Giving Tuesday as a Not Quite Non-Profit

Posted on November 29, 2016 by admin

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.

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!

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.

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.
Share a favorite blog post from ART of IF on social media.
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.
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 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

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

Posted on July 19, 2016 by admin

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

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 30^th 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.

The 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.

The 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 1^st 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!

The 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.

The 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 – Infertility awareness is only important for one week in April.

Posted on May 2, 2016 by admin

Last week was a big week for us, it was National Infertility Awareness Week. We believe in raising awareness about infertility year round and one of the biggest days of the year is right around the corner. What is it? Advocacy Day. It’s a day when those in the infertility community, and their friends and family, descend on Washington, D.C. and have meetings with their legislators, encouraging them to support the bills that will improve the lives of those with infertility by helping them build their families. If you’ve never done anything like that before, it might sound a bit scary. I’ll admit I was a bit nervous the first year I attended. However, that nervousness was quickly replaced with a feeling of strength and empowerment I hadn’t before felt in my infertility journey.

Maria and I attended our first Advocacy Day in 2014. It’s where we met! Here we are with Maria’s husband, Kevin Jordan, and one of my best friends, Sarah Powell.

Advocacy Day is on May 11th this year. The deadline for registration is this Wednesday, May 4th. Have ever felt discouraged by the out of pocket expenses you’ve incurred due to your disease? Ever wished that there was more research being done about conditions like Endometriosis or PCOS that can contribute to infertility? Have you wished that there was more support for potential adoptive families? Have you thought it’s an outrage that there is a ban on IVF for veterans? If so, this is an opportunity for you to tell law makers how you feel and be a part of changing things for the better. Maria and I will be there, along with many of the individuals you’ve read stories about here. Candace Wohl, Judy Horn, Lindsey, Jennifer, Katie Lelito, Cindy Flynn, Brooke Kingston, Risa Levine, Angela Bergmann, and more. If any of these people’s stories inspired you, here’s a chance to meet them in person! I will happily introduce you!

Need more inspiration? Check out the videos below!

Please, meet us at Advocacy Day!

Elizabeth

Advocacy Day Reflections from Jennifer

Posted on April 5, 2016 by admin

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.”

“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.”

Water, the President, and Infertility

Posted on January 21, 2016 by admin

You’ve probably heard of the water crisis in Flint, MI. In case you haven’t, here’s the gist of it. While the city of Flint was under emergency management by order of Governor Rick Snyder in 2014, a decision was made to discontinue sourcing the city’s water from the city of Detroit.

As a cost saving measure, Flint’s water supply would instead come from the Flint River. The river water was so corrosive that it broke down the city’s lead pipes, leaching toxic levels into the Flint residents’ water. Lead poisoning in children can cause developmental delays, vomiting, hearing loss, and more. In adults, it can cause memory loss, high blood pressure, reduced sperm count, miscarriage, the list goes on. In addition to lead poisoning, an outbreak of Legionnaire’s Disease, which is possibly the result of the contaminated water supply, has killed 10 people. This is all completely horrific.

In October, Flint’s water supply was switched back and is once again sourced from Detroit. However, the damage to the pipes has been done and the water is still unsafe. It wasn’t until January 5th though, that Governor Snyder declared a State of Emergency and on January 16th, President Obama declared the situation in Flint a federal state of emergency. Obama was visiting Detroit yesterday and spoke about this disaster.

Nearly seven years into my experience with infertility, it’s rare that I have those moments that anyone with an infertility diagnosis knows well. They come out of nowhere. The hit by a truck, breath knocked out of you, heart breaking into a hundred pieces moments when someone asks you if you have children, you see a young child reach for his father’s hand, or a pregnant woman lovingly rubs her belly. I’ve come a long way in dealing with the emotions that come along with this disease. However, listening to coverage of President Obama’s speech on my local NPR station, Michigan Radio, while sitting in traffic during my commute last night, I nearly burst into tears. The reporter quoted the president and then followed up with audio from his speech, reflecting on the crisis in Flint.

“I’m very proud of what I’ve done as president, but the only job that’s more important to me is the job of father. And, I know that if I was a parent up there, I would be beside myself that my kids’ health could be at risk. That’s why over the weekend, I declared a federal emergency in Flint to send more resources on top of the assistance that we’ve already put on the ground.”

Obama went on to say that he’s designated a federal coordinator to make sure the people in Flint get what they need from their country, that he’s met with Flint’s Mayor, Karen Weaver, and told her that he’s going to have her back, and all of the people of Flint’s back, as they work their way through this terrible tragedy.

My heart broke when I heard those words. My heart is racing now, after listening to Obama’s speech again to transcribe his sentiments. The President says he’s proudest of his role as a parent, a role that millions of Americans long for, yet are unable to achieve, because they have the disease of infertility. The federal government has the city of Flint’s back, as it absolutely should, yet there is no federal mandate for health coverage for the diagnosis or treatment of infertility.

Most Americans don’t have infertility coverage and many have to pay completely out of pocket for their health expenses due to this disease, a disease that is recognized by the Centers for Disease Control and Prevention (CDC) as a public health concern. The federal government doesn’t even have the backs of veterans who are infertile as a direct result of injuries sustained in the line of duty. There is currently a Veterans Administration ban on coverage for in vitro fertilization, a procedure that could bring the dream of parenthood to thousands of veterans of war who can’t become mothers and fathers without it. Parenthood. The role which their commander in chief values above all.

The people of Flint are worried about their health, scared of what their futures might hold, or might not hold, as a result of the public health crisis of contaminated drinking water. People are outraged so they’re raising their voices and they’re being heard.

This is why I raise awareness through infertility art exhibits, art and writing workshops, and conference presentations with ART of Infertility. This is why I lobby on Capitol Hill each year on Advocacy Day for legislation that, if put into effect, will help those with the disease of infertility build their families through treatment or adoption.

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Maria and me on Advocacy Day 2015.

My infertility diagnosis affects my health and well being and alters the possibilities for my future. It makes me outraged that my loved ones and I don’t have access to the care we need to treat our disease. So, I write my members of congress, meet with them on Capitol Hill, align myself with members of the infertility community so we can support each other. I shed light on the trials of infertility through portraits and interviews of those dealing with the disease and curate exhibits of artwork created by them so the public, our insurers, and legislators can better understand why it’s important that we gain the health coverage we need.

Like the president, I’m proud of the work I have done. However, my job won’t be finished until every person who wants to be a mother, or wants to be a father, has access to the resources they need to achieve their dream.

-Elizabeth

Advocacy Day is on May 11 this year. Please join me in Washington, D.C! Click here for more info.

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.

Project Poetry – A visit with Tamsin

Posted on April 21, 2015 by admin

Back in December, I had the opportunity to spend some time with Tamsin in her home in Marin County, CA. The road to her house was a winding drive lined with moss covered trees. It had rained earlier and when I stepped out of my car to unload my camera equipment, I was overwhelmed with the warmth and humidity, the smell of the earth and the trees. It was a nice change from the bitter cold I had come from in Michigan.

Tamsin has been using poetry and photography to deal with some of the emotions surrounding her infertility and read a few of her poems for me. By the time she had finished the third, we were both overcome with emotion and the tissues had to be passed around. You can listen to the first poem she shared with me below, it’s titled, “Just Shut Up”.

Here’s some more of Tamsin’s story with portraits of her from our time together.

Elizabeth

Tamsin

“I got pregnant on the honeymoon. So, right from as soon as the baby thing could possible have started it started. I’ve had two tubal pregnancies. It just makes what should be a really personal joyous time into something that’s more about doctors and scientists and labs and money and worry and so it’s not really as romantic a start to marriage as it could have been.”

“We don’t have insurance coverage for infertility. It’s added stress and guilt that my body is costing us so much money. We moved here with my husband’s work and I’m trying to get licensure as a marriage and family therapist so I’m doing unpaid hours at the moment. That’s a strain because we only have one income. That makes me feel bad that I’m 38 and not earning money. Then, on top of that, it’s my body that has the issues so that’s tens of thousands of dollars that we’re paying out. It just seems like my fault because my husband is working and his body is working as it should be. I feel like I take a lot of it on myself really.”

“This year I had a lot of time off work so I got my website up and running and did some photography and some poetry and just kind of surprised myself with all of the creativity that was coming out. My therapist kind of likened it to birthing my artistic self. It’s been quite a big thing. It’s been really helpful, I think. Even more so with the poetry. I’ve been writing not just about the infertility but stuff that’s happened in my life and my childhood and friends and I think it’s just brought up so much emotion that’s been cleared out that I didn’t even realize was there to be cleansed so that was really good.”

“We plan our lives so carefully but you can’t plan for this.”

ART of IF

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

Tag Archives: infertility insurance coverage