My Endo Journey - Pt 2

In those 5 years; I danced in France with my ballet company and got hooked on the dream of performing in theaters around the world, I graduated high school in the top 10% of my class, National Honors Society, I danced 6-7 days a week and assisted classes to sunset the cost, I was in The MI State Police Explorers.

It was as if all the pain of that year fueled this fire inside me to chase after everything I could while I still could. 

I was relatively pain free. The dr had taught me how to manipulate my period with the birth control so that I decided when I could take a week off of life. Often planning it over school breaks, or when a performance was over. They gave me Vicodin to get thru the week, just in case. But I didn't really need it. That pain in my back was gone and although the cramps were intense it was not the same kind of pain. So I took the pills - 1/2 at a time for a week straight and zombied my way thru it. It helped. We were "managing" this disease well I thought. 

I was awarded the presidential scholarship to a private college on the upper east side of Manhattan, and accepted into one of the most prestigious dance departments in the country. I left for NYC a week after my 18th birthday ready to take Manhattan by storm. We danced from 8:30a-5p at night between classes and rehearsals. Academics typically were 7p-10p and then homework. Weekends were filled with hours of rehearsals for 2-3 different shows we were performing or choreographing each semester. It was relentless and I loved every second of it.

My junior year I woke up on the bottom bunk of our tiny apartment with tears immediately streaming down my face. I hadn't felt that pain in 5 years, yet I knew instantly what it was. The endo was back. 

My parents were at a sewing convention in Chicago and cell phones weren't common yet. I had them paged at the McCormick Center and by the time they got to the phone i was in hysterics. I remember just sobbing it's back over and over again. 

I think after my first surgery, and we were "managing" the disease; part of me thought I was past the hard stuff. 

Google barely existed and it certainly wasn't a tool we could use yet. I went to an ER who called me a drug seeker. My Dr in Michigan was gone and I was in NYC so we had to find a specialist there. 

She had a cutting edge "miracle" treatment that was sure to cure me 🙄. This would be first time I was given depot lupron - a chemotherapy developed for prostate cancer they found also found induced menopause. 6 months - 6 injections. Miraculously cured. We were so hopeful.

The director of the dance department told me no one will understand, you need to keep this to yourself. I lost 25lbs that I didn't really have to lose. There were days I couldn't get out of bed. There were days my emotions were so volitile she sent me home. There were days I made it to the ballet bar and would have a hot flash. She'd whisper in my ear - probably meant to ease my anxiety but it did the opposite - some remark about it. I'd then have to endure an hour and half of rigorous ballet training before I could let the anxiety and anger that was simmering out to boil.

I was isolated from my peers. There were days I could do everything and then the next I couldn't pull myself out of bed. There were rumors of drug use. I looked emaciated. 

I traded pain for depression, hot flashes, isolation, mood swings, and the pains of shocking my body into menopause at 20 years old. 

She'd send me silly hey we're going thru menopause together cards to cheer me up. I still have them.

Without even a second glance I was allowed to take these chemotherapy injections for prostate cancer on an international flight with me so that I could study abroad for the summer as planned. No problems at airport security or customs. 

Less than 30 days after my last chemo/menopause shot - the pain was back ten fold. 

Now because it was birth control and still not recognized for its medicinal purposes; I had to write another letter begging for continuous birth control to get me thru to winter break. My father did too. So did my doctor. 

I found out a few months later the "miracle" chemo/menopause shot was causing cardiac arrest and heart failure in women taking this for unintended purposes - aka NOT for prostate cancer. 

3 letters to get birth control approved for a surgically diagnosed disease. 

It finally was approved, and I spent the next four months dancing, rehearsing, and taking collegiate classes 8:30-10p 6-7 days a week and suppressing my period.

I went full force until the pain took me down. I went missing for days, my body finally saying enough. Rumors continued. Dance director continued to tell me no one will understand, keep it to yourself. I made it to January and had my 2nd laporscopic surgery over break at home in Michigan. My mom found another incredible doctor somehow.

I was 21. 

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#endometriosis #womensrights #womensrightsarehumanrights #roevswade #standwithher #proroe 

My Endo Journey - Pt 1

Around 14 I started having lower back pain. It started like a thumb pressing on my spine randomly but by the time I entered high school it was constant and felt like a rod being pressed into my back. Within a few months it felt like a knife permanently lodged in my spine.

I'll never forget my Spanish teacher, Senior Robinson during this time. His class was at the end of the day and by that time I was in so much pain from sitting all day that I could barely hold back the tears. He saw my pain and simply told me to stand if I needed to. He never asked what was wrong. He told me I owe no one an explanation. And so I would walk to the back of the room and stand for his class. I'm sure the other kids wondered but he empowered me that day to not be concerned with the bullshit, to do what was right for me.

My parents took me to every type of doctor imaginable. At one point I counted 9 different dr appts in a week that year. An MRI revealed a mass on my ovary. Surgery was scheduled for a week after school ended. I went under without knowing if I would have a tiny incision or a 10" scar across my abdomen.

I woke up and the relief I felt was immediate. The knife was gone. It wasn't cancer. But I was handed a life sentence of chronic pain and fertility struggles. At 15 they found endometriosis - a disease no one in my family had ever heard of. 

My mom was on it. She researched and found specialists with the most progressive treatments. One was continuous birth control. My father had to write a letter to the insurance company requesting they cover such "extreme measures". The doctor couldn't do it. I could not do it. It was approved. But every year we had to go thru the same process not knowing if the medicine I needed to live a normal teenage life would be approved or not. It was out of our hands.

That treatment - that medicine that was intended for something else, saved my life. It kept the disease at bay for 5 years. It gave me 5 years of freedom from pain to be a normal teenager. And I truly believe full heartedly that without it; my children would not exist today. 

Overturning wade vs roe not only affects those needing/wanting an abortion. It protects women from government control over their healthcare.

My parents would've paid for the medicine regardless if insurance did or not. They taught me what advocating for womens healthcare looked like, but even they couldn't have fought the government on it. 

In a month this decision won't be about whether treatment is covered by insurance (which is another whole issue). The government will have control over whether I would've been able to even receive the medicine that (despite its intentions) was the only thing we had to fight this disease. At 15. Scared. Wanting to be able to dance. Wanting children one day. Wanting to live painfree. 

Overturning this decision gives the government control over ALL WOMENS healthcare regardless if it's reproductive issues, or cancer, or whatever. It means that women will have no privacy or control over the treatments available. 

With daughters on the cusp of puberty, I am terrified that even with my knowledge and willingness to advocate for them; I will not be able to get them the treatment they need. Medicine to keep them painfree, or allow them the possibility of children one day. 

Had the government been in control when I was 15 - it wouldn't have mattered how much my parents were willing to spend, it would have been denied. They still do not recognize birth control as medicinal.

I owe my parents everything for their relentless fight for my rights. I owe my grandmother for fighting for that right they exercised, and I owe the kindness of virtual strangers who taught me in one moment that privacy in healthcare is essential. 

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#StandWithHer #womensrightsarehumanrights #RoeVsWade #womensrights #proroe 

Between Grief and Gratitude

Hey mama, guess what? 

Sydney was in her first theater production this week! It's her first time on stage and I was blown away by how confident she was. She knew her marks and the choreography; leading the way for the rest of the girls. Pride overwhelming at her fearlessness. 

I've kinda stayed away if I'm honest. I didn't do it on purpose but it is odd behavior of me not to jump in and volunteer. The week leading up to it felt so strange to just drop her off and go. I told myself it was because the other kids have things too and I need to stop stretching myself so thin. But what I realized at the opening night last night that it was much more than that.

From the moment I saw her on stage it was as if I was submerged in a raging sea, being tossed like a rag doll between grief and gratitude; joy and anger. It was all I could do to stop from weeping. 

It hit me so hard. I can usually feel it coming on. An anniversary or birthday; the holidays... but this one I ignored the  buildup refusing to acknowledge it until it became too much to bear.

You would've loved this moment so much. I'm sure you would be making her costume and helping backstage with me. It would've been such a moment for the three of us. So many moments you should be apart of that when I'm not prepared they end up sucker punching me right in the gut.

If you were here you would tell me not to live in that space for too long. That I need to forge a new path, new norms and our own memories as she takes on this new passion for the stage. And I promise I will. 

Gratitude for the skills you gave me to do this thing called motherhood. The space to find my own way. And the joy of so many memories in the theater together. I want that for her too.

Walking out of the theater last night I began wading upstream amongst the cast and proud parents and family to find her, happiness taking over. Of course she was one of the last ones out... reminding me of me.  When she saw her teacher and good friend she bear hugged my arm and tucked herself behind me. She hasn't done that since they had to rip her from my arms in the carpool line for preschool. I laughed so hard at the joy I felt in that moment; it made me realize that her and I got this. 

We've got some exciting days ahead of us that I am going to dive into with a full heart. Joy calming the raging sea once again; with a gentle rock - finding the space between grief and gratitude to settle in. Letting you ride the waves with us.