New Bag. New Year.

Here is a quick summary of my 2010.

January- uneventful.

February- uneventful.

March- return trip to Mayo in Arizona- success!

April- colon removed.

May- recovery.

June- back to work (part time); lifted something too heavy which resulted in a hernia; had an allergic reaction to my a

llergy shots, which resulted in a heart attack.

July- uneventful

August- Staph infection!

September- Prolapsed stoma due to hernia, time to get it fixed! September 27th routine hernia repair surgery. Stayed in hospital 2 nights; got discharged on October 1st.

October- readmitted due to obstruction (very painful). The highlights were the NG Tube, more than 15 IV placements, surgery to repair, and trying to kick start my small intestine. Stayed until October 12th. The 13th I was readmitted due to a high fever and severe pain in my abdomen! Sweet! An abcess! Finally g

ot a PICC line, which made me a very happy patient.

November- back to work (!)

December- still working! pretty bad pain mid month- KIDNEY STONES! Yep, 4 of them. Having a little party in my right kidney. Consu

lted with the Urologist (can I even tell you how happy I am I have another 'ologist' to my resume?) and decided surgery was the only option.

You get the idea. My 2010 sucked. I spent a few months after getting my ileostomy bitter and angry- my whole life changed with one event. I have to wear maternity jeans and belly bands and I can no longer wear tight tops. I get tired easily. But, in between all the crap, there were some good times too.

Highlights

Gay Bingo with the crazy girls I work with. A trip to D.C. for sightseeing and relaxation with my love. Lots of Estate Sales. My first craft show! Becoming a member of Etsy Fort Worth. Watching Morgan grow into an amazing little girl- so sweet and understanding, with just a dash of smart ass. Being with Tyre when he bought Bullet (the most awesomest Challenger). Trading in Clancy for Casper- sad to see my buggy (200

6 VW Yellow Bug) go, happy with Casper (2011 White Ford Escape) and her working AC and radio. I am the official Godmother of the two most amazing babies.

Looking Forward to a Wicked Cool 2011

So many things to look forward too! Four Weddings- Mexico, Maryland, Austin, and Alaska. New house- with my very own "office." Exploring various artsy projects. Another Etsy Fort Worth Cowtown Indie Bazaar in

March.

Here's a Toast...

I have the most amazing friends and family members. I could not have made it through all this CRAP without them. It's been quite an adjustment and I have not been the happiest or nicest person through all of it, but, I am ready to mov

e on. I hope everyone has a fantastic New Year's Eve and Day- don't forget to eat your black-eyed peas (I definitely will be- I need all the help I can get.)

October 30th Party Foul

Definition of Party Foul: "Something socially unacceptable done in a social gathering." After a week of spending quiet time with Morgan because she was sick, it seems that, even though I am on a large amount of antibiotics, I am not immune to the common cold. I have had this poop bag for 6 months. I want to tell you a story, but first some background:

An "illestomy" means I have no colon which means I have a "stoma" that sticks out about 3 inches where my poop (and I use that term loosely- it doesn't resemble poop.) comes out into a bag. The bag is there to catch whatever my silly stoma likes to spew out at any given time. Cheese and Bread thicken it, which brings me to my most memorable experience thus far.

Tyre, Morgan and I went with Clay, Angela, James, and Abigail to a fall festival on Saturday. We ate at Chick-Fil-A and then headed down to Glenn Heights for the festivities. Did the bounce houses, petting zoo, and made a pumpkin and decided to leave. On the way back we stopped to get dinner at a new Mexican Restaurant. The good thing about the "BaG" is I have a b

it of time between going to the bathroom and emptying it. And, being how I am 6 months into this thing you would think I could empty with my eyes closed. So, we eat, and eat, and eat (tortillas and queso) and I decided to go empty my bag. When I opened my bag IT WENT EVERYWHERE. EVERYWHERE. Like all of the toilet, floor, walls, and managed to get in my underwear. WTF? How freaking embarrassing. How old am I? 95? 85? Nope, I'm 31 and this is when the bitterness weasels its ways back in- when something happens that reminds me that I will forever be changed. I shouldn't have to clean up the bathroom because I had an "accident." Will anything in my life resemble normalcy again?

On a happier note, with Halloween coming to a close- Thanksgiving and Christmas are ready to come right in. So, the same goals from last year- atleast some of the gift I give you will be handmade by Morgan or me.

xoxo

and so, the journey continues

.... 23 is a mighty important number to me. It's the number of change. The number of tragedy and the number of life. I spent my 5 month anniversary (on the 23rd of September) at UT Southwestern Hospital getting a CT Scan (which is hilarious to me because the entire department knows my BY NAME and BIRTHDATE) and then off to see Dr. A, my surgeon. Good news? The damage is not below the muscle. Bad news? I have to get it surgically fixed- but it's a relatively easy surgery and recovery period with only 2-3 days in the hospital. Awesome. It hurts and itches and is driving me insane. Grrrrrr.....

Going to work tomorrow- and then off for a week. Dr. A was 90% sure I would have the surgery Monday, but there is a 10% chance it will happen the following Monday. Whatever. Just fix it.

I have walked (for the past week) to and from M's school in the mornings. It's been so calm and relaxing (after I drop her off of course) and I have also been eating a tad bit healthier. I have had several salads and less junk food. I am telling you all of this because I have GAINED 3 POUNDS. It must be muscle.

23

Tomorrow is September 23rd. The first day of Autumn (my favorite season). Free Hug Day. The day the Jetsons premiered in 1962. The day the planet Neptune was discovered in 1846. The day Ray Charles was born. It was also the day, 5 months ago, that I had my colon removed; it has changed my life totally and completely and I don't even know where to begin. I am starting to be more confident as I change my bag. More confident when I'm out in public and need to go to the bathroom. More confident when I dress for a night out- though I rarely have the energy for those nights. I have been taking showers WITHOUT my bag, which is, nearly orgasmic. In the past week I have traded tacos for salad and have begun the tiny step of walking M to school, giving me a good 30 minutes of brisk walking. I talk about it less.... it's not such a 'freaky' thing I have to discuss about constantly.

Tomorrow is September 23rd and I have to spend it at the hospital, because my body just can't figure out this whole "no colon" thing. Evidently all the brisk before school/ work walking has damaged a muscle which has caused my stoma to swell and enlarge. I mean, really? Are you freaking kidding me? WALKING has caused an injury. Awesome. I'll be at UT Soutwestern St. Paul with all of the amazing nurses and doctors that put up with by grumpy bitterness and snarky comments.

It's been 5 months and I feel like I just keep rebooting and starting all over again.

PS: Don't want to forget about my heart..... June 23 was the day of my heart attack- so it's been 3 months since that life changing experience.

Dear Universe,

I would like to start over...

Ctrl+ Alt+ Del

From 40 to 60

Evidently changing a very important medication from a low dose to a high dose causes "have new or worsening symptoms such as: mood or behavior changes, anxiety, panic attacks, trouble sleeping, or if you feel impulsive, irritable, agitated, hostile, aggressive, restless, hyperactive (mentally or physically), more depressed, or have thoughts about suicide or hurting yourself." I can really relate to the IRRITABLE, AGITATED, HOSTILE OR AGGRESSIVE behavior right now. Back to 40 I go.....

And if that isn't just the cat's meow- I get to go see my Colo-Rectal Surgeon this afternoon! Better than a day at Six Flags.

Best Quote Ever

So in the midst of all this madness in my life I read a blog entitled "Blood, Poop, and Tears." http://bloodpooptears.wordpress.com/ Basically the same situation, just I have Scleroderma and she has MS and she had Ulcerative Colitis and I had.... who knows. The one thing we have in common is she is also living with an illestomy. She basically says everything I can't put into words... and here is just another reason why I constantly check her blog: "I have no tolerance for other people problems any more either. Like if your leg isn’t falling off, I don’t care. And it better not be just falling off it better have been blown to bits, reconstructed, and then died after they reattached it." My thoughts exactly.

Bazaar/ Bizarre?

Today is September 7th. I am lying in bed (of course) watching the drama unfold from the "The Real Housewives of New Jersey" (what I missed last night). I have done my "full body scan" several times in the past couple of days- head? good. throat? good. heart? good. stomach? great! rash under my stoma? STAPH. I'm totally serious. It's an effing Staph/ MRSA infection. Don't worry though, unless you have licked my abdomen in the past week you won't get it. (actually, I would feel tons better if you just went right now and washed your hands. go. now.)

This "every week" thing is getting so annoying. The total colectomy in April? Acceptable. The heart attack in June? Ridiculous. The tear in my abdomen in July? STUPID. August brought ANOTHER (my fourth one to be exact) esophageal stretching (two days before the CIB) and now, Hello September, thanks for bringing me Staph!

Dear Universe,

I could use a break.

Sincerely,

Casey

And, yes, I am still bitter. (just less angry)

Up Yours

Today is May 23rd, 2010. It's been 1 month since I had a total colectomy. I remember the pain, bloat, and utter disappointment I had the days prior to the surgery- I remember the look on the surgeon's face when he told me the only thing that would fix me would be the total removal of my colon. I remember the nurse coming in and marking where my stoma would be. And I remember telling everyone, reassuring everyone, that I would be ok- that this wasn't that big of a deal. And I remember admitting to myself that the surgery was a big deal. The aftermath was terrible, there was pain (emotionally and physically) nausea, embarrassment, and weird cravings.

What has changed? Everything. The way I plan my day. The outfit I wear. The food I eat. The places I go. I would have never guessed that I would have to learn terms such as stoma obstruction, illestomy, barrier wipes, adhesive remover, phantom poop pains... etc... But I did and I do and I am ready to move on. How will I celebrate today? With a tiny Coke.

Italian Food

Dear Universe:

Thanks for giving me a couple of weeks with no major life changing events. I needed the rest. But, don't get me wrong- I hate having an ostomy bag, but, appreciate the quick healing.

Love,

Casey

Ambien Ramblings

This time last month I was miserable. With a capital M. I was bloated (I weighed approx. 40 lbs heavier), I was hurting, tired, and most importantly I COULDN'T POOP. And believe me, when you can't poop, it hurts. Especially after 7 weeks of not having a number two. This time last month I was in and out of the hospital (with never any answers), taking pain killers like they were jelly beans, and trying to tell my doctors that something was wrong with my body. One of my vices is all of the medical shows on Discovery Health Channel, specifically "Mystery Diagnosis." It amazes me that people live for years with no answers, no solution, no diagnosis to explain why their body is turning against them. I can't believe that if I would have stayed with my original GI doc, I would still be trying a castor oil/ enema/ bowel prep diet. It has almost been a month since I had this "operation." This removal of a major organ (may she rest in peace). I think with all major decisions you second guess yourself, however in my case, I second guessed my surgeon (what if he is taking it out just because I keep calling, demanding answers, and this is the only way to shut me up?). Having my post- op appointment this past week answered all of my uncertainties. He didn't just remove my colon because he didn't like me, he did it because of all the nerve damage. It's hard to NOT have doubts, I guess. The week after surgery I wouldn't look at my belly. The nurses would come in and I would turn the other way. Stoma? I didn't want anything to do with it. The week I got discharged I couldn't change my bag by myself, I needed my mom because I didn't want to touch it (but I was making progress...). AND, I didn't want anyone telling me that "you get used to it", "life is so much better with it", or "life will get back to normal." I am 3 weeks post op. 3 weeks that I have had to think, journal, and "get used" to having my poop in a bag on my stomach. (Get ready- TMI) I was using the bathroom earlier today (I pee and then empty my bag) and for the first time didn't cry, gripe, or feel handicapped because I have an ostomy. I have been running errands (1 or 2 a day) and ultimately have to use the public restroom- and it's not so bad. I am getting more comfortable in my new skin. More confident. The place I am in now is not the place I was in when I got out of surgery. I have noticed that my energy level is at places it hasn't been at in months, I WANT to do fun stuff again (maybe a Rangers Game this week?). I placed my first order of all of my supplies. I got bags, stoma paste, barrier wipes (non-sting), and deodorant gel. And, insurance covered 100%- which I still can't believe... There are still things I am scared of- blockages, infections, the disease spreading to my small intestines... but for right now, I accept this. I accept that in order for me to be full of energy, happy, and working, I need to mourn the loss of my colon and MOVE ON. I'm sure one day I will have a blockage. And I will get an infection. But for right now- THIS VERY MOMENT- I am ok.

Bandz

Morgan got some money from various family members for her birthday. Being the child that she is, I took her to the Owls Nest so she could "look" (followed by a "I really don't want to spend my money...) She found the Webkinz THAT SHE HAS ALWAYS wanted, a gaudy ring (costume jewelry), and a bottlecap necklace (EVEN THOUGH WE MAKE THEM).

But the real reason is there is a trend going around the youngsters- SillyBandz. Owls Nest was totally out and I remembered the Learning Express across the street "just to check, not to buy mom." They had them.. but you had to follow the signs-

And then fight with 20 other tweens to get the perfect pack.

ps. can't get pic to rotate.

On the illestomy front, it is getting a bit easier as I get used to it. (it's still a pain the ass, literally).

I am still trying to figure out what I can and can't eat. For sure can't eat: popcorn shrimp with tarter

or cocktail sauce and the Whiskey River Chicken Wrap from Red Robin (that makes me real sad).

Large

Today I had my post- op appointment. I was nervous, to say the least, because I knew he was going to have to look at "Ethel" and I was scared there would be an accident (I am like a 2 year old right now). The appointment went by quickly and I got ALL of my way important questions answered... especially when I could return to work. You see, while I was out for medical CRAP (literally) I missed our biggest fundraiser- the Gala, and I missed our move to a new office. So now? I HAVE MY OWN OFFICE. Seriously, with a door and everything; which means I'm sort-of excited about going back (not to mention I miss everyone I work with). AND, we have two restrooms and I get the whole men's room to myself! I know, it's like my birthday! So, back to the appointment.... he said I could return to work in 3 weeks. Ummmm.... 3 weeks?? That is unacceptable. To make a long story short- we agreed I can return Monday, part- time, if I promise to basically do NOTHING. I can sit at my computer and talk. And walk to the bathroom (the men's room- the one I have ALL to myself). I also got the results from pathology when they tore apart my colon- that I had severe/ significant nerve damage. Which makes sense, but pretty vague. I am pretty pleased with how it all turned out and so is my doctor. After it was all over I celebrated with cheese quesadillas. Y.U.M.M.Y.

Be Silly

This is the beginning of week three sans colon. How do I feel? Better. This whole thing IS getting easier. I'm sure that there is so much for me to learn, but I am making it now and that is what counts. My week includes an appointment with my surgeon for the followup and possible return to work (part time, of course), I am anxious to hear his opinions on the appearance of the colon itself and the biopsy results.

Things I Can't Eat: seafood (stinky), any red sauce (ketchup, cocktail sauce), nuts, popcorn.... I am sure the list will get longer, though not looking forward to it.

The whole colon being gone SUCKS. But, it's getting easier. I might make it.

Nine

9 years ago tonight I was in the hospital awaiting the birth of M. It was swift and easy- the exact opposite of her personality. It was the most important day of my life. That night at the tiny hospital in Salisbury, Maryland is one I will never forget. I will never forget her first smile, the first time she rolled over, the first time she crawled or walked (ran), the first time she told me what she wanted, when she wanted, or the first day of preschool. Every aspect of her life is something that I had a part of and I will always be grateful for that. She turns 9 tomorrow morning at 10 am and we will celebrate every minute of it.

Pass it On

This time last week, after just getting out of the hospital, I was bitter, pissed, and hated the world. I was in pain, I couldn't sleep, and I wanted to find a way out of life. My body had turned against me, it was out of my control. I heard (via various blogs) that it gets easier, changed/emptying the bag, the feelings you have regarding carrying around a bag 'o poo, feelings and apprehensions you have going anywhere. The thing is- I can't stop thinking about it, but the thoughts have changed from I HATE IT TAKE IT AWAY to Hey- this isn't so bad; I might make it after all. So what has changed? Staying busy- staying busy keeps my mind busy and my heart happy. Surrounded by friends- the keep the humor level way up, but let me shed some tears if I need it. Realizing that this my life now. This bag is as apart me as my left thumb. I need to function- to live. I recognize that I'm probably not completely through the healing process, but I feel good that I am just making it.

This picture shows the wicked cool ring my mom got me for Mother's Day. It's a Kindness Ring, The ring comes with several different color strings so you can change it out and each string means something really neat. Like my ring I have it tied with a white bow to remind me to breath, relax and accept peace. The ring goes 'oh so well' with the beautiful blue mani/ pedi I had with a very good friend.

Deuce

There are so many blogs out there for individuals living with ostomy bags. Those that have them temporarily, those that have them permanently, those that have them because they have UC or Crohns or IBD, and then there's... me. I have one because I have an autoimmune disease that just. won't. quit. I am 30 years old and I feel worse than my 90 year old grandmother. How does one cope with this? This life that is not fair. This life that is full of pain and hurt and uncomfortable situations (because that shower I had after surgery? chaperoned by my nurse). I have to carry around a bag of poop, there is nothing glamorous or sexy or trendy about that. Before the surgery I was pushing about 150 lbs. Now? About 110 lbs. I get excited about spring- the change in weather, clothes, and the FLIP FLOPS! It's in the 80's out and I am wearing a BAG OF POOP. It's hot and uncomfortable. It's not fair. I am so angry at people. People that are eating fast food (ummm... hello? colon health) or those that are trying to get the closest parking spot so they don't have to walk as far (ummm... hello? colon health) or the ones that drink the Extra Big Gulp (how 'bout some water?) I didn't realize how much your colon does for you and how well you have to treat it. Because, I know now... and boy, do I have regrets.

Number 2

This is me. In a scooter. At Walmart. I kept getting stares, like people were trying to figure out what my disability was- for sure next time I going to carry around beer and keep them guessing.

Days are much easier than nights, for sure... I can't get into a comfortable sleeping position. It (bag o' poo) keeps getting in the way. That and my total and complete "empty" feeling from not having anything to fill my abdominal cavity. I will adjust, I know this. I know that "life goes on" and "this will make me a better person;" I just DON'T feel that NOW, and I really need it. I have learned more about my intestines in the past few months than I thought possible- and "if I would have known now what I knew then?" I would have treated my body like a temple. I would have had gallons of water each day. I would have exercised. I would have stopped the cokes on the way to work (now when I drink coke my bag inflates.) I would have chosen fruits instead of sweets and vegetables instead of meats. Evidently I was totally ignoring what God/ the Universe was trying to tell me the past few months and this is how they really get the point across. I'll try and pay attention more next time, because this new "bag?" is not fun and I can't imagine what else they would throw my way.

Listening to: Hem

Reading: The Opposite of Me

Wearing: (Ethel), stretch pants, oversized purple shirt (feeling pretty confident that this will be my attire for the time being.

Punctuation Marks

Dear Colon,

You were in my life for a lovely 30 (almost 31) years and you were good to me. Until. Until March. Until you decided you would rather keep the poop in, instead of letting it come out. That was mean and uncalled for, but I think you got the worst of this deal. It was such a long standoff that I can't really remember the very beginning anymore and who cares how it started? How is it going to end? After arguing, calling, and harassing the doctors at UT Southwestern, I got the medical attention I deserved. I was my own advocate. I truly put my heart and soul into getting the appropriate medical care. As I read blogs and websites about other people in my situation, I see the years these patients have to wait for the surgery I got in less than two months, am I lucky? You see, Colon, I am torn. Am I lucky? I traded you for Ethel. Ethel is happy and loves to poop. She likes to be hidden and makes the funniest sounds when the room is quiet. You, Colon, were discreet and normal. Until two months ago; then you were a rebellious teenager. I was informed. I knew what a coloscopy/ coloectomy was; what I didn't know? The pain and irritation that would follow. The severe pain that my small intestines produced because the doctors waited so long that they were shutting down. So, Colon, I hope you enjoy your life at the hands of medical students dissecting my "amazing" colon. Colon, you will not take my life- there is much living to do.

----------------------------------------------------------------------------------------------------

What exactly did I have done?

http://en.wikipedia.org/wiki/Ileostomy

One (Wo)Man's Trash is Another (Wo)Man's Treasure

When I go into an antique store (or a garage sale) I have a list of quirky items I look for- dominos, all kinds of game pieces, small toys that can be turned into charms, black and white pictures, chandelier crystals, vintage dictionaries, and any Golden Book- just to name a few. I get giddy with the anticipation of turning something into a piece of art, something that will be treasured and worn. For three years I have hunted and experimented with different ways to create jewelry, I hoard all types of craft books, I check 30+ crafty blogs obsessively, and I long to be surrounded with people to create with- and an unlimited amount of time to do it. Two weeks ago I was sent an invitation to become a member of Etsy Fort Worth. I have my first meeting on Thursday and I am apprehensive about going. What if they don't like me? What if my pieces aren't good enough? What if don't fit in?

One of my New Year's Resolutions was to create something everyday- no matter how tired I am. As I was getting an order ready to ship I saw a Loteria Card in my "tool" box. A cactus. A cactus is a perfect representation of how I view myself- able to endure all types of environment with little maintaining. For the past three years I have looked for who I am, who I want to be, and who I will become. I think 2010 is going to phenomenal year.

Open the Door, Close the Window

I promise... to not promise. I always get introspective at the beginning of the year- so many new year's resolutions to eat healthy, exercise more, spend less... and all they remind me of is all the past year's failures. Therefore, I am taking a new, different, and more "Casey" approach to 2010. Everyday I want to create something- whether it be jewelry or a blog post, 2010 will be the year of "Creation."