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 #ChronicLife 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 #ChronicLife 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 Twitter, Instagram, 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 Facebook and Instagram!

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!

8.01.2016

A Response to Being Diagnosed with Hypoglycemia

Today: Fewer words typed out. More words spoken. And even a few tears cried. On video.

I don't know for sure why I felt so strongly I should to film this video the other night. I don't even know if I successfully articulated the things I was attempting to get across! But what I do know is that I want this space to be real and raw, and in order for it to be just that we all have to share the hard things, too. In fact, not too, but especially. We have to share the hard things especially.

The things that would be easier to keep to ourselves. The things that hurt and haunt us. Our stories....pasts, presents, and futures...no matter how daunting, messed up, or complicated...are the very things that hold the healing we so desperately seek.

I truly, truly believe we do ourselves and the God who created us a HUGE disservice when we ignore an opportunity to share the way difficult trials can truly be revolutionized into an opportunity for more assured and solid hope. When we are vulnerable and honest, however, we can move to a place where we are the furthest thing from alone. In addition, we give others the freedom to learn they are not alone, either.

Since my subtotal colectomy, I have struggled intensely with low blood pressure and what we most recently recognized as low blood sugar. Though I know adding hypoglycemia to my laundry list of diagnoses is not the end of the world, it is something that has greatly affected my independence the past few months...and last week, hearing those words affected my emotions greatly as well.

Watch the video below, and I'll fill you in a bit more...


I have gotten quite used to Methotrexate (chemo) Saturday nights and Humira (biologic) Wednesday nights. I have worked through a fear of needles and conquered these injections week after week all while learning that I can only do my best. Some occasions hurt worse than others-- sometimes tears fall and sometimes they don't even scratch the surface-- but all in all, injections have inevitably become a part of my life.

Checking my blood sugar will become a part of my life in the same way. I will figure out this "new normal" and learn the ins and outs of how to maintain this crazy blood sugar of mine. I will eventually learn I can't "forget" to check my darn stats before I eat a meal, after I wake up, or when I'm feeling all sweaty, insanely shaky, and shivering my ever loving booty off. I'll learn. And as I learn, I'll continue to grow.


One step, one finger prick at a time. :)


7.12.2016

Currently (July '16)

Thankful for...a crazy stressful but eye-opening full time job that is teaching me so much about the field of social work and how sure I am of this career path. Also for the opportunity to live with Grandma Shirley for the summer. She is such a gem and the memories we continue to make together are priceless. What a gift!

Watching...The Frey Life! This couple vlogs daily and shares the reality of what it's like to live with/be married to someone with a chronic illness. They are honest, vulnerable, and hilarious to boot! I watch their latest vlog before closing my eyes at night and it always leaves me smiling. I'm also contemplating restarting Friends and watching ALL THE EPISODES all over again. #noshame

FYI...this post is in no way, shape, or form sponsored by the links I'm sharing today. ;) I've just become rather obsessed with the black hole that is YouTube and want to share awesome people with awesome friends. :)

Listening to...The Coteries (!!!) Particularly their original songs I'm Traveling On and Ain't No Time... but also their awesome cover of Mercedes Benz by Janis Joplin. Seriously, do yourself a favor and subscribe to this group on YouTubeThey were featured at 'Music in the Park' a few weeks ago here where I'm living with my Grandma for the summer. Super humble, down to earth people and a sound you can listen to at 10,000 feet in the air, while studying your assets off for some big exam, as you're running [away from your problems], or as you drift off to sleep at night. Embedding video below so you can have a listen as you finish this post!



Writing...at insanely random times/when my head feels like it's going to burst if I don't get some thoughts down. I also have several blog posts in the works, just waiting til my little 'ole heart is content enough to click that "publish" button! I've been taking a step back from a few forms of social media and removing that distraction has given me soooo much more time to focus on productive writing and where this hobby of mine is going. It's also given me a lot more time to READ-- books, posts on my favorite blogs, and even the cereal box as I enjoy my daily bowl of Frosted Flakes. #stilladdicted #notevenonPrednisone

Smiling about...to be completely honest, I'm sort of just doing my best to plaster on a smile each day whether it's fake or not. We're abiding by the whole "fake it til ya make it" dealio around here! At least for right now. ;) My blood pressure/sugars have been dropping ridiculously low and it's causing so many strange symptoms. I'm having some tests done Thursday and into next week so we can get a handle on what exactly is going on (this is a new issue since surgery). Until further notice, you'll likely find me looking something like this...



Reading...here's an update as of lately:

     - I finished up a memoir titled Two Kisses for Maddy about a week ago. I found it remarkably touching and really        enjoyed the honest, candid nature of the author. Essentially, his wife passes away the day after giving birth and he      shares his story of what it was like moving 'through' the grief, rather than moving 'on.'

     -I'm currently digging into/working through Night Falls Fast by Kay Redfield Jamison. It's a scientific type memoir       subtitled "Understanding Suicide." After losing an uncle to suicide this past winter and continuing to deal with my         own mental health struggles, it has been an informative, comforting read.

     -Just yesterday, I started ANOTHER book titled Writing as a Way of Healing. Let me just say-- ALL the praise               hands...on every page. I'm writing a book within the book all along the margins-- HA! Mainly jotting down reflective     thoughts! If you enjoy writing, get your hands on a copy pronto! And if you have any book recommendations, share     'em here! :)

Working on...travel plans for the remainder of the summer...and even into the fall! At the end of July, I'm headed to Arkansas for girls week with one of my best friends, Val. We both have rheumatoid arthritis and other similar conditions. We have been talking via e-mail, text, phone, etc. for over 4 years now but have never actually met. I cannot wait to squeeze her in person!

Praying about...the upcoming school year, social work internship/program acceptance, the service dog process that continues chugging along, friendships, and for our world. May we learn to acknowledge the tragedies happening around us by FEELING instead of BLAMING or seeking revenge. And may those feelings convict us to do what is right and good for the sake of peace and prosperity for all...amen?!

What are your currently's?

5.19.2016

Handicap Placards and Dirty Looks

It's unbelievable to think that I'm here typing this with virtually ZERO tummy pain, digestion issues, cramping, constipation, or Miralax anywhere in sight. My subtotal colectomy was nearly two whole months ago, I am out of the hospital, and mentally I am feeling like a million bucks. Unbelievable. All of it.

That's not to say recovery hasn't been a bear, however. I'm still dealing with some incision pain as the scar tissue settles in and figuring out new dietary restrictions (more on that to come in another post!) has been more difficult than expected. I really, really have to watch what I eat now in order not to irritate anything and while those changes are wholesome and GOOD, it's still been a challenge! One day at a time and continuing to adjust. :)

The thing I'm most excited about is how much more freedom I have now. I'm not scared to go out to dinner with friends or worried about running out in the middle of class, a meeting, etc. to go to the bathroom. I'm not curled up on the recliner at home with 6 trillion pillows surrounding me as I reach for another Percocet. This past Sunday, I spent the WHOLE day out with my best, best friend Amy. We got our nails done, shopped a bit, met her boyfriend and another friend for dinner, and even stayed up late watching movies together!

Overall, it was a phenomenal day filled with so much freedom. I mean that. But something has bothered me since then-- something that happened before we even got into the mall. As Amy and I pulled into the bustling parking lot, I eyed an open handicap spot right near the mall entrance. Since surgery, I have utilized my handicap placard about 95% of the time I'm out and about. Though I owe no one an explanation or need to write out a list of reasons why, I will do so to prove the point I'm hoping to get across in this post. Here goes:

  1.  Prior to surgery, I was taken off of both Methotrexate and Humira. Both of these medications treat my autoimmune arthritis and keep it at bay. I have not yet "restarted" those medications due to some insurance complications and nearly any level of activity is causing "mini-flares" right now, resulting in me reaching for pain pills and using ice packs 'round the clock. Parking in a handicap space during this time and saving those spoons/that energy is truly making a difference in my joint pain right now. On Sunday, I CERTAINLY utilized my right to park there because I knew I would be out and about all day with my friend Amy. 
  2. While it has been nearly two months since surgery, my incision pain still spikes (some days more than others). It is still difficult to get up from a sitting position (or from being seated in a car) and use those core muscles that are still healing. As the scar tissue settles underneath those incisions, it definitely contributes to the pain. All we can do is wait and let my body continue to heal and do what we can in the meantime to make things easier.
  3. Last Saturday night (the night before the incident I'm about to describe), I had to take 1000mg of PM Tylenol in order to fall into a light sleep. I woke up 8+ times that night from nerve pain, dystonia spasms, and restless legs. I was unable to really fall asleep until around 3am-- and ended up sleeping til around 11:30am Sunday afternoon. That is life with chronic illness and it never goes away. Fatigue is a nasty, nasty reality.

Here's the rest of the story: as Amy and I began to turn into the spot, a pregnant woman and what appeared to be her significant other looked at us, stopped walking, stood in the handicap space, and pointed down at the handicap symbol. (Note: my handicap placard was NOT hanging from my rearview mirror yet-- I store it in my middle console when it is not in use.) That's right. They both stood there, pointed to the symbol, and then had the audacity to wave me away.

We didn't need to exchange words with them for Amy and I to know what they were ensuing. We are two young girls and both of us look completely healthy on the outside...a perfect remedy for finger pointing judgement and dirty looks. Lovely.

I waved back at the couple (ensuing "kindly move out of the way, please"). The couple proceeded to shake their heads as they started walking towards their car a row over. Amy and I parked and I looked in my rearview mirror to see the couple standing outside their vehicle staring at me. I opened the door and took a few seconds to unbuckle myself, grasp the seat, swing my legs onto the asphalt, and push up while additionally holding onto the door so I would not fall. I gave myself a second after standing up and again glanced over at the couple...still standing outside their vehicle and STILL watching my every move. The man shook his head and wagged his finger at me. I processed the interaction and instinctively sat back down in the driver's seat of my car. I reached for the handicap placard I had hung on my rearview mirror, whipped it out the door, and waved it at the couple with a smirk on my face. I then hung it back up and proceeded to get out of my vehicle.


As I was walking into the mall with Amy at my side, I whispered "can you believe them?!" as a wave of guilt ran over me. I thought "Kenzie, you're not limping today. You didn't need that spot." I thought "Really? Your freaking surgery was nearly two months ago. You can park in a regular spot now." I thought "Those people are right to point and wave at you. You're not doing enough. You need to walk more each day anyway."

...and just as that third thought ran through my mind I stopped myself. I took the key to my mind/thoughts back and said to myself "those people are not you, those people don't know you, and those people's finger-waving judgement isn't about you." Because realistically? It's not. It's not at all.

I should not and will not allow these thoughts continue, because right now is about celebrating. It is about the fact that I got out of the house for. an. entire. day. FOR THE FIRST TIME SINCE MAJOR ABDOMINAL SURGERY! Not only am I recovering...I am fighting and I am doing that in the best way I know how. When I know better, I'll do better.

While I never, ever wanted to possess a handicap placard or the right to park in a handicap parking space, I also know that utilizing that part of my treatment plan right now has allowed me to do some pretty awesome things I might not otherwise have had a shot at. I don't need to defend what I know is my reality. At the end of each day, I know I'm doing the best I can, and some days that does means using a handicap placard to help me through. But never, ever, ever does that mean I'm not doing enough or am undeserving of respect.

I want to end this post by saying thank you to that couple. Yes, you read that right...THANK YOU. Thank you for reminding me that the opinions of people like you don't matter a single bit in the grand scheme of this battle-- a battle I'm winning one tiny victory at a time. Your judgement isn't about me. I am free from it and all that it entails. Yes indeed...I am.