Tag: texas

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 fiancĂ© 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?

33 Days – The Countdown Begins!

33 Days – The Countdown Begins!

This post has been so intimidating to write, since so much has happened in the past couple months and you need to be caught up, dear friends and family who have faithfully and lovingly followed my journey. Sometimes I feel selfish for thinking that my story matters, or that it’s worth sharing, but I know that if my struggles, my discoveries, even just my telling of this story can help one person out there with chronic illness feel less alone and a tiny bit more empowered, or if my story can help a woman become diagnosed, it has all been worth it. I must be faithful in the sharing, and God will bring the increase.

As you might know, I’ve had two previous surgeries for endometriosis. One gave me 2 months of relief, the other 8 months. I relapsed in September 2016 and joined forces with the amazing Dr. John Dulemba in Denton, Texas, in January of 2017. We decided to proceed with two excision surgeries to remove the endometriosis and do some other things to decrease my pain. This has been stalled by job and insurance loss, finances (the surgeries have a very high out-of-pocket cost), medical testing, and logistics. It has been heartbreaking, and grueling, as my physical state has continued to decline.

This summer has been filled with turning 25, entering into pain management, heart monitors, doctor’s appointments, dental work, financial finagling, working really hard at my new job which I love, savoring the little moments with my boyfriend and our cats, and working towards the ultimate goal of the two surgeries.

It has been a LONG road, but I am so thrilled to announce that I will be having surgery on October 27th and November 1st! We are currently 33 days away from surgery, and I can’t explain how wonderful, surreal, and terrifying it is to know how close we are to what I believe will be an excruciating but beautiful turning point in my life, if all goes as planned. I’m finishing up a series of tests and appointments leading up to the surgeries, and all the logistics and packing that comes with a 10 day stay in another state!

I would love your prayers, well wishes, good vibes, hugs, and questions (please ask me ANYTHING you want about endometriosis or chronic illness), and I hope you stop back tomorrow; I will be blogging daily throughout this process of preparing for surgery, enduring the surgeries, recovering, and hopefully entering into remission! Jesus has been so loving to me throughout my journey, and I know He will do incredible things in the next couple months that I want to share with you.

I will open my soul and share the beautiful, the painful, the boring, the unexpected, the exciting, and the sacred. This is my promise to you, my friends, my family, my supporters, my endo sisters; I hope you will consider walking this path alongside me.

Love to all of you,

Katie Joy