Tri-State, NJ Walk of Hope

Posted on July 17, 2015 by admin

Maria and I met when we both attended RESOLVE: The National Infertility Association’s Advocacy Day in Washington, D.C. in May of 2014 and quickly bonded over the fact that we were both peer-led support group hosts for the organization. RESOLVE’s signature fundraising event is their Walk of Hope, which takes place around the country.

The ART of IF will be at the Tri-State walk in New Jersey on September 12. We’ll be a community sponsor, to help further RESOLVE’s wonderful work in advocating legislation that helps those with infertility build their families. Our table will have examples from the exhibit on display and we will be doing mini interviews for that project. We’re also putting together a fundraising team. Let us know if you’d like to join us!

Jenna Marinelli is the chair of the walk this year and we’ve asked her to tell us some more about the walk and her personal reasons for walking through our blog this week. Thanks, Jenna, for sharing your story!

Elizabeth

RESOLVE: The National Infertility Association is hosting the 1^st Annual Tri-State Walk of Hope and we are looking for you to join us!!

The Walk of Hope is RESOLVE’s signature fundraising event. This is a community event that recognizes the many ways in which families are built, supports local support services and programs for the 7.4 million men and women living with infertility. A Walk of Hope event represents the infertility journey—a series of small steps, each one filled with hope and a reminder that no one with infertility should walk alone. One Morning, One Mile, One Community.

Local facts:

More than 992,000 women in the Tri-State area (New York, Connecticut, New Jersey and Pennsylvania) are impacted by infertility.
There are only 30 peer-led support groups in the Tri-State area.
New York, New Jersey and Connecticut have insurance mandates for fertility coverage.

After participating in the Washington, D.C. Walk of Hope for past 3 years, I am honored to be the Chair of the inaugural Tri-State Walk of Hope on September 12th, 2015 at Overpeck County Park – Ridgefield Park Area in New Jersey. This event gives me the incredible opportunity to connect with others struggling with their own infertility, often silently and alone.

Jenna has raised the most for the Washington, D.C. Walk for multiple years. She’s now taking her energy to NJ as the Tri-State walk’s chair.

My story dates back to June 2010, exactly one year after marrying my high school sweetheart, when I was diagnosed with Premature Ovarian Failure at the age of 26. POF is defined as the loss of ovarian function before the age of 40. It occurs in 1 in 1,000, or 1%, of women between the ages of 15 and 29, with the average onset being 27 years old. Currently, there is no cure and no proven treatment that can restore the normal functioning of the ovaries or fertility. Women with POF are recommended IVF with donor eggs or to pursue adoption. POF also has lifelong health implications beyond fertility, particularly with regard to cardiovascular and bone health with greater risks for developing osteoporosis, estrogen deficiency and heart disease.

As of today, my infertility “resume” includes 3 failed IUI’s, 4 cancelled IVF’s using my eggs, and 1 Donor Egg IVF that ended in a Chemical Pregnancy. We do not live in a state that mandates infertility coverage (PA), so we pay out of pocket for everything. This is why we need everyone’s help raising awareness to infertility, so hopefully one day there will be more options & treatments available for couples faced with this disease. We are currently gearing up for our next cycle using Frozen Donor Eggs! I hope that sharing my journey can bring awareness and help even one person. I am a survivor! I will beat infertility!

Please join me for this walk so that no one struggles alone. Registration is free and all are welcome to attend. Both teams and individuals may register. The Walk of Hope also offers fun and activities for all ages. All funds donated will go directly to RESOLVE to further its work. Visit our website today at resolve.org/tristatewalk.

The walk will be held at the beautiful Overpeck County Park.

The walk will be held at the beautiful Overpeck Country Park.

Other ways to help

Follow the Tri-State Walk of Hope on Facebook and Twitter.

We need talented, dedicated, and hard-working volunteers to plan, promote and implement the Walk of Hope. For more information, please contact Jenna Marinelli at njnywalkofhope@gmail.com for details. Volunteering for the Tri-State Walk of Hope is a great way to support the hundreds of thousands of people diagnosed with infertility and have some fun! Each year we rely on the generosity of dozens of volunteers to create a very successful event for the infertility community.

To sponsor the Tri-State Walk of Hope please contact Jenna Marinelli at njnywalkofhope@gmail.com or Jenlene Nowak at 703.556.7172. Our sponsoring partners are very important to RESOLVE’s Walk of Hope. Your support of this event will allow RESOLVE to create a great day for all those choosing to walk with us. Plus you’ll show your clients and customers that people with infertility matter.

Jenna

Angela’s Advocacy Day Interview

Posted on June 29, 2015 by admin

Maria and I had the pleasure of documenting a bit of Angela’s story when we were in Washington, D.C. last month. Angela did multiple rounds of IVF with both her own eggs and donor eggs before adopting her son domestically. Thanks, Angela, for sharing your story with us so others will know they are not alone!

Elizabeth

Angela talks about her experience with open adoption and the frequency with which she has contact with her son’s birth mother.

For more information on adoption, the Creating a Family website is a great resource. They even have a radio show that can how information on the different types of adoption and how to decide which one is right for you and this quick comparison chart on the different types of adoption.

Angela is a RESOLVE: The National Infertility Association Ambassador and a peer-led support group host. You can play the audio clip to hear about how Angela got involved with the organization. (She references Redbook’s Truth About Trying campaign in this clip. You can check out some of the videos from the campaign at this link but will have to scroll to the bottom to find them.)

Click on this link to find a RESOLVE support group near you. If there isn’t one in your area, you can email info@resolve.org to talk to someone about starting one. There’s no substitute for in person, “real life” groups and the support they provide. It was through a RESOLVE support group that I became comfortable with my diagnosis, sharing my story, and ultimately wanting to do infertility advocacy, resulting in ART of Infertility!

Infertility is…

Posted on May 28, 2015 by admin

While we were in Washington, D.C. for RESOLVE: The National Infertility Association’s Advocacy Day and for our pop-up gallery and workshops at Busboys and Poets a couple of weeks ago, we asked those in attendance to fill out cards describing what “infertility is” to them. You’ll see some of them throughout this post, from Elizabeth. You can see more by viewing a slideshow at this link.

When I think of infertility, I think of many things. How I view infertility and what it means to me has changed as I’ve traveled through my journey.

Infertility is… devastating.

Infertility is…feeling left behind.

Infertility is…an identity crisis.

I was pregnant once, as a result of a frozen embryo transfer, and only knew I was pregnant for a few days before learning that the pregnancy was ending in an early miscarriage. During those few days, I was excited, hopeful and cautiously optimistic, that after four years of timed intercourse, hormone injections, and 7 a.m. ultrasound appointments, I might finally become a parent. However, I was also experiencing some serious anxiety and a complete identity crisis.

The early years of infertility were extremely difficult. However, once I was used to the fact that I had an infertility diagnosis (for the most part anyway), I settled in to my place as an infertile woman and RESOLVE: The National Infertility Association peer-led support group host. I read books on infertility, I knew which foods to eat to boost my egg quality (and incorporated excessive quantities of them into my diet), I had infertile friends, and was beginning to perfect my answers to the question, “Do you have kids?”, recite them with conviction, and be ready for any follow up questions that came my way.

When I found out I was pregnant, though obviously happy, I was also confused about where I would fit in. What would happen to my relationships with my infertile friends who I would leave behind? What would my role within RESOLVE become? The first ART of Infertility exhibit was on the schedule at the Ella Sharp Museum in Jackson and I remember being a bit upset that I had to stay in the world of infertility to work on it, instead of being able to enjoy my pregnancy. I was terrified of moving into the world of someone who was pregnant after infertility. I was even feeling exhausted about the fact that, after watching my diet for years to GET pregnant, I’d need to watch my diet for another 9 months in order to make sure my baby was getting the nutrition it would need. It was a mix of thoughts and emotions. A complete identity crisis, over the course of less than 72 hours.

I wish I would have gotten the chance to figure out how I would incorporate all of the thoughts and fears above into my new identity as a woman who was parenting after infertility. I haven’t gotten there yet and might even eventually choose to live child free. I’m still trying to navigate figuring out my identity a bit. However, through working on the ART of Infertility, I feel like I am really finding my footing. Because of this project, my view is now that

Infertility is…meeting amazing people, around the country and around the world, who understand how the disease impacts my life, because they’re living it too.

Infertility is…educating health care professionals about how they can better serve their patients.

Infertility is…hosting art and writing workshops to give others the creative outlet that I have found so helpful along the way.

Infertility is…visiting amazing cities and sharing the infertility stories of those who live there.

Please share with us what “Infertility is” to you.

-Elizabeth

Art Journaling to Cope with Infertility

Posted on May 14, 2015 by admin

I was very fortunate to wake up this morning in our nation’s capitol, where I will be advocating for legislation to help those with infertility. Sara Elliot, our guest blogger this week, was hoping to make the trip this year and was unable, but wanted to share her story with us via the ART of IF blog. Thank you, Sara for sharing your story with us!

Elizabeth

Art Journaling to Cope with Infertility

Many in the infertility community will be making their way to DC this week for Resolve’s Advocacy Day on Capitol Hill.

I can’t be there to advocate this year in person, but I still I wanted to help raise awareness about the 1 out of 8 couples who month-after-month, year-after-year are trying to build their family by any route available to them.

Let’s start with this. I never thought that I’d be a person who would “do” IVF. It’s taken a long time to come to terms with the loss of control over my body and my reproduction. With a diagnosis of PCOS and subclinical hypothyroidism, I am now both infertile – meaning we tried to get pregnant for over a year without assistance – and have experienced recurrent pregnancy loss. The combination is so difficult.

Around the time I first went to on OB/GYN to get testing, I found out that it took my grandparents 7 years to conceive my mother, so there is likely a genetic component to what I am going through. I remember my grandma saying, “Our children came along later” but I didn’t understand infertility might be the cause until I was faced with it myself.

For reasons we’re still trying to figure out with our doctor, we’ve conceived four times through assisted reproductive technology – 2 IUIS and 2 IVF cycles – and lost all 4 pregnancies. One was ectopic. One had a heartbeat we got to hear twice.

While going through this recent IVF cycle and loss, I turned to art journaling to process the emotions of this heart wrenching experience. I made a point to draw just a little bit every day, even if all I could muster was a few words in black pen. I’d often fill in the color on better days.

The art journal is a record of what kept me going, including song lyrics and reminders to take care of myself.

At the start of the New Year, I pick a new word to focus on. This year the word I chose was “Become.” This song by Iron & Wine got stuck in my head for weeks, so “Become the rising sun” has become a phrase I focus on a lot.

When we got an unexpected positive pregnancy test in February, I tried to remember to be happy in the moment. I was very anxious, given our history of loss. During this cycle, I saw the trailer for the documentary One More Shot by Noah Moskin and Maya Grobel Moskin. When Maya said, “In this moment, I am happy” I sobbed realizing how hard and necessary it is to grab a moment of happiness amidst all the bad news.

Fear of loss is a very typical response for women who have been through so much to get pregnant. Many infertile women talk quietly about the post-traumatic stress they experience. In the end, the only choice is to surrender, continue to persevere, and to figure out how to rebuild a life that includes more than just a few moments of happiness.

***

In 2010, my husband and I moved back to our home state of Michigan to be near family as we tried to have children. As the years of trying to conceive and maintain a pregnancy unfolded, an added heartbreak was that if we’d stayed in Massachusetts, our IVF health care costs would have been covered by insurance because state law in Massachusetts mandates coverage for IVF. Michigan law does not. Federal law does not. Money that we’d intended for a retirement account or a child’s college fund was instead spent on medical bills that were uncovered by our health insurance.

And let’s be clear – female and male sterilization is covered by our insurance plan, yet the most effective treatment for infertility, IVF, is not covered. As far as I can tell, the only logic for this policy is cost savings for the insurance companies. No working reproductive systems means no babies which means no hospital births and no well-baby visits to pay for on family insurance plans.

Despite all of our bad luck, we are lucky that we have some savings to spend on our health care needs. Many couples do not. And frankly, no one should have to spend five figures out of pocket to treat a diagnosed medical condition.

Only laws can change this situation.

Thank you to the women and men who are in DC advocating on our behalf this week.

Kickstarter – Help us take the ART of IF to Washington, D.C.

Posted on April 24, 2015 by admin

As I began writing this, Maria was somewhere up in the sky or enjoying her layover in Minneapolis and I was about to board my flight to LAX. The past month has been a whirlwind prepping for our exhibit in Iowa City last weekend and Los Angeles County, this Saturday. I can only imagine that the next few weeks will fly by as well!

RESOLVE’s Advocacy Day is May 14th and Maria and I, along with Maria’s husband, Kevin, and my mother, Judy, will be on Capitol Hill in Washington, lobbying for legislation to help those with infertility build their families.

The ART of Infertility is heading to Washington, D.C. with a pop-up exhibit and workshops on May 15.

On Friday May 15th, we’re holding a pop-up art exhibit and writing and art workshops at Busboys and Poets at 5th and K in Washington, D.C. from 3 – 7 pm. The event is free and open to the public. We have artwork coming in from around the country (we’re still accepting art entries if you’d like yours included, click here.) and will be displaying local artwork, as well as a selection of the portraits and stories we’ve collected over the past year. Marissa McClure Sweeny will be teaching an art workshop and Jenny Rough, who you heard from on our blog yesterday, will lead a writing workshop. Registration is required for the workshops so please contact us if you’d like to attend. These community art events are powerful tools for raising awareness about infertility and building a network of support for those living with the disease.

The event in DC will be our 13th in a little over a year. (Is that possible? I had to check it 4 times to believe it was right!) We’ve been almost completely self-funded until very recently and, if the project is going to be sustainable and allow us to provide a creative outlet to more people in more cities, we know we can’t continue that trend. It’s been suggested by those who like what we are doing that we launch a Kickstarter campaign to allow people to easily contribute to the cause.

A screen shot of the Kickstarter campaign we hope will help take the exhibit to Washington, D.C.

If you’re not familiar with Kickstarter, here’s how it works. You have an opportunity to contribute to a project, in this case, our pop-up exhibit and workshops in D.C. and get a little something from the project in return. We have some cool ART of IF swag featuring art from the project as rewards for contributing (ART of IF T-shirt, journal, or messenger bag, anyone?), as well as opportunities to get framed artwork from the show and a digital version of the exhibit we put together for D.C. We set a goal of $3500 and only receive money if our funding goal is reached. We don’t make it to $3500, we don’t get a thing. We only have 20 days to reach our goal! So, we’re asking for your help in funding this show in our nation’s capitol. Will you please join us in supporting the men and women with infertility in the DC area and those traveling in from around the country for Advocacy Day by contributing to our campaign? Here’s the link! ART of IF in DC Kickstarter Campaign.

Thank you!

Elizabeth

Introducing the ART of IF Blog

Posted on April 21, 2015 by admin

One year ago, I was just two months out from learning my final embryo transfer was unsuccessful. The reality of that hadn’t yet sunk in. My husband, Scott, and I had been trying to conceive for five years and had endured five rounds of Clomid with timed intercourse, 4 inter-uterine inseminations with hybrid cycles of both pills and injectable medications, and one IVF cycle that resulted in internal bleeding, ovarian torsion and emergency surgery in the middle of the night. There were other surgeries along the way too. Surgery to look for Endometriosis, surgery to remove polyps, and one to remove the remnants of my only pregnancy; the twins I miscarried after our first embryo transfer. Our treatment journey was over. I was both relieved and panicked.

The first pieces of art work I made in response to my infertility, created while recovering from surgery #1.

The first pieces of art work I made in response to my infertility, while recovering from surgery #1.

At that same time, the ART of Infertility’s first exhibit was just a few weeks in to its run at the Ella Sharp Museum in Jackson, MI. I didn’t set out to do more than one exhibit. I wanted a way to raise awareness in my community and figured that sharing the artwork I’d been creating as a way to cope with my infertility diagnosis, along with the artwork and stories of others, would be a way to do so. Working on that show was therapeutic for me and it was amazing to see how participating in the show was so helpful for others as well. It gave us a voice, helped our friends and family understand our disease, and expanded our community. I decided I couldn’t just stop at my hometown and took the show on the road.

The opening reception for our first exhibit, The ART of IF: Navigating the Journey of Infertility at the Ella Sharp Museum in Jackson, MI. Photo by Sarah Gough

In May, I traveled to RESOLVE’s Advocacy Day to lobby on Capitol Hill for legislation to help improve the lives of those with infertility. While I was there, I met Maria Novotny, who is a fellow RESOLVE Peer-led Support Group host on the west side of the state in Grand Rapids. Maria was interested in the project and it wasn’t long before she was a part of the team. With Maria’s help and tremendous help from my parents, my husband, my acupuncturist extraordinaire, Krissy Clark Rock, and other amazing volunteers and supporters, I’ve collected over 50 interviews over the past year and had exhibits on display in three states. We’ve held art, writing and informational workshops and assisted people in building their families by connecting them to people and resources who can help them. We’ve also built an amazing network by putting men and women in touch with others with similar diagnoses and in similar situations so they don’t feel so alone in their journeys.

Kevin Jordan, Maria Novotny, Sarah Powell, and me at RESOLVE’s Advocacy Day, May 2014.

As much as we’ve been able to do in the past year, there’s so much more to be done. There are so many people who want to share their stories and, in an effort to help give a platform to those we can’t meet in person quite yet, we’re starting this blog. We’ll be sharing stories and artwork from the project and invite guest bloggers to share their own perspectives. As always, we invite you to share your stories through your artwork and writing, your interviews, and now, our blog.

Sorting exhibit labels in our Sacramento hotel room before the Northern California Walk of Hope.

Working on this project has been incredible. Hearing the stories of others and sharing mine has helped me process the grief of my infertility. I’ve met amazing individuals and families along the way and am constantly amazed and honored by the ways are willing to share their lives with me, and in turn with you. This journey is just beginning. I’m so very excited to see what the future holds.

On a hike with project participant, Bee, in San Rafael, CA.

Elizabeth

ART of IF

The official blog of the traveling art exhibit and oral history project, ART of Infertility.

Tag Archives: Advocacy Day

Tri-State, NJ Walk of Hope

Angela’s Advocacy Day Interview

Infertility is…

Art Journaling to Cope with Infertility

Kickstarter – Help us take the ART of IF to Washington, D.C.

Introducing the ART of IF Blog