This is going to be long. And it probably isn’t going to go how you think it might. But today is Valentine’s Day and I want to take a moment to give thanks for the power of community, of kind actions, and of love.

I’ve been having a *really* difficult few months. The kind of difficult that no amount of bold type, underlining, or capital letters can capture or accurately underscore. In late November, I was diagnosed with suspected endometriosis, adenomyosis, and PCOS. All of this on top of the neurological issues I’ve been dealing with. In fact, as it turns out, they could each be in a vicious cycle of exacerbating one another (how’s that for perverse?). I was prescribed pelvic floor physical therapy, more yoga therapy, and acupuncture; referred to a functional medical doctor and a gastroenterologist; and told to prepare my body for specialized surgery to remove the endometriosis that’s likely growing in my pelvis and diaphragm, adding to the constant pain I’m in and strangling my organs.

To prepare myself, I have to eat as healthy as possible, work on figuring out ways to reduce the inflammation in my body, and try to be as active as possible without being so active that it causes my body to flare up (oh yea, in nearly 4 years, we haven’t been able to figure out where that line is). I have at least six medical appointments a week. I’m supposed to limit stress, but I still need to find a way to afford the surgery (did I mention that the surgery alone costs 10K?), out-of-network medical visits, and medical equipment I need (none of which are covered by insurance). AND even if I can do all that, I will likely have difficulty getting pregnant and still have neurological symptoms. Meaning that even if we find a way to afford surgery by one of the few excision specialists actually trained to remove the endometriosis, we have to speed up  our timeline of when we were hoping to try to have kids, find money for the IVF that I’ll likely need, and EVEN THEN, I might be looking at a number of miscarriages–if it even takes. And there’s no telling whether my neurological symptoms will get better or not, or how they’ll react to the process.

If your head is spinning, don’t worry. I’ve had two months to digest the news and mine’s still spinning too. My pelvic physiatrist was kind enough to explain to me what endometriosis is, to give me a really helpful book on battling it (I highly recommend Beating Endo), and to explain why so many of the providers who specialize in treating my conditions are out-of-network. (In short, the insurance system doesn’t allow doctors the time they need with patients to accurately diagnose and treat complex diseases like endometriosis, and insurance often leaves them eating costs of procedures/visits.)

So I’ve spent the last two months trying to understand what this news means for me, and for my life with V. Discovering that I have a disease that ravages my body, grows inside and on organs, effectively gluing them together, and that only 4% of doctors worldwide know how to spot the disease in early stages. Even fewer than that specialize in excising it–basically cutting it out at its root so that there aren’t lingering pieces that grow and continue to cause pain or undue stress in the body. Doctors do not know why or how exactly it happens.

Here’s what we do know: 1 in 10 women in the U.S. suffers from endometriosis. The basic part that most people Google says that endometriosis occurs when tissues similar to the ones in a person’s uterus grow outside of the uterus. What they don’t realize is that endometriosis can cause an autoimmune-like response where the body tries to fight the cells that shouldn’t be there. We know that, like cancer, it can take many forms and shapes. It’s been found in the lungs, and in rare cases in the brain. It frequently grows on and in the bowels, the rectum, and the uterus. Even small amounts of it can cause immense pain and debilitating symptoms.

We also know that a typical gynecology rotation in medical school spends hardly any time teaching about endometriosis. In fact, it’s considered a subspecialty of the subspecialty of gynecology. So, the doctors who recognize it, and the doctors qualified to perform excision surgery in such a nerve- and muscle-dense area as the pelvis and the diaphragm are few and very far between. We know that some women fly cross-country for appointments with these specialists–often accruing tens of thousands of debt or more. We know that seeing a gynecologist who claims to be able to treat endometriosis but is not in fact a true specialist  can cause women to need as many as 17 or more surgeries during their lifetime. We know these surgeries can each be debilitating and can cause extra scar tissue that can disguise any remaining endometriosis. We know that surgeries can make endometriosis cells spread. We also know that most of the progress in this field has been the result of patient advocacy. And, we know that, on average, it takes between 6-12 years for a woman to be diagnosed.

In this sense, I suppose I’m lucky. Although I’ve had painful periods since my first period, birth control has helped stave off many of the symptoms of the endometriosis and adenomyosis growing within me. I’ve also had the good fortune of meeting really smart, really dedicated and curious doctors willing to get to the root of the things that keep me from having a normal life. And while I’m *immensely* grateful for this, I also lament that this is what “lucky” feels like.

Thanks to Nitika Chopra and Healthline, who sponsored the first ever conference for people with chronic illnesses, I was able to connect with Drs. Tayah Ahmed and Sallie Sarrel , who helped me understand more about the pain I was experiencing, why my nerve blockers weren’t helping it, and what steps I needed to pursue to progress. Next month, I’ll be attending The Endometriosis Summit (hosted by Drs. Vidali and Sarrel), to connect with patients, patient advocates, and practitioners as we exchange knowledge and experiences related to Endometriosis.

I’ve been on a strict Autoimmune Protocol diet to try to reduce my inflammation and identify inflammatory foods. For nearly 8 weeks, we’ve eliminated: eggs, soy, wheat, grains, gluten, dairy, rice, beans, legumes, excess sugar, added thickeners, vegetable oils, chocolate, all nuts and seeds, potatoes (except for sweet potatoes), tomatoes, peppers and other nightshades,
most of our regular seasonings/spices, and alcohol. ‘Hard’ is an understatement. V has been an absolute saint through it all. He’s been cooking and prepping like a mad man to make sure I have compliant foods (healthy proteins and lots of veggies). He’s found alternatives for some of our favorite seasonings and even scoured stores for obscure products like tiger nut milk and coconut yogurt without thickeners or added sugar (spoiler alert, there is only one brand and it’s pretty gross). And, to be honest, once you get over the initial shock, focusing on healthy proteins and vegetables is pretty delicious–it’s just also expensive and takes adjustment, and means no cocktails, no comfort chocolate cake, and very little eating out for these foodies.

And it’s been really hard dealing with all of the emotions of receiving this news without having my favorite comfort foods to lean on. Without being able to go out (or stay in) for a cocktail. And without really feeling or seeing any results (apparently it takes some people 3-9 months to see a difference in their inflammation levels). So, I’ve been pretty depressed and dejected.

My days are filled with a swarm of swirling questions: how are we going to pay for my medical treatment and devices? How am I going to work out and lose weight when I can barely get myself to the kitchen or bathroom most days? Is it irresponsible to try to have a baby when it’s so much work to even take care of myself? What if we wait to see if I get better and then miss our chance entirely (the best chance for me to get pregnant is apparently just after healing from surgery)? How will I handle miscarriages? Will the surgery really get rid of my pain? Will I be able to get my life (or even some of it) back? How can I keep on with all these unknowns, all these costs, all these changes and procedures and a nonstop cycle of doctors appointments for another 4 or more months? How do I endure the physical and emotional pain or the deep exhaustion that gets stirred up through every PT appointment?

How long can a body that’s already broken endure pain that feels like your insides are going to break? How does a spirit endure constant pain without being entirely bitter and unpleasant? When will I be able to have sex with my husband without bleeding and curling over with stabbing pain for days afterwards? How do I keep our young marriage from becoming a medical exercise or routine? Why haven’t they found a cure when 765 million women suffer from this terrible disease? How long can my body withstand this amount of pain and the  23+ medications I take daily just to be able to get out of bed?–And sometimes, even with the medicines, I can’t even do that on my own. How? Why? For how long?

‘Nichole,’ you might be thinking, ‘what happened to the love letter you promised?’ I haven’t forgotten. Hang tight.

As you may know from some of my previous posts, I’m basically obsessed with Rothy’s, a sustainable shoe company that makes womxn’s shoes from recycled water bottles. They’re crazy comfortable and super cute, and have been a lifesaver for me since I got sick. They help me feel put together and chic without needing to wear heels that kill my spine or body. But no, this is not a love letter to Rothy’s. At least not entirely.

As a #spoonie and severely disabled person, most of my human contact is made over the internet (see Mom, I told you that talking to strangers isn’t all bad!). And Rothy’s has numerous online groups filled with adoring or curious fans. I’ve had the privilege (and sometimes burden) of running some of these groups. And here’s where you get the love letter.

Through these fan groups, I have met some of the most caring, beautiful, supportive, silly (and yes, sometimes entitled) people. I have seen people bond over a shared love of this brand and form friendships across the country and the world. I’ve seen women cheer others on through interviews and first dates, lift others up after losing their jobs or leaving their marriages, and unabashedly share their love and passion with others in these online groups. I have watched and help nurture these groups as they grow past 10K members. I’ve hosted meetups for people across the country to get to know one another in person. I’ve applied what I love (community-building) to these spaces and I’ve witness the groups evolve into communities and sisterhoods.

Some of my closest friends are people I’ve met through Rothy’s fan groups. I’ve found encouragement to build this space through some of those friendships, and I’ve been able to talk about my illnesses and fears around infertility. I’ve gotten to watch the little ones of these friends as they grow up, and gotten to cheer these friends on as they struggle with parenthood, working full-time, business ownership, racism and inequity at work, the current political landscape, and more.

But today, that love grew even deeper. Last week, in the midst of a pocket of despair, I wished for a pair of limited edition Rothy’s that I had returned in October in the name of being practical and money-conscious. I sent out a sort of bat-signal seeing if anyone had the shoes available for sale in my size at a reasonable price. I shared with one of the people that I’ve been having a really hard time lately and that I was hoping for a shoe that would help me feel bold and badass while also adding brightness to my day.

Today, I received these packages in the mail from three different women (only one of whom that I actually know and speak to regularly). Clearly the universe and the warm-hearted Rothy’s-verse came together to help me have the bad bish shoes (and flawless nails done too!).

The incredibly touching notes and lovely packages I received from women I’ve connected with via the Rothy’s online communities. I didn’t even know that Emily read my blog! Her note literally made me cry and gave me motivation to keep going. So you can thank her for this post (I take responsibility for how long it is though lol).

To top it all off, V got me a stunning bouquet of flowers from my favorite florist, Farmgirl Flowers, and we’re actually making time tonight and this weekend to spend time together doing anything but worrying about medical stuff and pain. For the first time in months, despite being in pain, I’m actually kinda feeling “good as hell.” ::cue Lizzo::

The gorgeous flowers from Farmgirl Flowers and a few goodies too. I’m obsessed with ranunculus and adore multi-colored bouquets. It’s the little things, like remembering that I don’t like monochromatic flowers (like the typical pink or red bouquet of roses) that mean so much.

So, there you have it. Now excuse me while I go explore the deliciousness that I smell emanating from our kitchen and take a nap before our movie night. Whoever you are reading this, I hope you find things that make you smile today. And I hope you spend some time loving yourself too.

(Oh, if you’ve never tried Rothy’s feel free to use my referral code for $20 off your first pair! Their sizing is a little off, but I’m happy to talk you through it. I love the brand so much that I used to be an ambassador for them and have gotten their sizing down to a near science!)