Showing posts with label health update. Show all posts
Showing posts with label health update. Show all posts


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, 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.


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.


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!


The Progression

It feels like yesterday and it feels like a year ago when I posted a mess of a GI update. I wrote it just to write again and get some information down somewhere. I was journaling a lot, but I needed the chronic community to come alongside me as I waited for test results and began to pursue surgical options.

This blog has grown with me over the past 6 years. It has nurtured honesty and it has taught me the value of telling it like it is. And so, even though the GI issues I've been facing for the past year felt (and inevitably ARE) uncomfortable/embarrassing/what have you, I just felt like this blog needed to continue growing with me. So I wrote. And I posted that writing online...right here on Life According to Kenz.

And I'm thankful I did because things have since progressed fast and furiously. On April 4th, 2016 I will be having a subtotal colectomy. 

A subtotal colectomy consists of removing a majority of the colon (large bowel). Unlike in a total colectomy, my rectum and anus will be left untouched. My small bowel will then be joined to my rectum. This part of the procedure is called ileorectal anastomosis. According to my scopes last Friday which showed minimal inflammation in this area, there is no need for a stoma or ileostomy/colostomy bag at this time! (HUGE praise!)

My blog is going to become a CaringBridge of sorts over the next couple of months (pre-op, op, and post-op), so I want to get logistics down here for those who may not know me well. I am truly trying my hardest to respond to comments, emails, messages, etc. but it is impossible to get to them all in one sitting. Just know that I read every single one and each of them sustains me during the dark moments that inevitably still plaque me from time to time. This is my best (and probably failed) attempt at getting some answers down all in one place. :)

"So, how the heck did you get here?!" Back in September, it was suspected that I was developing early stage Crohn's disease (another autoimmune condition). However, after further investigation and invasive testing, we discovered that majority of my abdominal/GI/bowel symptoms are being caused by something called colonic inertia or severe slow transit constipation. I was officially diagnosed in January.

"What is colonic inertia?" Colonic inertia is a motility disorder. It is also referred to as an abnormal passage of waste throughout the digestive system. My colon (for unknown reasons at this time) is simply working FAR too slowly and refusing to contract on its own. This causes extreme constipation which results in excruciating pain, loss of appetite, and round-the-clock nausea and vomiting.

"You've had constipation issues for why are you having surgery now? Is it urgent?" Well, the short answer is no. It's not a matter of life/death. But it is a matter of quality of life/no quality of life. Let me explain. The past year has been awful, but I have accepted most of the symptoms as my reality. That is, until said symptoms started to affect my ability to get out of bed in the morning, go out for dinner with my friends, or get a good nights sleep in my bed...not on the bathroom floor. The reason we started pursuing surgical options is because my ability to function independently is decreasing with each passing day and I have now lost 35 pounds due to my inability to eat/hold things down.

"How long is recovery time? Can you have visitors in the hospital?" Recovery time can be anywhere from 5-14 days in the hospital depending on how the surgery itself goes. There is plenty of room for complications just as there is with any surgery, but the potential pros at this point far outweigh the potential cons. I can certainly have visitors in the hospital (and at home!) and will happily put you in touch with my mom should you want my hospital/room information. After I am discharged from the hospital, there is a 6 week period of no lifting/activity beyond walking and a 4 week period of no driving. I will NOT be bedridden (mark my words)...

"Are you dropping out of school?" ...but I will also be in no state to be manage 15 credits and two on-campus jobs. I have withdrawn from two classes, will be taking an incomplete in one, and plan to finish both an online course and night class pending my professors accommodations. I plan to be back at Bethel in the fall, but will be moving home for the remainder of the semester at the end of this week. And by the way, "dropping out" is a swear word (swear phrase?) in my book. Don't ever say that around me, and definitely not to me. ;) 

"Are you still going to the Dominican Republic over spring break?" I failed to publish a blog post about my excitement to go to the Dominican over spring break with a missions team here at Bethel...but I shared that with many of you in real life. :) However, after meeting with my surgeon and confirming surgery dates, it was decided that the infection risk is far too high for me to be traveling out of the country, returning, and then having a major operation (involving removing an organ). I am heartbroken and hate that it feels as if I am "losing" another bit of independence thanks to the condition of my health, but I know that the rest of my team will have a life-changing experience there.

"How can I support you?" Continue asking questions and please continue sending prayers. I feel them. I also so appreciate the words of encouragement through messages, conversations, and cute little cards. :) Words of affirmation is my love language! The night before I met with the first colorectal surgeon on this journey I kept repeating "I choose peace" under my breath until I fell asleep. I was so afraid of hearing what I didn't want to hear the next day. The night before my scopes last week, I simply thought "I can't wait to spend time with my mom tomorrow!" I felt content. Really. At the end of the day, I am anxious and afraid as any patient would be leading up to a major surgery, but I trust my team of doctors and the support system surrounding me. And you know who else I trust? The God that has brought me this far and continues to promise me healing.

At MedX in September of last year, I met a beautiful woman named Breck. She has a young warrior son named Bennet who has battled Cystic Fibrosis and its complications since birth. She chronicles her family's journey with the disease on her blog. Her writing has such a focus on what you would know, see, feel, etc. if you were in her position. The vulnerability she exudes is contagious and simply being a reader of hers has made me a better empath and advocate.

My only goal these next couple of months is to write and share more honestly than ever before, just as my friend Breck has. As I grew up dealing with constipation issues, I was so terribly embarrassed and ashamed. As those constipation issues turned into much more serious complications such as duodenal ulcers and anal fissures, I felt completely and utterly alone. It is my hope that through sharing my journey (the good, the bad, and the ugly), even one person would realize that they are not isolated in their suffering. That sounds cliche...but I would've given anything to be that one at the start of my chronic health journey.

I will update as I know more, but for now I leave you with words from the incredible Henri Nouwen. In his book "Turn My Mourning Into Dancing" (which I am currently reading) he writes,

"True gratitude embraces all of life: the good and the bad, the joyful and the painful, the holy and the not-so-holy. We do this because we become aware of God's life...God's presence...both of which are in the middle of ALL that happens."