My Endo Journey Cont...

Levi

Mr. Boy climbed in bed this morning on his 8th birthday for some early morning cuddles. He is such an amazing little boy. The biggest heart - he is quite literally a giant ball of love. I tease him saying you are getting too big, and I need him to stop growing. With eyes closed and snuggled in, he whispers "If I could, I would Mama." And my heart just explodes. I'm overwhelmed with love and gratitude for this little miracle of mine.

He shouldn't exist. I was told I would never have children naturally. We fought the odds with Sydney, but we were actively trying to get pregnant. Levi was a gift. A gift we weren't quite ready for, but none the less he came into this world to be a shining light. Here's his story and what led to the greatest gift I have ever been given.

I was 35 years old. My world consisted of taking care of 4-year-old twins, and baby Sydney.

My mom was dying from brain cancer and the first thing she lost was her ability to communicate. She was stuck in her head like a prisoner and so I began writing her letters. At the time, I was so angry. I felt cheated that we couldn't have all the conversations my heart was begging for, but now I've found a new meaning and focus. I have the words I gave my mother that I know meant everything to her, I never would have remembered otherwise. I also know we are both too emotional and could never have spoken those words to each other, and we didn't really need to. I had her heart thru and thru and that was all I needed. 

My husband was working full time and going to culinary school at night. We were living in Cleveland, with no family near and had just decided to stay and make it our home. We bought our first home together in Rocky River, and a few months later he had found a space that would become home to our first restaurant. 

The pain started again. The same thumb press to the lower spine, at first for just a few days. The next month for about a week. The next month 13 days. It felt like a wooden rod pressed firmly on my spine. But the symptoms that began before Sydney were intensifying. My ovaries felt as if someone was squeezing them right to the edge of popping, my hips felt as though someone was ripping them from their sockets, and the whole length of my back was stiff and tight and sore. My hips were the worst, it felt like I was nine months pregnant. I was on my way to this becoming my constant daily life and I was petrified. We had moved from the east to the westside of Cleveland and if you know the city it felt like going from New York to LA; travelling back and forth was not something you did often. So, I was in search of a new endo doctor. By now the internet was a place I could go to search for specialists but since the doctor themselves list their specialties it wasn't as helpful as I needed it to be. The doctor I found ended up being one of the worst of the worst. The ones that have no business in gynecology let alone a specialist for endometriosis. 

It was the first time I was brought into a doctor's office instead of an exam room. He sat in this dark mahogany regal office with all the medical books behind him. He was behind a giant desk with his leg crossed over and his fingertips resting together at his chest. He was an older gentleman with dark hair and good looks, but you could feel his judgement like thick molasses hanging in the air. I began to share my story from 20+ years of living with this disease. He looked at me with skepticism, like he was trying to find the holes in my story. I remember snippets of the conversation like scribbles on the wall in black sharpie... 

"You don't 'appear' to really be that affected by endometriosis."

"I'm not sure you really have endometriosis; I will need to see your surgical records."

"You don't have real pain from endometriosis, if you do have it then maybe discomfort is a better word for you." 

"Women with real pain need surgery every 2 years max."

He sat and watched the tears fall as I was shell shocked by the ignorance and judgement of a doctor who is supposed to be an advocate for women. If he performed any kind of exam, I've blocked it out. The next thing I remember is him telling me to call and come in 3 days after the start of my next period and the most he'd give me was an iud. He made it perfectly clear that my current pain was inconsequential, treating me akin to a drug seeker. I didn't have time to find another doctor, so I left with my head down and my heart battered and my body in worsening pain every day. And I was powerless to stop it. I prayed the iud would help lessen the symptoms or at least stop them from getting any worse.

A few weeks later we were hanging wallpaper in "the nook" of the cafe and it dawned on me that I was late. Not thinking much of it, I made a joke and my husband looked at me with such shock that I laughed out loud. We went to get a pregnancy at the CVS in the plaza and walked back to the cafe to take it.

I took all 3 tests. Each one was positive. We were scared, weeks away from opening the doors to our first restaurant. My mom was dying, in our first home we just bought together. I had 3 young children that needed me. I was in pain and barely making it thru the day. How were we going to do this. 

There was a moment where I thought it was too much for me to handle. I wasn't supposed to be able to get pregnant and certainly not at 35 and never naturally. A second later, I felt my belly and was overwhelmed with the realization that against all odds this little miracle was growing inside me, and I knew that I already had my answer. I made the choice that day to love and honor this little nugget who albeit untimely, was making an incredible arrival on the scene. There is power in having a choice and making the decision that is right for you. And my sweet Levi lives his life knowing he was chosen and loved fiercely. I was never forced against my will. What a gift for both of us.

And while all the pain that had disappeared in the first 2 pregnancies was here to stay, I chose to see him as the beautiful gift that he is. Who showed up at the exact right moment. Who brought joy and hope into a scary world we were living thru.

We lost my mom in July that year. It is still one of the deepest heartaches of my life. I miss her hugs and her love and just her, every day. Before she passed, I'd catch her staring at my belly, and I'd move so she could rest her hand on him. We both knew that that would have to be enough. Walking down the processional at her funeral almost brought me to my knees. I had to be strong for her. I had to be strong for him. I had to be strong for all of them even though I wanted to break so badly. I didn't because they gave me the strength to keep putting one foot in front of the other. What an incredible gift I was given.

My Endo Journey cont...

Sydney

My body tells me what kind of day it will be before my eyes flutter open; my mind doing a body check to see how painful it will be to rise out of bed, let alone tackle the day. Most days my hips ache, thighs burn as if I just climbed a mountain. My lower back stiff and tight, it feels like a rod is shoved in it. My belly round - looking and feeling like I was 3 months pregnant. My head in a fog; eyes heavy from exhaustion. 

On a good day my base pain level is a 3; I open my eyes and prepare to move this body that feels 80. On a bad day just rising is so painful I stifle a cry just to sit up. Or it could be anywhere in between. 

30 years of my life I did not know what the day would bring. Would I need to speed thru life getting as much done as inhumanely possible? Do I need to show myself grace and allow my body its moment? Do I walk thru mud today? Every. Single. Day. for 30 years. And every single night dreading sleep, heart racing, anxiety flooding my mind and body with the unknowns the morning would bring.

21 Years Later - A Reflection

21 years later and it has almost been as many years as I was old on 9/11. Without fail, a month or a week or a few days before each anniversary, my body begins to deceive me before my mind realizes what is happening. My anxiety flares at night, my heart starts revving, and my mind racing a million miles a second. Tears are always right below the surface, ready to appear at the most random moments, happy ones, sad, hysteria. You would think it was hormonal, except those things no longer pertain to me. And somewhere around 2a, when all these things combine to win the race; the memories start knocking; the nights and days surrounding that heart wrenching day beginning their annual private screening in my head. 

In the past it would trigger depression, angry that my body knew what my mind wanted to suppress, and upon acknowledgement of the moment, my mind stills realizing that my body is still experiencing the trauma and probably always will. It finally releases its hold and sinks into the sadness to drift off to sleep. It's a marathon showing until the day passes, and I am released to ease back into the functioning world again.

About ten years ago, we had moved from downtown Chicago to Cleveland. I had just been getting thru some things with my therapist when I needed to find someone there to continue diving into the things that came to the surface after my first pregnancy with the twins. In the "getting to know visit", 9/11 came up but I breezed by, as I normally do. He was on to me though and stopped me immediately. He was easy to talk to, I felt safe of judgement, and he asked the really hard questions; so, my story flooded out. It was the first time I had spoken out loud the details of that day in a very long time. Once I started, though I couldn't stop. When I came to what I thought was the end of my story; we were both in tears and he looked me right in the eye and slapped me with some truth I refused to give life. 

I didn't want to share my story because yes, the pain of remembering that day could bring me to my knees at a moment's notice. But I also felt unworthy, guilty for not being happier, for living, for not losing someone who had my heart. It's hard to admit where your mind is willing to go in the dark and I was scared that people would think I was crazy or overemotional; unwilling to admit the dark thoughts were sometimes really scary. 

He spoke of unresolved ptsd, survivors' guilt; words that I was offended he would use to describe me. But he gave examples of my story, of the things I was struggling with currently; that were all proof of what he was saying was truth; the idea my story had relevance, that it should be shared, that it could speak to someone who needs to hear it; mattered to me. That the sadness I carried, decisions I had made in my life that I questioned, all pointed in a direction I was unable to see through the fog. So, he pushed me to write it. To give it life so that I could lay it to rest one day. He gave me tools to begin to understand the incomprehensible, and I wrote my story here. I read it every year, and every year I remember new moments. The moments of triumph and unification. Of being gathered at the local bar days later and hearing sirens. We ran outside to see one of the most beautiful sites I still have ever seen to this day. Fire trucks from all over the country were finally allowed into the city and with lights on and sirens blaring came parading down 2nd avenue like a convoy of angels. Joy, relief, human kindness, and selflessness leaping along the way. It was a moment lost to me until I shared it every year and every year a new memory comes or someone who was there too will remind me of, and the triumph of human kindness my mind had kept locked away walked in on a white horse.

It helped. He encouraged me to light a candle each year and I do. It helped. I surrounded myself with my family to cuddle and be melancholy with, it was the most I could muster to not cry too much in front of them. I gave myself grace to sit in the sadness and let me body and mind process it. It all helped enough to get me through it. Understanding the why of something has always helped me endure nearly anything put in front of me. I had reached a new view of my story.

And 2 years ago, this new adventure I allowed myself to venture on had an event over this weekend. It would fall in the middle of the convention, and I was headed to Atlanta to be in a house with 25 strangers I knew from the internet. My friend Jen was the only person I had had any kind of conversation with, and it would be the first time we actually met in person. I was nervous about the candle, but I needed it. Would these women think I'm strange, dramatic, would they judge and turn their backs on me? It was the first time away from my family and I was already watching the 3rd viewing in my head that year. I needed that candle. Jen saw it immediately and made a joke, it was the first time anyone had made me laugh about anything even associated with that day; even a phallic looking candle. It broke the ice, and I gave her a brief answer asking if she thought it would be ok to light for the day, so I did. I thought about explaining myself, but I didn't. I'd sit there trying to pay attention to what was going on the virtual event, but the tears betrayed me silently falling despite my urging them to stop. The candle helped keep my heart and head rooted as best as possible. When the question was finally asked, most of the women hadn't realized what day it was. Some happening before they were even born. But what would've normally angered me, made me sad. I shared a few things that I felt were important and I listened to other perspectives without judgement in my heart. My fears of being rejected was unfounded and even if they would never truly understand the impact of that day; they showed me kindness, acceptance, and even a few hugs. Looking back, I can't believe I did that. But maybe it was my head finally dragging my body thru the mud to the other side. I can say now and seeing it clearly that was a life changing moment for me.

Fast forward to this weekend and I'm attending my first convention in person. Once again, I was going alone, but this time I had friends from that trip, others I met in Vegas, and still more I met on a retreat that I was excited to see. This small community just seemed to happen without me even realizing it. Knowing the day fell over the weekend, I knew it was coming but I was so busy trying to ensure I crossed every tee to make things as easy as possible on Christian and the kids; it was booted to the back theater.

But by the time I got to laying down that first night; my heart inevitably started pumping, my mind racing on all the things I needed to do the next day until my thoughts began to shift and mind and body looped into the reliable pattern of the anniversary. 

This time, though, the movie looked different. The terror came but standing next to it was courage daring me to finally start living life without apology. Anger's scenes were holding hands with calmness; understanding that anger just needed a little patience to be in its moment. Sadness walked in with hope that the future would hold incredible happiness. The resentment in anger's corner was being coached by the memories of love grateful for my parents who got thru to me that morning before we were cut off from the outside world. My nephew who will forever be my rock and never fails to tell me he loves me each year. And Mary, who was a 2nd mother to me, who loved me as her own and would call me every year to say, "Hey you matter to me and I'm thankful you are here." My broken heart for the fallen and their families sitting alone on a bench still unsure why it was spared. Worthlessness being slapped by devotion to this amazing family that exists because I did and purpose tapping on their shoulders saying you could make it matter bigger if you just came this way. Guilt walking thru central park deep in conversations with respect and tenacity.

And Appreciation closing the curtain on the choices I made that put me in my own bed the night before, safe. Not knowing then, that innocence would kiss me goodnight for the last time. 

Feeling all these new feelings- I let them all in; curious where they had been hiding. They said they had been there all along. When the keynote speaker came to the stage, I had already dived into exploring these emotions, and he said some pretty powerful things that I was finally ready to hear. I saw the pattern I was stuck in because I couldn't see it; because I wanted to believe I should suffer too. But is that the way to honor anyone? Can I turn that pain into something meaningful? Am I willing to follow those little moments of joy that have been creeping into my life as of late, that are showing me the path forward? Well, I made a decision today that I am going follow them and see what I see. And I'll let you know what I find along the way. Thank you for being a part of my journey, and for listening without judgement. Never Forget is taking new meaning in my life, and even though I can't quite make out who is standing in the shadows I will keep looking until I see thru a crystal-clear lens.

My Endo Journey Pt 7

Chapter 7

The twins birth was surreal. It felt like it took so long to come to fruition, but slipped down hill in an instant. I felt calm, as if I was in the eye of a storm and the drs, nurses, and even family were whirling around me fervently trying to stop this speeding train from crashing. I knew my life was in danger, but I didn't think about not surviving childbirth or being there for these two beautiful souls we created. Words like preeclampsia, risk of seizures and possibly death, magnesium treatments, 24hour mandatory bedrest; all flash in my mind like a horror movie trailer that could never be real. But they were, and I survived.

Going home from the hospital, I was informed of the immediate risks of a C-section and I took on the challenge to heal properly. I carefully picked up the twins, didn't push myself, and waited the 6 weeks to exercise, yada yada yada. When I was finally cleared to move faster than a snails pace; I naively thought I could dive right in. I knew it would be tough, but nothing could've prepared me for how I felt that first time exercising. I popped in a Jillian Michaels DVD my mom gave me, but I couldn't even do a jumping Jack. Quite literally I could not jump from feet together to feet apart. The climb out was daunting and I felt defeated before I even started.

There are many things they they don't tell you post C-section. The first is that your body will struggle for a long time after such trauma. It will be in a state of shock for a long time, holding onto every ounce of fat thinking it is in survival mode. Ride the wave, give yourself grace, and keep doing the things. It'll feel like you are walking thru mud and going nowhere but you are; so keep going. 

They could've helped me along by simply sewing my abdominal muscles back together again but I didn't know to ask and they didn't offer. So they left me with ripped apart abdominal muscles with a 5 finger gap that would never heal properly; leaving me with absolutely no core muscles. Have you ever tried to stand up from the ground without using your core? It's exhausting and humiliating. I was on the ground a lot with the twins and it challenged my mental, physical, and emotional well-being every time.

No one told me that there was an actual reason I couldn't do a simple jumping Jack. I wasn't just out of shape. I no longer had abdominal muscles. I didn't recognize myself at all, I was lost as to how I would ever climb out of that hole, and I would spend the next 10 years hating this body that gave me my miracles. Everything felt foreign, like I was trapped in a Macy's day balloon, floating down the street. Demanding it change when it was impossible for it to even bend to my commands. 

I was never once told about the risk of adenomyosis (endo's evil step sister) and it would be 10 years before I would learn the word. Hear me on this, every woman who has had a C-section NEEDS to know what this disease is. When they cut thru the uterus; there is a extremely high risk that some of the endometrial lining will transfer on the knife into the muscle it's cutting thru. Those cells then perform exactly as they did as part of lining. Bleeding every time you have your period but having nowhere to go so the uterus gets bigger and bigger and bigger- filled with blood. The symptoms are erratic and it's not on most doctors radar; so you must be your own advocate. If you feel crazy with all these different pains and symptoms, and you had a C-section. Go see a specialist. I've got resources for you to find one near you, just ask.

Adjusting to motherhood was a struggle. I was never formally diagnosed with postpartum depression but looking back there is no way I didn't have some form of it. It wasn't normalized or really talked about yet. Sure the dr asked questions like do you feel connected to your babies? Uh, yea I did. Do you want to harm yourself? No I didn't, my own body had that job down pat. So they send you on your way to deal with the heavy hormonal, emotional, sleep deprivation, and mental stresses on your own. 

But I did have heightened emotional responses. This deep guteral reaction to want to scream and throw plates. A little Ally McBeal baby dancing in my head throwing the plates... a little scary, but mostly comical now. It took every ounce of willpower at times not to act on these new raging urges. Our marriage was challenged. My mom and I were butting heads for the first time in our lives. I felt as if I was treading water and my nose was just above the waters edge threatening to dip under. 

I found a therapist that guided me beyond the changes motherhood brought. I learned a lot about myself and the childhood presumptions that manifested into adult beliefs. I faced why I had a visceral reaction to being a sahm. The guilt I carried for leaving my family at 18 to pursue my dreams, and how it manifested into creating my own obstacles to stop those dreams coming to fruition. I learned how an invisible disease and chronic pain shaped my perceptions, and realized the things I forced myself to do to try and compensate for it. I was shown a path to give myself grace.

Somewhere around 3 months we were given the thumbs up to nurse fully but by then we were in a good pattern and even though we tried for a few days it threw all of us out of sync. A few months later I wasn't producing enough naturally and we switched to formula full time. Scared of what pain my period would bring after I stopped nursing, I immediately went back on birth control continuously. 

Since being diagnosed with endometriosis at 15; the goal was to manage the disease and pain until I was ready to have babies. We made it, but what always sat in the back of my mind was what happens after the babies. Will my pain come back? Will it be worse? Will I be able to care for these little humans? Did I deserve to be a mother when the pain could take me out at a moments notice? Was it selfish of me? These insecurities would settle in to the base of my skull to tarnish my thinking for years to come. 

When I would have breakthrough periods - the pain was different. The dull pain in my lower back was always there, with the fear being it would escalate to the sharp knife wedged in my back, but it never did. I started cramping more, bloating, and my hips ached like they did when I was dancing 10 hours a day. The doctors were not concerned. Just threw some pain pills at me to get thru it and helped keep that steady dose of birth control coming my way. I was never offered an ultrasound which could have pointed us towards adeno; granted someone was aware of the possibility. 

When the twins were 18months we moved from downtown Chicago to the east side of Cleveland for my husbands work. We were only meant to be there a couple years and then move on to open the next distribution hub, but that was not meant to be. We were pretty isolated out there and I dived into the mama of twins role. Geographical therapy only works when you are not trying to run from yourself, but from toxicity that is surrounding you, and we were finally able to breathe again.

My endo pain was status quo and we started dreaming of having another baby. One baby to hold as long as we wanted to, to not keep such a tight reign on schedules, and so we made an appointment at the Cleveland clinic IVF department. Upon their suggestion I came off the birth control to try naturally for a few months. Although a very scary concept; my pain had been less and sometimes after you get pregnant your body learns what to do and people like me can get pregnant naturally. I scoffed at that thought but following doctors orders we did and I kid you not; one month later we were pregnant. Naturally. We couldn't believe the miracle that was given to us and settled in to grow our family of four into five. The twins so excited to be a big brother and sister 💕

My Endo Journey Part 6

 Chapter 6

Our parents were over the moon to hear the good news. My mom cried, I cried - it was real and it was happening. All that fear and anxiety melted away and we could just focus on the months ahead; staying healthy and positive about the future. 

The twins pregnancy was pretty easy in the beginning. When carrying twins you go directly to the Maternal Fetal Medicine department at Northwestern. The hospital was 10 blocks from our condo in the city and I'd walk there for my appointments every week. We got ultrasounds regularly which was kinda cool to see them develop. 

At 20 weeks the ultrasound appointment checks their anatomy, counts their fingers and toes, and if you are lucky you can see the sex. It's a stressful one and you wait with baited breath to ensure they are healthy.  We had already witnessed several women we know and love walk out of this appointment grief stricken on finding out their babies were not going to survive outside the womb; it's terrifying. And as the ultrasound tech checks off each vital organ you breathe a little easier.

It was never a thought to not find out the sex of the twins. I'm a planner and I needed too many things to just go pale yellow and green for everything. They were cooperating that day and we immediately went to the hospital gift shop to find something to give our parents to share the news. They had these little bears in blue and pink - so we picked up 2 sets and called our parents to meet up. Christians parents lived a couple blocks from us and we walked right over to share the news. The next day we drove to Michigan City to meet my parents. My mom was NOT happy we made them wait to find out 🤣. 

We wrapped the little bears and gave 1 to each of them to open. The papa's opened their's first to blue bears. My mom and Nana wanted a girl so badly and we may have delayed and teased them a bit before allowing them to open their bears to find that sweet pink one. There were tears of joy and plans to be made! Boy / girl twins was a dream come true.

By 5 months I looked 9months pregnant and I only got bigger from there. My ankles swelled m, I felt like one of those giant balloons in the Macy's Thanksgiving Day Parade, and we couldn't keep my blood pressure down. I was on partial bedrest and was able to work from home, but still it wouldn't regulate. 

At 30 weeks, the night before my Chicago shower; I went in to my appointment and they sent me to the hospital to be checked in. They tested the protein in my urine for 24hrs and it was right on the border of being dangerous for both of them and me. They gave the twins a shot of steroids to help their little lungs develop. They knew it wouldn't be long and without it their survival wasn't guaranteed. It wasn't guaranteed with it either, but at least it gave them a better shot. I got out just in time to be wheeled across the street where my shower was happening. Everyone was so wonderful; I fought hard to be there with them and then went home to lay in bed and only get up to pee and eat when I was alone.

At 35 1/2 weeks Christian and I went on our last date before officially officially becoming parents. Topolobampo was delicious and we sat at the bar at Rosewood and decided our boys name would be Franklin. Veronica was a no brainer, I'd been dreaming of naming my little girl that since I was little. I'd play dolls or Barbie's and get so mad at my mom that she didn't name me Veronica. It was her middle name and she didn't like it growing up. She told me to name my daughter it when I got older and I swore to her then that that was exactly what I was going to do. Sometimes I wouldn't talk to her for hours because of it. We glued with other options but who was I kidding, she was destined to be my Veronica.

The next morning, I went to my regular Friday appointment on June 19th, and they immediately sent me to Prentice (the best womens hospital ever). The twins were coming that day. I called Christian and told him the news just as he was stepping up to sit in Jeff Gordon's race car that was at a work event in New Lenox. I called my parents - they had their own delivery suitcases already packed and ready to jump in the car for the 3.5 hour drive from Michigan. Nana beat them all there.

By noon everyone was arriving and I was being prepped for a C-section. Veronica being twin A (closest to my cervix) dictated the birth order and she was breach. There wasn't enough room in there to flip her so we were already mentally prepared for the delivery process. But as they were prepping and waiting to wheel me in things went from risky to scary. Preeclampsia was developing fast and although I didn't really think about it in the moment - I was so worried about the twins I didn't think much of myself. We were scared of what came next. Were they big enough to survive? Were their lungs developed enough to breathe air on their own? Were we headed to the NICU for months after this? So many unknowns and yet it didn't cross my mind that I might not survive.

The epidural was awful but necessary and very quickly you can't feel anything from the waist down. Christian wasn't allowed in to hold my hand and tears fell while I sat there rounded over while they found the right spot between the vertebrae to work in the needle. They laid me down and stretched my arms out like Jesus on the cross. They raised the veil and Christian was finally allowed to come in. 

The whole process went fast and it felt like my abdomen was a suitcase they were rummaging thru looking for a missing sock. I couldn't feel my legs even existed. 

Veronica came out screaming and we were so happy. She sounded strong and fierce and she got a perfect grading even then. She was tiny at 4.3lbs but mighty. Frankie came next 2 minutes later (a point Veronica will never let him forget) and we heard his sweet voice too; weighing in with all his 4.9lbs of pure baby love. They were breathing and it was a miracle. He had a little retraction in his lungs that cleared up quickly but it still sent him to the NICU for the night to be watched. Veronica never left our side. Once I was stitched up they took three of us to our corner suite. It felt incomplete with him there too.

I wasn't allowed to stand or even really sit up. The preeclampsia so severe I was put on magnesium therapy to prevent seizures. I listened and stayed in bed. I'd send Christian to visit Franklin as often as he would listen and tell him how much his mama loved him. It was brutal but I was finally starting to realize that it was my life they were most concerned with and I didn't want to leave my people that day, before I ever held my son. 

That night Veronica was in her bassinet but it was just far enough away that I couldn't reach her without getting up. My pre mama self would've just found a way to scooch down and pull her to me, but now I had 3 beautiful reasons to ask for help. I tried the call button but I head commotion in the hallway and knew they must be busy helping someone. Christian was on the couch snoring up a storm, and I still can't believe he was sleeping thru her screaming! I tried yelling too but I was weak and I didn't want to push myself too hard so I grabbed the only thing I could and whipped the tissue box right at his head. It did the job and he jumped up to help. It's still one of the funniest and happiest moments of my life. 

I was up most of the night terrified something awful would happen if I fell asleep. I dozed in and out keeping V close to me. The next day I was finally released of the magnesium and could sit up and stand with assistance. Just as this was happening they wheeled my sweet boy in and I almost fell over weeping. I made it. It was time to meet my son. 

They kept us 5 days to get their weight up to an acceptable number. Veronica fell below 4 lbs and we almost had to leave her there. None of us wanted to leave without our instant family in tact. I was nursing them but it wasn't enough yet so we supplemented with formula every other feeding and it worked. Her weight came up and we went home. Together. 

Our beautiful family of 4, healthy and happy 💕

My Endo Journey Pt 5

Our first date was a Dave Mathew's concert in Pittsburgh and it was the beginning to one of the happiest seasons of my life. We road tripped to California and back, took a train ride to DC for the fun of it, would fall asleep in the grasses of Millennium Park on a sunny Sunday morning, and perfected our couple selfie game before phones had cameras or the word selfie existed. 

But the pain was always there in the background; the continuous birth control keeping it caged. During my 3rd laporscopic surgery most of the lesions were gone from the back of my uterus. My left ovary had regrowth and adhesions had formed between my ovary and Fallopian tube. The ligament that attaches my uterus to the sacrum had lesions lined up in a row like tiny soldiers separated only by more adhesions. Those spots regrew too. 

Words like ablation and excision were not part of the conversation for me through most of my endo journey. What I remember of my laparoscopies were compassionate doctors who HEARD me. Doctors who did their best to help me. 

I look at my surgical notes now and I cringe seeing vaporization, recurrence, induced menopause. Because this was the ONLY treatment available to me then. And I know now that had they been versed in the advantages of excision; they may have eradicated the disease from my body all together before all the damage it caused. My then newly declared boyfriend saw this report and new that pregnancy was still not a given for me. He loved me anyway. A year later he proposed and in July 2007 I married my best friend.  

As the only treatment available I went back on continuous birth control; suppressing my hormones - they thought this helped because whatever they didn't get during the cauterization would surely be "starved" with 6 months of no periods, right? Wrong. That's not how it works. But if ur not bleeding then the lesions aren't growing. So I transitioned to having periods every few months to maybe once or twice a year. And my beloved doctor in Michigan left to head the department at Yale. 

I was back to searching for adequate healthcare, now in a city where I knew virtually no one. And knew no one struggling with the disease. Most doctors are uneducated when it comes to endometriosis. There are specialists in MIGS, but just because someone chooses to become an ob-gyn doctor does not mean they have the education, empathy, or understanding of these diseases to give adequate healthcare. It was like finding a needle in a hay stack. 

Even with my surgical records it took many appointments of doctors telling me that; 'it wasn't that bad'. I heard unless I was ready for fertility treatments I wasn't worth their time, and the worst was a guy who made me sit there with my shirt around my waist while he told me the dangers of pain medications. It was so creepy and weird, and I couldn't believe i did it. But in the moment i was so desperate to find my new doctor that I didn't even question it until i told my husband and he got upset.

I never knew when a flare up would hit or a cyst would rupture like it did once in Vegas, forcing me to travel home early to get to my pain meds. It was useless to go to an ER there because they wouldn't help me. 

It got harder and harder to get Vicodin for the pain. The opiad crisis had hit and all of a sudden it didn't matter that I had managed these medications responsibly since I was 14. It didn't matter that I needed them to manage the pain; you couldn't get them anymore. The options they gave didn't touch the pain and were a joke. 

Had these amazing doctors I had found when I was so young knew they could eradicate the disease from my young body, I know they would've done it. That is a devastation that I can't put into words. 

Simply burning the lesions damages the healthy tissue surrounding it, there's nothing left to send to pathology, and you cannot be certain you went deep enough and got all the cells. Vaporizing is slightly better by steaming the cells until they evaporate so less damage but you still have nothing to study and ensure it's not cancer and you still have no idea if it's completely gone - the majority of women who have ablation surgery will see regrowth and pain within 2-5 years; some a few months later. My pain was filled but never went away again completely. There was too much scar tissue and adhesions.

Excision cuts the disease precisely and is the only way to ensure no damage is done to the healthy tissue surrounding it, they can send a sample to pathology to confirm, and can remove the cells all together ensuring there is no regrowth - at least in that spot; cutting down on inflammation and scar tissue forming adhesions. Adhesions are when scar tissue inflames the tissue so much that rings called adhesions begin to form attaching to the surrounding organs. The scar tissue will take the damaged tissue and whatever it is touching and bind them together. 

The first recorded medical journals date back to the 1890's when a dr found lesions filled with blood similar but outside the uterus. The treatment then was to open you up and cut that shit out. In the 70's/80's laporscopic surgery came around and based on no research the prescribed treatment was to take these fancy lasers and burn it out. Great that women didn't need a 10" scar across their abdomin but shitty they decided to burn the tissue without any medical research or proof this did anything. 

This became THE ONLY TREATMENT for endo until decades later. And the reason almost everything doctor will state that endo has no cure - because unless they are educated in MIGS and understand the superiority of excision surgery; they're right. Endo will never be cured.

But I digress, our courtship and first years of marriage were a whirlwind of love and travel, but also an urgency to start a family. I always had this voice in the back of my head louder than the rest saying 'you've got til 30' and I also knew that we wouldn't be able to go right to IVF.

I finally found a dr at a fertility clinic who would treat me knowing that we were not ready yet but would be soon. My first appointment with Dr Caruso was one the best experiences I had had since finding my doctors in Michigan. He sat and listened to my whole story. Two hours later he was reassuring me that he was there for me and that he would be our medical partner thru the next phase of my life. 

So we made a plan, I stayed on continuous birth control having as little periods as possible and after only 6 months of marriage we began fertility treatments. There are rules and even with my history I had to jump thru hoops. And after several failed IUI's, fertility drugs to jack my system, suppressing my period to control when I was fertile - you learn very quickly that getting pregnant is closer to a science experiment than some holy gift. When that failed and I had too many cysts and polyps they gave me a rest and we finally got to IVF.

I didn't struggle as mentally or emotionally during this time as you would think and probably what most women who've been thru this process did. I felt strongly that the only way I would ever become pregnant was thru IVF. I was told that since I was 14 and I believed it thru and thru. I had come to peace with that from a young age and told myself I was fine if it didn't work, but if I'm being totally honest I'm not sure I would've been ok had it not turned out the way it did. They call it an invisible disease because you can't tell from the outside your in pain or see the damage happening. Most women find out they have endometriosis when they can't get pregnant. But regardless of your mental state going into it: the process is hard; mentally, emotionally and physically. 

They suppress your hormones with the Depot Lupron shots they gave me at 20years old, so they can then Jack up your hormones to produce as many eggs as possible. This would be the 2nd time I went thru induced menopause. Man I hate that drug. But I had to do it and every morning Christian would try to find a spot on my abdomen that wasn't bruised already. We finally made it to harvesting and we had so many eggs it seemed crazy. We celebrated the day they extracted them and combined them in the hopes of forming embryos. I don't remember the exact number now; it's funny how you are so in tuned with every hormone level, number, speed, etc... that you feel they are engrained in your memory forever. But I think the mind knows better than to keep track of things like this. 

You start with say a dozen embryos and each day you wake up and call and find that number dwindling. It's extremely hard to stay positive but you remain hopeful. Until hopefully you land somewhere with at least one viable embryo they can implant back inside you. We thankfully had several.

They shoot you up with a super dose of hormones 24hours before implantation. I was in my friends wedding that night and by the time the pictures were being taken I had ballooned up 20lbs in literally a few hours. My dress cut into my arms that was once loose (I had gotten it big knowing this would happen) and the next morning we were off to get pregnant. 

They grade the embryos on their viability and you sit in this room and must make a decision. If they are not strong enough to freeze then you have to either let them go or take the chance they will survive against the odds. But you also must accept that whatever number of embryos you implant could all take - so if you implant 4 you must be prepared and accept the risks to carry quadruplets. It's not an easy decision. And if I truly believed that a soul comes into existence at conception then I'd be heartbroken for the souls we lost before we were ever even physically pregnant. That doesn't feel right to me. I don't know when a soul joins a physical body but I do know it's not then. 

Just 10 days later you go for your first ultrasound. They urge you not to take pregnancy tests because of the hormones causing false positives; so we waited. We had no idea if we would have multiple babies, one lone survivor or none at all. Christian held my hand as the technician was quietly beginning the test. He made a joke about it looking like an alien with 2 big black eyes - then he caught himself and asked if those were 2 babies. The tech laughed and said yes; you are having twins. We were ecstatic and scared and so so excited it worked. And even though they had been implanted 10 days prior; I was 8 weeks pregnant. 

We hugged and cried and I called my mom to tell her we did it. My pregnancy was a huge success for us all and had my parents not taken me seriously all those years ago I fully believe our miracle babies wouldn't exist. Early diagnosis and management made this possible for me and they were a huge part of that. The dreams my mom and I had from 14 years old were happening and we were all so incredibly happy.

I was 30 years old and pregnant. With twins 💕

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.