Comfort and Joy

It's been too long time since I've posted, but I've been thinking a lot about this blog lately...especially since it's officially been over a year since the surgery.

Time flies when you are actually able to live in a way you never thought possible.

Since I first started this blog so much has changed:
1) New job. 
2) Moved back home. 
3) Ran two 5Ks and am working towards reaching my goal of running a 1/2 marathon. 
3) Wedding is getting closer and closer and ...
4) New perspective.

Good old Wenda has become just a natural part of the day to day.  Like any part of one's body there are days that I love and accept her, but there are days when I hate her. 


Days that I love her:
1) When I have a 4 hour meeting in my new job. 
2) When I'm driving an hour (or more) in my commute to work. 
3) When I'm walking around the city looking at Christmas lights with my fiance. 
3) When I'm out on the town with friends and there's not a bathroom in sight. 


Days that I hate her:
1) When she makes my ostomy appliance look like I have a bag of chips under my shirt.
2) When I want to wear a bikini (umm...yeah this happened... once).
3) When my ostomy appliance breaks or does something strange, but if this blog hasn't taught me anything it's that stuff happens. 
4) Hardly ever. 


As we get closer to the new year, I'd like to make a resolution in 2012 to keep this blog more up to date. Selfishly I've procrastinated in being consistently inconsistent in my posts, but I'd like to be more of a voice for my fellow ostomates and "Crohnies". If any were to ever come across this blog, I want them to know that there is hope. 


I was recently cleaning out my closet in my parents house and stumbled across a Christmas decoration that my fiance, Dave, had purchased for me when I was in the hospital last year.  It's this plush Snoopy sitting at a red grand piano strung with Christmas lights with Woodstock sitting on top. When you turn this decoration on, it plays one of four Christmas tunes and lights up.  I had pushed this decoration to the bag of the closet but when I came across it yesterday I was extremely moved.  This decoration was one of the first things I saw when I woke up conscious in the my hospital room last year along with Dave and my Dad.  Seems silly to get upset over Christmas decoration but good old piano-playing-Snoopy really struck a chord with me. 


As much as I pushed myself to move on and recover, recoup, and accept...there is a part of me that' still healing and there always will be. This year I've been given the gift of an entirely new life and this next year I want to do more to give back. Between my new job and the wedding, there's a lot on my plate but I'm very excited for the future. Hope that everyone reading has a wonderful holiday filled with hope and inspiration that you continue to give to me. 


Murray Christmas.


 

Brown Sugar You Make Me Feel So Good?

Over the weekend, Wenda gave me a bit of a scare.

Let's just say recently I've been loving vegetables like a love song baby, and tomatoes have been on repeat. I'm very fortunate (knock on wood...okay knock on an entire forest of red woods) that my digestive system and stoma have been able to tolerate a variety of unexpected foods like seaweed and sesame covered sushi and a cornucopia of veggies. I've found that Diet Coke and a glass or two of pinot help the asparagus go down in the most tolerable way. Of course every ilesotomy is different but Wenda has been very kind...until Sunday which turned into a not so funday.

After lunch with my brother in Lincoln Park, I sensed that the wafer of my pouching system was feeling a little tight and that my stoma was a little swollen. I drank a few glasses or water (and a bloody mary) with lunch but found no relief. Concerned I decided to drive my brother home from the city, and pick up extra ostomy supplies. My mom suggested I take a nap but I couldn't relax. I had too much on my mind.  Taking it easy for the rest of the day I prayed that whatever this taught and unusual feeling that was going on with my stoma would go away.

Monday morning soon arrived and I attempted to go about my day as usual. However I still felt like something wasn't right. The tightness spread to the left side of my stomach. Upon arriving home I went for a walk hoping the pain would ease up.... but I could get no satisfaction. Frantic that something was seriously wrong I began searching my symptoms. The results of my Internet self diagnosis for a swollen stoma had me breaking into a cold sweat.  I stumbled upon a message board where someone suggested an ice pack and sprinkling brown sugar on the stoma as a home remedy to get things back to normal state.

Shut the front door. Brown sugar?

Within one hour I started to notice a difference. Who knew a baking ingredient would grant me piece of mind - but I'm grateful to the ostomates who shared this secret. It's thanks to so many of the strangers out there that I don' t feel strange and that my worries aren't weird, they are part of this new life.  So whatever troubles your mind at 3:00 AM, whether it be medical, professional, or personal, chances are there is someone who's shared something like it. If you find you can't let it go, then share it (with the world wide web, your best friend, or maybe a higher power) and don't suffer in silence. You never know how a sharing story with a similar soul could bring a significant change and peace of heart to not only yourself but a complete stranger.

Other things may change us, but we start and end with the family. ~Anthony Brandt

It was a Christmas in July miracle: The perfect weekend filled with hugs, laughs, and even a few tears.

I love Chicago, but at heart I am an east coast girl. My ideal vacation would be one of three things: 
1) A trip to Ocean City and sampling salt water taffy along the shore with the Murray clan.
2) Partaking in a soft pretzel while visiting my grandmother in Philadelphia.
3) OR catching up wtih aunts, uncles, and cousins in Long Island from my mother's side.

It's not so much the places but the faces that make trips out east so special to me. I am very fortunate to have such a large family that just exudes love for one another. As time passes, I cherish weekends like the one I just had more and more.

This past Saturday I celebrated the marriage of my cousin Kevin to his beautiful bride (and now cousin of mine) Jami.  I was honored to witness this occassion with them and elated to have the opportunity to bring my fiance Dave as well. As I shared dance moves and pictures with relatives, I couldn't hide the pure joy of those moments.  The weekend was a reminder that God has truly blessed me with an unbelievable family who make me believe in Him.

But the love didn't stop there...across the country two amazing women, my Aunt Chris and Aunt Meg, were running a half marathon in Crohn's & Colitis Team Challenge from Napa to Sonoma. I'm so fortunate to have their continuous support in my life and they truly inspire me. My aunts have been running for about ten years and their motivation to run for others really moved me to well...move! Prior to my surgery I was never able to run outside without getting sick or having to run to a restroom. The past three weeks I've taken up running for the first time since gradeschool and am up to about 2 miles now. It's not much but I hope to run with a purpose for the CCFA or some other organizations like my Aunt Chris and Aung Meg have done.

A lot has changed in my life in the past year, but what remains is God's presence in my life through the people he surrounds me with.  This weekend served as a reminder that no matter what challenges we may run into or changes come our way, having a good family on your team is the greatest prize at the end of the race.

City Stickers

For a few years I was big fan of the show Grey's Anatomy. One of my fondest memories of college was taking a study break and watching the show on Sunday's (before it moved to Thursday's) with ten other girls in walk-in-closet-size dorm room. A few season's in I kind of gave up on the series, it might have been because I couldn't handle the "Into You Like a Train" episode (ew!), the overplayed-sounds-like-Snow Patrol soundtrack, or the Dr. McWhatThe? storylines. However, one of my all all-time-favorite quotes from television remains from this show:


"We're adults. When did this happen? And how do we make it stop?"

Recently I just got the renewal for my vehicle city parking sticker.

It's been one year already?

Someone page Dr. Hahn because my heart just stopped.

I feel as though I just moved in yesterday and am still getting used to "being an adult". There are days where I can't even handle it.  Rewind to last evening where I attempted to cook a frozen pizza, fell asleep on my couch, and awoke to the sounds of my blaring smoke detector. Yes, so apparently I don't know jack about cooking a Jack's.

When I first started out on my own last July 4th, I was shouting "Let Freedom Ring" from my studio window, but now I am counting the days where I get to live with my future husband. Don't get me wrong because living alone has its benefits: you can walk around in your underwear, watch whatever Bravo reality program your heart desires, and not feel ridiculous as you attempt to complete Jillian's Last Chance Workout at 5:30 AM (because seriously there's no chance I'm doing that after a long day at the office).

However, there's something to be said for cohabitation. Someone to remind you of that pizza in the oven before you doze off dreaming, someone to help you carry a month's worth of dirty laundry to your car while walking in heels, and someone to be there for you when you aren't sure if that's a centipede or cool bangle you must not have realized you purchased when you recently fell into the Gap (please let it be the bracelet!!!). In my case, I'll have someone to be there for me when I'm having a tough day dealing with the ileostomy.

So here I sit renewing my sticker for one more year and continuing the private practice of living alone. This summer I truly celebrate a new found freedom that my ostomy has given me and it has me smiling brighter then a firework. Before you know it, I'll be blogging about living with my McDreamy and avoiding a McSteamy situation of petrified pizza.

Wenda You Decide on a Name?

"Did you give your stoma a name?" A few weeks ago I was on an ostomy support group discussion board where ostomates were responding to this question. There were 84 responses of names that people had give their stoma: Lenny, Fred, Pocket Dream, Butthead, Mrs. Whoopie, Henry, Bridgett, Lilly...the list goes on.

I started wondering why anyone would name this surgical creation.  Curiousity kicked in and I did some more reasearch. I quickly found a post from a woman on another ostomy support page providing an explanation as to why so many play the "name game". She said, "Think of how many people name their cars or the movie Castaway where Tom Hanks named the volleyball Wilson." Giving a name to your stoma can make the process a little easier to deal with and help you come to terms with having this as a permanemnt part of your life.

Clear as mud. I started giving it a little more thought but I wasn't ready to give my stoma an official name. I played around with a couple...Trixie...no....Rupert...no. I put the idea away for awhile.

Last weekend I attended two graduations for my sisters. At each ceremony I received a program of all the hundreds of graduates' names.  When one was announced that I liked, I took mental note. When you really think about it, names hold so much signficance. They can define us and no matter where you hear or read anyone's name, it evokes a powerful feeling that's positive or negative.  The name "Kathleen" must have evoked a plethora of positivity for parents in the 80's, because there's a lot of us out there!

So in true loopdeloop fasion, I digress. I was passing an airplance bookstore en route to Chicago, when the chidren's books caught my eye. My thoughts went to childhood favorites...one that I always loved was "Where's Waldo". The classic series by Martin Handford doesn't offer any literary genius but did provide hours of entertainment growing up.  I remember loving when the series introduced, Wenda. She first appeared in Where's Waldo: The Magnificant Poster Book and always looses (and finds) her camera.  As we were waiting for our flight, I was looking at pictures. Flipping through photos, I was pleased that my ostomy pouch wasn't showing under any of the dresses from that weekend's celebration. My mom pointed out that she was looking for it but was in awe that she couldn't notice it at all.

Then it hit me like Wizard Whitebeards staff...I shall call her Wenda.  When she's alone and unconcealed, in her red and white, the girl sticks out like a sore thumb. However, Wenda is hard to see in the crowded scenes of sports, cavemen, and beaches. So for all you searchers out there, see if you can spot her. I dare you! But if you can, pull a Wenda and loose the camera. ;)

Life's a Beach

Well, I did it.

I tried on my tankini. You can call me Rihanna because "I like it, like it..." so come on, let's go to the beach. 

Take me to sweet sunshine of Lake Michigan and let me embrace the city skyline painted on a pastel blue. I could care less about her teenie-weenie-yellow-polka-dot-bikini because frankly she doesn't look that good in it.  I'm rocking a one piece (swim suit) and a two piece (pouching system) at the same time. Yep.

When I was 16, I was in the hospital for 6 weeks because of some severe health issues due to Crohn's disease. I met an amazing woman through a family friend named, Maeve. She also had Crohn's and she quickly became my mentor and hero. Though Maeve was dealing with her own health struggles, she gave so much of her time, prayers, and homemade chicken soup to help me get through one of the most difficult periods of my life.  There was one day in the hospital where I was in really poor spirits. My i.v. wasn't working, the meds weren't working, and the medical clowns who were working the floor, insisted on visiting to "cheer me up"... again...(For love of gelatin, nurse, don't send in the clowns.)

I felt pessimistic and upset. Maeve came in and right away she could sense I was defeated. She shut the door and said, "Katie, you can cry if you want to." She had me at "you can" because tears immediately started flooding. After a ten minute pity party of good crying, we took a deep breathe and then we wrote this prayer. Maeve told me that whenever I wanted to give up, that I should say this prayer and God would help me get through whatever moment I was struggling with.  I know that I have this prayer in a drawer somewhere but the part I remember vividly was about going to the beach. "God, please bring me to the day where I can go to the beach and not worry about finding a bathroom and let me just enjoy the day with my friends and family."

Well, it took me almost ten years but God did answer my prayers. I get to go to the beach this summer and there's no room in the cooler for a single worry. The bathing suit is packed, the sandals are at the door, and there is a bright orange beach chair with my name on it. Lake Michigan is no ocean but sometimes on clear days you act naive and imagine it is. So I have to close with lyrics to the number one song on my iPod beach mix. For the first time in my life, is actually resonates with what the summer will be:

"We spotted the ocean at the head of the trail
where are we going, so far away
and somebody told me that this is the place
where everything's better, everything's safe.""Walk on the Ocean" by Toad the Wet Sprocket.

Necessary Objects

Recently I have been thinking a lot about sunglasses.

Specifically, a pair of Ray-Ban Classic Wayfarer Sunglasses - Tortoise with Green Lens. They are sort of a summer staple around the Chicago area. Just walk down Diversey Parkway on a sunny, Saturday and you'll find plenty of sophisticated Lincoln Park trixies sporting a pair of sweet shades. (Too much alliteration there? Super.)

I have been keeping my eye on everything from BlueFly to Groupon for some sort of coupon that will give me monetary motivation to actually purchase this eyewear I have been idolizing. However, I am trying to keep my current spending to stictly essential items: Pinot Grigio, Lean Cuisines, gasoline, and ostomy supplies.

A year ago, I never could have told you what a two-piece pouching system was or even attempted to guess what Adapt paste or a barrier ring was. (Altough it sounds like Barrier Reef which is someplace I imagine snorkeling, which I imagine I would need a boat to get to, thus requiring a pair of sunglasses...but I digress.)

These days my monthly UPS package of Hollister ostomy supplies has become like Christmas in July.  1" Wafers, pouches, curved scissors, and stoma sizing tools are quite simply the most overused adjective in the English language...amazing. They have allowed me so much freedom to go and just soak in the sunshine of a beautiful day, enjoy a dinner date with my fiance, commute to work without anxiety, and just LIVE! So who knows? Maybe this payday I'll put aside some cash towards a pair of summertime specs. Because you know what? My future is looking pretty bright.