12.31.2015

25 in 2015

I was a little bookworm growing up. I don't have any vivid memories of learning how to read. I only remember knowing how to as if reading were some autonomic ability; one that never comes or goes...just simply is.

I sped through The Little House on the Prairie and onto The Series of Unfortunate Events. The Boxcar Children, American Girl, and a pile of non-fiction books about horses cluttered my desk and filled my backpack. I read on the way to school. I read on the way home from school. I spent weekends sitting on the edge of my bed reading aloud to my very own imaginary classroom of students.

Sometime unbeknownst to me reading just sort of slipped away. It wasn't something I prioritized anymore or had to do in order to feel content. I was more interested in learning how to apply makeup, planning sleepovers, and babysitting for various families in our neighborhood. Before I knew it, I was 16 and licensed to drive with a new job at an assisted living home. Not much time had passed until I was throwing my graduation cap up in the air among my classmates, saying goodbye to the tiny town I grew up in, and moving to the Twin Cities.

When I got here, I didn't know who I was anymore. I questioned if I had ever really known. I distinctly remember staring at myself in the mirror on the back of my dorm room door just after my mom, younger sister, and little brother had helped me unpack and said goodbye...leaving me in a new, uncomfortable life that felt two sizes too big.

In this unfitted and newfound life of mine, I used reading as a getaway. When I couldn't sleep at night because my mind was whirring with questions, worries, and homesick thoughts, I pulled out my iPad and opened the trusty Kindle app. I would read a few pages or chapters at a time and in that short time be reminded that there were indeed worlds outside of my reality and words outside of the constant conversation going on in my head. When things felt turbulent and unpredictable, reading allowed a way to focus on something outside of my monotonous worries. It gave me a distraction and someplace else to go.

As I settled into my new home, routine, and circle of friends, my love for reading waned again. Distracted by homework, chronic pain, family matters, and plans for surgery just up ahead, I forgot about the books in my desk drawer and the potent discovery of my escape.

In March of 2015, I woke up one morning groggy and sore. I was still slowly and begrudgingly recovering from two major joint surgeries, but for some reason I felt excited to wake up. I grabbed my iPad from my desk and downloaded a few books I'd wanted to read for a long time. As they nestled their way into my Kindle app, I felt the need to start another one immediately.

I quickly walked to brunch, ate, and returned straight to my dorm room. I opened the blinds, cracked the window, and crawled back into bed. I started to read. I continued to read. Then, I read some more. I laid in bed all day swiping pages on my iPad screen and remembering what it felt like to escape.

Shortly thereafter, I found out about the Goodreads app and the Barnes and Noble in my area that had a huge selection of used books. (!!!) My short little "to read" list grew from one or two unfamiliar titles to a good hundred and counting. I knew there was a long way to go and it was utterly ridiculous to think that I could read hundreds of books in the little free time I had...but something told me to try. And try I did.


Soon the semester ended and I moved in with a couple and their two sons for the summer. We spent our days having water fights, raising ducks, licking melting popsicles, and biking to the park. On my days off, I read. One book. Two books. I distinctly remember the day I finished my sixth. Before I knew it, another season had passed and my total for the year had reached 18.

Being back to school and maintaining life as a student gave me a run for my money yet again, though. I could hardly complete my reading for class, much less choose a title off of my list for leisure. Even still, I tried. I prioritized the fleeting time as best I could and made sure my weekends consisted of blocks of time devoted to self care. And somewhere amongst all that, I read 25 in 2015.

As I completed my 25th and final book of this year, I paused for a moment and genuinely became teary eyed. Before I could even wonder "why the heck am I crying right now?!" my mind flashed back to each of the books that had passed through my hands in the last 365 days and how each of those books had refined bits and pieces of me I'd forgotten existed. Books filled with underlines, circles, stars, and notes in the margins. Books filled with words that resonated with me in a way that made me feel found. Books that sparked conversations. Books that had taught me and undoubtedly changed me.

I'm a long way from finishing my "to read" list, but I've found that even in that gaping space between now and not yet, it feels like I've found a little piece of myself again...and that feels good. So good.

"It was all unknown to me then, as I sat on that white bench on the day I finished my hike. Everything except the fact that I didn't have to know." -Cheryl Strayed, Wild

#WhatKenzRead: 

1.) As My Body Attacks Itself
2.) Brain on Fire
3.) A Long Walk to Water
4.) The Idea That is America
5.) An Unquiet Mind
6.) A Love Worth Giving 
7.) Gone Girl
8.) The Best Yes
9.) Eight Twenty Eight
10.) Scared
11.) Go Set a Watchman
12.) Grace Eventually
13.) The Sister Season
14.) Until I Say Goodbye
15.) Jesus Feminist 
16.) A Stolen Life
17.) Blindspot 
18.) Who Needs Theology
19.) Reflections from the North Country
20.) The Problem of Pain
21.) Prozac Nation
22.) Every Bitter Thing is Sweet
23.) Room
24.) The Bell Jar
25.) Wild


12.17.2015

I Almost Threw in the Towel

As of 2pm today, another semester is in the books. Projects presented. Papers turned in. Final exams complete. Donezo.

As I look back on the past 4 months, I find myself wishing I had taken a bit more time to document these memories here on the blog or at least journaled more about them. There is just something about written words that relaxes my anxious heart. It makes me feel like maybe time isn't fleeting after all.

Deep down, I know that it is. I know that living in the dorms with 5 of my best friends won't last forever. I know that the stress of finals week always feels like it's going to kill me...and then it's over and I realize I made it. I know that nannying won't always be considered my job and one day I'll probably have to give it up for good. I also know that it won't always be acceptable to shower once every three days. Pause. What do you mean that's not even acceptable right now?!

I've learned those things. I've learned those things and a whole lot more. A year ago today I was being wheeled into the operating room for my first of two joint surgeries. Through those surgeries and recovery alone, I primarily learned about endurance and how crucial patience is as part of the process.

This semester began with awful abdominal pain and unrelenting nausea/vomiting. I ended up taking a trip to the hospital and spending the first week of classes at home. A colonoscopy was ordered and came back unremarkable aside from inflammation at the very end of my small intestine. I continued to be thrown around between providers who did not understand the extent of my pain and symptoms. Night after night I cried myself to sleep and morning after morning I woke up in tears. It was as if the crying refused to cease -- just as the pain would not cease, either.

Finally, two weeks ago, some answers found their way to me and my team of doctors. After a second opinion, an endoscopy was ordered which revealed a rather large (and bleeding) stomach ulcer. The days following the procedure were mayhem. I was sick from anesthesia, my pain was out of control, and we had to reevaluate my med list to eliminate any and all NSAIDs. I began taking two new medications to treat the ulcer and stuck to a strict diet of bland foods. So much had changed, but the vomiting still persisted and the pain still remained. I spent hours in bed when I should have been writing papers or completing projects. I felt defeated and so badly wanted to throw in the towel and give up on this semester. It was all looking so bleak and dreary.


As I was cleaning out my backpack that day, a crinkled piece of paper fell to the floor. I unfolded it and a smile came across my face as I read the lightly written words...
Lord, may I learn to love You with my mind and through my studies. May I not only seek You when time most perfectly allows or when it is most convenient -- but may I do so in the wake of adversity and in the face of challenge. May I not fear things that push me past my comfort zone. May I not be tempted to take the easy way out. May You calm my anxious spirit as these thoughts run rampant.
Heavenly Father, use my time in higher education -- especially my time here at Bethel -- to honor You and grow in more expansive ways. Reveal Yourself in new and unexpected situations and continue to keep me in the grasp of Your perfect and Heavenly peace.
Amen.
The paper was dated October 22, 2015. I distinctly remember writing out the above prayer one day in class after becoming so frustrated at still being behind on homework after being gone for so much of September. I remember wanting to throw in the towel that day.

I remember wanting to throw in the towel when I was a freshman in high school -- undiagnosed and struggling with my mental health. I remember wanting to throw in the towel as my home nurse taught me how to give myself a weekly injection of Enbrel (a drug to treat autoimmune arthritis and psoriasis). I remember wanting to throw in the towel when I had a kidney infection and spent a week rotating between the hospital and my bed. I remember wanting to throw in the towel after a nurse called me with MRI results and mentioned the words "mass" and "cancerous" last November. I remember wanting to throw in the towel as I began chemotherapy and immunotherapy this past year.

I remember so many times that I desperately, desperately, desperately wanted to throw in the towel...and I also remember that every single time something gave me just enough strength to refrain from doing so.

So instead of chucking the towel as far as I could for once and for all, I readjusted my expectations for this semester, had a long conversation with one of my best friends, and opened up to my professors. I started going to bed earlier and taking a break from homework/studying occasionally to read for fun. I spent some time alone. I took a break from social media. I wrote a bunch of awesome people some good old fashioned snail mail. I prioritized my commitments for next semester. I kept going.

And you know where that led me? Right here. To today. Today when I can say shout "I DID IT!" at the top of my lungs and rest in the truth that this semester panned out just as God had planned it would turn out all along.

To me, it just felt like more pain. More stress, more anxiety, more fear. But with Him, it became an opportunity for more growth. More endurance, more strength, more dependence on Him...and I am oh so grateful for and comforted by the fact that He has allowed me a tiny glimpse of that Heavenly perspective. 

10.28.2015

The MedX Experience

Back in December of 2014, I wrote a post sharing that I would be traveling to Stanford University in California as an ePatient scholar + advocate in September of this year. I titled that work "Embrace What's Difficult" and was preparing to undergo hip and ankle surgery at that time. While writing that post, I experienced a broad range of emotions. I was excited, nervous, and flattered. Mostly, though, it just felt so incredibly surreal. 

I spent many nights lying awake in bed wondering how on earth I got connected to an online patient community that has changed my life in such a radical way. I wondered how on earth it was possible to have formed such deep, lasting, and God-honoring friendships with individuals online -- many of whom I have never, ever met in real life! I wondered a lot, but no amount of wondering in the world could have prepared me for the MedX experience.

I flew out WAY too early in the morning on Wednesday, September 23rd. Two of my dearly supportive roommates woke up and drove me to the airport (I know, I live with SAINTS). I had the nervous jitters and it meant so much to me that they wanted to be the ones to send me off. I love them something big.

I had a layover in Chicago before flying to San Francisco. I prayed for my pain levels to be manageable during travel despite how awful I'd been feeling the past week, but my body chose the latter. I ended up lugging my carry on + purse through the airport with my right shoulder in a sling. Thankfully, each of the airport workers I encountered were incredibly helpful. Other passengers even offered to put my bags into the overhead bins! 

There was a wheelchair waiting for me in Chicago + San Francisco and the flight attendants were helpful for the most part. It was a positive experience "getting there" for sure. :) During my layover, I even started rereading one of my favorite books by Kay Redfield Jamison with a latte in hand. Bliss, I tell you. Pure bliss after adjusting back to the grind of college and needing a serious break with some leisurely reading.


Kirsten picked me up from the airport when I got in. We had officially met at another health conference in May and it was fantastic to see her again as we've been long time internet pals! We had a lot more time to talk with one another and share biofreeze than we did the last time. :) I really don't have words to express how wonderful Kirsten is and how much of a warrior she proves to be DAILY. Her honesty and willingness to be vulnerable about all aspects of her story has changed the healthcare community -- I am sure of it.

I met my hilarious roommate Danielle later that night after I worked on homework for a bit and ordered pizza (all while collapsed on my bed, mind you). I knew Thursday would be a busy day and I had been up and active enough all day to use up every last spoon and then a few more. Flaring and flying...do not try this at home, kids!

On Thursday, we headed over to Stanford's campus to get to work! I took part in a workshop on behavior change which focused on connecting patients and providers. I got to share quite a few of the ideas I've formed based on personal experience. The most amazing part? I got to connect with healthcare professionals who acknowledged them. It was a long day and by the end of it, my body had exhausted every ounce of energy...but pushing through was absolutely worth it.  

Below is the most empowering photo I have ever seen of myself. And, of course, California in all of its beauty (!!!). Complete with a selfie with Kirsten...we were stoked about our registration packets and name tags!


Thursday night was the opening ePatient dinner. I got to meet Leslie in person after following her online for many years. Kirsten and I got to bond more and I also got to meet fellow Minnesotan Britta as well as some other new friends! Ally, too, was a pleasure to meet in person and I couldn't wait to have my dear Britt introduce me to Marvin whom I've had a huge friend crush on since like...ever.

Truth be told: I was too chicken to introduce myself that night, but had Britt introduce us Friday morning. ;) It was at this point that I began to kick myself repeatedly because we could've had approximately 12 more hours together in person had I just gotten the courage to, you know, TALK TO HIM. Marvin is a fellow cervical dystonia warrior and he is a complete gem. We spent majority of the remaining conference together and had some incredible conversations. It's friendships like these that remind me how absolutely wonderful it is to have found a community that truly "gets it."

I also got to meet Liz for the first time. Oh. My. Goodness. This girl is my HERO. She had brain surgery just days before flying out to SFO for MedX and she had nothing but positivity to offer everyone there. Incredible. Absolutely incredible.


The patient talks on Friday were absolutely fantastic. I was moved to tears, empowered in a whole new way, and encouraged to share my story in numerous ways. This year, it may have been through live-tweeting...but I am praying that next year, it will be through an Ignite talk of my own.

On Friday night, I had the opportunity to grab dinner with a long time friend from Instagram. Gayle and I are kindred spirits and she has blessed me immeasurably with her friendship and thoughtfulness. There were no awkward silences -- no lulls in the conversation -- it was like we'd known each other for years (well, we sort of have)! I am convinced that we could have sat there all night chatting if it weren't for the fact that we both share the same disease and an incredibly limited amount of energy due to said disease. ;)


Saturday was a BIG day. Danielle, Kirsten, and I got the opportunity to talk a little bit about how the online health community has empowered us and given us the strength to share our own stories. It was wonderful to hear from two advocates that I look up to so much. These women and their compassion = absolutely REMARKABLE. I am honored to call them friends. 


As I said, Friday was big! We got our professional headshots taken, there was a sunset get together of sorts on the lawn following sessions, and I got to meet my long lost #EndoSister Abby. I was diagnosed with endometriosis in August and have struggled to find other women who understand the pain. Abby vivaciously faces hers with a wicked sense of humor and reminded me why sticking around is always, always worth it. Answers come if you fight for them -- and while that is such a negative aspect in our healthcare system today, it is also an incredibly empowering one. MedX reminded me that we have the ability to change things.

Friday night, Cat came to visit Britt and I at our hotel. I've chatted with Cat on Twitter for years -- we've compared symptoms, griped about chronic pain, and supported one another through multiple procedures. It was LOVELY to finally put an actual voice to her words and sweet demeanor. We chatted biologics for a good, long while and thoroughly enjoyed each other's company.


It's likely no surprise that this girl gets her own collage of photos within this post. My MedX experience (and life experience in general) would simply not be the same without her. Britt has played an absolutely essential and instrumental role in my life. We "met" on Twitter 5ish years ago...at which time I was undiagnosed and dealing with extreme clinical depression. Through the online community, we became close friends and eventually began texting. We met at the juvenile arthritis conference 2 summers ago and have gotten to reunite at a few other health-related conferences since. I've adopted her as my big rheum sis and she's adopted me as her little. :) The craziest part is that people get us confused for one another from time to time...we're not actually sisters, but we might as well be!

Britt shared her #ChronicLife experiment in a breakout workshop and empowered patients with her words in a meaningful and timeless way as she always does. Her talk left me in a puddle of tears and I was reminded, yet again, just how much this community means to me.


Before we knew it, Sunday rolled around. Final breakout sessions began, I started figuring out just how I was going to get back to the airport, and the emotional goodbyes began. Matt and I had a priceless and incredibly memorable conversation about faith and how we're hoping to integrate our own experience(s) as patients into our careers one day. Marvin and I took another good round of selfies, gave one another 17 billion hugs, and teared up one too many times.

And just like that...I found myself waving goodbye to Stanford's beautiful campus and each new and wonderful connection I made during my time there. I was filled to the brim with creative energy, excitement, and empowerment, but my physical body needed R.E.S.T. I had been "pushing through" all week and using my narcotic pain medication(s) almost daily. Was it worth it? Yes. Absolutely. Did it hurt like hell? You betcha. Is it possible to constantly live that way with chronic illness? Not a chance.

Unfortunately, I had an awful experience traveling home. The San Francisco airport denied me a wheelchair on multiple occasions and several airport employees deemed it appropriate to belittle my "so-called disabled state." Because my leggings were covering up my swollen knees, my jacket hung over my aching shoulders, and the swelling of my spine was not visible,  I was deemed "healthy" and my disability was questioned when I asked for help. By the time I boarded my flight (with just minutes to spare until take off) I busted into tears and took the maximum dose of my pain medication. I slept most of the way home, but was entirely miserable. I really don't want to travel again for a long, long time. 

*** The San Francisco airport ended up directing me to the report center and assisted me in getting my experience/concerns heard. The situation has since been addressed accordingly.


And there it is. MedX in pictures. MedX in jumbled words. There is so much I want to say...so many people I want to hug...but because I can't tangibly do all of those things from where I sit typing this post in St. Paul, MN...I will try my best to keep it short and simple by saying: THANK YOU. To all who have shared this journey with me. To all who have made me feel at home a thousand miles away. To all who "get it." To all who don't "get it" but desperately want to. THANK YOU. Thank you for encouraging me to continue on in my personal fight.


Even what the enemy means for evil, God can use for our good and His glory. There is not a single doubt in my mind that God has ordained the experiences and connections I've had and formed up to this point because of my chronic diagnoses. These diagnoses have blessed me much, much more than they have cursed and that is absolutely because of the people surrounding me.

Thank you, MedX. You were absolutely sensational.


8.10.2015

The Expert of Your Own Experience

Back in May, after spending 2 days in Milwaukee for the 8th annual Arthritis Introspective Conference, I returned home in an immense amount of pain/swelling. After getting just 2 hours of sleep due to pain that night, I got up the next morning and immediately called the on-call rheumatologist at the clinic I had been seen at since November of last year.

From the beginning of our conversation, the physician I was speaking to was belittling, condescending, and rude to me. As I described my symptoms and pain level, he said things such as: "oh, well that's interesting," "I don't know what to tell you," and "there's nothing I can do for you." My personal favorite was: "I'm looking at your chart and there appears to be some confusion about your diagnosis. You're just going to have to wait until you can be seen at Mayo Clinic in July."

After a short diagnosis debate, I shared that I had taken 4 Tramadol in the past 24 hours to no avail. To that, he said,  "I guess I can get you some high dose, short term Prednisone." As he was finally writing the prescription, I asked him to send it to the pharmacy nearest to the place I'm living for the summer versus the one I had entered in the system approximately 30 minutes away (in the town where the clinic is located). His response? "You live in St. Paul, why can't you drive 30 minutes to pick this prescription up?" 

A million questions raced through my mind.

  • Did this physician listen to me when I told him I had been bedridden the past 3 days due to pain?
  • Does this physician realize how much LIFE has been taken away from me because of said pain?
  • Does this physician understand that driving 30 minutes is absolutely out of the question because of the extreme symptoms I am experiencing? 
  • Does this physician recognize that July is TWO months away?

I told him I would take care of transferring the prescription myself and ended the phone call by asking him one simple question: "Doctor, do you suffer from any kind of chronic pain?" He responded, "No, I don't." And with that, I left him with one word: "Exactly." 

About two weeks later, I made another call to the clinic to speak with my (now ex-) rheumatologist. I had been bedridden for another 3 days due to a low grade fever, severe pain/swelling, and awful fatigue. I called to get her suggestions and something get me through until I could see a new rheumatologist in the area + make it to Mayo after months of waiting. After a few hours of waiting for a return phone call, I got her nurse on the line. The nurse said these exact words before proceeding to tell me to have a nice day: "Dr. ******* says she can't do anything to help you."

Now, perhaps this little stunt wouldn't have upset me so much had I not been experiencing level 8 pain or had I not already endured countless rude interactions and useless phone calls with other doctors in that clinic...but this really set me off and aided in reaching a whole new level of hopelessness. Things were looking bleak. These are issues within our healthcare system that need to be addressed.



The most aggravating part of this entire situation is clicking onto the clinic's website and reading their mission statement which states that their number one goal is: "...to provide the highest quality consultative and comprehensive rheumatologic care to patients..."

I'm not Merriam Webster, but I can tell you that those words and the care I've received are not 
synonymous. Let's break them down a bit:
Consultative (adj.): giving advice; having suggestion(s); possessing the power to give advice, but not to make decisions. 
Comprehensive (adj.): including many factors; covering completely or broadly.

None of the phone calls I received in response to multiple cries for help could be described at consultative or comprehensive. This is NOT patient-centered care and it is certainly not care that I will be subjecting myself to any longer. 

My decision to leave this particular clinic (though it was process in itself to find someone new) was my best decision yet. In mid-July, I saw a new rheumatologist in my area who took my entire chart into consideration and further searched for answers even when they were not black and white. In fact, she searched for them ESPECIALLY because they were not black and white. She also caught new signs of joint inflammation and degeneration and started me on a rigorous treatment plan. I went to Mayo Clinic a week later and received similar care and concern.

It's now been about a month since I saw my new rheumatologist. I am slowly adjusting to new medications, therapy sessions, and a more elaborate daily schedule. I am doing well because someone decided to listen. I am preparing to move back on campus in two weeks and because of this new treatment plan, I will likely be able to thrive. At the very least, long days spent bedridden and writhing in pain will not be the "norm." Should I experience a flare like that again (odds are I will at some point -- that's just autoimmune disease), I know that I have a physician who will make it her mission to help me get it under control as soon as possible.

All that to say, I did not write this post to slam the clinic I was formerly seen at (though I would not recommend them to anyone). I wrote this post as a reminder to advocate even if it involves tears, your voice shaking, and having to lay down the law with doctors who think they are superior and all knowing. You are ALWAYS the expert of your own experience(s)...especially when it comes to suffering from chronic pain/illness. You are the one who has to keep holding on when the pain is unrelenting and excruciating. Don't forget that...and please don't forget to use your voice.

8.05.2015

Things I'm Obsessed With (Including This Skirt)



WHAT I'M WEARING :: Necklace // Molly Suzanne :: Top // Old Navy :: Skirt // Copper Peacock Boutique :: Watch // Kohl's :: Flats // Target

I've been eyeing up this midi-skirt business for months. What I mean by that is I've been compulsively pinning outfits that incorporate them and trying them on every time I run across one in the department store(s) I frequent. To cut to the chase, I never could quite get myself to pull the trigger for $35-$50. I'm working on paying student loans this summer and to be real, I'm the type of girl who would rather spend the remainder of her nanny paychecks on books anyway. Needless to say, when my friend Ashley clearanced these skirts in her shop, I was the first in line to snatch one up. $10 -- yes, please!

I wore it last week and absolutely fell in love. The material is stretchy, comfortable, and breathable. It's the perfect skirt for summer, but will still be very versatile come fall! I'm going to try pairing it with a few fitted tops I have next. I'm not the biggest fan of the frumpiness this olive one seemed to add, (didn't even notice that til I looked at these photos...maybe I'm being too critical of myself) but overall this was a comfortable outfit and I'd wear it again!

Aside from compulsively pinning outfits on Pinterest, I'm also obsessed with reading right now. There is so little time left until school starts and homework makes zero time for "reading for fun!" I'm currently engrossed in Jaycee Dugard's memoir titled "A Stolen Life" which focuses on the horrifying story of her kidnapping and time in captivity. The resilience that shines through in her writing is incredible. I'm also re-reading the sequel to "If I Stay" because I made the mistake of watching the movie yesterday and now I need closure all over again. Man, I get attached to fictional characters way too easily. I just finished the new Harper Lee Novel "Go Set A Watchman" last weekend and was pleasantly surprised at how much I enjoyed it. :)

I'm also currently obsessed with oatmeal, applesauce, how light my hair looks in these photos, and meeting my Fitbit step goal. At least two of those things don't involve eating...am I right? Thanks a lot, Prednisone. As always, I'm also obsessed with browsing Amazon for sweet deals. My most recent purchases include this statement necklace and this laptop decal. Lucky for you, my friend Kate organized this great giveaway last week and there's still some time to enter! I thought I'd share it here today so you don't miss out -- especially if you have an Amazon obsession like I do!


 
Anyhow, even though it's been a hot minute since I've linked up an outfit post, I'm excited to click around today and play under-qualified fashion blogger. ;)

What are you obsessed with right now?




7.29.2015

11 Times Friends Nailed What It's Like to Live With Chronic Illness

I used to be quite the runner. 3 miles one day, 6 miles the next. Even after diagnosis, running helped me clear my mind and maintain a strong body. Then I came off of my biologic due to infection(s). After doing so, I adjusted to new life as a college student, underwent hip/ankle surgery, and entered the recovery period. Between schoolwork, nannying, and maintaining a social life...running got put on the back burner.

That being said, I had big plans for this summer regarding running. I mean HUGE. Without schoolwork to worry about and my best friends scattered all across the country, I wanted to start training for the half marathon I've always wanted to run. I wanted to feel good in my skin again. Then the summer actually arrived. So far, it has been filled with mysterious new symptoms and unrelenting pain. In other words...not running. Sigh. 

I did start Methotrexate injections last Friday and am looking forward to seeing how/if they help me! The injection itself did not burn whatsoever which was pleasantly surprising! Following that injection, my rheumatologist's PA decided to go ahead and give me cortisone injections in both shoulders. I was stiff and sore for most of the weekend but things are feeling pretty good now...again, pleasantly surprising!

Anyway, while I may not be in any place to get my running goals underway + accomplished, I can certainly do other things...like walk on the treadmill in my room and binge watch Friends. ;) Not all is lost!

Today, in honor of nearly wrapping up the 10th and final season (thanks, Netflix), I present to you "11 Times Friends Nailed What It's Like to Live With Chronic Illness."

1.) When someone asks how you're doing and you don't have time/it's not the place to go into actual detail...




2.) When someone says (for the 6 billionth time) "get well soon!" or asks, "so, when are you going to be...erm...like...better?"


3.) When brain fog messes with your memory and you realize you've forgotten to do something (it's usually of great importance)...


4.) When you go in for a routine check up and walk out with a new diagnosis...



5.) When you FINALLY give into those Prednisone cravings...


6.) How Prednisone makes you feel after giving into said cravings... #wired #fat


7.) When you first wake up and think it's going to be a good day, but the second your feet hit the floor your body says otherwise...


8.) When you're trying to function normally in society but it's not working because NOT. ENOUGH. SPOONS...


9.) When you accidentally spend more spoons than you had in the first place and your body begins reacting adversely...


10.) When the Methotrexate, Enbrel, Humira, Orencia, etc. hangover gives you the ability to fall asleep absolutely ANYWHERE the day following...



11.) How you feel after a high pain day + full day of work, school, etc. surrounded by people who don't "get it..."


Because otherwise...


Maybe all we need to navigate this crazy chronic life is a good sense of humor and Friends (the show + real ones, of course)! Or maybe that's the pain meds talking...either way, I hope this post brings a smile to your face and reminds you that someone gets it! Happy Wednesday. :)


7.27.2015

Sunday Content

Yesterday was Sunday...my favorite day of the week every week. I don't know if it's the focus on rest and recuperation or if it's the gentle productivity in preparation for the week ahead, but there's just something about a Sunday that makes me feel content.

I spent most of yesterday fiddling around with this little blog layout and updating the about me page. (HUGE thanks to Ashley for another perfect revamp and design...she's amazing!) I was forcing myself to walk on the treadmill while doing so because otherwise I would've just laid in bed doing the same thing...and that's not how Fitbit step goals get reached! ;)

Anyhow, some time between the fiddling and the walking and the blaring of the Dixie Chicks Pandora station, I got all nostalgic in a real Sunday content sort of way. Before I knew it, I was flipping through old photos and grinning ear to ear as I remembered the stories those photos told.

I came across one of my older sister and I eating Snack Pack Pudding cups and sipping on Hi-C juice boxes on the front sidewalk of our old home. A Sunday tradition. Our little blonde heads are ratted messes and our clothes are a special kind of mismatched mayhem. There's a tree in the background that I don't remember ever being that small.


We're tiny and innocent; sitting cross legged on the same pavement that skinned up our knees a time or two. Our dolls and strollers likely aren't far off and the lawn appears to be freshly mowed...something our dad always fearlessly tended to in the good 'ole humidity of a Minnesota summer afternoon. I'd be willing to bet that our mom was the one snapping the picture. It's possible she had just come from the garden with a bucket heaping full of fresh onions, radishes, and green beans. Maybe even a few cobs of corn and a zucchini to fry. The makings of a delicious summer meal.

And there we were...Megan and I...amidst it all...content as can be. Pudding cups, juice boxes, and all.

Perhaps seeing us there...perhaps that stopped our parents for a minute or two. It clearly stopped one of them long enough to wind up the old camera and capture such a simple memory. Perhaps amidst all the things they were working on and rushing to finish up they caught a glimpse of where the most mundane simplicity and the deepest sense of joy meets.

Maybe they saw it in their giggling daughters on the hot pavement with a special Sunday snack. Maybe they saw it in eachother as they worked tirelessly to maintain the home they owned together. Maybe they didn't see it at all...but I do.

I love the memory and mood this photo encapsulates. I love that it reminds me of all the other memories we created in that front yard. From plowing paths through the woods just behind us to pushing our little sister down the hill in the bike cart to teaching our little brother how to ride his two-wheeler in the snow. I love it all and I'm thankful that one of my parents captured it because through doing so they taught me.

They taught me that there is always time to slow down and soak in the Sunday content. Of course, as we grow up, that "soaking in" starts to look a bit differently than this photo of my older sister and I...but it doesn't make it any less important. It might be making a phone call to an old friend or taking the time to journal. Maybe it's flipping through old photos and tearing up at how fast life goes and changes and then goes and changes, again. Whatever it may be, let's not allow these moments...these Sunday's...to slip away without a moment of content.


7.20.2015

Here's to Adventures...Even the Scary Ones

A year ago today I was in the midst of embarking on an adventure to Swaziland, Africa. I was a bit nervous and hurting, but I also found myself feeling confident and hopeful. I knew that God would use the trip to grow my faith and grant me some answers about my purpose in this big 'ole world. I knew that He would stretch me and change me and use me. In fact, He did those things and He did even MORE. 

He brought my special friend Nontsikelelo into my life for girl chats and giggles which have now turned into written letters and hand drawn pictures. He sent me sweet little Sisekelo for long naps/snuggles when my body needed to rest. He used my time in Swaziland to break my heart in new ways and call me to places I never thought I'd go. I know that I will return very soon and I cannot wait to experience the sheer joy of that day. Holding onto that dream alone has kept me going through all of the health trials this past year has brought me.


Today, I am embarking on another adventure...this time to spend some time at Mayo Clinic with my momma by my side. Again, I find myself a bit nervous and hurting, but still confident and hopeful that God will use this trip, too, to grow my faith and grant me some answers...this time regarding my ongoing health struggles and the debilitating pain I have been experiencing. Though it was a frustrating and exhausting process to get into the rheumatology clinic here, I can already say with certainty that it was 100% worth it. 

I am willing to do absolutely anything at this point to receive answers and experience relief. With that sort of desperation, I can only pray that the doctors I see today and in the days to come will use wisdom and their best judgement to care for me in my current condition. I can only pray that this long awaited visit will give me the bravery, assurance, and motivation needed to move us forward in terms of treatment that will help me get parts of my life back. Parts of my life that this pain has robbed from me.

photos c/o JL Stephens Couture

Endurance is a difficult skill to acquire, but I have seen God work through my pain DAILY and witnessing that has taught me much about what it means to be fully content in the midst of challenging circumstances. Those lessons are ones that I would not trade for the world. 

Today, I am not bitter...but I am prepared. I am not spiteful...but I will continue to fight. Living with chronic pain for 5+ years has been a balancing act of sorts. There is a fine, fine line between being angry enough at this disease to fight against it and do what it takes to keep it controlled while focusing on who I am aside from my health struggles and the pain I experience at the same time. I hope with my whole heart that my time here at Mayo helps me to balance those things just so.

photos c/o JL Stephens Couture

There is not always laughter and gratitude, rainbows and butterflies...but I am okay.  I am resilient. I am fighting. I am slowly but surely creating my new normal, grieving the loss of what my life and body once were, and finding ways to be me in a new light.

photos c/o JL Stephens Couture

Come what may, I am here. Living, breathing. Writing hard things. Chasing after littles who fill my heart to the brim. Enjoying community and vulnerability. Fighting.

To those encouraging and praying along with me for this weeks appointments and my time at Mayo Clinic: THANK YOU. Your support is a gift just as each day of this crazy life is. I will never, ever be able to express my gratitude fully. 

Here's to adventures -- even the scary ones -- and all the life that lies ahead. 

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7.14.2015

My Maddie

Today is July 14th. Though I have never recognized the significance of this date before, today I will acknowledge it greatly. I will reflect, I will thank God plentifully, and I will celebrate.

19 years ago today, my freshman roommate and beautiful friend Maddie was born.


There are 9 months and 25 days between Maddie's date of birth and mine. Let's lay out the facts and figures here: at 9 months and 25 days old, there is not a chance I had a clue that Maddie was being born thousands of miles away. Even further, there is not a chance I had a clue that I would meet her, experience the joy (+ insanity) of living with her, and watch her play such a crucial role in my faith journey and life as a whole. I had not a clue that I would grow up, surrender my life to Jesus, and choose to attend a Christian University. I had not a clue what my freshman year of college would consist of. Let's be real, I was clueLESS, unaware, and likely unconcerned with anything that did not involve eating, sleeping, or pooping. #babylife

Nonetheless and even still, here we are 19 years later...and I cannot stop praising God for all the "in-betweens" that led me to the here and now. I am filled with a heightened awareness and immeasurable gratitude for this one...this Maddie...my Maddie.


When I selected my dorm room through a "random" room draw last summer, I (again) had not a clue what was in store. Little did I know that in the months to come, I would experience some of the best and worst days of my life with Maddie by my side. The love, concern, compassion, comfort, and deep appreciation she has shown for getting to know me and my heart the past year has completely blown me away. 

In the short time she has been apart of my life, there have been many laughs and many tears. There has been stillness and anything but. There have been times of many words and times of silence. No matter what the circumstance was, the test revealed, or the day consisted of...Maddie was there to simply be in the midst of it with me. Looking back, I realize there never really was a "random" room draw. There was no "cluelessness" or "coincidence," there was only God perfectly carrying out His marvelous plans and proving His faithfulness to me yet again by blessing me with this dear soul and kindred spirit. He knows what we need, and my goodness, He PROVIDES.


She has taught me how to let others in. She has taught me how to think well and deeply. She has taught me how to stay up until the wee hours of the morning and still look flawless upon waking the following day. Nope, just wait...I'm still working on that one. She's got it mastered, though. ;)

Her humor is the kind that makes anyone and everyone laugh. She's not just sarcastic, she's not just filled with contagious laughter, and she's not just a creative story teller...she's all of those things and she is more. She is a writer and musician. She is kind. She is thoughtful, sensitive, and compassionate. She is witty and smart, oh, she is smart. She is wise and she has a captivating presence. Above all...she is a sister in Christ. No matter what the passing years may bring, the most beautiful thing about our friendship is knowing without a shadow of a doubt that we will be together in Heaven one day.

Last night as we were texting back and forth, you said: "there is nothing special about 19!" If only you could see what I see, my friend, because I beg to differ. Celebrating who you have become and have been to others this past year is a privilege and true JOY. I have said it once and I will say it again: thank you, Maddie, for being the answer to many of my anxious prayers and for being the beautiful woman that God has called you to be. Thank you for growing and struggling and being honest about the process. Thank you for listening, sharing, and teaching. The Lord has MUCH for you this coming year...of that I am sure! May it be one filled with hilariousness, executive decisions, and life-giving work that reminds you of the purpose you were created for. I am beyond grateful for each adventure we've shared and I look forward to all of the adventures that are to come.

Happy birthday, dear one. I love you so.

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6.19.2015

Doing More of What Summer is For

In April, I realized that I hadn't read a book for fun in far, far too long. That night, I picked up my iPad, downloaded some new reads to my Kindle app, and got back to doing something I love dearly. 

Not long after, I found out about the goodness that is Goodreads. And now? Well, let's just say the inner bookworm in me is still alive and very, very well! My goal is to read 25 books this summer -- so far, I have 10 down! I call it doing more of what summer is for. :) A few people have asked about #kenzssummerofbooks on Instagram, so I thought I'd do a post sharing a few of the ones I've read lately + a few that are anxiously awaiting their turn on my bookshelf!

Thanks to CARE.org for sponsoring today’s post and raising awareness about Child Grooms in Nepal!
1.) Little Princes // STATUS - up next

Description according to Goodreads: "In search of adventure, twenty-nine-year-old Conor Grennan traded his day job for a year-long trip around the globe, a journey that began with a three-month stint volunteering at the Little Princes Children's Home, an orphanage in war-torn Nepal.  'Little Princes' is a true story of families and children, and what one person is capable of when faced with seemingly insurmountable odds. At turns tragic, joyful, and hilarious, 'Little Princes' is a testament to the power of faith and the ability of love to carry us beyond our wildest expectations." 

My two cents/expectations: Based on the description, I can pretty much guarantee that this is going to be an amazing read. Nepal is one of 8 countries in the world where more than 10% of boys are married before the age of 18. Nearly 39,000 girls become child brides each day. If trends continue, 142 million children will be married by the year 2020. As painful as these stories are, there is hope. Former child grooms are now using their voices to end child marriage...and we can help many more do the same through CARE.org and raising awareness about this tragedy.

2.) A Love Worth Giving // STATUS - read

Description according to Goodreads: "Finding it hard to love? Someone in your world is hard to forgive? Is patience an endangered species? Kindness a forgotten virtue? If so, you may have forgotten a step -- an essential first step. Living loved. God loves you. Personally. Powerfully. Passionately. Others have promised and failed. But God has promised and succeeded. He loves you with an unfailing love. And his love -- if you let it -- can fill you and leave you with a love worth giving."

My two cents/expectations: My favorite genres to read include memoir and Christian self-help. I have struggled a lot with forgiveness this past year and remembered I picked up this book back when I worked at Barnes and Noble and got an awesome discount. ;) I never had time to dig into it, so I knew it was the first one I wanted to check of my reading list this summer. It may sound cliche, but this book changed me and I know I will return to it for future reference. I highlighted the goodness out of it -- so much good stuff on every page!

3.) Jesus Feminist // STATUS - unread

Description according to Goodreads: "Gender roles have been debated for centuries, and now Sarah Bessey offers a clarion freedom call for all who want to realize their giftedness and potential in the kingdom of God. Through a thoughtful review of biblical teaching and church practices, Bessey shares how following Jesus made a feminist out of her."

My two cents/expectations: I'm intrigued by this selection and can't wait to dig into it. I have friends who have read it and recommend it over and over and over again. I've paged through it a bit and read bits and pieces -- I like Bessey's writing style and think this will be an enlightening read to say the least. Update to come!

4.) Constructive Wallowing // STATUS - unread

Description according to Goodreads: “Constructive wallowing” seems like an oxymoron. Constructive is a good thing, but wallowing is bad. Right? It’s tempting to turn away from menacing, uncomfortable feelings like anger, grief, or regret; however, ignoring them just seems to make them stick around. By learning to accept and embrace difficult feelings, readers keep their sense of personal power and gain greater understanding and ultimately esteem for themselves."

My two cents/expectations: I found this one on the bargain shelf at Barnes and Noble the other day and could not pass it up. I think it's going to be a pretty dense and informational read (something I love, but have to take slowly), so I wanted to wait to start this one until I'm finished with Boundaries...another dense read! Though I haven't read it yet, it appears to be a book that absolutely everyone would benefit from reading.

5.) Scared // STATUS - read

Description according to Goodreads: "Stuart is given a one last chance to redeem his career: A make-or-break assignment covering the AIDS crisis in a small African country. It is here that Stuart meets Adanna, a young orphan fighting for survival in a community ravaged by tragedy and disease. But in the face of overwhelming odds, Adanna finds hope in a special dream, where she is visited by an illuminated man and given a precious gift. Now, in a dark place that's a world away from home, Stuart will confront the harsh reality of a suffering people in a forgotten land. And as a chance encounter becomes divine providence, two very different people will find their lives forever changed."

My two cents/expectations: This one is a work of fiction, but the experiences the author describes and the characters he develops are all too real in the tiny country of Swaziland today. The heart wrenching and compelling stories of the characters the author develops brought me right back to that tiny African country where I spent just about 3 weeks last summer. The circumstances Davis describes in this novel are ones that are eerily existent and equally horrifying in Swaziland today. Davis has accomplished much through his writing and his organization, Children's Hopechest, and I am honored to be apart of their sponsorship program.

6.) Boundaries // STATUS - currently reading

Description according to Goodreads: "Having clear boundaries is essential to a healthy, balanced lifestyle. A boundary is a personal property line that marks those things for which we are responsible. In other words, boundaries define who we are and who we are not. These boundaries impact all areas of our lives. Often, Christians focus so much on being loving and unselfish that they forget their own limits and limitations."

My two cents/expectations: I really don't have words to describe this book adequately. I'm only about halfway through it and just about every word on every single page is underlined, circled, highlighted, or copied down on a post-it note hanging on my bulletin board. I have gained a better understanding of what exactly boundaries are and how the inability to set limits in any relationship is a recipe for destruction. This book has challenged me and changed the way I look at every relationship in my life.

What are you reading this summer? Let's be friends on Goodreads!

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