Putting 2013 behind

I can honestly say that 2013 is a year that I can't wait to put behind me. Don't get me wrong there was some very positive things that happened to me but the negatives seemed to outweigh the odds. I have been reflecting recently on life and how things have to get better or so I hope.  I learned so much experiencing all the bad that I did this year that I can cherish moving forward. The top 5 things that I have learned or can understand more now is this:

1. Don't cry or fret over the past, it's gone.  It's so easy to think about how you would change things in the past but in reality that is not physically possible.  I recently found a list that I wronged 20 things I wanted to do before I turned 30... Let's just say I could only cross off 5 things...I guess I have 2 more months to cross some more off 😃.   That list isn't going to make or break my life. I need to quit making lists that are unrealistic and set my goals 1 at a time because we only have 24 hours in a day.  We all need to quit being so hard on ourselves and live in the present. We need to cherish and be grateful for everything that we have. 

2. Don't stress about the future, it hasn't arrived.  As 2014 is upon us, we all are setting our goals for the next year and future. That's great!! However remember live in the moment because you never know when that moment will pass you or the world will stop. I got that slap in my face this year by losing my grandma.  She was someone that I could talk to honestly and always got an honest answer. Losing  her was so unexpected and so hard to grip that I have been trying to take each day one step at a time.  Say I love you, kiss your kids daily, call you friends, enjoy life! 

3. Live each day to the fullest and show all your hidden sparkle. Enduring my 4th bowel resection in 15 years is not something I want to do again. They say 3rd times a charm... Well I'm saying 4th time is a charm. I can't fret about my disease and what's going to happen in the future or tomorrow because my disease will be with me until the day I die, I need to focus on my health daily. I can't begin to tell you the excitement I have moving into 2014 and the passion I have to push awareness forward.  I'm going to spread sparkle all over!! I just as we'll be wearing a tutu full time. 

4. Slow down!  This is a word that isn't in any of our vocabularies because the world we live in is fast paced. We THINK we need the nicest things, nice cars, a big house, a high paying job, all the friends in the world, the list could go on and on.  When in reality all we need to do is slow down and look at who is around us. That is what means the most. We can't take all those material things or that money to heaven. But what we do take and leave is the memories we make and the love we share. 

5.  Never lose hope!  

I'm a faithful believer that things only happen for a reason and God only gives you what you can handle. When you are dealt those cards that you don't want, deal with them with your head held high and a smile on your face. Don't show defeat.  You are stronger than you can imagine. Never forget it! 

I CANT WAIT FOR A NEW YEAR!! It's not a fresh start, yet another new beginning.  

Day 5- Aunt/Uncle perspective

Sorry I didn't blog yesterday. I haven't been feeling the best and hoping whatever it is goes away. Below you will find the perspective of a very amazing set of people. They are beautiful inside and out and have been there for me in whatever way they could be!!

My name is Bruce Gabbert.  I am Kristi's uncle.  When she asked me to write something about Crohn's for her, I thought "I can't do that."  After some thought I came up with his. What does Crohn's mean to me?  Well when I think of Kristi I think Courageous, Resilient, Outstanding, Happy, No quit and Sweet.  Kristi is all these things nd so much more in spite of her disease.  If you don't know her then you would never tell she is sick. She will never let us know the pain she is in. I hope there will be a cure for Crohn's and Colitis, and I know that Kristi, her family and friends will do all we can to make his possible. I am so proud of the woman, mother and wife she has become. I love you Kristi!

-Bruce

This is Crohn's and Colitis awareness week and I would like to say a little something about a very special young woman who happens to be my niece.  I met Kristi when she was first diagnosed with this horrible disease 15 years ago. She has grown into such an amazing, beautiful, spiritual, and loving person.  Since her diagnosis, she has graduated high school, gotten her nursing degree, gotten married and has had three beautiful children.  For the average healthy person, her spbusy life would exhaust most of us, but she puts on her infectious smile and keeps on going. The one going I always hear her say is that the hard part about all of this is that she looks fine on the outside, but on the inside she is a really sick girl so most people don't understand. She will come to our family gatherings with her beautiful smile after being sick for days and not utter one compliant. If can't even begin to know how she struggles on a daily basis not knowing what the day will bring. Kristi has helped so many others with this disease and I am so very, very proud of her! Kristi is a hero and a true inspiration to me and many, many others! May there one day, soon, be a cure for his disease. 

-Dawn

Day 3= Friends

I have asked some of my dear friends to write about the importance of being an advocate for Crohn's disease and how they feel about the disease and being a best friend of mine.  I love them all!!!

Here they go :) 

Crohn's advocacy is something that is near and dear to my heart since my best friend has been struggling with it for 15 years. Until Kristi was diagnosed, I had never heard of Crohn's. One would think treatment sounds as simple as "watch what you eat". Unfortunately, it's not. I don't think many people have a strong grasp on how debilitating this disease is, as many people who suffer from it look completely healthy. It is more than just a stomach ache. It affects every aspect of their life. For those affected it means living with, at times, unbearable pain and countless medical treatments. I take for granted being able to eat whatever I want and feeling fine. In retrospect, it's sad that my biggest concern about what I eat is if my jeans will be too tight. Hopefully through awareness efforts, treatments will advance for this silent disease and people living with Crohn's can only worry if their jeans will be too tight. 

-Amanda( best friend for 24 years)

My dear friend Kristi asked me to write a few words about what Crohn's advocacy means to me. I was of course honored that not only would she ask, but to think of me as a Crohn's advocate. Seems like a big title to hold. So I had to look up the word advocacy- the act of pleading or arguing in favor of something, such as a cause, idea or policy; active support.  The phrase active support really hit home for me because that is really the essence of what I believe it means to me to be a Crohn's advocate. I don't know how to cure Crohn's or make Kristi's pain go away, but I do know how to support her as a friend and I know her life would be so much easier if she didn't have to fight Crohn's each and every day. I so desperately want a cure for Kristi and others living with IBD.  Kristi has shown me that this world really is bigger than just our lives and that we can make a big difference if we ban together against the fight for finding a cure for Crohn's. She introduced me to Team Challenge this year and it was a life changing experience.  I will always going forward being a Crohn's advocate by actively supporting not only Kristi, but the search for a cure .

-Jen (friend for 2 years)

Crohn's..... I first learned of Crohn's a little over a year ago. At first I seen it as he "invisible disease" with no physical sign of the person being sick. Little did I know what was going on inside. Not to long after I got to see first hand how quickly that all can change!  From being fine one day and then the next day your having your stomach cut open. I've seen the toll that it takes on a family. I've seen the fear of what's to come. I've seen the annoyance of it..... Simple things that we take for granted like, flying in a plane, running, being In a crowded place, etc.. So my wish or hope is that someone will find one medicine that will take care of the disease.  Something they can take in the morning and they can be on with their day. It's to much trial and error right now and it takes a toll on their bodies. Help spread the word, take a little time and learn about it. There's a lot of things out there that you can do to help. The Take Steps walk that money raised helps sends kids to camp oasis for a week.  Also Team Challenge, hundreds of people raising money for research!! 

Dani (friend for 5 years) 

Day 2: my moms perspective

My goal this week is to have loved ones in my life give their perspective of Crohn's disease and how it affects them. I always talk about how it affects me but it affects all those around me...

A perspective of Crohn's disease from my mother: 

My daughter was diagnosed with Crohn's disease 15 years ago. During the last 15 years I have experienced and witnessed the hardship this disease has had on my daughter and her family. My daughter has tried numerous medications and nothing has seemed to work for her. My daughter has gone through 4 surgeries and continues to struggle with this disease on a daily basis. Being a mother, it is very hard to see your child fight through something like this with everything they have, yet, there is no end in site for her or her pain.  My daughter has been a go getter from the time she was a little girl, she continues to be this way for her family and children even though she lives with the pain of this disease everyday. 

The hard part for me is watching her go through this knowing that nothing I can do will make it better for her. As a mother, you want to take away all the pain your children have and I am unable to control that with this terrible disease.  It also is sad to me that people really do not understand this disease and how much it affects the daily life of someone.  I do understand this disease and want my daughter to know I feel her pain everyday.  Even though my daughter is a beautiful person on the outside she fights this roaring tiger that tears apart her insides and causes her great pain.

 My wish for my daughter is that they will eventually find a cure for Crohn's disease. I would like to see this happen in my lifetime knowing that she will be okay and not have to suffer anymore would be a great gift for her.  I will also continue to advocate for this disease to keep spreading the word so more people will finally understand what this disease is all about and how they can get on board to support the people who struggle with this disease. I would love for people to learn more about Crohn's and what it does to people.  

I love you mom!! 

Day 1= my children

As many have seen from all the Facebook posts today starts the week of Crohn's and Colitis awareness week!! This is a time for us to spread the word and educate everyone around us about these "trying" diseases. I have been trying to think about a theme for these next 7 days and I think I have found a good one. 

The 7 days of Crohn's!! 

So the 1st day of Crohn's involve how dearly this disease affects my children on a daily basis.  I know I have talked about this many times before but I there are so many days where I question my parenting skills. I can't begin to tell you how many doctors have advised me not to have children because do the risks that ensue and the possibility of passing the genetic marker onto my children.  Well I went against the grain and have 3 beautiful children. 

Even though I don't know if they will develop Crohn's in the future I do know that they are healthy and happy and make my world go round. There have been times in my life especially recently that I don't think I would have made it but I would think of them and continue to trudge on. 

They have all learned to accept the concept when we are in stores and mom has to run to the bathroom... Literally sometimes. And having all 3 at times crowded in the stall with me as I am apologizing over and over again how sorry I am. They don't care!! They understand and don't ever complain. I'm the one that is constantly making excuses and saying sorry while they don't care.  They think it's weird and funny when we have had to leave the cart in the middle of the aisle. 

I was talking to lily about this week and asked her if she would write about what Crohn's is to her... Here's her story!!

My name is Lily and I am 9 years old and in the 4th grade. I have never known anything different than the fact that my mom goes to the bathroom A LOT and has to be in the hospital at times. I'm really sad when my mom is in the hospital because she is sick and not home with us. I wish that her Crohn's would just go away forever. I don't like it when she has to get a needle in her arm for medicine. 

What do you think Crohn's is?

Crohn's is something that hurts people's stomach like my moms. It makes people lie down because they have so much pain and sometimes curl up in a ball.

How do you feel about Crohn's?

Sad that my mom has to be sick all the time and that she has it 

Do you have a wish? 

I wish that people wouldn't have Crohn's 

Do you pray you and your brothers don't get it?

Yes  because I don't want to go to the bathroom all the time. 

Vegas=success

It has taken me a bit to post about Vegas but I can honestly tell you it literally took me almost a week to feel normal and to not be totally exhausted. I had so much fear and trepidation going into this team challenge race! I seriously was almost to the point where I felt like I couldn't go because there was no way I could run 13.1 miles with little to no training and being post op a bowel resection!!! 

We'll guess what ladies and gentleman.......... I'm SO glad I went and loved every second of it. This group of people that wears the orange and blue I officially call my family. They are my family that truly understands mostly everything about this disease and can look at you and say "yes I know"!  I can't even tell you how much I love being around these people. I feel "normal" for a weekend and that is a word that isn't used to describe me. 

So let's get to the juice of it.... That dreaded 13.1 miles!!! I didn't run the race to prove anything, either to myself or anyone else. I ran it because "being part of it" is so much better than being in the sidelines. No matter if I had to crawl, hop, skip, jump, dance, or walk the Vegas strip!!  I had an amazing group of people that surrounded me the entire time. We ran as a South Dakota team for almost the first 3 miles which was great. Then I got to be surrounded by my Jen sandwich!! These 2 gave me the strength and support to make it the entire way. They walked when I had to walk, talked when I was talking and just pushed me and my strength. I felt like the last 3 miles I could have died but they didn't allow that and made sure that my hands were up in the air as we crossed the finish line. I was thinking as I crossed that finish line, it didn't matter how long it took me to get there, I'll still have Crohn's disease, still feel sick and no medal would change that. But what mattered was having all the love and support around me!!

I can't put into words how much I love each and everyone one of you!

I hope you all have a Happy Thanksgiving!! Remember you have so much to be thankful for.  Your family, your health, your strength and your spirit!!

I will end this with a few pics :))

T-1 day to Vegas

Well let's just say that I'm very excited to go to Vegas with my husband and dear friends!! I am also really excited to hang out with fellow crohnies and feel normal for the weekend. Even though I don't know what will happen with my legs and body on race day... What I do know is that I will run, walk, skip, crawl, be carried across that finish line with my hands held high and a smile on my face!! 

I have been mentally preparing for this and thinking about how I will endure each of those miles so here is my motivational list for Sunday. 

Mile 1: Brian- since the day I met Brian I have never been normal aka healthy and he never ran away.  There have been days I know he wants to hide from it but he doesn't. I am so excited that he can see me cross the finish line 

Mile 2: Lily, Lucas, and Lane: these 3 wonderful children are amazing and give me a reason to get out of bed in the morning, especially those days I don't want to! 

Mile 3: My parents: they have supported me since the day of my diagnosis. However there are many times they think I'm crazy with all my ideas but even if they don't agree they still smile and say carry on!

 

Mile 4: My amazing family: we have been thru a lot this year but I know that they love me for me and will always take care of me no matter how old I am.. My family is as thick as glue

Mile 5: My friends: especially these 3 awesome ones running with me on Sunday. Jen, Dan and Trav!  And to those cheering on the sideline .... Travis, Miki, and Matt. I expect to see sparkle and lots of noise!

Mile 6: My grandma Helen: I miss her dearly. Her birthday is on Monday the 18th.. She always support my advocacy towards finding a cure and always pushed me towards whatever goal I was pursuing. She always told me I could accomplish the world. 

Mile 7: God: without him I wouldn't be here.  I use to question him and why he gave me this ugly disease but I have since realized its because he knew I could handle it and wouldn't give up without a fight!!

Mile 8: People with IBD who can't run: I'm grateful for every day I can do my normal routine as I know there is some days I can't and there is many who can't do anything 

Mile 9: All those crazy people cheering for me: thank you!

Mile 10: Sparkle: I love glitter and sparkle. It is so beautiful and brings me such joy

Mile 11:Crohns: I love you and I hate you. You have allowed me to meet some amazing people but you have also made my life a living hell  

Mile 12: The kids I met as a counselor at Camp Oasis: these children are warriors and bring me such joy in having the opportunity of meeting them and talking with them for that 1 week 

Mile 13.1: Me!!!!!