Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts

5.03.2017

The One Thing I Need You to Know About My IBD

Well over a month ago, a relatively new friend of mine and I were in conversation over lunch. We were catching up about all the things college girls do-- boys and homework, boys and homework. About mid-conversation, I had a moment where I thought to myself "I feel normal right now."

Not even a split-second after that thought crossed my mind, my new friend asked "Kenzie, how has your health been?" I started by giving her an elevator speech overview of sorts. There's low blood counts. I'm still dropping weight unintentionally. A lot of my days/nights contain vomit. Lots of vomit. I'm frustrated. I'm anxious. I'm scared.

She looked at me from across the table and said "Kenzie, I don't know how you do it. I can't imagine how daunting these surgeries must be. How scary it must be to make treatment decisions..." I nodded my head. Those things are scary. That was a validating statement. The conversation carried on and I didn't think of this exchange again until I found myself on the bathroom floor last night. And that's when it hit me.

I had left my night class early due to yet another wave of nausea and made it back to my dorm room. Ophelia was there waiting for me; napping on our little twin sized dorm bed sweetly and soundly. She was excited to see me as she always is after we have a few hours of "break" time from each other.

I clipped on her collar, clipped on her leash, and we headed outside for a potty break. On our way back in, I realized I was going to be sick. Making it back to the toilet in time, I threw up my stomach contents for the umpteenth time in 24 hours. I stumbled to my bed, snuggled next to Ophie, and tried to breathe deep and slow. When I had regained some strength, I reached over to my nightstand and grabbed some baby wipes which I used to wipe my mouth and nose.

Shortly thereafter I excused myself to the bathroom. Not a second after I sat down, I realized I was finally going to 'go' after some back up over the past several days. I pulled up my pants and quickly skittered across the hallway to my bedroom where I grabbed the baby wipes and a brown paper bag from my colorectal surgeon's office. Upon returning to the restroom, I placed the little white hat from this bag underneath the toilet seat and proceeded to go to the bathroom.

After cleaning myself up and pulling back on my owl printed pajama pants, I knelt on the floor by the toilet meticulously opening sterile bags and bottles and carefully placing the correct amount of stool into each one. Around the time I opened the third of seven bottles, I noticed my bottom lip was quivering. Upon opening the fourth, I felt the tears start to flow...and before even reaching for the fifth, I sat back against the door frame and began to violently sob. Tears that had built up over YEARS of humiliation, frustration, confusion, and hurt finally broke through. And for once, I let them.



If there is one thing you ever know or learn about inflammatory bowel disease...please, please, please, let it be this. These are the moments I am scared of. The moments I am behind closed doors and quite literally find myself shoveling my own shit into vial sized containers to be sent away and tested. The moments where all of the built up animosity towards these diseases and the embarrassment they cause comes crashing down. The moments I am reminded that this is my life. That this is what it has become...and that this is what it will be for the foreseeable future.

To be quite honest, I'm not scared of surgeries. I'm not scared of treatment options, vomit, and long nights spent in a cramped ER. I'm not scared of a new diagnosis, an abnormal test result, or even unaccounted for symptoms. But what I am absolutely pretrified of is the moment pictured here-- a moment in which I am truly and utterly alone; humiliated beyond belief and at the very end of my rope. I am scared of the pain that even my closest friends and family members cannot enter into and sit with me in.

THAT pain is the pain I have to deal with and carry completely on my own. THAT pain is the pain I can't tell you about the next time you ask me how I'm "really" doing merely because it's taboo to talk about your inflamed bowels, stomach dysmotility, and rectal pain on the internet or otherwise. THAT pain is the pain that reminds me I am absolutely scared. Oh, how absolutely scared I am.

THAT pain is also the pain you do not, cannot, and likely will not see or experience for yourself. But THAT is the pain I need you to know about. THAT is the pain I need you to hold for me while I cry out the frustration and allow myself a moment to be the broken body + soul that I am.

THAT is the pain, and it is so relieving to finally just. feel. it.


2.27.2017

I Don't Want To Be (Physically) Healed

It was a Monday-- the start of a fresh semester. I pushed through a weird queasy/cramping feeling in my stomach all day and happily attended night class. Following class, I went to bed feeling completely nauseated and incredibly exhausted from "pushing through" all day. Still, it didn't occur to me that something could be seriously wrong.

Around 2am Tuesday morning I began throwing up. I woke up sweating profusely with a fever of 101.2 and attempted to go back to sleep + ignore the pain in my stomach though it appeared to be worsening. At this point, I thought perhaps I had the flu. I had also done my Methotrexate injection the evening prior and it is not uncommon for me to experience nausea/vomiting/a low grade fever following injection night(s). I continued trying to get some rest. No big deal, I thought.

I was wrong.

By 8am Tuesday morning, I could no longer hold down water or lie in anything other than the fetal position. The "twisted" feeling in my stomach left me feeling pretty certain that I was suffering from a bowel obstruction. I picked up my phone and dialed the colorectal surgery office and spoke with one of the nurses who cared for me following my subtotal colectomy last April. Through tears, I explained my symptoms and attempted to breathe deeply through the pain which was becoming more and more difficult to do as the seconds passed. The nurse and I both agreed that I needed to get to the Emergency Room where my attending surgeon would come by later. That said, she started the admitting process over the phone.

As I was giving the nurse the basic admitting information she asked for, she told me to pack a few things and gather my medications. Though I was aware of my delusional state from lack of sleep and the exhaustion that accompanies such pain, I somehow thought that I was going to drive myself to the ER. As I crawled my way out of bed and stood up to gather my medications, the pain became so severe that I blacked out/fainted. It happened quickly and absolutely without warning. When I came back "to" I was lying in a puddle of vomit and completely disoriented. After a few seconds, I remembered I had been talking to a nurse. I picked my phone off the floor and heard her say "McKenzie, stay with me. There is an ambulance on the way."

I don't know if it was the sheer feeling of defeat or the effects that the significant pain/lack of sleep were having on me at this point, but I broke down into hysterical sobs on the floor of my bedroom. Within 5 minutes, several paramedics came into my dorm room apartment, somehow managed to get me on the stretcher, and on the way to the hospital.

The ambulance ride was absolutely terrifying and incredibly uncomfortable. The pain continued to ebb and flow much more severely. As it lessened and then spiked again I screamed, continued to sweat, and white knuckled the scratchy ambulance blanket all wadded up in my hand. I really don't think I can even recount further details right now as my mind seems to be blocking them out (and for good reason). The 12 hours between 8am and 8pm that day were easily the worst and most painful hours in my 21 years of life thus far.

By the time we arrived at the hospital, all of my admitting paperwork was done. I was brought to a room in the ER where I was given pain meds and we arranged for a CT scan. The CT revealed (as suspected) a small bowel obstruction. Due to its location and severity, my surgeon suggested I may have had this obstruction for over a month.

Immediately, an NG tube was placed to decompress my stomach and remove the bile which had settled and was making me so sick. My surgeon came in again shortly thereafter and explained the emergency dilation procedure I would need to undergo early the following morning. At this point, my pain was being phenomenally managed and the next thing I remember is waking up in the hospital room I would call home for the next 7 days.


The days were long and the nights were even longer. Though my pain management regimen was very helpful in "taking the edge off," it was very evident that beyond the mechanical obstruction problem, we were dealing with significant inflammation all along my digestive tract. This inflammation can only really be treated by entire removal of the affected part(s) or utilizing high dosages of immunosuppressant drugs. Thus, the pain and symptoms continued as we began having conversations about permanent ileostomy/colostomy placement.

Around the 4th or 5th day, I remember lying in bed around 4pm. I had just turned on the song "In Control" by Hillsong United, closed my eyes, and quite literally began to cuss at God. Mere seconds after this argument began, in walked the hospital Chaplain. As we began talking he said "McKenzie, I remember you." It turns out this Chaplain had also come to visit with me back in April '16 when I underwent my subtotal colectomy. He remembered me as the youngest patient on that particular floor, and he also remembered a joke I had cracked in the midst of the hysterical tears that often accompany such post-op pain. Ha!

The Chaplain sat next to my hospital bed in an uncomfortable folding chair for a good hour. We talked about the complexity of my illnesses, how passionate I am about studying to become a social worker, and how I managed to get a hospital room "with a view." (Seriously! It had the best view of the Minneapolis skyline!) As we wrapped up our conversation, he asked to pray with me. Without thinking or really even knowing what was coming out of my mouth, I replied by saying "we can pray, but I don't want you to pray for me to be healed."

A bit taken aback but seemingly intrigued, the Chaplain looked and me and said "tell me more about that." Through tears and a continued whisper tone of voice (thanks, NG tube) I told the Chaplain things I have never told another human before. I told him what I feel God has been telling, showing, and teaching me for the past 7+ years.


I told the Chaplain I couldn't remember the last time I prayed true, physical healing over my own body. I told the Chaplain how I haven't really been to church in over a year. I told him of some recent experiences in which two church "leaders" suggested there may be "unforgiven, generational sin" in my family...hence the reason I had not yet "received healing."

Finally, I told the Chaplain what I felt God was telling me as I had been lying in the that hospital bed. I told him that I had spent the past several days doing nothing but swearing and yelling at God. Angry...livid, really. But also that I had never felt so close the One who created my body this way...and no doubt for some good and holy reason.

I told the Chaplain that I believe God can heal. In fact, I believe that He DOES. But there is something to be said about other forms of healing (in ways and for reasons higher than our own) apart from the physical. I believe that God has been faithful to me thus far and will continue to be. I see that God has used this pain whether He ordained it or not. He has made it purposeful, intricate, and beautiful. He has made it worthwhile. And yes, He has even made it good.

"God could have healed me 7 years ago, a week ago, even yesterday...but He has not chosen to do so...and that," I shared, "gives me reason to believe that perhaps the path I'm walking has a purpose far greater than what I will ever be able to comprehend."

That, to me, is the absolute truth. Some way, some how, God has given me distinct purpose and great joy in a life marked by tragic illness, great despair, and exhausting desperation. Perhaps having been given those things is what allows me to live a better life than the one I would be living if physical healing allowed me to do so painlessly and "ailment free" here on earth.

The bottom line I tried to explain is that to live in a constant state of pain is to live in a constant state of reliance on faith in Christ. I believe that and know nothing will ever compare to that. I fully believe that being healed and whole in Heaven one day will be worth the journey I am currently on.

Heaven. My mind was then directed to the idea of Heaven. Through tears I told the Chaplain "I don't want to be healed because I want to experience the fullness of God's presence HERE. In great sickness. In horrendous pain. In a plastic hospital bed with an NG tube down my throat, a defeated spirit inside of me, and visible tears in my eyes..."

I want to experience the fullness of Christ and how He responds to His children when they are lying awake at 2am screaming in pain and begging for the strength to make it through to the next dosage of pain meds. I want to experience the fullness of Christ which feels so visceral and overwhelmingly beautiful upon waking up from yet another round of general anesthesia. I want to experience the fullness of Christ in the deepest, darkest hours of my life here on earth.

...And I want those things not for attention, pity, or to be seen as some great martyr. I want those things and the other pain our broken lives bring because I want to seek, to know; to pursue, to learn. To wrestle with and experience the perplexing truth that authentic JOY is possible in the midst of severe pain.

All of these thoughts and tears had me reciting a favorite poem in my head. A poem that I'd never truly understood before, but could now grasp to its full extent.
The Thorn by Martha Snell Nicholson 
I stood a mendicant of God before His royal throne
And begged Him for one priceless gift, which I could call my own.
I took the gift from out His hand, but as I would depart
I cried, "but Lord this is a thorn and it has pierced my heart.
This is a strange, a hurtful gift, which Thou hast given me."
He said, "my child, I give good gifts and I gave My best to thee."
I took it home and though at first the cruel thorn hurt sore,
As long years passed I learned at last to love it more and more.
I learned He never gives a thorn without His added grace,
He takes the thorn to pin aside the veil which hides His face.

I don't want to be (physically) healed. Not here, not now...for I know God is using this daunting hike through life and the mountains of chronic illness to refine and restore my soul in ways that only He can.

So, the Chaplain and I prayed. Not for physical healing but for the strength to endure. The grace to benefit. The willingness to learn from and let God use this pain. For the first time in a long time, I felt like someone had truly listened to me. Someone allowed me to be comfortable in all of my uncomfortableness...someone chose to enter into that uncomfortableness with me. And in my mind, there is nothing more beautiful than that.

12.30.2016

And There Is No Shame

My ongoing battle with major depressive disorder began around the age of 14. It began to rear its ugly head shortly after the onset of what would later be diagnosed as seronegative juvenile idiopathic arthritis and has now become seronegative rheumatoid arthritis. The nature of this autoimmune condition is still idiopathic, meaning we have no idea what is causing the inflammation.

All that to say-- because not a lot is known regarding the nature/progression of idiopathic autoimmune diseases from a juvenile perspective, I went misdiagnosed for a period of almost 2 years. During those 2 years, I struggled intensely. I was passed around from doctor to doctor-- many of whom refused to acknowledge a single physical symptom I was experiencing. Because I was a young woman in pain, it was believed that I was clinically depressed and there was no more to the story. But for me, there was.

If I wasn't occupied wishing that death would soon come, I found myself wishing that I could at least find a way out. I figured that 'way out' had to come through one of two things: suicide, or finding a purpose in the pain. I am grateful still today that the latter won out.

Although I was diagnosed with both primary and secondary physical conditions, my mind remained in the dark. All the while I thought "Kenzie, what the hell is wrong with you? Pull yourself up by your bootstraps and get on with it. No one else your age feels this way. You have a physical diagnosis at last-- your mind has no reason to be in the depths of despair anymore."

But that's just it. Depression, anxiety, and post traumatic stress disorder have no rhyme or reason. They don't signal warning signs before they take over your life and they are far from predictable. They ravage your life and take all that they can; whether that consists of your energy, your passions, your spirit, or your ability to do something as 'simple' as taking a shower.


And that's precisely where I found myself. In the depths of despair day in and day out...constantly looking for a way to draw attention elsewhere. I got into unhealthy relationships, attempted to ignore my mind's cry for help, and eventually became convinced that this bleak life would never improve.

For 4 long years, I continued attempting to ignore the pain of both my mental health and physical state. And finally...halfway through my freshman year of college, I recognized that I really needed help. Really needed it.

I saw a free counselor on campus. Our styles didn't "jive," per se, so I decided to try someone new. I saw that new counselor for a few months and soon found myself sending her e-mails filled with excuses about how I'd have to miss our next session due to this and due to that. In reality, all I did was pull the covers over my head for another two hours and mope around when it was time to go to class.

Pretty soon, I wasn't even seeing a counselor anymore. Then the summer came, and I was referred back to a pain psychologist I'd seen several years prior as part of a pain management program. I was honest with her and began writing-- and I mean really writing-- again. Journal entries were dark during that time, but oh how therapeutic they proved to be.

"Waking up is hard. Getting out of bed is hard. Showering is hard. Pretending it's going to be a good day is hard. Starting things is hard. Finishing them is even harder. I noticed something awhile ago...I'm not excited to get dressed in the morning anymore. I used to practically run from my morning shower to my closet -- brimming with outfit possibilities and clothes that I adore. Now, I limp over to the cabinet I keep my t-shirts in, pull on a stretched out sports bra, and try to gauge how long it will take for my neck pain to kick in, radiate down my arms, and give me a migraine.  It's almost as if it has become some kind of sick game..."

That summer-- two summers ago-- became a massive game of trial and error. I was put on some of my very first anti-depressants and I saw a licensed psychologist 3 times a week. I was referred to a psychiatrist in the area and we continued to find the med combination that would work for me. We burnt through Cymbalta, Savella, Effexor, Prozac, and a list of PTSD inhibitors to help me sleep at night. Things certainly got worse before they got better.

But then, we found somewhat of a medication match. Even so...today, I still find myself somewhere between "stable" and "unstable." I am able to currently work part time, study full time, and participate in college life. For the most part, I am able to socialize, complete tasks, motivate myself, and LIVE. It's refreshing, but it's not the reality everyday for someone who is mentally ill. To advocate for that truth, I've made it my mission to acknowledge the beauty, the pain, and everything in between...most often, publicly.

Whether it's an Instagram caption turned mini blog post, a simple 140 character tweet, or an extensive post like this one that I've poured tears and so much more into...I have found that the sharing of our own realities and perceptions not only empowers us, but it breaks down the barrier that says conversations surrounding mental health are 'uncomfortable' or 'wrong' in the context of community...especially the religious/spiritual community.

I made a decision when I was first placed on anti-depressants and given a prescription for sedatives to calm me down during a panic attack or PTSD episode. That decision was this: there can be questions, there can be uncertainty, there can even be fear...but one thing you will never, ever find dwelling here is shame.



Let me tell you something, friends. Mental illness does not discriminate. That is unfortunate. Even tragic for some. But what we must also remember is that neither does the ability of HOPE to carry us through. There is always hope.

Physically, this has been the most painful year I've experienced yet. Mentally (though there were certainly moments of great triumph), I would have to say the same. It has been painful and so so heavy to carry this pain around and it's been even harder to the ignore the stigma that is associated with such struggles.

I have had 3 intense scares with my mental health in the past month where the idea of hurting myself became more than a distant thought. I spent several nights in hospital psych wards not knowing how I got there or if I would get to go home that day.

3 weeks later, I am much more stable. We have adjusted medications and I am being followed closely by multiple competent physicians. While I'm "okay," I'm also still struggling. That in and of itself (as previously mentioned) is a pretty freakin' weird limbo to be in.

A quote I read once says "it is necessary to let things go, very simply for the reason that they are heavy." That couldn't be more true, especially right now. I don't think I've ever resonated with something so strongly.

I have been given the opportunity to embark on a European study abroad adventure on January 4th and will be away until the 26th. I am very, very much looking forward to the respite and perspective this trip has the potential to provide and cannot wait to share those adventures through writing and pictures with many of you. For now, though, I need to (and am going to) step away.

Social media (and this blog in particular) is an instrumental part of my life and journey any way you hash it, but sometimes we need space -- even from the things that make us feel most alive and ourselves.

And there is no shame.


11.28.2016

Invisible Illness, Guilt, Community, & Positivity

Invisible illness. Guilt. Community. Positivity.

I know what you're thinking...the concepts are hardly synonymous. In fact, at particular points along this journey, I will readily admit I have struggled with accepting that some of these things can even coexist.

I'm hardly a professional when it comes to sustainable mental health, positive energy, or even relative emotional stability (let's be real)...but I've certainly learned a thing or two the past 7+ years and I'm not sure I would have learned those things had I not been diagnosed with rheumatoid arthritis (and 6 co-morbidities).

I've found that it's important to think deeply about the things that bring hope and make me look forward to tomorrow despite the inevitable pain and grief that will be there as a result of living with chronic, invisible illness. It's also important to remember there is professional help outside of our immediate circles of influence; and it is equally (if not MORE) important to talk with our doctors about both mental and emotional health.

INVISIBLE ILLNESS

I risk sounding clichΓ© here, but it is imperative to note that absolutely every single one of us copes with stress and fear differently. Even the stress and fear experienced by two people with the same autoimmune diagnosis differ significantly. However, I would be willing to venture a guess that the invisible element to these chronic conditions affect most of us in a similar manner. The exhaustion that comes from constantly feeling the need to justify and explain or risk being invalidated and/or judged heavily sadly affects everything we do. Invisibility *almost* never, ever feels "good" or validating.

Don't get me wrong, there is a certain feeling of empowerment and even one of gratefulness that comes with/from being able to cover up my scars and swollen joints with clothing. However, that "hidden blessing" can just as well be a curse. A life marked by a chronic condition (or several) already leaves many of us in a constant state of limbo. One hour can feel well-managed and triumphant and the next you can find yourself in a puddle of tears grieving the thought of a life you might have had. It's a scary place to find yourself as there is no predictability living in a body that deceives and attacks itself daily.

I try to keep a healthy list of things (an actual, tangible list sometimes...but a list in my mind, mostly) that have helped me through difficult, painful seasons in the past. Some of the most tried-and-true techniques I've found include:

  • Using a meditation app such as "Buddhify" or "Headspace"
  • Calling, texting, or otherwise messaging one of my  pals.
  • Putting my energy and focus to work on a specific project. Lately, that energy/focus has been put towards my journey to getting a service dog!
  • Scheduling an appointment with my mental health professional to talk about and employ other coping mechanisms, such as progressive muscle relaxation, "leaves on a stream," etc.

Now, if I'm being honest, not even an ounce of me feels like seeking positivity or practicing healthy coping strategies, particularly right now. My body has been flaring for several weeks and as I continue to wait to begin a new medication, I have found myself spending majority of my time curled up in bed with ice packs, heating pads, pain medication, and ginger-ale trying to block out the internal, invisible pain. And, well, the guilt that comes along with all I've written thus far makes me wonder if what I've done or continue to do just to keep my head above the water is "enough."

GUILT

I've found that the most pressing guilt I feel and am constantly trying to break free from stems from the very simple but detrimental thought that I could be or should be doing MORE when I am doing ENOUGH. If I have a couple hours between classes or my next appointment, the reality is that I will (more often than not) choose to take a nap rather than do the laundry. If I was in the emergency room for hours the night before trying to get pain under control, the reality is that I will (more often than not) choose to skip class the next day and force myself to rest.

Yet, even though I can straightforwardly present those two recent, real examples in writing and refrain from typing the words because...or let me tell you why...I still find myself fighting the voice of guilt in my head. The voice that says "Kenzie, people have it worse" or "Kenzie, this reveals just how much of a burden you really are..."

There is immense power in recognizing that, but mere recognition does not change thought processes or eventual outcomes. Personally, I've found that expressing the guilt I feel with a trustworthy member of my support system often relieves some of my incessant search for that sort of validation. Giving yourself grace in it all is important, too. The repeating of simple "observation" mantras such as...

  • I was particularly anxious today, but that doesn't mean I'll feel the same way tomorrow. 
  • I am doing my part in this treatment process; that's all I can do.
  • My pain is real and my feelings about that pain are real...and those things don't need validation.
  • A good day is good day...and a bad day is a good story! 

...has helped me immensely in terms of intervening with these unproductive thoughts. :)

COMMUNITY

Because I've been struggling myself, I decided to reach out to the beloved  Twitter community for ideas. The raw, visceral responses to a tweet in need of suggestions is just one of the reasons I believe in online community more than I believe in just about anything else. My kindred spirits are people hundreds (sometimes thousands) of miles away, but we are able to reach each other in ways that no one else can.
There are very few things more powerful than a community of people who speak unabashed truth + fierce encouragement. I have been fortunate enough to find a safe place within these communities on , , and with some of my favorite folks at Joint Decisions. I will be forever grateful for that honor and the empowerment it has brought me. I strongly, strongly encourage all patients to seek out and engage in these communities as they foster an environment of connectedness and vulnerability through the sharing of one's personal story.

POSITIVITY

I think it's both fair and safe to say that even following the specific suggestions set forth here and practicing a variety of other healthy habits won't completely take away the sheer reality of what it is to live a life filled with continuous, constant, chronic pain. 

Nonetheless, throughout the seasons where and when we are reminded just how all-encompassing our pain can be, I think the best thing we can do for ourselves is remember the often somber but universal truths that get us out of bed in the morning; ready and willing to fight for another day. That, to me, is true positivity. Seeing each day as an opportunity to try.

I have known no other humans with as much determination, gumption, and strength as those in this community. Most days, it really can and does feel like drowning. That's the truth. Every day, though, I am reminded it is absolutely possible to learn how to swim. 


"We cannot save anyone; we can only offer ourselves as a guide to fearful people. Yet, paradoxically, it is precisely in this guidance that the first signs of hope become visible. This is so because a shared pain is no longer a paralyzing pain but a mobilizing one, when understood as a way to liberation. When we become aware that we do not have to escape our pains, but that we can mobilize them into a common search for life, those very pains are transformed from expressions of despair into signs of hope." -Henri Nouwen


This post was sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions, however, all thoughts and opinions presented here are my own and should NOT be taken as medical advice.

Check out Joint Decisions on  and !

10.28.2016

Better Days

*** Written last night -- October 27th, 2016 -- the night before today -- tummy surgery round 2.

Ah, yes. Here we are again. On the eve of yet another surgery/potential diagnosis that I had to fight like crazy for several MD's to even consider. 

Here. I'm here indeed. I made it to today. As you're reading this, I'm probably showering the last time for a solid week-ish. More likely, I'm probably making last minute hospital packing changes and my blood sugar is no doubt dropping lower than low because I haven't eaten anything since midnight!

I'm headed back to the operating room today for what I like to call another "abdominal revision." We have pretty clear evidence that points to a rather severe endometriosis diagnosis and after a solid year and a half, I'm finally under the care of a physician who cares enough about my pain to do something about it.

Around 12:45pm this afternoon, I'll be wheeled back for a little nap and hopefully wake up with some answers and controlled pain. Not sure about that last one -- HA! -- but a girl can hope. ;) Let's just say my stomach has seen better days.

[pictured: top left...morning of subtotal colectomy, top right...8 days following my subtotal colectomy, bottom left...14 days following my subtotal colectomy, bottom right...last night & approximately 6 months post-op]

All week I've been a little wound up about the fact that my doctor has decided to reuse my incision sites from April's subtotal colectomy (if possible). Though she thinks it will actually be a less painful recovery, I have my doubts. Cutting through freshly healed tissue and (as my dear friend Ben would say) "putting a flamethrower in my uterus" sounds like a recipe for some major, gut-wrenching (pun intended!) pain.

The concept of cutting into these incisions again is just a little hard to wrap my mind around...and looking at these past pictures of my bloated, distended tummy following surgery scares the $%^# out of me. I think the most frightening thing I've learned about pain is that all you can do is endure it.

If you're cold, you wrap yourself up in a blanket. If you're hot, you turn on a fan. If your stomach has been cut into in four different places and your body decides "HEY! THAT HURTS!" all you can really do is take the scheduled pain meds and pray to God they'll make you drowsy enough to sleep through some of the hurt.

But, as we must...forward is the only productive direction. Forward holds the potential of relief from endometriosis and forward holds the promise that I'm going to make it through this operation the same way I have made it through the last five. One moment at a time.

10.11.2016

Endometriosis, You're Up Next

It has been awhile since I've done any sort of comprehensive blog post detailing the sole aspect that dictates my life...MY HEALTH! Or lack thereof, I should say. Haha! I genuinely did laugh at that as I typed it out. Probably sounds morbid, but the truth is that I've had far too much coffee today to be affected by anything. Is this what being invincible feels like?!

Back to the subject. Almost 7 months ago to the date, I wrote a post titled The Progression which answered many of the questions I was receiving from friends and family regarding a rather major upcoming operation. I'd like to say this time it's not as *serious,* but the fact of the matter is that every surgery my body undergoes from this point forward is going to be considered high risk. Especially when we're dealing with the abdominal/pelvic region.

Perhaps I've peaked your interest? Now you'll read the entire post and end up knowing wayyyy more than you ever wanted to when you clicked this link. Major TMI about to go down. Consider that your warning!

Yesterday, I had my pre-op exam/labs for a laparoscopy at the end of October. As per usual, this next surgery involves a rather private? sensitive? uncomfortable? region of the body. In August of 2015, an ultrasound revealed significant endometriosis growing on the outside of my uterus. The images clearly showed that my uterus was/is also what they call "retroverted" or "tilted." Let me break that down a bit...

Endometriosis is a disorder in which the tissue that typically lines the inside of the uterus grows on the outside. Usually, if the spots/growths are small and directly on the uterus, strange bleeding and pain is pretty minimal (full disclosure, though: EVERY woman's body is different in responding to this awful disease). There is no way of telling or knowing who will develop this messy disorder and, to put it frankly, endometriosis knows no bounds. 

This stuff is kind of like that 3-year-old kid who is all over everybody, all the time. You know what kid I'm talking about? The one who doesn't understand the concept of personal space or the fact that most people have a "bubble." (I love strange analogies, but even I'll admit comparing a child to uterine tissue growth is too weird. LOL!) These unwanted growths can spread to the intestines, ovaries, fallopian tubes, and even the bowel causing severe, daily pain as well as menstrual irregularities.

Retroverted uteruses on the other hand are completely, fully, 1000% genetic. Some people are more "predisposed" to them than others and some people go their whole lives without knowing they have one. However, if there is an autoimmune presence, this tilt becomes significantly more "pronounced," as they say. Perhaps I was born with this finicky uterus; perhaps the presence of autoimmune inflammation and eventual endometriosis caused it to tilt. We will never know and at the end of the day, it really doesn't matter. It is what it is.



I found out about my endometriosis in August of 2015 when I saw a gynecologist for the first time. She discovered all this nonsense and additionally noted "significant fluid within the pelvis and presence of multiple cysts." As we went over my imaging, she prescribed me birth control pills and told me to come back and see her when I wanted to start a family. She dropped the words "probable infertility" due to my autoimmune history and the state of my uterus...then sent me on my way.

I went back to see her several times -- particularly when my bleeding/pain was incessant. Each time she suggested IUD insertion. For a host of reasons, I was squeamish about this option at the time and denied it at every visit. We tried a few different kinds of birth control pills and nothing seemed to improve.

If I'm honest, I would say my symptoms have increased by 50% since I first saw her last August. Finally, last month, I knew I had to make some sort of change/decision/commitment. I had gotten my period the 2nd week I was back here at school. For the first 5 days (of a SIXTEEN day cycle...SIXTEEN DAYS) I was constantly laying on the heating pad and taking excessive amounts of Tylenol. Running low on endurance and hope, I ended up calling the nurse line and they scheduled me for an appointment with a new gynecologist at the same clinic within a few days.

I went to my appointment that Friday and immediately the new physician said "why the h%#$ haven't you had a laparoscopy yet?!" With hormones and emotions running high, I was able to utter out the words "I don't know" in between sobs. She sat with me, handed me tissues, and assured me that I would not be leaving that exam room without a plan. Her biggest concern at this time is that the scar tissue that has already formed and settled will render me infertile...especially if we allow it to continue to grow and make a mess of my pelvic/abdominal cavity. "Probable infertility" were words uttered from her mouth, as well.

We discussed several options and narrowed it down to a laparoscopy in which she will cauterize every little bit of endometriosis she sees, biopsy cysts/abnormal tissue, and insert an IUD. Sounds straightforward and simple, but with my previous colectomy incisions-- "we are going in blind," as they say.

The concern is that the scar tissue from April's subtotal colectomy will have caused organs like my bowel to "shift" or find themselves resting comfortably in a new region of my abdomen. Since there are wide open spaces in there (Dixie Chicks reference anyone???), it is very possible that things have settled where they typically wouldn't.

To prevent any life or death situations, a general surgeon is scrubbing in with my gynecologist right away. (She is speaking my love language by being preventative!) It is possible I'll stay the night in the hospital depending on what everything looks like post-op, otherwise it'll be straight-up outpatient.

I haven't had an excessive amount of stress or anxiety about this upcoming operation (surprisingly) but I have had a hard time "grieving" the concept of (in)fertility. I just turned 21. I have no plans to get pregnant any time soon and for most of my life, I have pondered the way in which I desire to build a family when the time is right. Adoption has always, always been "the frontrunner" and I can't think of any other way I would want to bring precious babes into my life.

But the fact that adoption is so uniquely beautiful doesn't negate or invalidate the grief I feel about having heard the words "probable infertility" over and over and over again the past year and a half. 

Young girls become teenagers...eventually those teenagers become women-- and their whole lives through they watch the women around them carrying precious babes, giving birth to precious babes, and repeating the process. By the time we enter womanhood, we have been socialized into thinking that one of our "duties" [as women] in life is to carry a child in our womb.

Now, I am not trying to rip on anyone's decision to build their family through having biological children. I am not saying that the way God created women's bodies is not remarkable or intricate and so wonderfully fascinating. In fact, I support both of those things wholeheartedly. As a nanny, I have watched the process. And that process-- the process of building a family-- continually leaves me in awe, truly. What I don't support, though, is the stigma or "less than" mentality that one can experience when biological reproduction is not in the cards for them.

You're probably thinking "Kenzie, you don't need to worry about that right now." To that, I will say "yes, I do." At my appointment two weeks ago and again at my pre-op appointment yesterday, the discussion of removing my uterus, ovaries, and fallopian tubes was placed on the "long term plan" timeline. Long term meaning "whenever you solidify your decision to not have biological children, Kenzie." Long term meaning "whenever you've reached your maximum pain threshold and the endometriosis has grown back with a vengeance, Kenzie." 

That is the future of my biological womanhood. That is the future of my overall health and quality of life. That is a decision that certainly takes time to process, reflect upon, and ponder. That is something that my significant other (one day) must accept about me.


These are the ramblings of my heart...the things that keep me up late at night and then inevitably work their way into my dreams. These are the thoughts and feelings I choose to share here on a public blog. Why? Because I know I am not the only one. From just 2 Instagram posts [regarding endo] over the past few days, over 30 women have messaged me privately to tell me about their experience with endometriosis, chronic pelvic pain, and infertility.

What is harrowing to me is that more than half of those women stated "I thought I was the only one." What is even more harrowing? That the number 30 only surveys my small community and does not account for the women who did not feel comfortable speaking up.

I refuse to shut up (as many of you faithful friends have noticed)...and I think that's where the remarkable Ask Me About My Uterus movement stemmed from. Women who wouldn't shut up. In the best way.

So, label me a worrier, over-thinker, over-analyzer, and the like. You wouldn't be totally false. But you would be grossly generalizing over 176 million women, including myself, who face incredibly tough decisions about their biological womanhood daily due to endometriosis. I'll leave it at that.

Cheers and prayers to October 28th and my first official laparoscopy!