5.19.2016

Handicap Placards and Dirty Looks

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

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

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

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

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

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

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

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


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

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

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

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

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

4.04.2016

I Just Want to Be Better

*** Written last night -- April 3rd, 2016 -- the night before today -- SUBTOTAL COLECTOMY DAY!

No positive pants on here tonight.

I started drinking my colon clean-out prep a few hours ago. I carefully selected orange Gatorade to mix the solution with when I was in Target the other day because it's a flavor I haven't yet gotten sick of (after 3 colon clean-outs in the past 6ish months). Anyway, I started drinking it and had just given myself a pat on the back for finishing the third glass when a full-force feeling of nausea came over me. Immediately, I ran to the bathroom and threw most (if not all) of the solution right back up.

I flushed the toilet, peeled myself from the bathroom floor, and cleaned myself up. I dizzily limped back to my sisters bedroom floor where I've set up camp for the weekend and threw myself onto my small mattress. I whispered one word as teardrops made their way down my cheeks..."why?"

I texted my mom almost immediately and told her to come downstairs when she was done eating/cleaning up supper with the rest of my family. A few minutes later, I heard her making her way down the steps and almost instantly those stray tears turned to unrelenting sobs. As she entered the room, my mom asked, "Kenzie, what's wrong?" Before I could even gather my thoughts and form a response, the words came sputtering out of my mouth. I replied, "I just want to be better." 

I am desperate to be better.


I can't stand another uncomfortable conversation about the chronic constipation I deal with or drinking another glass full of water + Miralax. I can't stand one more night of puking my guts out on the bathroom floor and screaming out in pain as my unruly colon attacks itself. I can't stand enemas, suppositories, laxatives, stool softeners, one more sip of magnesium citrate, or any other over-the-counter solution that "should work for me." I cannot stand it. I just want to be better.

And thankfully, I will be. I'm choosing to believe that. To hold onto hope and positivity even though those things feel so far from the truth tonight.

How wonderful it is to have surgery scheduled just 12 hours after I hit my breaking point. How wonderful it is that I have a brilliant surgeon on my side who is more than ready to get me better. How wonderful it is that my close family/friends dropped everything they were doing to pray for me the minute they heard I threw up the solution I'd worked so hard to get down. How wonderful it is that we have a Savior and a Heavenly home awaiting us...one where there will be no tears, no pain, and ABSOLUTELY no colon-clean out solution.

Thank You, Lord, for having Your holy hand in scheduling my subtotal colectomy tomorrow. Thank You, Lord, for knowing my limits and numbering my days before I can predict them myself. Thank You, Lord...because I am so close to having life as I know it tonight be so freaking far away.

Thank You, Thank You, Thank You, Lord...for making me better.