Fine and Good – Jamie’s Story of Healing through Art

We’re still accepting entries for our upcoming exhibit, “Cradling Creativity: The ART of Infertility in Philadelphia” and we’d love to have your writing or visual or performance art. You can submit your art at http://bit.ly/PhillyArtEntry. One of the artists who will be featured in “Cradling Creativity” is Jamie Blicher. Today, Jamie shares how she’s used art to heal while dealing with infertility. Thank you, Jamie, for sharing your work and story with us!

I lived in New York City for 10 years, where I met the amazing Brian. We got married in May 2014. I’ve always worked very hard at my career (I’m a Retail Buyer) and have the most incredible friends. But to me, family has always come first. So, Brian and I moved home to Maryland to be near ours and start our own (so much for the planner in me!). We tried to get pregnant naturally for a year and when nothing was happening, I turned to Shady Grove Fertility in Rockville, Maryland. The first step was to try an IUI. After three consecutive failed IUI procedures, we moved to IVF. The first transfer worked but I miscarried identical twin boys at 8 weeks. We transferred the second embryo in April and the second transfer didn’t work.

I’ve always painted, scrapbooked, bedazzled and did every art project under the sun. Art (as well as singing and dancing) has always been a form of meditation for me–and what a better time to practice! After the second procedure failed, I was looking for a specific brush in my toolbox and saw that I had thrown some unused IVF needles in the toolbox so I put paint in a syringe and loved how it looked on my canvas. I started sharing my paintings on social media and knew that I wanted to help change the conversation about infertility by speaking about it publicly and explaining why I was painting so much!

In June, I shared my story on Facebook. It felt like I was finally cluing friends into my “dirty little secret” of infertility. I wasn’t at all expecting to get the reaction that I received. Thirty-seven (I counted) Facebook friends sent me private messages about how they are going through the same thing or just went through it.  I received texts and phone calls from old friends, coworkers and friends’ parents about their stories. I met countless others who have felt therapeutic by discussing their fertility challenges. Brian and I couldn’t believe it–if infertility is so common, why aren’t we talking about it? Why do I see commercials for restless leg syndrome and not IVF support groups and medicine?

After sharing my story publicly, I’ve continued to paint using the IVF needles and have found so much energy from this and the amazing infertility community I’ve found. Unfortunately, we had another miscarriage early last month at again 8 weeks, but my hopes are high and I’m painting and talking with other “TTC sisters” more than ever. Being open about this has helped me in many ways from my incredibly supportive work environment to the warmer smiles from acquaintances in the community. I always go back to the “be kind because you never know what someone is going through” quote I love.

I’m not great, but I’m fine and good. There are days when I randomly start crying in my car and there are days when I’m so positive and cheerful, it’s annoying. I like to joke about my situation using one of my favorite Seinfeld quotes, “That’s really the most important part of the reservation, the holding. Anybody can just take them. That’s exactly how I feel about my body right now. I can get pregnant but need to figure out how to hold the pregnancy. But through everything, the most important thing I’m learning is to stay open about the process. Other stories have helped me so much and I hope to help others. I don’t feel lonely anymore–I feel like a warrior in this struggle to achieve happiness. If I’m anything like my unbelievable mother (I am), I know I’ll be an amazing mom too one day–no matter how that happens.  But for now, I’m happy being me and using creativity and community to face adversity and win!

You can follow Jamie on Instagram @theglitterenthusiast 

Six Secret Confessions of an Infertile

by Elizabeth Walker

A couple of weeks ago, my husband, Scott, and I were interviewed by Steven Mavros of Waiting for Babies. It was a sort of pre-interview for the launch party and live taping that Maria and I will do in Philadelphia next week. (If you’re in the area, please join Maria and me in Philadelphia on August 9th for the Waiting for Babies launch party. Tickets are only $8 and include hors d’oeuvres and an open bar!)

It was the first time the two of us have been interviewed together and it was really valuable to share our story as a couple and reflect on everything we’ve been through over the past 8.5 years. I feel like we both gained more insight on how infertility affected us both individually and as a family.

It also got me thinking about all the crazy thoughts I’ve had along the way.  At the risk of sounding like infertility made me completely lose my mind, I’m sharing some secret confessions with you today. I figured I’m not alone in having some crazy or embarrassing thoughts while dealing with infertility. Maybe hearing mine will help you realize you’re not alone :).

NUMBER 1. I fantasize about finding a baby in the bushes or in the manger of a nativity scene during the month of December. I once read about a man who found a baby in the subway and eventually got to adopt it. If it happened to him, why can’t it happen to me?

NUMBER 2. I have felt extreme jealousy about the ability of Sea Monkeys to procreate. We had an aquarium of them when my nieces lived with us and there were new babies every single day. Why is it so easy for them, and so hard for me?

NUMBER 3. Likewise, when two tomato seedlings started sprouting in a dishcloth in my kitchen, I was first protective of them and then, several days later, in a fit of rage, destroyed them. Why could my twins not survive in my womb but these two little plants could spring up out of a dishrag?

NUMBER 4. I’m jealous that my friends get to hire babysitters. When I myself was in high school and a babysitter, I would fantasize of one day being the grown up and parent. The one who comes home in a glamorous dress after a night out with her adoring husband and pays the babysitter, asking what they did for fun while we were gone.

NUMBER 5. I seriously have to fight the urge to buy a baby doll every time I find myself in the baby aisle at Toys R Us. I think this also goes back to childhood and nurturing my dolls and dreaming of nurturing my own baby one day. Except that never happened. Now, I see the dolls through the cellophane windows in their boxes and long to take them home with me, knowing that that would truly be crazy and may be dangerously close to being completely unhealthy. Still, I’m tempted.

NUMBER 6. Recently, when I was walking my dog, I saw a neighbor walking down the sidewalk holding a newborn. For just a moment, I considered asking him if he’d trade me his baby for my dog.

What are your secret confessions as an infertile?

The Anchor

The Anchor
Jenny Cooke Malstrom
Poetry

Hope –

Like an anchor, they say.

Appointments. Blood tests. Ultrasounds.

Hope.

Steadfast.

Onward. Scheduling, timing, dosing.

Retrieve.

Retrieve,

Retrieve.

Transfer.

 

The anchor –

The symbol of hope.

How quickly the tides change.

Smooth seas begin to churn.

Rough, stormy red waters.

Saltwater tears; drowning.

This

anchor

feels

like

a

sinking

ship.

The waters darken, swirl, rage.

The waves crash, night after night.

Swells of tears.

 

A new day.

The sea calms.

Hope.

Still waters.

Steadfast.

Onward. Scheduling, timing, dosing, transferring, monitoring.

The anchor –

And still we hope.

A note from Jenny – We came through our diagnosis in an indirect manner, through learning about our family health history. Confirming a rare male-factor diagnosis of congenital absence of the vas deferens, we also learned of a female-factor uterine septum issue. It took over a year after our diagnosis to find providers we trusted and make a plan forward.

 

 

In the span of one calendar year, we endured:

  • A hysteroscopic surgery
  • Three rounds of IVF which included:
    • A failed IVF egg retrieval
    • A successful retrieval, using ICSI, freezing all
    • Another successful egg retrieval, using ICSI, culturing all
  • Successful fresh transfer of one embryo
  • Miscarriage at 6 weeks

 I love the symbol of the anchor, but have often thought about the paradoxical nature of it. How can something so heavy, so cumbersome, also signify something so light and enduring?

This work reflects my thoughts on our journey thus far.

 

Finding My Inner Warrior

Today’s guest post is from Taylin Beechey. Taylin says, “I found your website and found the idea of sharing pieces of our stories from our infertility experiences to be a beautiful idea. Along my journey I have kept a lot of writing about my experience as a young woman having been born with a rare birth defect leaving me unable to conceive with out IVF treatment. Four years later, I am pregant and I would love nothing more then the opportunity to share my story in hopes that someone, somewhere will find comfort in knowing they are understood, That they are not alone. I have attached my story in hopes you could read it. Thank you so very much in advance.”

So, we’re sharing Taylin’s story with you today.

Finding My Inner Warrior Through Infertility

Taylin Beechey

It took me a long time to decide if this was a story I ever wanted to share or not. For me, sharing wonderful beautiful things in my life has always been easy and I am sure it makes many assume I am a completely open book. Sharing the hard stuff though…that’s my real struggle.

The stuff that leads you to that dark place that we don’t like to talk about. For me, it’s mostly because of how uncomfortable it might make someone else feel. What if they don’t know what to say? What if they feel awkward around me after? No… I better keep it locked up to myself.

Taylin and her husband, Josh, in 2015. Photo by Devon C. Photography

That was then, this is now!!! I have come to realize that although there WILL always be people who it makes uncomfortable, maybe there will be one woman, one man, one couple that feels understood in a way that I didn’t. For me, that’s worth it.

There are some moments in life that we will always remember as vividly as the second they happened. For me this will always be the moment I was told I wouldn’t have children. Well the exact words were… “You have a rare birth defect and if you where my daughter and had XXXXX amount thousands of dollars I would do IVF today! Otherwise it would be advisable that you explore other means of starting a family.” Divine intervention must have taken over as I will never really understand how I even made it home that day. That 45 minute drive from my clinic is one I have no recollection of.

I can say for my 28 years I’ve lived and learned through my fair share of pain. I lost a parent, I’ve loved people who struggle with addiction, dealt with my fair share of mean girls, had more than enough heartbreak to last a lifetime.  Nothing on this planet has rocked me like those words coming out of the doctor’s mouth. The loss of a dream of a child you haven’t even met yet is a pain I cannot express to you on paper. It’s your whole life’s dreams wrapped up and tossed in a waste basket. A million thoughts go through your mind as a woman.

Wasn’t I born to do this? Am I not good enough to be a mother?
Is this punishment for something wrong I have done?
Maybe I could be that childless lady, the one with the really nice white furniture instead!
Why me? Why us? Will my husband still love me?

It is a spiral of thoughts, questions, and blame.  Trust me when I tell you that the level of CRAZY, we women are capable of, would scare most men ha ha. Nowhere else in life would a person be expected to experience this amount of pain and hide it. We mourn death, we rally around victims of disasters, we start interventions and support groups for addiction.  Infertility though, it’s in its own category. One that makes us feel we should be quiet. God forbid we make someone else uncomfortable due to our sadness.

Perhaps we keep it so quiet because the response to our pain can be so hurtful. I have lost count of the number of times I was told to stay calm. “STAY CALM IT WILL HAPPEN.”  CALM YOU SAY? How about I fire you from your job, rob your home, kick your car. “Now just stay calm.” How does it feel for you? Light or heavy? Those are all replaceable things. This child that I will never have and am mourning is NOT REPLACEABLE!!!!  So NO I will not be calm!

In fact, if your reading this do yourself a favor and be the complete opposite of calm. YELL! THROW A PILLOW AT THE WALL. USE A COUPLE OF WORDS YOUR MOTHER WILL DISAPPROVE OF! HA, HA, but really it’s true because I’ll tell you this pain, it’s deep and the only way to survive it is to let it all OUT! When you say this to us it’s actually insulting, and trust me when I say I know you meant it with so much love. I really do, and I’m thankful that you care enough to say anything at all. It’s not helpful though and it truly isn’t kind.

Taylin with her friend, Melissa Holman, at the cottage. Taylin says of Melissa, “My rock. A friend who spent weekly teas with me and was there for the years of finding out I was unable to have children and through all of my infertility treatments & later success.”

We don’t share our pain because we would hate to have it dampen your joy. We worry that maybe next week you won’t invite us to that baby shower, or Johnny’s first birthday. This also is not helpful. I do understand the logic and there were days when being near a child’s birthday would have done me in, but let me make that call. As there were also hundreds of days that my friends’ and family’s children were all that kept me going. I would look into their big glassy eyes and think, “I’m not giving up because this face is so worth everything I will have to do to get there.” So if you’re looking to do me a favor, do this. Let me hug your child a little longer, let me hold their hands when we all cross the street. Let me feel the magic that is a child who looks at you like you’re the coolest person they have ever met. I was blessed in this category by my friends and family who allowed me to love the hell out of their babies. I know you know who you are and am I soooo thankful. Your children saved me in ways I can never thank them for.

1 in 8 couples will experience infertility issues. This means someone you know right now is struggling. So please be kind don’t ask the newly married couple when they’re having babies. Don’t ask the partner who already has children if their spouse is the issue. Do not tell your friends how amazing it is that you just decided to try for the first time ever on Friday and BOOM had a positive test the following Monday. But do tell us your pregnant. Trust me, behind the pain we are so joyfully happy for you.

Do show us how much you love your children. it gives us something to keep fighting for. And, do as my friends did… hug me on bad days and celebrate with me when my day finally comes.

Infertility is a long and mostly dark road full of financial stress, needles upon needles upon needles, ultrasounds, and more doctors’ appointments than I can count. Sleepless nights of worry and prayer, tears, and breaks to catch your breath.

There is no right way to grieve a child that will never be. To mourn. To struggle and to face getting through each day. All I can say is feel every wave, the ones that have you unable to breath and the ones that allow you to float for a little while.

I don’t have the answer for why this is happening to you. I only know that the person who comes out on the other side will be the most bad-ass version of yourself you have ever seen. I know this because my biggest struggle as a mother came before my child had even been born.

You have a warrior inside of you that will blow your mind. I have done things in the past three years I would have never believed possible.  My husband and step-daughter look at me some days like I may be Wonder Woman and then I stop and think, “Hell, I kind of am!!”

Taylin, center, with husband Josh and step-daughter, Claudia.

I am 1 in 8. A soon-to-be mother, an IVF Warrior, a woman who will never be willing to take no for an answer. I’m surrounded by some bad-ass women and a wise step-daughter, a loving husband and some strong men, supportive family and one talented fertility doctor. And let’s not forget those above me, clearly sending down some love from the heavens!

I pray that if the moment ever comes and you’re in that doctor’s chair, that you know it’s ok to be weak. It’s ok to be scared. But, mostly importantly, it’s ok to let people in. This is where we find out what our relationships are really made of. At the end of your journey you’re going to want the people standing next to you to be the ones who weathered the storm with you. I have found my people through this pain and I have found some real beauty in this world along the way.

xox
Taylin

What IF?

Today, we’re sharing another piece from SEA-ART-HEAL: The ART of Infertility in Seattle. A huge thanks to Barrie Arliss and Dan Lane for submitting this piece and allowing us to keep it for our permanent collection! #artheals

What IF?
Barrie Arliss (with Dan Lane as illustrator)
graphic novel

A page from “What IF” – A graphic novel by Barrie Arliss, illustrated by Dan Lane.

1.5 years of every hippie method possible, I successfully got pregnant with one IUI. He’s perfect, and now almost 4 years old. We thought trying for a sibling would be as easy as doing that IUI…and we were wrong. I’ve heard so many stories from friends or on TV or through doctors how eventually—either with time or the right amount of persistence with treatments, I’d get this magical baby we wanted. But we never did.

2 years, 3 failed IUIs, countless cancelled cycles, 1 retrieval, 1 really horrible allergic reaction, and 3 failed IVFs later all I had at the end was 1 miscarriage. I never thought I would come out of this with nothing. After all the money and hoping and acupuncture and cutting back on running and eating more liver and so on and so forth, I thought that science would win. I hadn’t heard of the stories where people aren’t successful. Where no surprise baby suddenly happens after a year of ending treatments. No one seemed to talk about those. So the next year I did some major self care, and this graphic novel has been my outlet for healing. I may never get over the fact that we don’t have the family we dreamed of, but we’re moving on and creating this book for others who might be going through what we went through is helping.

These two pages of What IF, the graphic novel, depict the first time I had to give myself a shot of hormones for my 1st upcoming transfer. My husband wasn’t around that evening, and I thought I could do it–because I’m strong and independent and all the typical feminist stuff…but there I was, in the kitchen completely frozen with fear. If you can relate, I’m sorry and also, hugs!

Launch Point

Ben Holladay-McCann shares some of the challenges he and his husband face as gay men building their family. Read how they decided which option was best for them and how creating art is playing a role in their quest to become parents. Thanks, Ben, for sharing your story!

Launch Point
by Ben Holladay-McCann

From a young age, I knew that fatherhood was something I aspired to. The fact that I’m gay never phased me or stood out as an obstacle to achieving that dream. Sure, I knew it would be a challenge — the scales are tipped in favor of heterosexual people – though I’ve always been of the mind that any journey worth dreaming about is a journey worth taking, no matter the odds.

Ben (right) with husband Erik. Photo by Kendra Stanley-Mills.

Erik, my husband, shares my dream of raising children together. At first, we had explored the idea of adoption, which, though an awesome and noble avenue to take, can prove hugely challenging for LGBT folks. Most countries outside the U.S. will not adopt to gay parents. In a strange twist of happenstance, the governor of Michigan signed legislation permitting faith-based adoption agencies to discriminate against LGBT parents not long before we relocated to Colorado. Our home state is not unique in that regard, as several other states allow the application of the petitioning couple to be denied based upon nothing more their sexual orientation.

Though adoption was quickly removed from the table, we uncovered a new and more fundamental truth that lived deep within us; holding a genetic relation to our child was of greater importance to us than we had first known. With that in mind, having a child through IVF via gestational carrier as the path to parenthood was the only logical option for us.

Making the decision to pursue that route was the easy part, though it is not without its own unique set of challenges. Like so many others, our biggest roadblock was attached to the price tag. I remember staring slack-jawed at the full sum once everything had been tallied up. The total cost of IVF treatments is positively eye-watering. Resources to lighten the load do exist, though the majority are geared towards heterosexual couples. Most applications for grants or financial assistance list “husband” and “wife” on the form, rather than “partner’s name”. Even “Parent 1” and “Parent 2” would work in a Suessical pinch.

To complicate matters further, information about LGBT-inclusive adoption agencies can be tricky to find. Surely you can understand our sheer joy when we found an aptly named organization that exclusively helps gay men who want to have a child through IVF – “Men Having Babies”. Using the tools on their website, we poured over all available information and researched many different organizations nationwide before selecting InVia Fertility, out of Chicago. With that important line crossed off, we could turn attention back to the elephant in the room: how make this happen financially. As money savvy as we fancy ourselves to be, our piggy banks wouldn’t provide enough of a springboard on their own. We had to broaden our sights to help make this dream real.

Ben and Erik, surrounded by loved ones. Photo by Kendra Stanley-Mills.

Education is an important component of any fundraising effort, and we are not unique in that regard. As a part of this process, we have sought to bring awareness and information to our friends and family. Try as we have, however, some have made the assumption that adoption, rather than IVF, is the end goal. On more than one occasion, well-intentioned people have asked “what country will you adopt your child from?” or “have you met the birthmother yet”? We are surrounded by people brimming with excitement for us to become fathers, though some may be unaware of the complicated nature this road holds for us. Launching a crowdfunding site hosted by YouCaring.com has provided an effective platform to keep our loved ones up-to-date on our journey while serving to dispel any mysteries surrounding IVF and what that looks like for us.

Ben’s passion for knitting is helping build his family. Photo by Erik Holladay-McCann.

More creative means of capital generation are also supplementing our crowdfunding efforts. I have been a knitting hobbyist for years, though this new adventure of ours provided me the push to begin selling finished works and patterns of my own design, under the brand “NoahNoa Crafts”. Though a seemingly unusual brand title, it was born from the love that my husband and I have held for the name, Noah, for years. When translated from its original Hebrew roots, it embodies “comfort”, while its feminine variant, Noa, signifies movement. It only seemed a natural fit, as those are two qualities I love most about knitting, and hope to model to the children we bring into the world. While getting a small start-up such as this off the ground can be time-consuming and occasionally stressful, it is ultimately rewarding, which is not entirely different from parenthood.

Follow Ben and Erik’s family building progress on You Caring and shop NoahNoa Crafts.

Infertile Enough?

Today I am dedicating the blog to National Infertility Awareness Week and to the launch of Justine Brooks Froelker’s latest book The Mother of Second Chances, based on her blog Ever Upward releasing on April 17th. For five weeks 25 amazing women will share their stories of infertility and loss as part of this incredible blog tour, because together we can shatter the stigma. 

Yesterday Jody shared her story and tomorrow we will hear from Heather at Beat Infertility. We would love for you to participate by sharing these posts far and wide. We’d especially love to see your own broken silence by sharing your own infertility story using the hastags: #NIAW, #infertility and #EverUpward. 

When I first started trying to conceive, I was convinced I would get pregnant immediately. When I didn’t, I wasn’t too concerned. I’d been on hormonal birth control for over a decade and it can take some time for cycles to return to normal. However, as time passed, I was feeling more and more anxious and isolated.

Having turned to a support group after my sister-in-law died, I felt like I needed one for infertility. However, I didn’t feel like I had suffered enough. I hadn’t even started taking Clomid yet. Surely the support group would include members who had been through far more than I had. Would they feel like I was making a big deal out of nothing? Did I belong there?

After a year or so, I took the plunge and attended my first group. What I learned was, that, even though there were individuals in my group who had been dealing with infertility for much longer than I had, came from different backgrounds, and were at various stages of treatment, the emotions that we had were the same. They understood me in a way that others could not.

Still, in our pain, it was easy for us to judge each other and for us to compare stories. I was in the two-week-wait of my first intrauterine insemination (IUI) when I went to that first meeting. I had insurance coverage for IUI, so my husband and I decided that we would do 3 or 4 before considering moving on to IVF.  It didn’t take long and it was time to make that decision.

I didn’t want to do IVF. I mean, no one WANTS to but I was really struggling with it. It was a tough decision. One that took me seven months in therapy to make. I was resentful of all the decisions infertility was forcing me to make. The average person decides they want to have a baby, throws birth control out the window, and before they have a chance to second guess things, is pregnant. Infertility requires us to make decisions at every turn and gives us time to doubt each decision we make.

My husband and I decided that doing one cycle of IVF was the right choice for us. Here are the meds from the retrieval and two resulting frozen embryo transfers. On display at the A/NT Gallery in Seattle, April 1 – 30, 2017.

One of the things I was struggling with the most was how others might perceive my desire to be a parent if I wasn’t willing to go to any length to become one. If I never tried IVF, and moved on to adoption or living child free after my four unsuccessful IUIs, would that make me a less infertile infertile? It was something that I joked about with my fellow support group attendees to try to ease the tension but it really wasn’t that funny.

Through therapy, I was able to come to a point where I was comfortable making the decision that I felt was best for me and for my family, even if others may judge it. Dealing with infertility taught me that no one can truly know what they will do in a situation until they are faced with it. And, the right decision for one person, will be completely the opposite for the next, and that’s okay. Just because a person wasn’t willing to exhaust every financial, physical, and emotional resource, doesn’t mean that they didn’t want to be a parent badly enough. There’s no giving up. Just choosing a new goal, based on the hand that we’ve been dealt.

Eight years after I first started trying to conceive, I haven’t completely resolved my infertility. I’m not sure if my story will end as a parent, or as someone living child free. However, I’ve found peace, and my own infertility success story, through my work with The ART of Infertility.

I no longer judge myself based on what others would think of me and that’s part of why it’s so important to me to collect and distribute diverse stories of infertility through the ART of IF oral history project. I had a choice to pursue IVF or not. However, so many people deal with financial infertility and IVF is not even an option. We don’t hear those stories and they are important.

We often hear the stories that end with a baby. However, not every infertility story ends that way and the stories that don’t are important.

Infertility doesn’t discriminate. It affects people from all races. However, as one African American woman we interviewed said, “Infertility doesn’t look like me, and that can be lonely.” The infertility stories of men and women of color are important.

Your story, no matter where you are in your journey, is important. So, please, if you are debating whether you are “infertile enough” to attend an infertility support group, you are. If you are wondering whether you’re a less infertile infertile because you are choosing adoption over IVF or drawing the line at third party reproduction, you’re not. Don’t let what others may think keep you from finding support. We all have to make our own decisions and do better to respect the decisions that others make. We are all in this together.

Living with an Invisible Illness

by Elizabeth Walker

Throbbing, wrenching, searing, exhausting, sickening, miserable, and dreadful. Those are the words I chose from the McGill Pain Questionnaire to describe the pain I felt during a flare of my fibromyalgia last week.

I’ve dealt with chronic ailments my entire life. When I was in elementary school, it was migraines. As a teenager, it was irritable bowel syndrome and what I now know was endometriosis. In my early twenties, I developed chemical sensitivity and was covered in itchy red welts over my entire body for two years straight.

Then, in my mid-twenties, the chronic, widespread pain set in. Pain. All over my body. All day. Every day.  Along with the pain was sheer exhaustion. No matter how much sleep I got, it was never enough and I would seriously melt down over the thought of the energy it would take to do simple tasks like filling the dog’s dish or responding to an email.

After nearly eight years of the pain and exhaustion, visits to specialists, a battery of tests, and several stints in physical therapy, I was finally diagnosed with Fibromyalgia. Fibromyalgia (FM) is a central sensitization syndrome. Basically, my central nervous system is on high alert at all times and pain, and other sensory signals, are amplified.

It turns out, that all of those other problems I’d had earlier in my life fall under central sensitization syndromes as well. Migraines, irritable bowel syndrome, chemical sensitivity, endometriosis. They all fall under the same umbrella. As do temporomandibular disorders (otherwise known as TMJ or TMD) which I have also since been diagnosed with. Additionally, interstitial cystitis, restless leg syndrome, and even post-traumatic stress disorder are categorized this way. Often, as in my case, patients present with different central sensitization syndromes over the course of a lifetime.

Most of these syndromes are invisible, but the implications on those diagnosed can be debilitating. My FM has caused me pain nearly every day of my life for the past 15 years. When I get what I call a flare, I’m in excruciating pain, shaky and nauseated, for at least two and a half days at a time. Flares can last up to a week and can occur as frequently as twice in a week.  I’m in complete misery. Yet, people often tell me when I’m in a flare, that even though I report that I feel dreadful, I look great.

I never really believed this until recently. A co-worker emailed me a photo that he took of me at a work event. The day it was taken, I was dealing with maxed-out pain. The absolute worst it gets for me. It was so bad that, not to freak anyone out, I was actually thinking about how I could put myself out of my misery in a way that would have the least amount of impact on my family. How would I do it? Where? When, exactly? However, looking at the photo, you would never know it. I’m smiling while I work, carrying my big heavy camera, walking around in strappy high heels.

A photo of me on one of the most miserable pain days of my life.

My chronic pain and fatigue have had a huge impact on my infertility journey. When I was finally diagnosed with FM, I was already trying to conceive. Because of this, I wasn’t able to try any of the medications used to treat FM. None of them were appropriate for someone who was pregnant, or trying to get pregnant. I couldn’t take the medications, but I couldn’t get pregnant either. Then, I started taking other medications to help me get pregnant and they made my pain worse. Yet, I still couldn’t achieve a pregnancy.

It was a vicious cycle and I felt like I was running a marathon that would never end. So, I took a break to try meds for a while. Cymbalta. My miracle drug. I don’t know how managed before it. While I still have pain nearly every day, the intensity of my day to day pain is decreased while I’m taking this medication. Life is much more manageable.

When quite a bit of time had passed and it was time to get back to fertility treatments, I had to go off my meds. For me, weaning off Cymbalta is done gradually over the course of a couple of months and the withdrawal symptoms can be unpleasant, dangerous even. Brain “zaps” (which feel like electric shocks shooting through your brain), vertigo, anxiety, nausea, tremors, visual disturbances. Not only is this scary, I was terrified of how intensely my pain would return after the Cymbalta was out of my system. However, I couldn’t move forward with treatment for infertility without discontinuing the meds I take for pain, so it was the only way to go.

No more Cymbalta, just more infertility medications. Medications delivered orally, by suppository, by injection. No pregnancy, just more physical and emotional pain. A variety of invisible ailments. Invisible disabilities.

I’ve been thinking about this a lot over the past few weeks. A year ago I changed my diet. I now eat a Paleo diet and have had some allergy testing so I avoid the foods I found out I’m allergic to as well. No sugar. No dairy. No grains. No eggs, pineapple, paprika, asparagus, crab, trout, and more. The results of the change in diet have been life changing. It’s meant that I’ve actually had some pain free days over the past year. Something I hadn’t experienced in well over a decade. However, the past couple of months have been hard. I’ve continued to eat a strict diet, but I’ve had more frequent flares. It scares me. I wonder if it means that I’ll soon go back to living in fear like I did not long ago. Back to week long flares several times within a month.

The other reason I’ve been thinking about it is because I’ve joined the Diversity, Equity, and Inclusion committee in my department at the University of Michigan. I’ve been working on populating the committee’s website and have been gathering information from the members of our team. Which areas, pertaining to diversity, should I list as their areas of interest or expertise? Which topics should people feel comfortable approaching them about for mentorship or assistance?

I’m guessing that the majority of the people on the committee with me, let alone that work in my 1000+ person department, have no idea that, despite looking healthy and “great”, I’ve become well versed in the human resources policies for medical leave, and my rights as a person with a disability, due to my fibromyalgia, my infertility, and the two medical leaves I had to take within a year of each other as a result. They would never guess that the issues I can help my fellow co-workers with are disabilities, medical leave, grief, miscarriage, and more.

Through it all, I’ve had an amazing support system. Friends who understand when I need to cancel plans because my pain is unbearable. Family members who make sure the holiday meals include foods I can eat. My husband, who let’s me sleep the entire day if I need to, and plays me funny cat videos to help take my mind off things for a little while.

I also have an outlet through my art. Somehow, creating is healing. Whether it’s the calm I feel brushing acrylic paint across a canvas, or the meditative act of weaving with wire, I feel steady. I feel like I’m more than my pain. More than my disability.

I invite you to join me, and The ART of Infertility, at SEA-ART-HEAL: The ART of Infertility in Seattle. You’ll have an opportunity to see the healing affect that art has had on me, and on others in the infertility community, through a collection of art and poetry on display at the Art/Not Terminal Gallery at the Seattle Center the entire month of April. Our exhibit opening reception is April 1, from 6 – 9 pm.

This exhibit, and the accompanying film screening of the movie, One More Shot (with a Q&A with the filmmakers), and a blackout poetry art workshop, are funded in part by the Seattle Office of Arts and Culture and sponsored by Pacific NW Fertility, Seattle Reproductive Medicine, Embryo Options, Acupuncture Northwest and Associates, and SIFF Film Center. Our media sponsors are ParentMap and The Stranger, and our community partner is Baby Quest Foundation. You can get all the info you need about the exhibit events, including registration, and how to buy a ticket for One More Shot, or reserve your space for the workshop, at http://bit.ly/SeaArtHeal (If you are interested in spreading the word about this event to your networks, please email me at info@artofinfertility.org and I will send you a tool kit :)!)

If you’re not in Seattle, don’t worry. We’ll have a lot of artwork and stories headed your way via our social media throughout April. We also have events coming up in Boston, Washington, D.C., and Los Angeles. You can check out our complete schedule on our website. http://www.artofinfertility.org

Wishing you health and peace on your journey,

Elizabeth

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.

 

 

My Donor Egg Baby Is Five

by Robin Silbergleid

Before I took the plunge into becoming a single mother via donor gametes, well-intentioned friends (and strangers on the internet) told me that once my son was born being his mother on a day-to-day level would eclipse DNA.  My doctor, on the other hand, cautiously warned me she had a patient who never managed to bond with her baby born of donor eggs.  Both these scenarios seemed unfathomable to me.  And, indeed, even as I loved him ferociously from the moment the second line came into focus on the home pregnancy test, for the first years of my son’s life, there wasn’t a day that passed that I didn’t think about the years of fertility treatment and anxiety-ridden high risk pregnancy that followed, that I didn’t wonder about the egg donor who provided her DNA.

At some point that mental-spinning stopped.  It’s hard to know when.  But I suspect now, looking back, it was around the time my son turned four, after the fog of hormones and sleeplessness faded, when I published a book about IVF, started participating regularly with the ART of Infertility, and offered to donate my remaining embryos.

candles_lit5My son is now five, and daily I run the gamut of emotions that go along with being a mother to a preschooler.  Impatient that it’s taken a good fifteen minutes to get him into the bathtub. Anger that he’s thrown his shoes (for reasons only understood by small children) up to the ceiling to crash down on the lamp in our entryway.  Delight at helping him climb into a crabapple tree.  Pride that he gives his only dollar to the homeless woman at the entrance to the highway.  Nostalgia for those days I rocked him for hours in glider, at once grateful he existed and desperate for him to sleep.  Our relationship, as all mother-child relationships, is both extremely complicated and pure.

I have not yet told him about his origins, as he’s barely begun to ask about ‘how babies are made’ in the usual sense; using his best preschool fantasy, he’ll talk about how he was alive when I was a baby in grandma’s tummy.  In a more immediate way, we’ve needed to address the fact that he doesn’t have a father, although because we’re not at the sperm-meets-egg part of the story, even the term ‘donor’ hasn’t made it into our lexicon.

It’s not a big deal.  And, indeed, I rarely have the moment that I think about the fact that my relation to him is different than my relation to his sister, conceived the ‘easy’ way via unmedicated IUI.  But I am still caught off guard when someone who knows something, but not everything, of my story observes that this fair-haired boy looks a bit like me (huh?).  It’s in that moment I remember the kind-eyed woman smiling at me in the clinic waiting room for one of those too-early morning ultrasounds in the week leading up to IVF retrieval, the woman I’d never seen before in all the months I’d been there, the woman, as I remember, who, in fact, looks a great deal like my son.

I will never know who she is, as I deliberately worked with an anonymous donor and declined all but baby pictures.  She is not part of my family, although her generosity made it possible.  As my son grows, as that sperm-meets-egg moment recedes in its significance, I continue to rewrite our family narrative.  On my son’s birthday this year, the friend who accompanied me to embryo transfer and–exactly 37 weeks later– his birth, presented me with a black and white photo taken in the recovery room, where I held my swaddled newborn and my then seven-year-old daughter looked on with a soft smile.

This is not an argument for why you should do a donor egg cycle if you’re thinking about it, or even acknowledgment that those well-intentioned strangers were mostly right.  My thoughts on having a child via egg donation have changed many times, and I have no doubt that they will change again, as my son grows and asks questions and as working on ART of Infertility continues to reframe my own infertility story.  Now more than five years out, I can say the gift of infertility is in the relationships it made possible, and for that I am eternally grateful.