National Infertility Awareness Week and Going Public with POF

This week, April 19-25 (or 20-26 depending on what site you reference) is National Infertility Awareness Week. I'm doing something a year and a half ago I thought I was incapable of. Coming forward publicly. I'm still writing this blog anonymously so I'm able to digest, rationalize, whine, be raw and honest, and live in "real time" all my trials and tribulations without censoring myself, but this is the letter below I crafted to put on to Facebook to "come out of the closet." 

I'm nervous how people will react and bracing myself for any harsh words and criticism, but after praying about it, I think there are many more women and men living in the shadows who can hopefully benefit by transparency on the matter. You've my permission to share my story or blog with others you think need some encouragement.

If you want to "come out" yourself here are some banners for Facebook. For those of you NOT struggling but want to show your support, you can go here to put a small ribbon on your profile pic.

Well, here goes. This is my announcement I will publish tomorrow... Wish me luck...

"This week is National Infertility Awareness Week. For a year and a half, I’ve carried a secret. A dark, painful secret. We are one in eight couples, we struggle with infertility.

A year and a half ago, I was diagnosed with Premature Ovarian Failure (POF) and I was told I was irreversibly infertile. I was told my ovaries did not work, nor would they ever work again. I was told I would never be able to conceive without a donor egg, and my hormones were so atrocious, I would never even be able to ovulate. My hormones were that of a 120 year old post menopausal woman.

My world, crashed. For anyone who knows me, my greatest joy, is my son. I’ve been blessed with one incredible child, but having that choice taken away to have another child, that innate right as a living being, dashed, left me devastated. Even down to single cell organisms, their purpose is to reproduce and propagate life. For those who chose not to, it is by choice. To have it taken, it hurts.

I was mad, hurt and I felt isolated. Most of all, I felt broken. The painful part of infertility is, your head can tell you one thing, but your heart says another. I didn’t feel like a woman anymore. I didn’t feel in control.  I felt like I was spiraling, and it was humbling to realize I had absolutely no control, over my body, my emotions, nothing. I felt ashamed I’d taken away my husband’s opportunity to be a father again, guilty I’d taken away my son’s right as a brother. My husband and I did the only thing we knew we could do, we turned to God and leaned on each other.

Each time I debated coming forward or sharing our journey with someone outside the small group of support we had, I got scared. The internet, although a safe haven for me during my darkest hours reading blogs of people coping and through various online support communities is also very cruel. Infertility is treated as a flippant condition full of narcissistic silly people. So, I got scared.

Scared I’d be ridiculed for choosing to pursue holistic treatment versus a lifetime of medication within the confines of Western medicine. Scared I’d be criticized for not being “grateful” enough for the one son I had and being told I was selfish for wanting more children. Scared I’d get well intentioned, unsolicited advice for how to treat or build our family.  With POF, you either have no eggs, or the pathways that recruit and grow follicles are disrupted so there is no “treatment.” There is no IVF.

Scared I’d be reminded to be happy or relieved I don’t have something serious like cancer. I know I don’t and thank God for that. But, demeaning any pain I feel still hurts, no matter how insignificant it looks from the outside. Reminding me to be grateful for the health I have in a moment of despair makes the guilt I already feel over feeling bad only magnified, because I already know how lucky I am and I’m grateful. I am.

Scared I’d be told I was narcissistic for not “just” adopting, which is easier said than done. I’ll let you in on a little secret. It’d not “just” that easy. It’s invasive, time consuming, expensive and there is often a lot of red tape and heartbreak. Most times people are exploring that option, so cut them a little slack. Contrary to public opinion, there aren’t babies lying around waiting for families. Each child that is born, thousands more parents wait to be picked as parents, both foreign and domestic.

Children waiting within the system often times need families with unique sensitivities and training to accommodate medical or psychological needs, which is incredibly rewarding, but adoptive parents need to be honest with themselves regarding their abilities and desires. Other children waiting come with large sibling sets, so a waiting family sometimes has to be willing to adopt three, four or five children at a time. All rewarding and certainly a blessing for these families, but something to be entered into with careful consideration and with your heart wide open.

You see, unless you’ve walked the walk, there’s so much you can’t understand. Infertility is an emotional and raw journey. It deals with the most intimate acts between spouses and for that reason, often whispered about in the shadows. It’s raw because it deals with real pain where you are left to grapple with decisions about your family, your livelihood.

Infertility can be expensive, and add strain to a marriage. Treatments typically aren’t covered, and in my case, my care wasn’t either because my condition was a result of “infertility.” I couldn’t even meet with a doctor who was familiar with my condition (which is too rare for the average OBGYN to be knowledgeable in it) because they were all considered “fertility” doctors and my insurance wouldn’t even cover a consult, let alone care or fertility options.

There are real physical limitations to infertility. With my condition, I left the doctor’s office with a projected 5-10 year shortened lifespan. An almost guarantee of osteoporosis and a very real heightened risk of stroke, heart disease and cancer. I would also struggle with symptoms such as night sweats, hot flashes, low libido, brain fog, extreme mood swings, bloat, and insomnia.  Imagine going through menopause…for 20 years. Diseases like PCOS and endometriosis and many others related to infertility also come with their own set of physical setbacks.

After a year and a half, with my husband by my side, I’ve decided to come forward with my journey. Why? Because. I was the one in the shadows before. I was scared. I was alone. I was weak. I was emotional. I want to let people who are struggling with this know they are not alone, and for others, I hope to offer a subtle reminder why compassion, understanding and acceptance is so important. Those with infertility don’t want pity. They don’t want suggestions. They don’t want scorn or judgment.

Over the last year and a half, I’ve grown. My health condition has made us take a serious look at our lives. POF is often times a result of chemotherapy, cancer treatments, autoimmune diseases or a genetic condition. My POF is unexplained.  Different doctors theorize it may have been in utero damage that stopped my egg production, or more probably environmental toxins and stress.

I credit everything to my Lord and Savior for giving me strength when I was weak and healing during my darkest hours. With prayer and consideration, I’ve explored Traditional Chinese Medicine and treat with prescribed herbs, acupuncture, chiropractic care, supplements, essential oils and a lot of meditation and prayer. We eat organically and whole foods, ridded our house of harmful chemicals and I started making our cleaners and personal care products. I’m monitored by my doctor with bone density scans and hormonal testing every six months or so. My decision came from not wanting to mask or treat symptoms of my disorder for the rest of my life, which would give temporary relief, but heal my body as a whole and support it’s functioning on its own.

I am asymptomatic now and my hormones have improved. Although I fluctuate between perimenopausal and menopausal, the greatest odds I’ve been given to date is a conception odds of one in a million. In fact, the last doctor I met with, said my labs were so bad, that his guess is I had this condition for years and Reed was my miracle of miracles, my one in a million.

My “healing” thus far has astounded doctors. I cycle on my own occasionally, something they said was impossible, and my estrogen level of “0” is now within low “normal” ranges. I whole heartedly believe our bodies are miraculous and their healing capabilities are beyond the scope of medical understanding. I believe God is capable of all healing and miracles.

My husband and I are on a wait list for embryo adoption, have started the process of foster to adopt and are still optimistic of another miracle through natural conception.  We trust the Lord completely that our child or children will come just the way they were intended and we will rejoice to welcome that blessing or blessings into our home, completing our family. For the time being, we enjoy every moment with our boy who brings immense joy into our lives.

To all my friends out there who struggle in the shadows, my thoughts, my prayers and all the love I can muster surround you. You are not alone and I promise I will walk this journey along side you if you need a hand to hold. Stay strong. God Bless."