My Endo Journey Pt 4

With my second surgery we learned the lesions regrew on the back of my bladder, my ovaries were covered in scar tissue and more lesions were speckled around. The disease is progressive and will just keep getting worse. No wonder it felt like a knife was in my back, the spots were literally compressing my nerves at the base of my spine. 

After graduation, I finished my internship at a casting agency and was hired as the retail manager at Broadway Dance Center. They were really great at being flexible for auditions and taking class from their incredible teachers. You could be standing next to Bebe Neuwirth at the ballet barre, and it would be just a regular Tuesday morning. I took Frank Hatchet's jazz class nearly every day - being one of his chosen assistants to demonstrate combos - it was a big deal in our world. He was so kind and uplifting. He was tough too but in the best way. I assisted their Radio City Rockette experience at Radio City Music Hall - teaching young dancers the routines and getting to step out on that incredible stage regularly. I must've auditioned for the Rockettes half a dozen times; going thru 10 rounds and getting cut one round before casting. We'd be there for hours watching thousands walk right out the door each round. Every time I would get so close to landing it. I helped develop their student visa program that brought dancers from all over the world to study from the best in NYC. It wasn't enough to pay the high rent in NYC though, so I would bartend a few nights a week as well. 

After a year it became apparent that I couldn't do it all. Full time job, auditioning full time, bartending at night, and the flare ups I had to push thru and keep moving. I'd be lying on the ground in my office writhing in pain one minute and up working the store the next. My work and my dancing were suffering so much.

I danced with the NYC Cheerleaders, Off Broadway Productions, I toured with a Latin Jazz Company throughout the Tri State area as well as overseas in China, and helped fellow alumni produce and dance in their choreographic work. We often had no money for dance space so we would rehearse in Central Park or someone's apartment. Those were some of my favorite days ever.

The years start to get a bit blurry...

My life became a revolving door of auditioning, gigs, quit job, perform, find a new one.  I would bartend until 4a and be at a cattle call audition at 8a. Every time I got a dance gig it would conflict with my bartending job, so I'd have to quit and start over. I can remember 13 different dive bars, trendy restaurants, or clubs I worked at during those 5 years. 

And there was always a local bar around the corner where industry people would go after their shift to wind down. The problem with living a life of chronic pain and flare ups is that when you feel good you don't wanna stop, because when you do you know you gotta start all over. Body is stiff and in pain, so just getting moving in the morning was a game of willpower, many times I'd stay out until it was time for the audition. Just to try and ride that high of feeling good because I knew if I rested even for an hour, I either wouldn't make it, or it would take so much strength to start moving again I'd be useless at the audition. But I was going up against the best at my worst; vying for a couple spots - either way I was up against a brick wall trying to get over it - begging to just have an even playing field. 

I felt too damaged for love. I honestly believed my body would never produce children, and I had come to terms with that a long time ago. I thought I would never find a partner to stand by my side and go through so much; and then have to accept the possibility of being childless. I often fantasized of adopting a child in my (late) 30's, dancing on Broadway, no man needed. I was reckless at times and put a wall up sky high. I didn't let anyone in, and when I started caring for someone a switch would go off and I would destroy whatever relationship I had built.

I was angry and sad; I grieved the life I had when I was pain free and I grieved the life I wanted but felt impossible to be mine.  

I tried every type of birth control - the no estrogen one, the low progesterone one, the one in the pretty purple box. They would all stop working after a while or cause crazy side effects. Eventually, finally something new came on the market - the nuvaring inserted like a tampon it gave me the relief from the time sensitivity of a pill, but they needed to be refrigerated until used and that made traveling difficult. Not to mention an awkward conversation for new relationships.

I'd plan my doctor appts around holidays and after gigs so I could go home and manage the disease with my team there. I'd get a new birth control option and a script for pain medication. Every doctor and ER I went to in NY would just placate me or worse gaslight my pain and call me a drug seeker. Dr Sauer was my life force and kept me functioning. I don't think I would have survived that time without his care, empathy, and support.

You can see what kind of man you are dealing with when you see how they handle women's reproductive issues.  If they don't grab your hand and walk in that doctor's door ready to be educated, to be your advocate, to be your rock - he's not the one. Life's gonna get messy regardless and you want someone who doesn't shy away from talking about periods and your uterus. Guys had ALOT to live up to because my dad did all those things without batting an eyelash. I could talk to him about anything, and he took it all in just wanting to help me thru it. I was enamored with romance and adventure, but I would never allow myself to fall in love. I was too damaged, too broken for lasting love. We had a term for the guys who got too close - that they had been bitten by the love bug and it was time to go. If I cared about a guy friend who wanted more, I would panic, and friend zone them. Knowing I would ruin our friendship if we tried to date.

9/11 changed me too. I struggled with unrealized PTSD and survivors' guilt for years before I got the help I needed to process it. 

I started auditioning less, bartending more; and I found alcohol took the pain away better than anything. I was coasting in this cycle determined to "not let them win" but I was miserable and losing myself. I enrolled in a Pilates certification class trying to get away from the bar. It was 100's of hours I had to do without pay so I was back to working full time and bartending at night and trying to audition.

In 2003 I went to South Africa with friends to see their beautiful country. We road-tripped around for 6 weeks. It was the first time I had left NYC for an extended period of time in years. It was exactly what my soul needed. 

 

The sky felt massive and I felt so tiny in the universe. You would think it would swallow you whole, but it was the opposite. I felt free from the weight of expectation, pain, grief; and space opened for my heart to be heard. I'd often wake up early and just sit outside staring at the stunning world around me. Looking over the vast beauty one morning, with all the noise and distraction of the city finally melting away I suddenly came to the realization that I had kicked out that whisper from my heart. I was no longer following my bliss and I knew that if I didn't leave NY it would be 10-15 years down the road and everything I had sacrificed and fought for would've been for nothing. Dance felt trivial to me and this career I was holding on to for dear life seemed like a silly whimsy of a naive girl. I had lost my connection to the meaning and the power of art to heal, to challenge mindsets, to process emotions. 

My friend Lu, who had come into my life at just the right moment. She saw life with such raw clarity, and she challenged me to be better. She is still one of my favorite people to this day and someone I can always turn to when my heart is struggling. Her perspective always has a way of guiding me thru whatever is troubling me. I told her my plan and there was this wave of peace that overcame me. I knew it was right and upon my return started making my plans to leave. Not 8months later I was back home in Michigan in my old bed pivoting my life to Chicago. Michigan was never an option for me. My small town always felt suffocating since I was a little girl and Chicago was always my final destination in my head. Big city but close enough to go home whenever I wanted or needed to. 

A year after I left for South Africa, I was moving into my new apartment in Bucktown; I didn't realize it then, but I'd never step into a dance studio for a class again. I felt free of it and even though I told myself it's just a little break, dance didn't serve me anymore. 

The pain was getting worse. I only had 2 close friends in Chicago at the time. I had met Christian out in LA thru mutual friends, when I was auditioning out there. He had moved home to Chicago right before me. We clicked instantly and I was lucky to have him there. We'd go out to dinner at great restaurants, be each other's 'standards' for any event we needed a date for, but we weren't dating. We were best friends. I told him everything I had been thru with this disease, my fears of being childless and never finding love, feeling too damaged and broken to be loved or to love anyone. He listened to it all and he was a safe place for me.

One night we were at the Ritz Carlton having drinks at the bar and he looked at me and said he didn't want to be friends anymore. A little confused, he went on to say that he loved me and wanted more, and if I didn't then our friendship would be too painful to endure. I didn't say anything, frozen a deer in headlights and I excused myself to the ladies room without giving him an answer. I looked at myself hard in the mirror, unable to deny my feelings for him any longer but so scared I'd freak out if we started dating. But I was tired of running from love. I knew if I said yes to him, that I would probably marry him one day.

I walked out and fell into his arms, kissing him and saying yes. It was one of the best and scariest moments of my life. We had planned a friend's trip to Pittsburgh that weekend to see Dave Mathews and it suddenly turned into our first date. Travelling was something both of us loved and it was the start of a beautiful journey. It was so easy and being together didn't change one thing about our friendship. A month later he went to Michigan with me for my 3rd laparoscopy surgery. I was out of it after surgery and don't remember a thing, but I was told he walked right in and took a seat looking at pictures of my ovaries and insides with my parents. 

He didn't bat an eyelash. 

I knew then just how special he was and that maybe I ran from love because my heart was searching for him.

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? 

------

#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. 

------

#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. 

--------

#StandWithHer #womensrightsarehumanrights #RoeVsWade #womensrights #proroe