The Journey will never truly end and that's ok

Nearly 4 years ago I had my hysterectomy and after years of misdiagnosis, unnecessary surgeries, and a sudden decline in my health, I finally had a surgically confirmed diagnosis of Adenomyosis. 

It released me from the chronic pain and life I had lived most of my life, but when my doctor told me I had less than 1% chance of the endometriosis coming back and that I was truly free... well I didn't really know how to feel about it. I was relieved of course, I think I spontaneously cried over a dozen times, I spoke to the ether to tell my mom we did it and then cried some more that she wasn't here to see all her advocacy and strength and love had worked.

But the relief and maybe a bit of survivor's guilt would be short lived because the reality was there was a long road ahead of me. My tailbone pain would not give up the fight so easily and it would take 8 months of pelvic floor therapy to release the tendons that tightened up from years of tension, pain, and adhesions that had pulled my tailbone out of alignment. 

The struggle to get to a healthy weight and muscles fatigued and sore like I was constantly walking uphill. It's a battle I'm still in the midst of, but I am winning the war.

The anger that it took 6 years of rapid decline to get proper medical care. The fear that as I move past these diseases that we will be right back in it with our daughters. The anxiety didn't know it could stop. The morning body check to see what my pain level was that day. The injuries that would shadow me every time I began to get into a groove. Mentally letting go of old patterns that no longer served the new me and not even realizing I was doing it. I felt guilt for needing my family to sacrifice so much for me; I didn't feel worthy of it. I wanted to be over it all, but that feeling of being a burden to your loved ones is not released so easily either. I needed to be an example to my children, I felt like they only knew one part of who their mother was, and I had so much left to show them. To lead with love and hope and do the things scared, so that this version of me that we had all endured could be put to rest.

I knew part of that journey was finding joy in my own life, and I tackled this new lease on life I was given. Cured of these diseases but still so much work to do physically; I was anxious for this new start. I wanted something for me, but every job I looked at didn’t fit. The money was not worth the exchange of my time nor missing out on my family. I am an entrepreneur at heart, but the startup costs and time demands were too much for me to consider going back to that way of life either. I wanted it all, but no idea how.

I was attracted to working from home, on my own time, and with a company I was proud to stand beside. We were on a pretty tight budget, and I thought if I could at least pay for the products I loved; I wouldn’t have to give them up. It all started making more sense for me, but I was worried what people would think, still so skeptical of the business model. The products had given me my curls back, I loved that they were safe for me and my family and knew I could talk about them authentically, so I dived in scared. I would have no idea of the path ahead of me if I was just brave enough to put one foot in front of the other.

As I was preparing to go to my first in person conference, I hit yet another snag and the morning I left I broke my pinky toe. Another obstacle i put in my own way, but I felt the need to go and I’m so glad I did - the energy, seeing old friends, and meeting new ones; it was electric. 

Then Tony Robbins came on stage, and everything changed. I think I had tears streaming down my face for the full 4-5 hours he walked us thru a sped-up training session. He spoke to the science of personal development and changing the old patterns that were hardwired in; it all just started clicking for me. I immediately signed up for his workshop; shell shocked to find patterns that were hardwired in me from 30+ years of chronic pain and illness, having to advocate for my health despite medical professionals gaslighting me. My body was cured of these diseases, but I needed to free my mind of them too.

It was not an easy path. I was humbled. I came face to face with my fears. I received clarity as to why I had so much anxiety at night, and I hated falling asleep. Because I was scared of what the new day would bring me. I've tried for years to be a morning person and every time I try to wake early, I'd self-sabotage all night long. 

And finally, I found gratitude. Because I can blame a lot on these diseases, but I can thank them for just as much if not more. I am incredibly driven to succeed. I can multitask like a mother. I am voice for other women who are marginalized still living with these diseases. I am the best person to advocate for my daughter's well-being. If these diseases come near them - I've got the tools and resources so that they will not live a lifetime of pain like I have. I am empathetic and a listening ear. I know how to listen to my body and give myself grace when it needs it. I can speak intelligently about women's health and reproductive rights. I am helping school nurses here in Illinois get the training and information needed to help young girls recognize the signs of this disease because early detection is vital. We need to close the gap. And I will continue to be a voice for those who have none. I will share my story candidly and openly so that others may feel less alone in their own journey. 

It wasn't a cure all, one and done situation. Consistency, choosing to be grateful, and appreciating all the time I have ahead of me. 

I needed to break the patterns I used to survive so that i can thrive in the now. 

Finally free physically, and now mentally too. The next chapter is going to be epic, and I can't wait to see where this journey takes me next.

My Endo Journey cont... What the F**k is that?

This next chapter took a while for me to dive into. Up until this point in my journey, the story flowed from me like a river after the rain. Like a worn book you've read a million times that still tugs at your heartstrings and has you celebrating the wins. The memory of the pain forever embedded in your skin like a faded scar that says you lived through this. 

But the years following Levi's birth are rawer and still healing. Anger and panic still rest right below the surface. It took so long to get my next diagnosis that it feels criminal what women still have to go thru to get proper care. Nothing has really changed in the 25+ years of living with this disease. Symptoms are often looked at as individual problems rather than treating the whole body. Our bodies are complex and unlike my previous postpartum days; the pain would never go away. My back was stiff with a permanent rod pressing just above my tailbone. I had this pain up under my rib cage, my hips hurt like I was 9 months pregnant, and the top of my thighs burned like I was constantly walking at a slight up cline. Intimacy went from uncomfortable to excruciating. They gave me valium to use as a suppository to calm my pelvic floor, trazadone to force myself to sleep, and mild pain medication that was a joke. Vicodin no longer allowed even when in pain management therapy. My periods were incredibly heavy and could last 15-25 days when my body would no longer listen to the birth control, I was using to suppress it. They prescribed iron when I complained of feeling dizzy. Cysts would burst regularly, like someone squeezing my ovary just to the point before it burst bulging thru your fist. I stopped going to the doctor for those and would just ride it out with a heating pad and expired pain pills I had left over from when doctors were allowed to actually treat chronic pain. Consistent bowel issues would take me to GI specialists that put me through elimination diets and food sensitivity testing, colonoscopy, and several gall bladder tests; one that left me radioactive for a few days. 

A year into trying to figure out what was wrong with me, they decided it was in fact my gall bladder causing my pain and removed it. But nothing changed and so I went about my life putting my suffering on the back burner so that I could take care of my 4 little kids, and a growing business. I did it for as long as I could, but my body wasn't having it anymore.  The breakthrough periods happened more often. My belly so swollen I looked chronically 6 months pregnant for years.  

I grieved my mother who had helped me walk this disease for so much of my life and I felt lost. I didn't know how I was going to do it without her love and support. She was my advocate and when she got sick and then died, I just couldn't face it alone. But too much stress, too much pain, too much life and a few years later I knew I couldn't ignore the pain any longer.

I had been going to the chronic pain management clinic at the Cleveland Clinic for years but due to insurance that was no longer an option. I made an appointment with a new doctor who was an endometriosis specialist. I remember sitting in her office with my surgical records as "proof"; not knowing what kind of doctor I was going to get this time. I was scared, angry, frustrated and nervous that I had to share my story yet again and I had no idea if she would treat me with kindness or like a drug seeker. It typically went one way or the other. But she was kind and listened to my story with empathy and attention. She ordered an internal ultrasound, though and I got suspicious. I knew endo wouldn't be detected on an ultrasound so what was the point. I went ahead with it anyway feeling defeated that she really wasn't qualified to handle this. 

The tech performed the ultrasound right there in the office and immediately without hesitation said "oh, it looks like you have adeno." Excuse me? What the f**k is that?!?!?! I have endometriosis and you can't see that here. I was so confused. She was looking at me with shock that I had never heard of adenomyosis - endo's evil sister. She was so sweet and said "I shouldn't have said anything but I'm pretty sure this is what you have. Although it can occur on its own, it most likely happened during one or all of your c-sections. When they cut through the uterus some of the lining is transplanted into the muscle of the uterus and acts just like endo does. It has nowhere to go, so your uterus just grows and grows to accommodate the blood. It could be the cause of every one of your symptoms."

I went home and just sat there crying. So mad at the Cleveland Clinic for wasting 5 years of my life because they couldn't be bothered to do an ultrasound and look at my growing lists of symptoms. Angry at the Dr's who unnecessarily took my gallbladder and caused new issues, angry at the Dr's who performed my 3 c-sections and never once mentioned this was a risk. Mad at my mom for abandoning me and scared as hell as to what I was going to do about it. 

The only cure was a hysterectomy. The recovery would be long. It could take years to fix all the damage it caused. All my symptoms and pain were growing at rapid speed. Birth control was no longer working to suppress my period and I was bleeding everyday now. She put me back on the awful drugs that put me into menopause again; hot flashes and mood swings and all. My tailbone felt broken, and I couldn't sit down anymore. I gained 25lbs within 30 days and I was so swollen I couldn't even reach down to put my underwear on. 

How was I going to do this? I felt worthless and a burden to my family. My husband and kids got this shell of me that could barely get down the stairs. My life was crumbling. I felt selfish for having a family and all my fears of not being a good mother because of this were on my shoulders like a freight train.

My husband was there by my side through it all. He encouraged me to be my own advocate and find the best doctor I could. I found a resource called Nancy's Nook and it is a mecca of science driven information for endometriosis and women's reproductive health. In there was a list of MIGS trained Doctors that had been vetted and were known advocates for endo patients. Most were fertility doctors because typically women find out they have endo when they struggle to conceive. 

That is when women find out that they were not just having bad periods, but their pain for years was due to endo. It takes on average 10 years before women get a proper diagnosis. I was lucky with endo finding it right away. It took 5 years for me to get my adeno diagnosis let alone just hear that word come out of a doctor's mouth. 

There was one doctor in Chicago that took older women not looking for fertility treatments. We travelled to Chicago to meet with him, and he also believed that I had adenomyosis and would've gotten me into surgery within weeks.  He told me I was in luck, because if I had been under 40 or had less children, they would most likely deny my surgery regardless of my pain or symptoms. Not having healthcare choices over our bodies is not a new concept. It was happening before roe vs wade was overturned and now instead of moving forward to fix a broken system, we travelled back 50 years. This is the first time I really thought about what my daughters would face if things went differently for them, and they needed this surgery when they were young. 

I would need family around me to recover. And as my symptoms progressed, we knew we were not going to be able to run the food trucks this year. The recovery was going to be long, and we made the really hard decision to sell our businesses and move home to Chicago permanently. It still breaks my heart when I think of the sacrifices my husband made for my health. We left a community where we were invested in and were loved by our community. We had deep roots. Leaving was heartbreaking. We planned my surgery after my son's baseball season, so he could play with his friends one more time. We sold our business in May of 2019, surgery in June, and we moved home in July. 

My Dr had a GI specialist, a urologist, and multiple other doctors on call in case things were worse than expected. From the scar tissue my uterus was completely frozen to my bladder, and it took an extra 4 hours to separate them. My tailbone was pulled under from the ligaments shortening due to years of chronic pain. My uterus was the size of carrying a 6-month fetus; he had to cut it in half just to remove it from my body. I was able to keep my ovaries, pushing off my 4th final journey through menopause for another day down the road. He found no endometriosis - crediting my last laparoscopy for curing me of endo and the reason I was able to have children naturally after the twins IVF taught my body what to do. Three ablation surgeries over 13 years finally got it all; frustrating to know that excision surgery when I was 14 years old could've been a one and done situation. It's hard not to imagine what my life would have been like if I was free from it then. But if I can blame it, I can also thank it for all the ways it shaped me to be a strong woman, an advocate for my own daughters and women, and my incredible drive to give back to a community of women that are marginalized and unheard.

And although I'll never know which c-section caused the adeno it's most likely all 3 contributed to it. How do you cut through a muscle and not leave traces of blood on the scalpel? It should be common sense for ob-gyn doctors to warn women of this HUGE effing risk associated with having a c-section. Not that it would've stopped it from happening or changed our birth story, but it would've saved me years of misdiagnosis, unneeded surgeries and tests, and so much money to have a direction pointed out for me. Especially being an endo patient.

Immediately I was in less pain recovering than I was living with daily with adeno. It was a relief, but the recovery was just beginning. I would spend the next 8 months going to the city for pelvic floor therapy to release my tailbone. The pain finally subsided, and I had one last appointment to say goodbye to my care team when the pandemic hit. Appointment was cancelled and we were told to shelter at home. I never got to say goodbye to my team at NW for giving me my life back pain free. 

He gave me less than .1% chance that the endometriosis would ever come back, and I was stunned. Menopause is not a cure for endo, but because it was finally gone and no uterus it won't come back. 

And while my body was cured, and the pain managed; mentally I was still not free. Who was I now and how does that shift how I operate in life? How do I make the most of my freedom and new lease on life??

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.