Showing posts with label autoimmune arthritis. Show all posts
Showing posts with label autoimmune arthritis. Show all posts


I Don't Want To Be (Physically) Healed

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

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

I was wrong.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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.


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

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

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

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

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


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. :)


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


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

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

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

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

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

Check out Joint Decisions on  and !


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.


GI Hip-Hop-Happenins

Back in August, some strange GI symptoms (severe cramping, constipation, abdominal pain, black colored stool, and excess bleeding) began to alter my daily routine(s). I wasn't on many prescription medications at the time and was taking a high dose of magnesium to help with nerve pain...yet somehow, these issues were still pummeling me. They came on slowly and then seemed to show up all at once.

In late August I started prepping for a colonoscopy (that we had hoped would get to the bottom of some of these things) and I also moved back onto campus. After doing so, my symptoms became much more pronounced and the pain became unbearable. My mom and sister ended up driving to the cities to get me and my mom and I then proceeded to spend an evening/early morning in the ER where no tests were run and my pain was hardly acknowledged.

The next 3 days consisted of a clear liquid diet. My sensitive stomach couldn't even keep down anti-emetics and after doing my weekly methotrexate injection, I spent the night vomiting on the bathroom floor in borderline hysterics. I remember feeling so defeated that night and absolutely did not know what I would do if the colonoscopy didn't reveal something -- ANYTHING -- that might give us some sort of an understanding as to why my pain and symptoms had been worsening so rapidly.

I managed to complete the prep and the colonoscopy was finally completed the next day. It was noted that there was a small amount of irritation at the end of my small intestine. This irritation consisted of redness and swelling and could certainly be contributing to some of the pain flare, but the physician who completed my procedure wasn't convinced. He casually threw out the words "possible early stage Crohns disease" and sent my mom and I on our way.

The GI I was seeing got the results and told me "there was nothing diagnostic to see" and that there didn't "seem to be anything wrong!" As I went over my symptoms again with her, she said..."well, if you really want to, I suppose I can refer you to someone else for a second opinion?"

HA. E-patient OUT.

Instead of taking her *passive* recommendation, I called my insurance company and asked what GI specialists they covered within other nearby hospital systems. I located one of the clinics, got a referral from primary care, and was scheduled to see a new specialist about a month out. I also scheduled a consult with a colorectal P.A. just to get another opinion on board.

As I waited for the appointment, the GI symptoms persisted as did the symptoms/pain from my autoimmune arthritis. As I was put on other medications to treat the pain and degeneration in my joints, my GI system got completely overwhelmed. I was rapidly losing weight (nearly 30 pounds at this point) and the blood in my stool was becoming excessive. Hope was running low again, but because my symptoms had gotten so much worse I figured there had to be some sort of news on its way.

Colorectal saw me pretty quickly and gathered that I'd developed a fissure. I got some lidocaine cream to help address the pain, but they really wanted to get endoscopy results before moving forward any further. Then, FINALLY the appointment with a new GI specialist arrived. Immediately, she asked if I had ever been checked for a stomach ulcer. "No," I told her, choking up...anticipating that she, too, would send me out the door without any suggestions or a plan of care. Instead, she explained that she was concerned as my symptoms almost completely aligned with an ulcer and wanted me to get in for an endoscopy immediately. The next morning around 11am, I was told that there was indeed a 10mm bleeding ulcer harboring itself in my stomach and nearly perforating its lining. Two weeks on the same pain medication regimen could have easily meant a life/death surgery and permanent, severe damage to my GI tract.

[Sidenote: the doctor who performed the procedure and the GI specialist who has been following up with me have both been absolutely fantastic. My P.A. calls me regularly and she has made it clear that we are not stopping until the root of these issues are found and addressed.]

I have been on a medication called Linzess since early December to no significant avail. It has somewhat helped address the issues of painful constipation, but I am still going 1x (MAYBE 2x) a week. We discussed the switch to another (stronger) drug called Amitiza, but my insurance copay for it is nearly $200 a month. By a long shot, I also got approved for/started Humira to treat my arthritis which may also have some effect on the GI inflammation my body is experiencing. I've also been taken off of all oral prescription pain pills in hopes of curbing some of that. constipation. On the prescription front, we are pretty maxed out right now.

Yesterday afternoon, my P.A. contacted me again and we have decided to move forward with a colonic transit study immediately as well as a repeat colonoscopy + endoscopy in early March. I'm headed in this morning to swallow my markers and will return in 6 days for an x-ray that will hopefully show whether these issues are stemming from my colon or pelvic floor muscles. We will then take that information to create a plan of care and figure out where we're headed next. I go back to meet with a colorectal surgeon two weeks from now, too, and am already nervous about the options that will be presented...but I trust this team. I trust them. And I know that's huge.

It's a bit strange to be praying and writing about poop abnormalities these days...but I'm over being secretive about it. Far too many people who are suffering from similar issues feel as if they are completely isolated in the dark right now. Heck, I feel like I'm there. But there is just something about bringing light to situations through words and the telling of one's story that changes that. That's what this blog is meant for, after all.

If you're the praying type, SEND THEM ALL! I need some serious discernment. I have lost far too much sleep over these symptoms and am done giving them so much of a foothold in my life...but some days, it feels like there is absolutely nothing more I can do to retaliate.

Still smiling. Or smirking. Or forcing myself to do one of those things. Something like that. ;)


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.
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. 


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 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 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  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  introduce me to  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  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 . 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,  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  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 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.  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 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.