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.
Finding out we were pregnant naturally with Sydney was our second miracle moment living with this disease. My mom and I would dream of the day I'd be pregnant from the time I was diagnosed with endometriosis at 14yrs old. I knew I wanted kids someday, but not anytime soon. The Dr gave me until 30 with IVF, if I was lucky. So, we made a plan. That plan included not letting this disease get too bad before I sought help regardless of where I was in life. The plan included suppressing my period to minimize growth. The plan was to try naturally and when that didn't work; IVF would. I knew it in my heart and soul so having the twins via IVF fit the plan perfectly. I didn't think I could naturally get pregnant ever, but when we found ourselves pregnant after 1 month of trying; the Drs said, 'we don't know why; maybe your body just figured it out?' Like, my body is a slow learner?!? That didn't seem right, but we didn't care. It worked and we had our 3rd miracle baby on the way.
Pregnancy for me, was a relief. A break from the pain that lived inside me daily. Yes, it brought its own set of symptoms and pains, but I'd take them any day for a reprieve on how I normally lived.
Sydney was strong right from the beginning and filled the space that the twins had previously taken residency in quietly. But it wouldn't be without heartache; when I was 8 months along my mom was suddenly diagnosed with a stage 4 glioblastoma: stage 4 brain cancer. How would she survive that? How would I do this motherhood thing without her? How do I navigate this disease not only for myself but for my girls if they need it? My heart felt like it would explode from the pain, anxiety, grief, and loss that overwhelmed my thoughts and body. She would survive cancer for 22 months, but she lost her ability to communicate instantly; a part of my mom I so desperately needed during those days. Writing her letters helped but I needed her wisdom more; so many questions that would go unanswered. (You can read more of her journey here.)
In a matter of days, we were huddled in Michigan after her first brain surgery. And as I waddled thru the neuro-icu; a couple of nurses asked if I was having twins. I wanted to scream at them, but I refrained; and instead said, 'no you should've seen me when I was actually pregnant with twins;' and thru gritted teeth and as fast as I could I waddled to her bedside. Sydney did utilize all the space the twins created and when she came into this world, she arrived at 9:11a weighing in it 9.1lbs. She was the same size as the twins combined so maybe those nurses weren't completely off base... During this time, I struggled a lot with unresolved PTSD and survivor's guilt; I will never not think of that day when I see those numbers together and I was worried how it would make me feel. But maybe it was a gift. A gift to allow happiness in, to prove that anger and joy can coexist, to start the healing process from the mental and emotional pain I was still living with from that day.
I debated having a Vback, but with my mom starting radiation at the Cleveland Clinic we needed some control over this birth. A midwife vehemently warned me not to get the c-section; she relentlessly told me that there were complications, but nothing was ever said specifically on what those were. And we had a plan. I fired her and leaned into my Dr. I wonder now if she had Adenomyosis on her mind when she was pressuring me so hard? But if she had why wouldn't she just name it? It wouldn't have changed my mind, but at the very least I would've heard that word. My mom: despite her lack of verbal communication, would've forced me to research it. Maybe then it would've been in my head when my endo symptoms were changing so drastically, and I could have been my own advocate for a proper diagnosis. I would go thru so much more before I heard the word Adenomyosis for the first time at 40 years old.
Later the Dr told us if we had tried for the Vback; it would've ended up in an emergency C-section because of her size, which was a road I had already been down. I knew how very dangerous that could be for both of us and I am still grateful I followed my Dr.'s advice despite the window it left open for endo's evil sister to slide into the muscle of my uterus.
Just 3 days later my mom went for her first radiation treatment under this Michael Myers looking mask. It must've been awful being so closed in without the ability to even move, but she took it in stride. The days she was with us for treatment she'd rest in a lift chair just snuggling baby Sydney for hours. The 2 of them content in each other's arms. The twins were 3.5 and full of energy, so having her there was one of the greatest gifts she ever gave me. Sydney and I were there when she rang that freedom bell 6 weeks later. One of the most beautiful things I have ever witnessed in my life was my mom's smile that day. She freakin did it, and I couldn't have been prouder or more in awe of her strength. Shortly afterward' I got a tattoo of sewing scissors on my forearm with a red thread stitched S. I did it in honor of her beautiful strength and I positioned it where she would see it every time I helped care for her. I knew she hated having to be taken care of and I wanted her to have some kind of beacon, some reminder that she was beautiful and strong in allowing us to be there for her. Now, it's my homing device when I'm feeling down; to remember that I am cut from that same cloth and carry that same beautiful strength with me every day. It helps.
I wish I could've slowed those first few months down - life was full of love, the best kind of newborn exhaustion, my mom in her chair and my dad gazing at them as if he was willing the time to stop too. Quiet evenings watching Downton Abbey after the kids were all tucked in and midnight feedings reading Harry Potter for the 3rd time.
Right after New Year's my mom had her first seizure and it was terrifying. We were putting away the Christmas tree, sitting on the floor together when her voice turned into a skipped record. It took a moment to sink in what was happening, but my dad jumped right in to help, and Christian called an ambulance. Everything was moving in slow motion, and as I turned to look upstairs, I caught the twins peaking over the balcony as the firemen were rolling her out. I took off at lightning speed to tuck them back in bed and assure them they were only here to help Mimi. They don't remember it, but I will never forget their curious stares not sure what was happening. The first touch of real fear appearing in their eyes, and I was powerless to protect them from what was to come.
She went into a rehab hospital after her 2nd surgery, her left side semi-paralyzed from the seizures. But she was determined to hold Sydney again and to walk out of that hospital. Sydney and I would drop the twins at preschool and head to the hospital. After 6 weeks, we met her team of Drs, my husband on the line helping navigate a medical device that could assist moving her, but you better believe in the final days there she proved everyone wrong. She held Sydney in her arms again and started laughing - I know she was really crying; her true feelings trapped inside her unable to be expressed. And when we picked her up from the hospital, she defied us all as she stood up and got herself into the car with just a hand or two ready to jump in. I've never seen such incredible strength in my life, and it was truly beautiful to witness. Getting up and down in the lift chair was no longer feasible so we replaced it with a hospital bed. She would spend most of her remaining days lying and watching the kids play around her. Once Sydney learned to crawl, she would climb up Mimi's hospital bed to snuggle in. We teased them, calling it cuddle therapy; they would just smile and snuggle in. I'm pretty sure it worked both ways. Cuddle Therapy is still used when anyone has a bad day and I love that.
As soon as I stopped nursing the pain returned; as I knew it would, but it was different. My back still felt stiff, but all these other symptoms became prominent. The achy hips, a weird pain under my right rib, my thighs burned, chronic bowel issues, and the brain fog was deafening. Intimacy went from occasionally painful to excruciating.
At the chronic pelvic pain clinic inside the Cleveland Clinic, they gave my vagina Valium suppositories and sleeping pills for the insomnia; pain medication was no longer allowed no matter how necessary or responsible a patient you were. The Dr's themselves frustrated they couldn't do more to relieve the pain, but their hands were tied. They enrolled me in a trial for this medical device that I had to use daily. It was so embarrassing and painful to sit there with this thing inside me and I'd wait until everyone including my husband were asleep. I was always worried someone would wake up and see, but I did it anyways hopeful this trial would lead to something. It didn't. I put it in about 10 grocery bags and threw it away.
One of the best hospitals in the country and they never once gave me an ultrasound. They never once thought it was more than my endo flaring up; even with the symptoms so drastically changing. They said maybe you have new lesions - one of the dumbest things that were said to me ever as I hadnt had a period in over a year; when did these new spots develop when my period was suppressed? It didn't make sense, but I didn't know as much as I know now and just took what they said as truth. They told me when it got too bad then we could do another surgery to clean me out.
The pain was different, but tolerable most days. It would be years before we would find out that I was actually endo free since I was 27. My last laparoscopy finally doing the trick and the barbaric burning of the lesions along with scarring me permanently actually worked to rid me of endo; third times a charm, I guess.
Which is why I was able to get pregnant naturally before the adenomyosis got too bad.
Which is why my symptoms changed because I HAD A NEW disease. A disease that should have been in the minds of the brilliant doctors I out my trust in at the clinic.
And despite curing me of endometriosis by chance; the scars from the ablations created new problems and new pain and new scarring and a new journey with a disease I was completely ignorant to.
And even though my vagina was chill as fuck on Valium and the trazadone knocked me out; they were just a temporary band aid holding back the flood that was building up in my body.
2 months before her diagnosis on our favorite beach
Cuddle Therapy
Ring that Bell!
Mimi and her girls in the final days are rehab
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