Friday, May 30, 2014

How You Can Help <3

A while back, I posted about my beautiful sister who was going to run in Hawaii with Team Challenge. Well, due to minor a physical setback, she has decided to run in Napa instead. 
She is still taking donations. 

This is copied from her website.

"Up until a few years ago I had no idea what Crohn's Disease or Ulcerative Colitis were. In 2011, that all changed.

After months of stomach cramps, diarrhea and other digestive problems, my sister Elizabeth, was diagnosed with Ulcerative Colitis. She spent many days in the hospital ER trying to figure out what was causing these symptoms. After a few months of trying different treatments and no results, she was hospitalized in August of 2012.

At that point she was so malnourished and in so much pain the doctor wanted to try steroids and pain medicines delivered by a Picc line for a week to see if that would be any help. The x-ray to check on the picc line placement saved my sister's life. It showed that her colon had already perforated in multiple places. An emergency surgery was done to remove her entire colon. She now has an end ileostomy. This ileostomy has saved my sister's life. I can't imagine a life without my sister, she is one of my best friends. I can't imagine her son growing up not knowing his mom. I hate this disease. The doctors are still not sure if her original diagnosis of Ulcerative Colitis is still accurate or if she has Crohn's Disease. They are leaning towards Crohn's Disease, which can spread through her entire digestive system, making a reattachment surgery an unlikely choice for her.

You can read all about her journey through this at her blog: mamasgotastoma.blogspot.com

In the spring of 2012, IBD doubled down on my family. My Uncle Dave, was diagnosed with Ulcerative Colitis and ended up with an emergency Colostomy also.

I have been a runner for almost 10 years and the Napa Half Marathon is the most important race for me yet. It is my way to support my sister, uncle, and the IBD (Inflammatory Bowel Disease) community.

Please help support my fundraising efforts:

$10: I will send you a Blue rubber bracelet that shows your support of the Crohn's Disease and Ulcerative Colitis foundation of America.

$50: I will write your name on the back of my jersey to share your support with everyone. 

$100: you can sponsor a mile of my race.

$200: I will make a "flat Stanley" character of you and take pictures along the course and send them to you after the race."

I know these diseases have affected many of my friends, new and old.
I am so proud of my sister.

You can make a donation at http://www.active.com/donate/napaga14/jessawotona

Thank you, friends!


Jessica, her daughter, and my Mancub

Thursday, May 29, 2014

My New Favorite Thing

I have had my ostomy for almost two years now. 
Can you believe it? I can't. 
It feels like yesterday that I landed in that hospital, hours from death. 
Since then, I have learned so many different things that I never would have even thought of. 
I have used trial and error and discovered a pouching system that works for me. 

One thing that I have just started using in the past couple of months, that I LOVE love love love, that I don't know how I lived without, is my wraps from www.ostomysecrets.com. 
See, my stoma is fairly high on my abdomen. Many ostomates wear their pants over their pouch as a way to conceal it. I would be wearing some hiiiiiiiigh pants if I was gonna do that. For a long time, I was wearing my pouch over my pants and wearing a cami, and the longest shirt I could find. 
I was always, ALWAYS pulling on my shirt to make sure that the "tail" of my pouch wasn't showing. More than once, it was before I noticed. Talk about STRESS. 
Boom!
Ostomy wrap. 
My pouch is concealed. It is secure. 
I even wear one to bed and I am sleeping better because it is more secure and not flopping around. 

Life is good. 
Thank you OstomySecrets! 

Wednesday, May 14, 2014

Free!!!!!

Today, I completed the last final of this CRAZY semester. 

I celebrated by taking a bath. A BATH. I haven't taken a bath in almost two years. 

I wasn't sure if my skin or pouch could handle it. 
It was lovely. 
A wet pouch is annoying for a while, and I hope it stays through the night. 
But for now. Bliss. 

Sunday, May 4, 2014

The Last Stage is Acceptance

Hello all!
So much has happened since Valentine's Day so let's get to it!

I spent this weekend attending the UOAA Mid-Atlantic Regional Conference that was held in Virginia. The Northern Virginia ASG (Associated Support Group) was our gracious host and coordinator. 

This was my second conference as an ostomate. It was a different experience for a few reasons. When I attended the National Conference in Jacksonville, FL last summer I was one of 400. This weekend was attended by, I'm estimating, 125. It was a more intimate experience overall and I was much more comfortable approaching people and making new friends. 

I also attended this conference by myself. BY MYSELF. In July, my sister came with me. Having a companion was a blessing and a curse. I had someone to talk to, attend sessions with, and eat meals with, but I also think that I held back a little and let myself be a little more reserved. Not having my sister this weekend took away my crutch so I had to "man-up" and talk to strangers. 

There's one topic that kept popping up this weekend that I wanted to share with my readers.
 Many of the speakers spoke about how, when you get ostomy surgery, it is normal to go through a grieving process. The five stages of grief are denial, anger, bargaining, depression and acceptance.  Just think about it, your body has been cut into, chopped up, and re-routed. Your body will never be "normal" again. It will never be "complete" again. The loss of that normal and complete body is a huge loss. As humans, we grieve when we lose a family member or a friend. It only makes sense that, as ostomates, we all had to go through a grieving process to mourn the loss of our normal selves.
  I remember too well the overwhelming feelings I had after my surgery. I remember feeling out of control and emotional. In hindsight, I can see that I was going through the stages of grief. The first three passed pretty quickly but I know I was stuck in depression for a very long time. I still have moments when I get overwhelmingly sad that this is the path my life has taken. I still have mornings when I don't want to get out of bed because I ate a bag of popcorn without drinking enough water and my stomach hurts. There are days that I don't want to shower because I know if I do I'll have to do an entire bag change and that just seems like so much work. 
But then there are mornings when I wake up and feel overwhelmingly grateful to be alive. There are days when I realize I have been at the park or walking around Target and I haven't had to gather up the Mancub and run to the restroom (multiple times) doubled over in pain. There are weekends when I have the opportunity to meet amazing people who, otherwise, would never have been in my life. 

I want to share with you all some pictures from this weekend. 
I'll add more as I receive them!
Me and Brenda Elsagher!
Just me and my bag.

Acceptance is a beautiful thing. 

Friday, February 14, 2014

Love

Happy Valentine's Day, friends!
I LOVE Valentine's Day. Admittedly, because I enjoy so many pink options when I am out shopping. Not many things are more girly than V-Day decorations. Hearts, pink, red, flowers, candy. I just adore all of it.

Now, I have to say, I get mildly annoyed on V-Day. I log onto Facebook and there is so. much. anger. And negativity towards V-Day. I get it. It's cheesy, it's consumerism at it's finest, it's an excuse for your already annoying friends to be more annoying about being so in love!!
Guess what.
That's The Point!
It's not supposed to be taken seriously.
Yes, we as a whole, should be telling our loved ones how special they are every day of the year. Great. But that doesn't mean there's anything wrong with setting aside a day for love.
 There are much worse things to celebrate.

Wednesday, February 12, 2014

To Mourn

This post is not about my ostomy. It is not about my disease.
This post is about life. And death. 
This post is being hastily written because I can't make sense of the overwhelming emotions I feel right now. 

I am writing this through tears. I am writing this out of the sorrow I feel for a family that I have never met. A friend of a friend. A blog that I follow. A story I know through a mother's words, shared with the world. This mother is feeling the worst. The worst thing has happened. 
Her daughter has died from cancer.
Her beautiful six year old has taken her last breath today. 
I can't make sense of it. It is so heartbreaking. No mother should have to go through this much heartbreak. 

I am sitting here weeping. My heart is aching.
I know I am not the only stranger who is mourning the loss of this girl. I only wish that the power of all of the love we all feel for her mother could ease her hurt, even if it is only a fraction. 
Rest in peace, sweet JLK. You will never be forgotten.

Friday, February 7, 2014

For the Cause

My son is three years old. He is starting to get into superheros. He will wrap a blanket around his neck and "fly" around the house, his cape flying behind him. He knows that superheros have super strength, speed, or can take flight. 
But real heros can't fly; at least, not without help. They don't have super strength or super speed. They look like the rest of us. Some of them wear uniforms. Some of them wear scrubs. 
My hero wears sneakers.
My sister Jessica truly inspiring. She is a gracious wife, mother, daughter and sister. 

And now she is doing an amazing thing for my community, for people like me who have Crohn's Disease.
This summer Jessica will travel to Hawaii to run the Kona Half Marathon with Team Challenge. Team Challenge is the Crohn’s & Colitis Foundation of America’s endurance training and fundraising program. If you, your family or someone close to you is affected by Crohn's or Colitis, please consider 
Your donation will help find a cure for these painful diseases. 

Enough with the serious! I haven't told you the fun part yet! Jessica has created a little incentive to the fundraising.
Copied from her website:

$10: I will send you a Blue rubber bracelet that shows your support of the Crohn's Disease and Ulcerative Colitis foundation of America.

$50: I will write your name on the back of my jersey to share your support with everyone.

$100: you can sponsor a mile of my race.

$200: I will make a "flat Stanley" character of you and take pictures along the course and send them to you after the race.



Thank you all for your continued support and a big thank you to Jessica for fighting the good fight and being my hero!






Tuesday, January 28, 2014

Paging, Dr. Stork!

My boyfriend Dr. Travis Stork and the rest of the doctors on the show The Doctors discussed ostomies in the show that aired today Tuesday, January 28, 2014. 
Here is a link to that show's synopsis, which includes video clips!
I didn't see the original airing but on my drive home from school one of my best friends called me and told me that she had stayed home sick from work and had seen the show. She and I have discussed my ostomy and Crohn's Disease before in depth. She has seen my pouches and heard my story. She was the first to call while I was in the hospital and lets me talk and cry for hours when I'm feeling overwhelmed.
 When she called tonight she told me that she finally feels like she truly understands the technical aspect of what had happened to me. She explained that hearing the process of an ileostomy and seeing the diagrams and models on the show really hammered home what I had been through. 
I would just like to say thank you to The Doctors for reaching at least one person today.
I can only hope she wasn't alone.  

Monday, January 27, 2014

The Newness

Hey all!
I didn't grow up with a lot of new. I lived in the same house since I was five, I went to the same schools in the same school district, I had a lot of the same friends, I went to the same malls and ate at the same restaurants. As an adult, I can't keep up with all the new things happening. I moved to a new state, and then back to a new house, I had a new baby (is it possible to have an old baby?), I moved to another new state, I found a new job which led to a new passion and career path, I started a new school and made new friends (sorta!) Anyone who is a parent can tell you that every day brings new challenges and new adventures. Today is the first day in the new semester at school.

Since my surgery I have wanted to try new things. Not things like skydiving or bungee jumping because I'm afraid of heights and that's just crazy. I thinking more along the lines of getting involved and pushing myself to be a healthier and happier person.
And I have already completed one task. I completed my first 5k!
Okay, I walked it because I am still extremely out of shape, but I crossed that finish line all the same. I did it.
And I am very proud of myself.

What's next? Who knows... 
Stay tuned to find out!

Wednesday, January 22, 2014

Resolutions

Hey all!
Wow, it has been a while since I have updated. I would like to apologize for that. Life is busy and every time I sit down to write a post I draw a blank. I feel like things are pretty stagnant ostomy-wise. Then I remembered, my life isn't just about having an ostomy. I am so many things and I want to be so many more things. I am a mom, sister, daughter, student... I have hobbies and passions and goals and ambitions. 

Every year on December 31st people think of a list of things they want to change in the new year. I usually don't bother because I know myself well enough to know that if I want to change something I will and if I don't, I won't, regardless of a promise I make to myself on one day of the year. This year, however, I have made a mental list of things to work on. One is to keep up with my blog more. Another is to use it to be more than a person with an ostomy. I will use it to talk about parenthood, school, work, whatever I feel. 

I hope you all (whoever you all may be) stick with me. Share when you think I have something good to say. Help me educate. Raise awareness. 

See ya later!