Sperm Stories: A New ART of Infertility Project

In honor of Men’s Health Month, we wanted to announce a new ART of Infertility affiliated project! We are thrilled to receive funding and support to investigate how men rely upon and use social media when experiencing infertility. This is a project that was co-designed by our social media undergraduate intern, Kristen Mahan. Kristen will be a senior this year at the University of Wisconsin-Oshkosh majoring in digital marketing. Back in the Fall of 2018, Kristen enrolled in a class taught by Maria where she expressed interest in working more as an intern with the ART of Infertility. We are thrilled to have Kristen on our team and helping us understand how we can better support men with infertility.

All of this means, we need your help! We want to know what guys want and need from social media when experiencing infertility. Much of the content out on the web is created by and for women. While this is great and starts the conversation, we need to #flipthescript and think about the other half that need support too.

Read more about the project, follow @sperm_stories on Instagram and Facebook. Message us or email at info@artofinfertility.org and participate at the end of June in a short survey that helps us understand the content that guys want. Below are a few Q&As to contextualize the project further.

“Sperman Adventures – Volume 1” a piece reflecting on male experiences of infertility.

 

 

 

 

 

 

 

 

 

 Q: Why focus on men, infertility, and social media?

Infertility is an issue that affects both women and men but is generally stigmatized as only women’s issue. Nonetheless, it is estimated that one-third of infertility cases are the result of male reproductive issues, one-third a result of female reproductive issues, and one-third either a combination of both sexes or unexplained (“How Common Is Male Infertility”, 2016). Yet, despite men representing a significant population of the infertility community, resources have been stagnant and research has found men with infertility lacking support networks and educational resources (Petok, 2015; Gannon, Glover & Abel, 2004). Such lack of targeted support and resources has led to an increase in a sense of stigma, isolation, depression, and stress in men experiencing infertility (Hanna & Gough, 2016).

This proposed study aims to intervene in the stigmatization of male infertility by creating and testing a social media campaign directed at infertile men during the month of June, which is nationally recognized as Men’s Health Month. Rationale for a social media campaign is rooted in a 2010 study that found media campaigns can greatly produce positive changes and prevent negative changes in health-related behaviors (Wakefield, Loken & Hornik, 2010). Their study advocates for additional research around health media campaigns to test the effectiveness of individualized, targeted campaigns. Given the proposed effectiveness of health media campaigns, particularly for stigmatized demographics, this study seeks to better understand the educational resources and support offered to men experiencing infertility.

Q: How do I participate?

Participation is easy and completely voluntary! If you do participate, you are eligible to receive a $10 Amazon gift card. To participate, please contact us at info@artofinfertility.org because we need you to sign a consent form. A consent form is needed because this is a project affiliated with a university. This means we will be talking and sharing our findings with other colleagues and infertility researchers. You can participate using a pseudonym or “fake name”, and we can talk more about how you may like to participate via email or a phone call. You must “sign up” to participate by July 10, 2018.

Q: Why is the ART of Infertility running this study?

The ART of Infertility does many things beyond hosting art exhibitions. Much of our mission is to learn from the stories and people we meet through our work hosting infertility art exhibitions and breaking the silence around infertility. To do this then, we work with universities to run research projects. This project is an opportunity for us to better reach men struggling to build their families. This means we welcome straight men, gay men, and single men to participate. Help us understand the content and community you need in online/social media spaces.

Also, as a study funded through an undergraduate research grant, your participation will help mentor Kristen, our intern, looking to run social media health campaigns once she graduates in 2019. This is a joint effort that seeks to benefit everyone involved!

The ART of IF / Sperm Stories team: Elizabeth (left), Kristen (center), and Maria (right).

 

 

 

 

 

 

 

Q: So when do I start?

Now! Really, posts and content have already been made “live” on both our Facebook and Instagram pages. While this research project technically lasts throughout the month of June, we will be continuing to populate and keep this account alive. We are committed to learning from our participants and building a community that talks and features male perspectives of family building. Help us continue the conversation by following these accounts today!

My Four-Year Break from Infertility Treatments

by Elizabeth Walker

Four years ago today, I put the final pieces of artwork on the wall and opened what became the first exhibit of The ART of Infertility.  There’s no way I could have imagined then, what this organization and the people I’ve met through it would become to me.

The remnants of my IVF retrieval and frozen embryo transfers, included in the piece, Crib with Medication Boxes.

I’d just completed my final treatment cycle, a frozen embryo transfer, which was unsuccessful. I didn’t know where I’d go next, but I knew I needed time and space to figure things out. The ART of Infertility has been that for me over these years. Even better, it has allowed me to give others their own time and space so that they may also use art as a source of healing.

In the past four years, my dear friend and co-director, Maria and I, along with a team of dedicated and passionate interns and volunteers, have traveled to 14 states and the District of Columbia (plus Switzerland) and held 22 exhibits and 23 workshops, and given 12 presentations. We’ve collected and shared hundreds of infertility stories through art.

I’m forever grateful to those of you who have supported this organization. To you who have spread the word, attended our events, allowed us to come into your homes to interview you, and have parted with your artwork so we can travel with it and share diverse stories of infertility, we thank you. To our exhibit hosts, partners, and sponsors, thank you for helping us amplify the voices and experiences of those with infertility. To our families; Scott, Kevin, and our pups­­, who miss us both when we’re home and when we’re gone, thank you for understanding what this work means to us.

We have exciting exhibits and programming this year. We just wrapped an amazing month in Salt Lake City, Utah and in Oshkosh, Wisconsin. In a matter of weeks, we’ll be in Madison, WI and we will spend the month of June in Los Angeles and the month of October in Chicago. We feel lucky every day that we get to do this work, even luckier when we’re jet-lagged and our muscles are sore from hauling suitcases, because it means we’re reaching further than we ever imagined.

I set out to be a parent, and co-parenting this organization with Maria has made every bit of my infertility journey worth it.

Check out our upcoming schedule, current calls for art, and find out how you can get involved at artofinfertility.org.

Undeniable Proof of Infertility – Memorializing a Journey

Traveling with this project, Elizabeth and I have had the privilege to listen and learn about all of you and your infertility stories. More recently, a few of you have been kind enough to share your stories and art with me for my dissertation “The ART of Infertility: A Community Project Rhetorically Conceiving Failed Fertility.” This dissertation emerged out of my collaborative partnership with Elizabeth and The ART of Infertility.

Being moved by meeting all of you, I sought to write a dissertation that did not scandalize infertility. Rather, I wanted to write a dissertation that honored the difficult journey we all need to endure because of infertility.  Simply, I wanted to share your stories and remind others that infertility matters. It may not be well-understood, but art can be a method to make visible the stories our infertile bodies carry.

As I finished writing my dissertation a few weeks ago, my body began to feel drained. Writing your stories, reflecting on my own infertility, the dissertation itself felt as if I had just given birth. Even my husband was exhausted! It has been an act of mental, emotional and financial labor — something many of us in the infertility world can understand. To memorialize this sense of fatigue, I created “72 Red Tears: Undeniable Proof.” It sums up the 72 periods that have come and gone in the process of writing this dissertation. I share the piece below as an homage to my infertility journey, as well as a thank you to all of you who have influenced not only this piece of scholarship but who have shaped who I am today: A Strong, Infertile, Woman — now with a PhD — because of all of you.

72 Red Tears: Undeniable Proof
Maria Novotny
acrylic on canvas

72 Tears: Undeniable Proof

I was young, 24 years-old, when I first encountered difficulties conceiving. Not ready to face the facts that I may need to undergo fertility treatments if I ever wanted to carry a child on my own, I decided to go to graduate school. It was my escape where I quietly hoped and prayed that by some magic power I would naturally become pregnant. Yet, as time passed on, I had to slowly face the fact that magic nor graduate school would make me become pregnant.

“72 Red Tears: Undeniable Proof” is a data-visualization of the six years, twelve months and 72 periods that serve as undeniable proof of my infertility. During the first few years, when I began my period tears would trickle down my face. I mourned the sadness that yet another month had passed without conception. However, as time passed and to hear the stories of others who have had to live with infertility, my own strength increased. No longer did every period begin with tears running down my face.

I made this piece shortly after I turned in my dissertation to my committee. It serves as an homage to the journey I have taken both professionally and personally as I work to make experiences of infertility better understood.

IVF Miracle Song – How a conversation with God led to writing a rap and finding community

Andre and Yolanda Tompkins have waited eight years to have a baby.

After a recent unsuccessful IVF cycle, Andre turned to prayer and music to cope. He created the IVF Miracle Song which you can listen to below.

Afterwards, watch our video interview to hear Andre tell the story behind his music.

This post does include images of babies and the topics of pregnancy and ultrasounds.

Thank you, Andre and Yolanda, for sharing your story with us! We’re thrilled to have it in our ART of Infertility oral history archive.

The Story Behind the Song

“Well, you know, I’m kind of passed the prime age to be pursuing a rap career so let me just throw that out there. I’m a military guy, I’ve been in for 22 years now so this is, that is my career proudly serving my country. But when I was younger, me and one of my best friends, he was actually the best man in our wedding, we used to try to get into the business so from doing that I kind of got pretty handy with the software, making instrumentals, and you know recording yourself.”

“It was thanksgiving week. We were coming off of the disappointing news that the first IVF cycle was unsuccessful. That first failure was so…it was devastating it literally was. I think both of us just sat in the house and we just really just wept all weekend.”

“You know I think going through something as painful as that, you’re obviously are going to have an external reaction but then there’s also that internal reaction that sometimes you just don’t know how to get out.”

“I just started writing. And I was like you know what I’m going to just go ahead and plug the microphone in and just start getting it out. “

“You probably heard how the chorus goes, you know, ‘we’re going to have a baby, we want to have a baby’, and that was really the conversation that I was having back and forth with God. You know, we are Christian. We are firm believers. We were both raised in the south in the Bible Belt and talking to God is something that we both do on a daily basis.”

“So this was almost out of a conversation like you know, ‘I know that I’m hearing you say, Lord, we’re going to have a baby but why did we just experience this?  Why is that?’. So I just couldn’t let that go. I refused to give up. I refused to say, well, this is the end. So it was almost like it was more of an edification for myself.  We’re going to have a baby, just keep telling myself, we’re going to have a baby. We’re going to have a baby.”

“When I originally heard it, it brought back you know the pain and the feelings that I had originally and it kind of made me feel like you know we’re definitely on the same page. We’re both like okay we knew that this is what we believe God had laid in front of us.”

“It brought hope for me and it became my, I say my theme song because I’m like okay we’re going to do this. I’m not going to give up on this process. So every time that I would listen to it I was like, okay. We’re going to have a baby, you know we want to have a baby, we’re going to have a baby, you know and I think it’s those positive affirmations that you know you tell yourself and eventually, I believe that if you talk yourself long enough, something’s going to happen.”

“So, I wanted to put it on You Tube because I saw that there were IVF playlists but when you would scroll through there was really nothing that would probably be considered urban. So I put it on You Tube and then after that I said, let me just go paste it on a few Facebook pages. I was pasting it on pages in Africa and in India and while I was reading a lot of these posts, I was like, wow, this is really something that a lot of communities just don’t talk about.”

“I can’t speak on behalf of the African American community but as an African American I can tell you that this is something that within our own community, we don’t really talk about a lot. So when you do have these times when you really want a baby but you can’t have one, you feel like you’re challenged in having one, who do you turn to? Who do you talk to? Who can you be transparent with? We tell people all the time, hey this is what I’m praying for but in these areas we don’t be as vocal as we should because we feel like people will judge us or see me as less as a man or maybe less as a female. And that’s not fair.”

“It’s almost like if you’re yelling out into a Grand Canyon, you’re like, ‘Hello out there,’ and you’re just hoping that someone yells back, ‘Hey, I hear you’ you know? And that’s kind of like it was to me. I just wanted to see if in this big open Grand Canyon of doubt and worry and frustration, is there anyone out there that can hear what we’re going through and they can relate and to get all of those responses back was just so positive and so comforting and just encouraging.”

“I actually started thinking maybe I should make a whole mix tape full of… but right now I’m just enjoying this time you know we’re 6 weeks 2 days pregnant today. Yesterday we saw the heartbeat, the little flickering on the ultrasound. My focus right now is just to take care of my beautiful wife, make sure she doesn’t have to lift a finger, and just prepare our family.”

“The fact that I was able to really open my eyes to this community that we’re in just thinking it’s just me and her in this by ourselves and in that moment of pain and in that moment of feeling lost, I found out that I was actually part of a family so to speak, that we’re all in this together and I think that’s just one of the beautiful things that has come out of this.”

“I know everyone is not religious and everyone has different religious preferences but if you can relate to what we’re saying, then don’t lose faith in that message. If that’s what you heard, push through the pain, push through the self-doubt. Push through the failed results, and just believe and trust and know that at the end of the day, God is going to be there for you and your family, and he will keep his promise. That’s the main thing I just want people to take away from it.”

Have you created music or put together an infertility playlist to help you on your journey? We’d love to hear about it! Learn how you can share your story with us. We always welcome your emails to info@artofinfertility.org and your phone calls. You can reach Elizabeth at (517) 262-3662.

 

 

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.

roses

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.

 

 

 

The Intern’s Perspective

cr-exhibit-2016_031

Hello all, you don’t know me but I hope by the end of the year you will. My name is Jalen Smith, I will be working with Maria and Elizabeth this year as their Social Media and Communication Intern for The ART of Infertility. I am currently an undergraduate senior studying journalism at Michigan State University in East Lansing, Michigan where I will graduate in May 2017. I come into this internship with a vast array of experience in communication/writing related positions. Here at MSU, I have worked with various campus media outlets including VOICE Magazine as their Vice President and Content Editor and The Black Sheep where I work currently as a Staff Writer. In addition to my experience in the media, I am also a member of the living learning community RISE (Residential Initiative on the Study of the Environment) program where I served as a peer mentor and working towards a minor in Environmental and Sustainability Studies in addition to my major. I am originally from Detroit, Michigan where I attended the award winning Cass Technical High School and served as a Public Affairs/Communication Officer for their Junior ROTC program

Enough about me though, I am super excited to be working with the project this year. This past weekend, I had my very first opportunity to see some of the artwork in person and truly get a feel of what this organization’s message is. The event took place at REACH Art Studio in Lansing, Michigan about a 10 minute drive from East Lansing. At first glance, the artwork was a lot to take in, I needed a moment of retreat to take in the context of the art I was seeing.

One of the many new pieces on display from Art of Infertility at the exhibit.

One of the many new pieces on display from Art of Infertility at the exhibit.

Having said that, the art was engaging, it was powerful and it was compelling. I particularly enjoyed certain key pieces that included Elizabeth’s own piece titled, “Crib with Medication Boxes.” It really spoke to me, the amount of trial and tribulations this disease has caused so many. It made me think about the families, the mothers, the fathers, that were heartbroken, made to feel “less than” because of their inability to conceive. It made me think about some of the small things in life some of us take for granted. “What comes easy for some does not come easy for others.”  A lesson in the realities of infertility for millions across this nation and quite frankly, across this planet was a hard pill to swallow. The art exhibit also had lots of other interesting pieces from many other artists and had a thought provoking outlook in the sector of cultural rhetorics.

Elizabeth Walker's piece titled, "Crib with Medication Boxes" Was one of the many featured in the show from Art of Infertility.

Elizabeth Walker’s piece titled, “Crib with Medication Boxes” Was one of the many featured in the show from ART of Infertility.

The concepts in which these rhetorics exist for me is still a confusing concept to grasp luckily Maria will be able to coach me through them this year. There are several different themes associated with the rhetorics of this event. For the Art of Infertility most of the artwork exist in three of those categories: activism, body, and unity. Activism is something that for me stands out as a core theme of this organization. The ability to spread awareness, start conversation and engage and bring together people of different backgrounds to discuss an issue that has long lasting physical, mental and emotional trauma. I’m so thankful that I have been given the opportunity to work with this team this year. To help create engaging content that will allow the voices of the voiceless to be heard. Looking forward to an academic year of purpose! Until next time! Hello again!

Maria Novotny and I discussing other artist's pieces during our visit to REACH Art Studio.

Maria Novotny and me discussing other artist’s pieces during our visit to REACH Studio Art Center.

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.

 

 

#startasking How can I find support in my infertility journey?

Infertility can be one of the most isolating, lonely experiences out there. It’s essential to connect with others who “get it” but it’s not always that easy to do so. In today’s post, Sarah Powell shares the story of reaching her breaking point and reaching out for support. Several months ago, Sarah approached me about starting the ART of Infertility Pen Pal Project as a way to connect people with similar stories for friendship and support. So, we are happy to launch it today during National Infertility Awareness Week. Read on to hear Sarah’s story and learn how you can be matched with an Infertility Pen Pal who shares a similar path. 

Elizabeth

It isn’t all that often that people who are diagnosed with infertility are brave enough to share their story.  That is exactly how I felt when my husband and I received our diagnosis seven years ago.  At that time, my way of dealing with infertility was going to different doctors, four different clinics in fact, hoping that one would give me a different answer than the last. Then, taking a lot of time to research and process what they told me.  For the first few years, I barely talked to anyone about it, sometimes not even my husband, and dodged questions from everyone left and right.  I tried to put on a happy face at baby showers, birthday parties, family events, and with the pregnancy announcements of what seemed like EVERY. SINGLE. ONE. OF. MY. DEAREST. FRIENDS.  I emailed my closest friends and family and told them NOT to ask questions.  I didn’t know the right path forward and my husband didn’t know what to say and when to say it no matter how hard he tried.  Everyone who has ever dealt with infertility knows that you feel very, very alone and most times responsible with every failed test you get but need to keep forging forward with the rest of your life.  It is an AWFUL, ISOLATING feeling.

A lot of times in our lives, people near what we call our breaking point.  One thing happens and it just pushes you over the edge.  As it relates to infertility, I remember moments of mine, though not all the finite details.  It was a Saturday morning and my monthly visitor had shown up yet again when I would have given anything for it not to.  I woke up that day and was in an awful mood, likely yelling at my husband about everything insignificant, poor guy didn’t stand a chance that day.  Because I was in a bad mood, everything was overwhelming me, laundry, dishes, errands, the list went on – but they were really just daily tasks that suddenly became impossible.  I decided to do some dishes and was at the sink furiously scrubbing glasses, crashing down plates, and almost throwing the pans.  At that point, my husband who was trying to be helpful said something related to infertility or my period coming or something like that and then I BROKE.  I remember almost falling to the floor, sobbing and having him pick me up and carry me to the couch where I just sobbed and sobbed for what seemed like hours.  I tend to not share my feelings, and while my husband was doing his best, he wasn’t the one responsible for my infertility and he wasn’t infertile himself.  I realized I needed to find someone like me, someone who could understand my diagnosis, someone who could relate.
Sarah, top left, on the "Contribution Tree" in the first ART of Infertility exhibit at Ella Sharp Museum in Jackson, MI 2014.

Sarah, top left, on the “Contribution Tree” in the first ART of Infertility exhibit at Ella Sharp Museum in Jackson, MI 2014.

 I searched and searched the Internet.  In a world that has become so electronic and saavy with social media, I was shocked to find there wasn’t an easy way for me to reach out to others with my disease. I wanted a phone number, an email address, something. I tend to be an introvert so it’s not easy for me to connect to people, it was very daunting.  Add the taboo subject of infertility and it made it that much more difficult.   I did find information on support groups in my area – but just kept the information in my mind for several months because I was TERRIFIED.  Eventually, after much coaxing by my husband, I did attend a meeting but lets be honest, meetings and support groups aren’t for everyone.  I realized that there has to be an easier way for those to connect privately from their own homes to people who are like them.
I realized I needed to find someone like me, someone who could understand my diagnosis, someone who could relate.
Sarah and Elizabeth at Advocacy Day in 2014.

Sarah and Elizabeth at Advocacy Day in 2014.

As a result we are happy to introduce the Infertility Pen Pal Project.  This project will allow us to connect individuals on a one-on-one basis who have similar backgrounds and diagnosis. Friendships in the infertility arena can become difficult because while the goal is for people to find success, if you are one of the ones who hasn’t yet, you struggle between being happy for your friend but sad for what you want so badly.  We want to be able to connect you to people who are where you are, and reconnect you with someone else if you just don’t click or your penpal finds success and it’s hard for you to handle.  We are hoping this project will help some overcome the feeling of being alone when talking to a group about your story is too much.  Since this is National Infertility Awareness Week, we encourage you to #startasking for what you need so you can get that support. We hope that the pen pal project will make it a little easier for some of you.

If you are interested in participating, fill out the web form at this link and we will be in touch.

#startasking What about men and infertility?

Infertility is often looked at as a disease that only affects women. In reality, infertility is caused by female factor and male factor equally at 30% each. In the balance of cases, the infertility is the result of both partners or unexplained. Even when the disease is not a direct result of issues with a male partner, infertility has a huge impact on men. Unfortunately, men’s stories are not heard as frequently.

ART of Infertility is interested in telling diverse stories of infertility, and is always honored to share the stories of men. We’re very excited to have been invited by Dr. Paul Turek of The Turek Clinic in Beverly Hills and San Francisco, to hold a pop-up art exhibit in his clinic in San Francisco on Thursday June 16th from 7 – 9 pm, in honor of Men’s Health Week. We’ll be sharing the artwork and stories of men and their families along with food and art making stations. If you’re in the area, we hope you’ll attend. In the meantime, you can learn more about male fertility and infertility from Dr. Turek here and read and listen to the personal story of Bret, an ART of IF participant in Southern California, and his family below. Bret reflects on the experience of miscarriage and trying to decide whether to continue or end treatment.  This post does contain images of children and parenting.

– Elizabeth

Bret with his son Cole, who was conceived via Inter-uterine insemination, or IUI.

Bret with his son Cole, who was conceived via Inter-uterine insemination, or IUI.

“I knew the moment the doctor came in to do the ultrasound. I saw his actions and he didn’t even have to say anything. I’ve done enough ultrasounds with him before and I kind of knew how they went and he was triple checking everything and I knew, this was not good. She didn’t want to accept it the first time and it was difficult. I kind of knew the writing was on the wall. Maybe we also approached her second pregnancy in a different way. I didn’t want to tell anybody until the end of the process. She was just so happy being pregnant and I tried to advise her, this is nobody’s business but ours. It was tough because I had that in my mind that it wasn’t going well and she was so ecstatic being pregnant. We were in two very different places at the same time. I just tried to do what I could. There was also a lot of work stuff going on at the same time so I wasn’t here for the 3 weeks when this all happened. I was at work almost he whole time so it was not a good time, at all, for anyone.”

“The only thing I can do is support her. Be there for her, a shoulder to cry on. She needs to get these emotions out so that’s what I try to do. I’m not very good at it but I try.”

Bret_004_men-and-infertility“I guess I don’t have a support, I guess I don’t. I don’t really talk to anybody about it. I have my ways that I guess I try to let things out and deal with it but I don’t talk to anybody. I like to go out in the wilderness and I usually go with a group of friends and we go backpacking or go walk up a mountain or something cool and well, last July we had our family vacation. We did a little anniversary thing and got away and we came home and I just said, I’m leaving. I’m going. I just went and walked out in the mountains by myself for about 4 days. This was about 6 weeks after the miscarriage. It helped. It wasn’t the cure I was looking for but it was helpful and that’s it and then it was back to work and back to the grind and I really haven’t dealt with it, I just try to put it behind me.”

Bret, Erica, and Cole at their home in Southern California.

Bret, Erica, and Cole at their home in Southern California.

Click on the clip below to hear audio of Bret and his wife, Erica, discussing whether to continue or end treatment.

 

 

Infertility Greeting Cards: Hope and Comfort via the Mailbox

This is a guest blog post written by Kristy Koser who is a Licensed Professional (Clinical) Counselor. After trying nine rounds of IVF with no luck, Kristy decided to channel her frustrations into Trying to Conceive Greeting Cards in order to help herself, and others, find the right words to say. You can follow Kristy on Instagram at @ttcgreetingcards or find her work on Etsy

As with most things in life, we have an expectation of what’s to come, at least an idea of where we imagine our life to be. I accomplished most of my personal and career goals by my late 20s, with two degrees, a thriving private practice as a couples therapist, several publications, a house, two cats, all while being married to my best friend. When it came time to think about children, I assumed starting a family would be within reach just like all the other challenging, but doable things I tackled in the years past. Much to my surprise, having children or should I say “making” children was and is much harder than we ever dreamed of. After nine rounds of IVF (and loads of medicated and IUI cycles before that), we are still in the midst of wondering what’s next, and will this ever work?  We wonder if we are legitimately going insane for continuing to embark in yet another IVF round? Could this be it? Will this be it? The conundrum with IVF is that often there is always some lingering, hope, maybe it’s possibility or curiosity, whatever you want to call it, at the end of each failed round–tempting you and your doctors to tweak something and try again. Maybe now, we finally have the magic mix of suppression, estrogen, uterine receptivity and progesterone that will miraculous allow that embryo to implant. The key word here is “maybe,” a five letter word that holds all the hope and optimism. It propels you into thinking just one more injection, pill, retrieval, patch, or transfer will be it. I think we all need those “maybes” in life, it keeps us motivated, curious about what’s to come. Somehow the “maybe” brings forth hope that would otherwise get lost in the fear and the unknown.

I’ve spent years of life in the “maybes” in the hope that something new will finally emerge. I’ve fought off doubt, grief, jealously, and fear of the unknown, hoping that somewhere underneath it all I’ll find that “something” to renew my heart to try again. Infertility challenges you to face feelings on so many levels it’s often to hard to process them from day to day and depending what medication you’re on, really it’s more like hour to hour. I’ve been swallowed up in emotion and have felt paralyzed at times, not knowing how to feel or even wanting to reach out. I knew living in the black hole of infertility was not going to cure my sadness or anger, it was instead going to propel me farther from the things that really matter.

So, after sitting with all that uncertainty for years on end I decided to do something with it. I often heard friends and family say “I just don’t have the right words” or “I wish I knew what to say” as we would announce another failed cycle or another early pregnancy loss. This led me to create TTC (trying to conceive) Greeting Cards, which specifically supports those struggling through infertility. They highlight the unique struggles, medical procedures, and feelings that are often associated with infertility. They are meant to provide encouragement, hope, and comfort–just the right words for people who don’t know what to say. Creating these cards was also a way for me to process my grief from the last three years. Knowing these cards were going to be filled with love and encouragement, arriving to someone’s mailbox on one of those dark-doubt-filled days, made me feel less alone in this battle. I felt like I was doing something with all this pain and heartache. I also loved the idea of encouraging and supporting other couples going through this. It’s easy at the beginning to think you can manage infertility quietly or without help, but what soon becomes apparent is the need for others along the way. On social media (Instagram) I often share tips that I’ve learned over the last nine IVF rounds to staying positive, focused and organized through this process. I’ve even created a “cycle calendar” that people can print off at home to help organize medication, appointments, lab results, and other procedures that can often feel overwhelming. Mapping it all out and if you are really ambitious even color coding it can help to ease the panic when trying to remember numerous medications in one day. I’ve often found keeping each calendar in a special folder is helpful to compare your medication and lab results from one cycle to the next. For example, you are able to anticipate how quickly your estrogen may rise or how slowly a follicle may grow. This can help you feel more in control and be a good reminder to wait patiently on your body to show you what it’s capable to doing.

jesus

Just one of the many “trying to conceive” cards that Kristy has created.

Over the last six months I’ve created cards that highlight things like egg retrieval and the excitement of embryo transfers. I’ve also created a line of thank-you cards for the nurses, doctors and embryologists who have provided such exceptional care during your most delicate moments. These have been quite a hit with doctors and embryologists around the country.

hormones

Kristy’s card apologizing for the whirlwind of hormones while trying to conceive.

I’ve most recently created a line of cards for couples to intentionally stay connected during the struggles of infertility. So often one partner feels at fault for the failed treatment or worse a partner can feel left out of the process. As I experienced both of those at times in my own marriage, I was reminded how important it is for all couples to stay in conversation along the way. As a couples therapist, I’m always looking out for ways couples can improve their relational bond and infertility has an immense power to create very wounding trauma that can impact fertility treatment, our body’s ability to cope with the various medical procedures, and our overall emotional health. It’s usually our partner who sees us day-in and day-out, going to our appointments, injecting mass amounts of hormones, sticking things up all kinds of places, and is left with whatever capacity we have left to be a good partner (which is usually very limited, sharp, sarcastic, or constantly hungry).

babyishard

A card created by Kristy that helps couples to stay connected through the struggle of infertility.

Next week I’ll be launching a “lucky” socks collection that has been highly suggested by customers. I’ll be introducing various designs to keep your feet nice and cozy during the often cold and sometimes sterile appointments, egg retrievals, embryo transfers, and of course the dreaded two week wait. I love knowing women can look down at their feet and be reminded “I can do this” or feel empowered to stay focused and positive when the doubt creeps in. Also in the shop are “lucky” tees that women can wear at any point in the infertility process to feel supported and motivated to make each day, appointment, medication, and dollar, matter.

My hope in creating these cards and gifts is to help couples, families, and friends start to speak about the pain of infertility and in turn feel empowered to comfort and support their loved ones–with just the right words. So, if you are needing the right words to say to a friend or family member–or if you are needing a little encouragement yourself, consider sending some love through the mailbox. I mean, who doesn’t love snail mail?

A big hug to all those trying to conceive today, tomorrow, and in the years to come. You are not forgotten, friend. You can do hard things.

Kristy Koser, is a Licensed Professional (Clinical) Counselor in Virginia and Ohio and a Emotional Focused Couples Therapist and Supervisor. She specializes in couples therapy, family business consulting, and attachment related dynamics. Outside of her professional life, she’s a sucker for Netflix, flash mobs, and a good piece of cheese. You can reach Kristy for speaking, media or press inquiries at ttcgreetingcards@gmail.com.