It's been 1 year. Well more than that if you count the months before being diagnosed. But I hadn't spiraled then. Things were in the range of normal. 3 months trying to get pregnant without success. Not a big deal yet. Then a positive pregnancy test followed by bleeding 4 days later. That's the truth behind these 2 pictures from a 2 year-old birthday party on Labor Day weekend 2019.
Wasn't much more than a heavy period. But now when I see this picture, it's the main thing I remember. Asking Elise for an Advil the night before for cramping. Taking a pregnancy test the morning of these pictures like my doctor said to make sure it was negative. I even told someone that day that we were not getting pregnant. The response: "It'll happen."
Fast forward to Dec. 2019. After 2 cycles of not ovulating, things were obviously wrong with me. I had an appointment but asked for blood work before going. The internet and my gut told me it was PCOS. "Lean PCOS" kept coming up and described me to a T. About a week before Xmas an ultrasound confirmed it. I laid in bed Xmas afternoon crying over my hair (I'd started to suspect it was thinning. This day it was very oily). But I wasn't in total despair yet. I had a pill (Letrozole) and plenty of reason to think it would help me get pregnant. Some internet searching had led me to start taking supplements. We went to the coast to visit friends and I took about 8-10 pills each morning and peed on ovulation tests.
This picture from my first visit ever to a casino. A fun night. But looking back at pics I only felt panic at how thin my hair looked. Maybe it's because it was still wet, but my brain could not listen to that possibility. The spiral begins. I buy a big pill organizer to hold all the supplements.
A nice enough picture from church one day in Jan. 2020. I remember oily hair. Soon after I dove into dietary changes. No alcohol. No caffeine. No gluten, dairy, soy, vegetable oils, sugar, popcorn, corn, peanuts, bananas grapes and apples because they're too high in sugar, chocolate but only 75% cacao or higher, organic, no meat? or only grass-fed meat, sea salt, cinnamon but not regular cinnamon - Ceylon cinnamon, butter? only grass-fed, rice? red or black rice, etc. I start having chest-tightening anxiety.
How to live like this? Panic after eating an açaí smoothie bowl that had granola.
Joe and I start working out in the garage every night.
February 2020 - A visit to Taylor Grocery with family was slightly tainted by my new efforts to go gluten free. I love their fried fish. I got grilled. No one had told me anything about diet or supplements. I was left to discover it all on my own. Online. Podcasts and instagram accounts. Facebook groups. People like me that had "healed their PCOS" they said. That had reversed their hair loss. I read that if your hair continues to fall out ... that each time it grows back thinner and smaller and eventually not at all.
Anxiety spiral leads to more internet searching and extreme purchasing of products and supplements. Joe, "What's in that box?" as another Amazon box arrives.
Me: "I can't remember."
Church pancake supper - no pancakes for me.
Packing for a Disney cruise panic. What will I eat? Can I bring loose leaf tea? How to pack all these supplements? Before the cruise I had 2 weekends in Jackson, significant trips. Because I had become desperately attached to being home on the weekends so I could eat healthy. Leaving town meant food insecurity. Where would I eat? What could I eat?
A late period brought some hope until it started on the last night of the cruise. Crushed again.
Then along came Covid. Quarantine offered so much time. Too much time. Time to think. Time to spiral. Time to notice every hair falling from my head or every zit on my forehead. Time to make more diet changes. Exterminate the last bit of sugar. No more grapes or gluten-free granola with yogurt.
No more Go-Freshly lunches. No more Letrozole. I decide I have to find a sustainable way to live beyond pregnancy.
My days are consumed with cramming as many nutrients into my body as possible. Eating and drinking teas, smoothies, mixing powders and things like lion's mane, reishi, ashawaganda into drinks.
I no longer look at Facebook. The groups I joined for PCOS just give me anxiety.
I mute many instagram accounts. Pictures of maternal happiness = anxiety.
Limit how much I can look at instagram period. I can no longer take in any more PCOS info so those accounts = anxiety. Black Lives Matters accounts = anxiety. Take the MS flag down = anxiety. COVID = anxiety.
Did you know stress makes PCOS worse? Cortisol wreaking havoc on hormones, etc. But PCOS is stressful. Most of quarantine I find myself caught in a stress cycle. PCOS, Covid, and some other heart shattering news I won't go into. I start mediating.
"You just don't look like you have PCOS." - This comment from multiple people, including health professionals, is MORE than unhelpful. And just a few weeks on the internet had shown me that women with PCOS look like... all types of women.
To say I've found a balance feels a little too confident. Going back to work helped. It forced me to find balance. Until the latest pregnancy failed. This makes 3 total positive pregnancy tests that didn't result in a baby, but this one stuck around for about 6 weeks. This one let me hope, caused me nausea, and seemed for real. This one was more than a heavy period. And this one wouldn't end on it's own. 3 weeks of bleeding. 3-4 ultrasounds that only confirmed I was still "pregnant" at least in terms of what my hormones would say, even though the embryo disappeared before there was ever a heartbeat. 1 week a yolk sac was there. The next, nothing. At least I got to be put under for an hour or so to get a DNC. At least I got to be not awake for some portion of this god-awful year.
Oh cool, you only do DNC's on Wednesdays. Guess I'll just go back to work the rest of the week. The rest of this year.
Being a bee, 2 weeks post-DNC.
And now I have a whole new set of triggers. There was a time in my life when I had no triggers, but now there are too many to list here. And it feels shitty to list other people's happy instagram-able moments as something that now makes me sad. Sad and angry. Angry at everybody and angry at nobody.
At times I imagined posting about PCOS but only if I could do it from the side of "Hey I found out I have PCOS but it's ok because I'm pregnant."
Maybe it's because Chrissy Tiegen did it. Maybe it's because Meghan Markle did. Or maybe it's because when they did, it actually did make me feel less alone at a time when that's literally all I feel. Alone. Despite telling friends and family about it. Despite being able to text my doctor whenever. Despite talking about it in therapy for hours. Despite the fact that this happens to 1 in 4 women (I believe that is what Meghan said). Despite Joe's UNENDING support and UNWAVERING shoulder to cry on. I feel alone.
