemed a bit surprised.

Nearly 200 infertile advocates took over the hill on May 11th, changing the conversation.

Nearly 200 infertile advocates took over the hill on May 11th, changing the anticipated conversation.

But now, we are all back home. We have returned to our day-to-day, returned to hosting our support groups, returned to our own personal struggles with infertility. The question that we now need to focus on is no longer, how will I get my representatives to support better infertility coverage? We did that. We got their attention. We even made CNN.

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Jake Tapper of CNN covers our Advocacy Day and push to get #IVF4Vets.

The question is now, how can I continue to remind my representatives that #IFAdvocacy is not just a day – it is a movement for social change, a move towards family-building, a move towards reproductive social justice. How do we do this though? How do we bottle up all of that energizing spirit and tap into it on a consistent basis?

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Elizabeth, visiting Rep. Walhberg’s (R-MI) office for the third time to ask him to support #IFAdvocacy.

Think about it as a monthly bill that you have to pay (and doesn’t yet have automatic bill payment setup). Pick a date in your calandar. Perhaps it is the 11th since we met with our reps on the 11th. Give yourself a monthly alert on this date to connect once more with your represenatives. Send out an email, send a tweet. Take those business cards you received and email their aids. On Father’s Day, remind those our representatives of how hard this day can be for those looking to build their families. On Thanksgiving and Christmas, do the same. Be an advocate all year long. This takes work.

We know that it does. But if we want #IFAdvocacy and #IVF4Vets we need to hold ourselves and our representatives accountable. In the words of Rep. Tammy Duckworth, the hill is our house. Let’s be sure to demand to our representatives that infertility coverage is something we are putting in our house.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Let’s Remember Advocacy Day Is Just the Beginning

Empowering! Exhilarating! Amazing! Awe-Inspiring! 

Elizabeth and Maria at Advocacy Day's Welcome Reception located in the Russell Senate Building.

Elizabeth and Maria at Advocacy Day’s Welcome Reception located in the Russell Senate Building.

These are just a few words that can attempt to capture the overwhelming rush of energy you feel attending an Advocacy Day.

This year though was particularly invigorating given the day’s partnership with veterans and advocating for the VA to change their anti-family-building policies that provide no IVF care to veterans (click here to find out specifics of these policies). Taking on such an issue opened many doors, both on the right and the left, highlighting to staffers, legislative aides and the representatives themselves the injustice these VA policies have on family-building for military families.

At the opening reception, we were powerfully reminded by a military family the importance of advocating for sponsorship of these veterans bills. A military spouse remarked

“War has changed their family, it shouldn’t keep them from having one.”

Upon uttering these words, you could hear the gasps of emotion from the audience. Energy was filling our lungs.

And on Wednesday May 11th, we took that energy and got to work walking the hill as we wore our orange ribbons and #IVF4Vets buttons.Twitter blew up, Facebook pages blew up, even congressional reps and aids seemed a bit surprised.

Nearly 200 infertile advocates took over the hill on May 11th, changing the conversation.

Nearly 200 infertile advocates took over the hill on May 11th, changing the anticipated conversation.

But now, we are all back home. We have returned to our day-to-day, returned to hosting our support groups, returned to our own personal struggles with infertility. The question that we now need to focus on is no longer, how will I get my representatives to support better infertility coverage? We did that. We got their attention. We even made CNN.

tapper

Jake Tapper of CNN covers our Advocacy Day and push to get #IVF4Vets.

The question is now, how can I continue to remind my representatives that #IFAdvocacy is not just a day – it is a movement for social change, a move towards family-building, a move towards reproductive social justice. How do we do this though? How do we bottle up all of that energizing spirit and tap into it on a consistent basis?

13230315_10154236330306742_2925500788373099402_n

Elizabeth, visiting Rep. Walhberg’s (R-MI) office for the third time to ask him to support #IFAdvocacy.

Think about it as a monthly bill that you have to pay (and doesn’t yet have automatic bill payment setup). Pick a date in your calandar. Perhaps it is the 11th since we met with our reps on the 11th. Give yourself a monthly alert on this date to connect once more with your represenatives. Send out an email, send a tweet. Take those business cards you received and email their aids. On Father’s Day, remind those our representatives of how hard this day can be for those looking to build their families. On Thanksgiving and Christmas, do the same. Be an advocate all year long. This takes work.

 

 

We know that it does. But if we want #IFAdvocacy and #IVF4Vets we need to hold ourselves and our representatives accountable. In the words of Rep. Tammy Duckworth, the hill is our house. Let’s be sure to demand to our representatives that infertility coverage is something we are putting in our house.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

Rep. Tammy Duckworth (D-IL) speaking at the morning training session about her own personal story with infertility while serving in the military.

#StartAsking: What is #NIAW?

Over the course of this year, we, at the ART of Infertility have been busy generating new content to connect you with stories and artwork representative of infant loss, miscarriage and infertility advocacy. We have been grateful for how many of you have shared these stories on your social media pages and have engaged through commentary with this content.

This week, though, it may seem that we are a bit quieter than usual. And this is for a reason — we will be prepping stories for National Infertility Awareness Week (#NIAW).

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Beginning April 24 – April 30 (#NIAW week), we will be featuring a host of stories asking the general public to #startasking about issues and topics related to infertility — a topic that often isn’t thought of until you find yourself going through it. Given how so many fail to really realize what infertility is until they are confronted with it in their own lives, our mission during this week be to reach out to those who often have very little contact with the topic of infertility.

While many of us in the infertility community frequently share our stories and try to make infertility more visible to the general public, we believe that #NIAW offers a unique moment to connect with those who often are not infertile and ask them to join us in becoming an infertility ally.

To provide a little preview we are sharing with you all a little more information about what #NIAW is and how to begin #startasking. We ask that you, too, share this across your networks and invite future allys to engage in the conversation!

Danielle, our social media college intern, provides some #NIAW info on how others (like herself who are not infertile) can join the conversation:

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Why #NIAW?  This week is all about spreading awareness of infertility issues to people who may not be sure of what it exactly it means. Not only is it a time for people to bond over their stories and situations, it is also a time to create a conversation that can educate people on all different aspects of infertility. Many people go through issues when trying to conceive and this is the week to spread the word. You can learn more about how support the infertility community here.

What does #NIAW talk about? One message that is important to spread to others during this week is that many people go through struggles when trying to create a family and that it is okay to talk about it. When I first joined this project, I was an outsider who did not realize how many people are affected with these issues. The amount shocked me and I wondered why I didn’t know it before. It seems that many people do not feel comfortable sharing their stories because they don’t want to admit to people that they are going through fertility treatments because it would make them feel judged or “less than”. This is completely understandable because when people don’t know anything about a topic they usually resort to myths and stereotypes that are not true. This is the week to challenge those stereotypes and to give people a better understanding of the reality of infertility.

How can I become an #NIAW ally?  Ultimately, this week is all about community. It is a time where many people connect with others and create lifelong bonds and friendships that they might be lacking in other aspects of their life. Going through infertility is something that many people can’t possibly understand or relate to because they have not gone through it themselves or are uneducated on the topic. This week allows people the opportunity to meet others who understand exactly what they are going through and can talk about their situations free of judgment. It is also creating a new community with family and friends who may not be aware of the anger, frustration, and many other emotions linked to fertility problems. By starting the conversation with them, they will have the ability to learn about the emotional rollercoaster and the medical terms and conditions that surround infertility. You can check out RESOLVE: The National Infertility Association’s website for a list of tips and resources for individuals to become better educated on the topic of infertility.

How Can We Keep the #NIAW Conversation Going? Once this week is done, it is important to not let the conversation about infertility die off until this time next year. By continuing to talk and raise awareness for the issue, many people are going to feel better about discussing their own issues, allowing the infertility community to grow and expand which will give people the courage and support that they might need. Taking the opportunity to talk about infertility in your daily life will help relieve the stigmas and bring attention to the important matter. And, remember, you can always #startasking!

We look forward to launching #NIAW with you on April 24th and invite you to always #startasking!

Myth: You’re Alone in Your Infertility Journey

When I was first diagnosed with infertility, I felt like I was living on my own deserted island. It wasn’t that I didn’t want to tell people about how overwhelmed, sad, and lost that I was feeling. It was that I didn’t know who I could tell that would understand. I remember telling one of my good friends to which they responded, “Oh, don’t worry Maria. It will happen, you guys are young. You just have to give it time.”

I remember thinking, “No, you don’t understand. You don’t know how difficult it is for me to even get out of bed in the morning. You don’t know how upset I get when I see a pregnant woman pushing a cart in the grocery store. You don’t know how angry I get when I see a family taking a walk around my block. You just don’t know how deeply these little, everyday activities can trigger feelings of intense sadness.”

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Maria, with her husband Kevin, who have now lived most of their 5-year marriage with infertility.

For a while I didn’t think I would meet anyone who would understand how I was feeling. And so I started to isolate myself – from my family, friends, even partially from my husband. I felt that I didn’t have anything to worthy to contribute to conversations or events, so I just removed myself from them.

My feelings of wanting isolation, however, began to change when I made the decision to attend RESOLVE’s Advocacy Day in 2014. Tired of living on this so called “infertile desert island,” I convinced my husband to make the drive from Grand Rapids, MI to Washington, D.C. to maybe start doing something about my frustration and isolation rather than just complain about how I was feeling.

How one decision can change your life. Seriously.

While at Advocacy Day I began to feel like I was taking action to not just change my life but the life of thousands of other infertile men and women silently suffering with the disease, the most impactful takeaway were the friendships that I formed. Particularly, my friendship with Elizabeth Walker.

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Maria and Elizabeth in San Francisco, CA in July 2015 for the ART of Infertility.

For Elizabeth and me May 2014 was our first Advocacy Day. Both of us were representing the state of MI and so we spent most of the day together walking the halls of Congress handing out letters and asking our representatives to sponsor infertility related bills. Perhaps it was the experience of doing something totally out of your everyday that helped form such a strong bond. Or perhaps it was simply a friendship that was suppose to be. But whatever it was – Elizabeth and I both knew that we found another person who we could confide in and who simply got one another.

Since Advocacy Day in 2014, Elizabeth and I have worked together on the ART of Infertility. Traveling to numerous states, hosting art and writing workshops, dropping in at prominent fertility clinics to talk about the project, talking about infertility at academic conferences, and even mentoring young college interns about infertility. We are busy but being busy has also saved me – made me feel like I am being productive, no longer wallowing away on my infertility island.

I often think what my life would be like if I never met Elizabeth. Thinking about this, I get lost and overwhelmed. Our friendship has been integral to my healing, to my strength and to my commitment to always advocate on the behalf of those who are infertile. She has become not just my infertile sister, she’s simply Liz – my big sis.

And so while there are a million different reasons to consider attending Advocacy Day this year on May 11th, one of the most powerful reasons to attend is because it could quite literally change your life through the friendships you may form. If I never met Elizabeth that May 2014 during Advocacy Day, my life would not be what it is today. So, I encourage you all – if you are feeling alone, in despair, frustrated and ready to make a change – come to Advocacy Day where you will be greeted by hundreds of other infertile women and men who understand exactly how you are feeling. You will be amazed.

Advocacy Day isn’t just about coming together to advocate for infertility rights, it is also about coming together as a group that has been told their stories shouldn’t be told, their stories don’t count enough to be considered for legislative action. It is a coming together as a force of women and men who have become friends from across the U.S. to change how we think, talk, and support issues of infertility. Advocacy Day is powerful as it is a pure embodied display of how the coming together of friendships can make change.

Join us!

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Maria and Elizabeth outside the Capital Building during Advocacy Day 2015.

Advocacy Day Reflections from Jennifer

A few weeks ago I decide to take a last minute trip to Columbus, OH. While there, I was able to interview Jennifer. Jennifer was diagnosed with PCOS and Endometriosis and dealt with years of infertility before a successful IUI and the birth of her daughter, Kathryn. For the past few years, Jennifer and her husband have been trying IUIs again. Below, Jennifer reflects on Advocacy Day and why she makes the trip to Washington, D.C. each year. Thanks, Jennifer, for sharing your story.

Elizabeth

“At first I went because three of my friends were going. I was like, oh, it’s going to be a fun girls trip. I think sometimes I’m a fairly cynical person so I don’t necessarily always think that our voice is heard and that the senator really cares, but going in there and telling them what we need, what we want, and that there is a need for infertility coverage and the adoption credit, I felt so empowered. In control almost. Like I could take back control and I didn’t expect to feel that. It was a lot more emotional than I thought it would be. I think I probably did cry at some point on that day and I didn’t expect that at all. I really didn’t. I’m always sort of using humor as my natural defense and sort of hide stuff so I was really shocked by how emotional I was that first Advocacy Day.”

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“One of the things that I came away with the first time I went to Advocacy Day that never even entered my mind was that if, in twenty years, my daughter is infertile for whatever reason, whether it’s her, or her spouse, or whatever, that I could do this for her. It hit me like a ton of bricks. I could fight for her so that she never has to know this pain. So that’s why I keep doing it. More than for myself or for anything.”

“I thought I was going to make a difference for myself. That I was doing it because of my journey and what I went through. I just started thinking about Kathryn and if anything I do on that day can make it easier for her, if she HAS to walk this path, then I’ll go every year, every day, forever.”