My Endo Journey - Pt 3

This time the pain would not be going away like the first time. But the surgery took me from a base line pain level of 6/7 to a 2/3. 

You can function at a 2/3 and so we went back to the continuous birth control. Back to writing another letter justifying why I needed such a "drastic" prescription. I got really good at sharing my personal health journey with strangers.

The biggest problem with manipulating your period, though is that you are forcing your body and hormones not to shift as they naturally would. So if I missed a pill by a half hour my pain level would jump to a 5 by nightfall. And if I forgot all together I'd go down for a few days my body unable to adjust so rapidly to the shift in hormones. Getting a script of Vicodin during these years was as simple as calling my dr in Michigan. I had his office on speed dial.

After my surgery I could focus on regaining my strength, and playing catch-up to the other dancers. I had fallen behind in skill and was struggling to keep up. I did an eight week summer intensive at Alvin Ailey that summer; trying to get back on track. It was an incredible experience dancing in those studios amongst such history, immense talent, and incredible teachers. 

But in what would become a constant circle, the endo would flare up and I would hardly be able to move let alone rollerblade clear across Manhattan from the upper east side all the way to the Ailey School. So I didn't catch up as much as I needed to and yet my dance director still advanced me. Maybe out of pity or maybe because I wanted it so desperately - naive of what the constant comparison and feelings of inadequacy would do to my confidence. 

My body also had changed dramatically. We were messing with my hormones so much from the chemo they injected me with for 6 months and this constant battle my body was fighting against the birth control; it was all bound to have some effect. I went back to healthy albeit still incredibly thin weight but my chest had grown from a small B cup to a D cup. It threw my center of balance off and it was nearly impossible to relearn. I couldn't turn well, my jumps were heavier. My body felt foreign to me. 

I didn't know what endo belly was at the time, but now it makes sense. One teacher would literally pat my belly and say 'oh i see that bagel you had this morning.' It was embarrassing and also infuriating because I would be so swollen that food was the last thing I could stomach. I drank slim fast to lose the belly weight and it was the only thing I could get down some days. 

My grades in my dance classes suffered. We were graded on weight and despite being rail thin with a bloated abdomen I never got above a B-. Because of it my gpa dropped. The dance director told be in my "final" senior interview that 'my tits and ass might get my a job, but my dancing never will.' I was devastated by that. I can still feel my heart falling into my stomach, holding back tears just to get thru the rest of my interview.

I was the first person on either side of my family to graduate from college - I wanted it to be with honors, but I was 0.1 away from magna cum laude. I wonder if I had been properly placed in ballet class, would I have been graded so harshly? Instead of feeling the disappointment in the harsh and ignorant grading and emotional abuse, maybe I would've felt like I had achieved something huge against all odds? Would that perspective have altered my mindset? 

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#endometriosis #womensrightsarehumanrights #proroe 

 

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