Tag: chronic illness

Day 25 – It is Well

Day 25 – It is Well

I have been struggling with anxiety, the type where your chest hurts, your mind freezes, and your breathing changes, for the first time in my life. I’ve even had a couple panic attacks when thinking about the surgeries, what my body, mind and spirit will go through, and experiencing flashbacks of the previous three surgeries in the past three years.

To help center my mind and heart, I’ve been reading Psalms and going through several devotionals through the Bible app, focused on anxiety, trials, suffering, grief, illness, and hope. One of my devotions today discussed fear of the unknown as being the true origin of anxiety. It said that when we want to control an aspect of our life but can’t, it sends us into a tailspin of worry, fear, doubts, and feeling unsafe, fragile, precarious.

I immediately thought of the impending surgeries, the entire process, the sinking feeling of helplessness that hits me whenever they come to mind. I also acknowledged that my intense planning for the surgeries, (packing and shopping and making lists of lists and asking questions and gathering documents and changing my diet and preparing my body and mind) is a desperate attempt to grip onto what little bit of control I can wrestle away from the unpredictable monster named the OR.

On Friday, October 27th, after all flights and drives have ceased, after all pre-ops and bloodwork and ultrasounds and IVs are finished, my surgeon will meticulously excise (cut out) each spot of endometriosis on my pelvic walls, muscles, organs, etc. This alone can take hours, as he will make a wide margin around each growth so as not to miss any cells that could continue growing at a fast pace and threaten my chance at remission.

This takes precision, skill, knowledge, and a trained eye. Dr. Dulemba’s ability to do this delicate type of surgery is what distinguishes him as a true endometriosis excision specialist, which is closer to a gynecologic oncologist than your standard OBGYN. After the endo has been removed, he will remove my appendix, burn some nerves around my uterus to decrease pain, check out my organs, and remove whatever may be damaged. This will be followed by a hospital stay, an IV, catheter, and On-Q pump to locally manage the pain.

Five days later, Dr. Dulemba will go back in and remove any scarring that may have formed on the hundreds of internal incisions created during the first surgery. These scars, adhesions, can be almost as painful and damaging as endo itself. Then he will use Amniofix, sheets of gelled umbilical cord harvested post-birth, as a covering on the newly scraped incisions, and this will protect the incisions from scarring over again. One month later, my body will absorb the gelled umbilical cord, as it’s an organic matter. After the second surgery, I’ll repeat the routine of the hospital stay, IV, catheter, and On-Q pump.

At the end of the devotion, the writer asks you to focus on the one fear deep in your heart that is at the center of your anxiety and fears. He challenges you to surrender it to Jesus, lay it at His feet, and let it go. When I questioned my heart, I could separate my fear of the surgeries process from the fear of the outcome of the surgeries, and one outcome in particular, one that’s hard to discuss with my boyfriend and parents because it will change their lives forever too.

I don’t know if I will wake up on October 27th and hear the words “we had to remove”, “there was no way to save”, “I’m so sorry”. I don’t know, when I’m rolled out of the OR into recovery, if my fertility will be still with me, still inside me, still part of me. I don’t know if my dreams of holding a baby girl that has my cheekbones or my love’s blue eyes will die that day. I don’t know if my heart will be broken when my consciousness returns.

There is no easy way to brush it aside, to pack into a neat box and put it on the shelf of my sub-conscious, as I have been trying to do for months. It is a possibility, a nightmare that has unfolded for many of my endometriosis sisters with advanced endo after a similar surgery. I have stayed up with them crying and listening, I have shared their sorrow, and I have prayed for their shattered hearts.

Today, after reading the devotional, I prayed for Jesus to ease my fears, for Him to teach me how to fully lay it down at His feet, and for me to be able to wholeheartedly believe, “Thy will be done”. I prayed for help remembering that His love for me is so great that, if that is the path I am to walk, He has chosen this path in love, in protection, in goodness, in kindness towards me, His precious daughter.

I am still struggling with this fear, and I probably will until the fateful moment I awake from the first surgery and hear the surgeon’s report, but one of my favorite songs states “There’s a place where fear has to face the God you know.” And I know the kind, gentle, ever faithful, all powerful Friend who will be with me in the OR and beyond. So with every fearful thought and pang of fear and heartbreak, I pray for bravery to say no matter the outcome, “It is well with my soul”.

❤ Katie

 

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26 Days

26 Days

Apologies, friends and families, for my absence! I promised I would post every day, but the past couple days has been unexpectedly difficult. On Wednesday, I had a cortisone injection in my right hip at my pain management clinic. My right hip has always been a painful area when I have active endometriosis, so I ‘m hopeful that it will decrease the pain until the upcoming surgeries!

I knew that it wouldn’t a great experience for me since I hate needles so much (and it involved 9 needle pricks within about 5 minutes), but I didn’t expect my leg to be so sore for several days. Wednesday and Thursday night, I couldn’t sleep very well due to tossing and turning because my hip and knee were so painful and I couldn’t ever get comfortable. Friday and Saturday, my calf was completely locked up due to limping and overcompensating to protect my hip. I’ve wanted to cut my leg off since the injection!

But the pain has decreased each day, and I’m very hopeful that, in time, it will help with the pain and inflammation caused by endo in that hip until the surgeries.

I also got two blessings the past couple days; mail from two of my favorite sisters! The first sent me a card and what sounds like a great book, which was really thoughtful since it’s a book she read, loved, and suggested to me. The second package, which came from a dear chronic illness sister, contained an incredibly sweet card, a gorgeous watercolor flower and handmade bookmarks composed of small drawings and quotes that have been important and poignant to her through her years of health issues, wrapped together with a little light green crocheted loop.

Both of these ladies cheered up my day immensely (and they also know me very well)! I am so grateful for their friendship and love. I ADORE getting mail, I will always devour books specifically suggested to me, I am always in need of a good bookmark, and I absolutely love something as personal as sharing quotes that were their strength in hard times. Nothing couldn’t be more precious and meaningful to me!

Thank you to both of these women; you know who you are, and I love you very much! God dispenses His love to us in several ways, and the two of you are part of the way He shares it with me ❤

It’s 11:11, and we are 49 minutes until it’s Day 25! Time for me to prepare for the coming week, which when it starts, will feel like a freight train bearing down until it has ended. I wish you a wonderful Monday, and all of God’s blessings!

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

 

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

 

Things That Fail

Things That Fail

Dilaudid. Tramadol. Amitriptyline. Ibuprofen. Naproxen. Acetaminophen. Aspirin. Hormone therapy. Kratom. CBD gummies. CBD oil. Cannabis lotion. Cinnamon. Ginger. Essential oils. Epsom salts. A heating pad. Bubble baths. Pelvic floor therapy.

These are all things I have used in the past seven months to manage my chronic pain from endometriosis and a couple other suspected pain generators in my pelvis. Every day of my life, I incorporate a multitude of them to be able to go about my day, to finish my assigned work shift, to be able to drive myself, to get something else done that day other than work and sleep, to be able to think straight, to attempt to be a version of myself that I recognize.

These are all things I use or have used to manage my pain, and these are all things that fail to do so. Even with all of these in play, the pain still persists, still dominates. My deep bench of reinforcements are no match to the litany of attacks my body carries out against itself. Every day, I am failed by the resources afforded me, and the frustration is not minimal.

The chronic pain patient makes trade-off decisions all day, every day. Do I grit through all-encompassing pain, or do I allow overwhelming nausea and stomach pain? Do I limp all day and want to crumble to the floor in pain, or do I choose debilitating fatigue and dizziness?  Do I struggle even thinking straight because the pain takes up all of my brain capacity, or do I decide to take a pill that makes me someone I don’t recognize? Do I allow the pain to debilitate myself, or do I risk lifelong addiction? And, for some, do I again wonder how I will make it through this day, or do I break the law?

We are facing an opioid crisis in our country, and a larger drug problem. I believe that at the core of that crisis is a pain epidemic. Our chronically ill far too often fall into two different camps: the first camp is over-medicated and becomes addicted to pain medication while dealing with their initial disease and all the subsequent side effects, and the second camp’s pain is not taken seriously and under-treated (or treated like an addict), and often end up using whatever they can get their hands on to make the pain stop, and the results are often dire, lifelong, and lethal.

All the while, the DEA is trying their best to ban CBD oil, medical marijuana, kratom, and other natural pain management alternatives from which millions of chronic pain and mental illness sufferers find relief. They are not 100% effective or without their own side effects and trade-offs, but patients and their medical allies should be given the opportunity to evaluate whether those therapies would benefit them.

I don’t write this post to garner sympathy, but in hopes that this will give you, dear reader, a brief glimpse into the daily frustrating battle someone with chronic illness wages everyday in order to operate, live their day, and survive through to the next one. I also hope this has reminded you that the drug crisis in this country is not one centered around crime, but around human suffering, and that it is all of our problem, because even if you don’t realize it, it affects your mom with fibromyalgia, your cousin with Crohn’s, your child’s teacher with gastroparesis, your best friend’s wife with endometriosis, your neighbor with leukemia, your nephew with PTSD, your coworker with Lyme disease, and your friend with arthritis.

So be quick to show kindness to all, and slow to judge; everyone is fighting a battle (whether large or small) that may be invisible to us presently, but is nonetheless VERY real.

Kingdoms

Kingdoms

      Susan Sontag believed that there is a kingdom of the well and a kingdom of the sick. I find this to be very true, and now as I reside again in the latter rather than the former, people come to visit me far less often in my not-so-new home. Even those whom  I love and trust and who love me seem to not be able to entirely cross the bridge of my illness. They seem to be able to tolerate a bit of my strange land, or they just avoid it, pretend it doesn’t exist. This makes the border difficult to cross both ways.

      I don’t know when it’s necessary for me to emigrate, and sometimes I’m too tired to. I desperately don’t want it to be this way, but I’m finding that the reality of my new citizenship is too hard to ignore. Maybe I’m too tired to always make the trip. Maybe this is where I have been created to work.

      And maybe I like this tribe better; maybe I find more humanity, more beauty, more grace with the other broken, the others with chaos running through their veins. They seem less like a slippery mirage than the other tribe and much more like good, dark dirt, soft and tangible and visceral to the touch, rich in all things good, easily able to grow something else beautiful from their being turned inside out and outside in again.

The Very First Blog Post

The Very First Blog Post

       The very first blog post… it’s so intimidating, right? Because I have to tell you what I want you to know about me, and what I’m going to write about, and why you should come back to read it.  And that sounds really scary… and difficult. It’s hard to describe ourselves, or to neatly summarize our passions, or seemingly put ourselves into a box.

      What I can tell you is who I am to my core, without any regard for what is trendy or flattering. I’m a passionate, bubbly, sometimes loud Italian girl from Des Moines, Iowa, which will always be home to me. I’m the youngest of my generation in a large, crazy, beautiful family that I daily miss so much that it physically hurts. I’m a grateful Christian who falls short of deserving or appreciating the kindness and grace with which Jesus blesses me over and over.

      I’m a girl who’s madly in love with my boyfriend and our kitties, and can’t get enough time with them all. I’m a libertarian, who believes in the rights of life, liberty and property for all. I’m a political junkie, born and raised in the Iowa caucus chaos, who will always miss campaign life and never be able to give up her passion for defending liberty and human rights. I’m a fearless, with-all-my-heart pro-life activist, no matter the cost or danger. I’m a feminist, who believes that women should be equal to men socially, judicially and economically, and that we still have a ways to go. I’m a Virginia transplant, trying to chase down the DC dreams I’ve always held in my heart.

      I’m a warrior battling a debilitating disease every day, endometriosis, along with adenomyosis and interstitial cystitis. I’m an advocate, protector and friend to my fellow endo sisters  who are suffering and struggling in silence amidst the pain and lack of proper treatment. I’m a chronically ill person who doesn’t have the luxury of being a normal 24 year old woman; I have to fight for my health in more tiny ways every day than you could imagine.

I’m one tough cookie who never gives up or throws the towel in. I wear unbearable pain like a string of pearls and pair it with a lipstick smile. I’m a risk taker, a cross-country move maker. I’m that girl with crazy curly hair, fire in her heart and steel in her bones, a tornado with pretty eyes and a heartbeat. I’m easily bruised but never broken. I am imperfect, always struggling to improve despite myself, beginning again every day to create the newest most beautiful version of myself. I am loved, and I love. I make mistakes and I let people down, including myself. I am constantly aspiring to accept the love and joy God always has in store for His children. I am a hurricane of emotions, hopes, dreams, fears, and passions. I strive to choose joy everyday, despite any and all circumstances..

If you want to read honest, vulnerable thoughts, you’ve come to the right place. If you strive to love God with all your heart, so do I. If you know what it feels like to love people like crazy, you have something in common with me. If you care deeply about human rights or politics, welcome. If you relate to chronic illness or would like to learn more, please stick around. If you love cute cat pictures, you’re in luck!

      So in short, I hope that through who I am and what I’m passionate about, you will see where my heart is, and that some part of it will speak to who you are and what you love, and that you will choose to become part of my whirlwind, sit in the passenger seat as I travel through life! I’m excited to see where it takes us.

                                                                                                                     -Katie Joy