Tag: endometriosis awareness

No More

No More

I keep rewriting this because it’s hard to say, and hard to face. That’s also the reason I broke down today while relaying the past two months’ developments to my pain management doctor. The hard truth is that adhesions have very likely grown back on my rectum and bowel and possibly other locations, four months after they were removed by a world-renowned endometriosis specialist during a grueling two-surgery process. I’ve been working with my PCP, endo specialist, gastroenterologist and nutritionist to treat severe digestive dysfunction and abdominal pain which has made me pretty sick, and kept me on a liquids diet for a while. If it continues, it will threaten my ability to digest food properly until another surgery to correct it.

This is all on top of trying to find solutions to multiple co-morbid diseases and dysfunctions that endometriosis and its treatment has caused. Oh, and the medication I take to suppress all hormones in my body with the intention to prevent further endometriosis growths is changing my body in multiple soul-crushing, potentially permanent ways, although I know that the benefits outweigh the cost.

I felt amazing, just two months ago. I had some of the same issues then, but there was progress being made, and it felt like everything was moving in the right direction. The suffering and damage incurred during four surgeries and treatment appeared to have made me exponentially healthier. I had hoped that we had at least subdued endometriosis and adhesions for long enough to give my body a chance to fight off the rest of the attackers.

While I am absolutely in far less pain, while I know that my surgeon potentially saved my life, and while I don’t regret the surgeries for a hot second, I’m so beyond belief, or emotions, or words. Frustrated isn’t the right word; neither is angry, or sad, or upset. None of those convey the nagging feeling, the empty gravitas of accepting that no matter how many surgeries or treatments I endure, I was born into a body whose very perfectly natural, normal healing process, adhesions, curses me to indescribable pain, organ dysfunction, and helplessness. That what restores others to health will always chain me to disability.

There won’t be any avoiding these patterns, there won’t be any chance of outrunning the pain, there won’t be any graduating from routine follow-ups, there won’t be a knight on a white horse in an OR or waiting for me outside the office of the twenty-seventh specialist I’ve seen in as many months.

I think the only truth that allows me to continue traveling through each day like everything is okay, that equips me to laugh and plan and sit calmly binging The Newsroom with my fiancé while at the same time knowing that I will never totally or even partially shake off the pain, the appointments, the medicine, the fear of the faceless adversary wreaking havoc on my very core, under my skin… Is the realization that I have no other choice.

I no longer have the option, the luxury of lobbying to evict my nemesis. I don’t get to take the easy way out, of just waiting to kick the sucker out to begin living. No, that’s not how my happy ending will work. Mine will more or less take the shape of, “the best revenge is a life well-lived.”

You heard me right; there’s no more waiting until I’m healthier, until I’m done fighting endometriosis, or feeling stronger. There’s no more putting off goals I want to pursue, places I’m dying to see, risks I’d love to take, and the other innumerable joys and disasters awaiting me when I’m “better”. Endometriosis may not be killing me, but giving it all my time, energy, and devotion might as well be. I’m watching my life pass me by, waiting for this demon to leave, while he’s signing a mortgage on a three-bedroom and picking new tile for the master bath.

No more. No more waiting to fight another battle when I’m stronger, or less emotionally tired, or when I’m done with this six month treatment, or when the IV bruises have faded and I stop running my fingers over the several new abdominal scars I picked up in Texas.

This being caged by my own body’s attempt at erasing the painful history of trauma, my own body’s success in restoring my flesh? This inability to stop healing, which ironically harms me? This is the very reason that I can no longer put off living for “someday”.

I must capture, seize, hold hostage this day, this very day, the one that you and I are both living. I no longer have the luxury of letting it pass by while waiting for a better one. That day may never come, and I will die with a life haunted with “what if”.

I may not be able to control my body or the storm brewing inside me, but I can choose to muster the courage to live fearlessly and boldly not in spite of the pain or suffering, but with the knowledge that nothing I have faced yet has broken me, and nothing has been too difficult for me to overcome with the strength of the Lord and my loved ones.

The joy in life doesn’t come from the pursuit being easy, but rather it being worth the struggle and passion poured into it. My waiting stops, my story continues, and so does my fight. How about you? What are you fighting for?

31 Days

31 Days

Today was a rough day, there’s no other way to say it. It started out with all the usual morning motions of shower, clothes, makeup, carpool, medicine, water, breakfast, tea, journaling my sleep, medicine, goals for the day, work, more water, more work, more pills. Everything was fine in my world; I was worn out, didn’t have much energy, but felt comfortable, stable, quietly hopeful.

And then the tail spin came. I was sitting at my desk in the walk-in clinic, when I was visited by a familiar sprite who causes my head to feel blurry, my eyes to stare at black, and my mouth to stop functioning. I messaged my clinical counterpart in walk-in and close friend that I was blacking out. She raced up to see what was happening and when I couldn’t speak clearly, she ran to call the provider we work for to come check on me. The nurse practitioner, along with two other female providers, sprinted through the clinic to reach me.

They laid me on the floor, monitored my blood pressure and pulse, and waited it out with me as the spots kept control of my vision, the fuzziness prevented me from speaking, and a couple tears rolled down to the carpet beneath me. The women surrounding me were one of my best friends and the greatest nurse I know, the nurse practitioner I work for, with whom I grow closer with by the day and adore to no end, the other nurse practitioner in the walk-in clinic (who is amazing as well), and a physician assistant who has become a friend, and is also the daughter of the couple in whose guest house Nick and I will be staying in Texas during my surgeries.

Once I was able to get to an exam table and take a few drinks of water, we talked through all my prescriptions, medical situations, upcoming appointments, and my surgeries. They gave me their worried love, wiped lipstick from my cheeks (that crap will get in weird places when you randomly faint and have to be lowered to the floor), and stood by me with the quiet strength that always emanates from them. They helped me talk through solutions and prescribed me to eat a sandwich and a cookie 😀 I was told to eat a cookie today, y’all!

As lighthearted as I just sounded, the event left me shaky throughout the rest of the day, and set my emotions spinning. Earlier that day, I felt in control, I knew the plan ahead for my health, I didn’t expect anything like that to happen to me today. But it did; I had no foresight to predict it, no power to stop it, no ability to withdraw from its grasp once it had begun. I was its prey, and there was no changing the course. It’s a hard reality for someone who works so hard to manage, take captive the symptoms that like to taunt me in order to maintain the feeling I associate with being “me”.

But as a daughter of Christ, I have experienced that there is one who is ALWAYS in control of what happens to me, and won’t ever let me go even in the midst of the worst chaos. And as the shock and fear wore off, the peace of Jesus and the strength of the women surrounding me propelled me forward, and held me together as I endured through the day. As the day continued and each patient came and went, I felt increasingly proud of the fact that I was still standing, still showing up to my life, still making a difference for each patient during their visit. In myself and in the women who surrounded me with such love and protection, I caught a glimpse of the Wonder Woman who, each day, is my own muse.

As I sit here in bed and mull over today, my first conclusion is that I am thankful for Jesus’ ever-near presence and comfort, and that He is the only one in control of my life and my health. The second is that I have never been more grateful and awestruck at the women that surround me every day at my job. I am inspired by them everyday, and I marvel at their presence in my life. They are strong, bold, smart, and loving, and they push me to be those things, too.

❤ Katie