Loss

Sadly, many of us have had friendships strained, or lost, as a result of our infertility. These secondary losses can be incredibly tough.

We received an art submission for our exhibit, SEA-ART-HEAL: The ART of Infertility in Seattle, that directly deals with this kind of loss. We’re sharing it in today’s post.

Have you lost a friendship as the result of your infertility? What was that experience like for you? Perhaps you would find it helpful to express those emotions through creating a piece of art, like this artist (who wishes to remain anonymous) did. If you do, we’d love for you to share it with us!

Loss
Anonymous
dress, paint

It is March. I have been bleeding more days this year than not.
My best friend, who gave me this dress, had unprotected sex
one time and got pregnant. When I also was pregnant, I could roll
my eyes at that. When I was not pregnant anymore I was
NOT OK.
I miscarried a baby that cost me thousands of dollars to get pregnant with.
“Two days ago I cried to (husband) and told him I hope I fucking miscarried so that you’d take me back.”
STOP (insert more abusive bullshit).
JUST STOP.

I lost my baby but I also lost my best friend.

Loss by Anonymous. dress, paint

 

 

Beautiful Pain

We love getting mail! A few months ago we received a letter from Kristen Fields, who wrote, “I was so inspired by your project that I ended up writing a poem this afternoon about my struggle with infertility this year. It was so therapeutic and I think will be a lot easier to share with friends and family because it’s a more wholistic way of expressing all of the complicated emotions this journey holds. So thank you for existing and showing up in my Google search, because it has seriously restored something inside me and made me feel less alone, and like I could contribute somehow! Please let me know if I can/ how to submit my poem. Thank you! Kristen”

We invited Kristen to submit her poem via one of our artwork submission forms, and she did. So, today we are happy to share Kristen’s poem with you. We hope that it will make you feel less alone, and that you will be inspired to contact us and share your own poetry and artwork with us.

Thank you, Kristen, for sharing your poetry!

Four Seasons in Japan by Masakazu Matsumoto

BEAUTIFUL PAIN

“Behind every beautiful thing there is some kind of pain.”
– Bob Dylan

There was some kind of pain
In Fall, our favorite season,
Unashamedly reveling in all that was still unshattered.
Making plans with closed eyes and open hearts
Naïve to the coming winter with long nights and a cold sun
Who bites at the things which we expose.
Attending appointments, sitting naked on a table,
Left waiting. Cold. Shivering. Bitten.

There was some kind of pain in Spring
With hope sown in new creation.
Earth poured out her showers
And let out roars from Heaven
Which fell echoed against the walls of this hollow room.
The rainbows dawdled behind rainclouds
But the colored beams always seemed to fade.
Surrounded by new and flourishing blooms,
Our tilled and nourished soil remained
Caked underneath our fingernails,
And in empty tear-soaked patches behind white picket fences.

There’s pain, I fear, in the
Summer’s sun with its warm and inviting glow
That shines of hope, a brighter outcome.
But I find myself after these three seasons lost
Burrowing,
To hold myself safe from getting pulled out into the tide.
Afraid to be crashed back onto the shore again,
Rejected by the Sea.
And then to face yet again our Brutus, Fall,
Whose cooler months might be the severest of them all.

__________________________________________________________

But it’s beautiful, you see,
To be surrounded by seasons,
To fall deeply in love with little souls you’ve never seen,
To think up their names and habits and traits and dreams
To peek inside the room that will hold their things
And pray that God would just give them to me…

——-

A note from Kristen,

“I wrote this in the wake of yet another negative pregnancy test. After being diagnosed with PCOS in the midst of us TTC our first baby, every month and every season has been harder than the last as the fear of the unknown, frustration with the wait, and multiplying insecurities grow with each negative test. I chose to write this poem the day I found out about this organization, as I wanted to be able to be a part of something bigger and hopefully resonate with other women going through these same beautifully painful seasons since this whole process can seem so lonely and isolating– that they might know they are not alone and find hope in the beauty that surrounds the pain.”

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

Five things I Wish I’d known when First Diagnosed with Infertility

Awhile back, a friend asked me what I wish I had known when I first received my infertility diagnosis. While there are hundreds of things I’ve learned over the past seven years, these are some that have proven to be very helpful to me in my journey. So, I’m sharing them with you today. 

Elizabeth

1. Resolving your infertility will likely take longer than you expect. Hopefully you’ll get lucky and it won’t, but you should be prepared for a long process.  It’s going to take some time to move through testing, treatment, and finally reach resolution, whether it’s through treatment, adoption or ultimately choosing to live childfree. For this reason, I often tell those who have recently been diagnosed to take some time to adjust to their diagnosis, find out what their options are, and move forward with the most aggressive option available to them as soon as they are ready.

E. Walker FET.xls

A portion of the medication calendar for my first frozen embryo transfer.

2. It’s okay to take breaks.  Sometimes breaks are forced, due to medical or financial reasons, and sometimes they are a choice. Either way, try to make the most of your “time off”. Infertility is all consuming, even when you’re not going in for daily ultrasounds and stuck with a curfew in order to inject yourself with meds at the right time. Take this opportunity to connect with the people and activities that you enjoyed before you started dealing with Infertility. Explore new hobbies, whatever they might be. Or, just sleep if you have no energy for hobbies after the marathon of medical appointments you’ve just endured!

3. Make friends with others experiencing infertility. No one else is going to understand the mix of joy, agony and guilt you feel when a family member announces a pregnancy like they are. No one else can give you some Lupron when your doctor’s office doesn’t have any on hand and your order from the pharmacy is delayed by a snowstorm (thanks, Jessica!) and no one else can easily decode the sentence, “I’m 6DP5DT. I triggered on April 10th. When do you think it’s safe to POAS?”

infertility friends

Infertility friend, Lindsey, and me. I visited with her and three other infertility friends in Columbus over the weekend.

4. Be kind to yourself. Treat yourself to little things that make you happy. It’s important to set boundaries for self-care. Say no to attending baby showers, leave the family Christmas party before Santa shows up to pass out gifts to the kids, or visit friends after their toddler is in bed for the night. Above all, always have an escape route and reward yourself for doing things that are hard. I always take a trip to Sephora or Ulta after a trip to Babies R Us, for example :).

Nail_polish

A new bottle of nail polish is an inexpensive reward after shopping for a baby shower gift.

5. Share your story. Whether it’s with one family member you can trust, a group of others struggling with Infertility around a table at a support group meeting, or publicly through social media. Infertility can be very isolating. Sharing your story will benefit you and others by creating a community of support and awareness and reminding you that you are not alone in your struggle.

Interested in sharing your story through the ART of Infertility project? We are always interested in talking to those who would like to be interviewed or contribute to the project through art or writing