The unknown

Sorry I have not kept up on writing this. It's my ultimate goal to do this weekly and to become one of those bloggers that other people read it especially those with Crohn's disease or ulcerative colitis. Someday maybe!! My life is a little to crazy currently but writing makes me feel so much better. 

Right now my life is in a state of uncertainty and I can honestly tell you I am probably in one of the lowest points of my life... And yet I sit her and keep asking myself why me, poor me?? Yadadadadaca!!! 

This is not me...

I don't ever give up..

Yet why am I giving up now??

I think that I'm very deflated in that fact that I was hoping I would feel better after my 4th bowel obstruction yet I feel worse... I feel the worst I have felt since I was diagnosed 15 years ago. But God only gives you what you can handle right??

Let's hope this is true. I should be so extremely excited because I get to go to Las Vegas and spend time with some amazing people. Many of them who have experienced many of the same things that I have yet I'm missing that excitement and joy. 

Why can't they figure out why I have this constant pain that cripples me daily yet God makes sure I have the smile on my face and continue on like I'm suppose to. I wish there was a pause button that I could push.

Or possible a rewind button to 9 weeks ago before my surgery. Maybe I would have changed my mind.  Maybe I would have felt differently if I would have known how I would feel today. 

Too bad that's not a reality. 

My reality is today. 

And I can't give up!

I have so many great family and friends that support me on a daily basis and many that I probably don't know that are thinking about me. 

As you can see from this picture they are a bunch of amazing people. 

And this crazy guy I call my husband. We have been thru hell and back and yet he continues to stand by me even when I daily say I don't feel good or he has to take vacation days to hang out in the hospital with me. 

I can't imagine how hard it is to be by me sometimes and even worse when there is nothing  he can do to make me feel better 

And finally my parents. Of course I wouldn't be where I am without them and I think vice versa. I have shown them some life lessons that they probably never wanted to know ;) 

And they have shown me what true love is and how to be an amazing parent. 

So even though there is a lot of unknowns currently in my life. I do know that I have all the love and support around me.  

And that I won't  give up! 

And that I will crawl out of this dark hole eventually 

Because I don't like black, I LOVE SPARKLE!

Invisible Illness Week

I have been writing this post for the entire week and have deleted it numerous times. I ended up in tears yesterday and deleted again. Now after reading The Great Bowel Movements blog post I have the courage and am basically going to tag off of their post.  

Invisible illness week affects millions of people and its not only Crohn's disease.  About 96% of illnesses are invisible. No visible signs and no assistive device used. That is an astronomical number if you think about it and that number might even include you. 

My roller coaster ride.......

As I think about all my friends, colleagues, doctors, family, people I meet at soccer games.... I really wish you knew alot of this about me. Some of you do or hope you do and others are supportive even without knowing about this roller coaster ride. I am currently on that low point of the roller coaster but can't wait to get to the top of the hill ASAP. I have been at this bottom for way to long. 

I am a talker and like to talk all the time especially smile.  Over the last year I have talked more about my Crohn's disease then I have since I was 14 years old newly diagnosed patient.  I have accepted this is my life!! I will endure this daily and it is how I look at it which will make me stronger. I wonder if one day I will be able to walk up to someone and say I have Crohn's and they just get it?? That's why I continue to raise money for a cure and continue to talk on top of the highest mountain 

What I wish I could say everyday. 

It's not just a pooping disease. Of course that's how it's classified for most people when they talk about it but it is so much more. It's so complicated. I will never be the same person... Each day my faith and strength is tested and its how I look at it that gets me thru. I'm not an attention seeking person or seeking a pity party. I just want people to understand its so much more complicated than you could ever imagine. Faith is something that I need to continue to hold on to and dig deeper into my faith. 

Food vs. Me

There is many days that I really consider not eating because I know that it will cause pain or I will be in the bathroom within 15 minutes of a meal. It is so hard to go to a family gathering or out to supper with friends or Brian and feel so embarrassed when you have to rush to the bathroom during the meal of there is 1 bathroom at the house and its going to smell awful when you leave.  That is a thought in my head daily. Or the time when you are in the 2 stall work bathroom and pray you can hold it long enough until the next person leaves because you know they can see your AWESOME shoes and will know its you. Food shouldn't be an enemy. It should be a conversation piece or a relaxing visit with friends.  There is so much urgency with this and it can be so embarrassing when you could possibly have an accident at age 29.... My 2 year old should be the one having accidents. Hence why I carry an extra pair of underwear in my purse and wet wipes just like my toddler has in his diaper bag. 

Stress

Stress causes flare ups and I hate stress!! However stress is extremely hard to avoid as a human being. I will continue to try to avoid it but as a motivated and loving challenge young adult it's hard to do that. I will push thru everyday. I will continue to be a beautiful wife, an awesome mother, a crazy friend, a successful career woman and a wonderful person. 

I want you to know precisely what “chronic illness” means. I have copied this next section word for word from The Great Bowel Movement because I couldn't have wrote it any better. It means there is no cure. There is no end. We have no choice but to deal. And when that gets too hard, we dig deeper and find strength we didn’t know we had, then we deal some more. There literally is no choice. When you think you’re out of strength, you find more. The human spirit can prove amazing.

Think of the hardest athletic event you can. A marathon? An Ironman triathlon? The Tour de France? Sailing around the world? All of these have a finish line, a limit, a time period that eventually allows you to say, “I did it, I can rest now”. Chronic illness is harder than all of those. We can’t drop out of this race. We have no coach. No one handing us a medal. We have no off season. We just. keep. fighting. You’re not used to this. You get a cold and you know it’s going to be over in 2 weeks. You feel horrible, but each day you feel a little bit better, you focus a little less on your discomfort and a little more on being normal. You have an understanding that this is going to end, like it always does. You break your leg. You can’t walk for a summer. You give up your summer activities, you can’t go swimming, you get strange tan lines. But each week, you get closer to getting out of your cast. And once you’re out, you get stronger and stronger. Forget everything you know about sickness and pain. You can’t comprehend disease with no end until you’ve lived it, and when, as a patient, this concept hits you, it hits hard.

But because of this, because we are left in this situation without an opt-out button, we become so strong. Stronger than we ever imagined, and wiser too. We don’t associate our condition with weakness (although this is real, it’s not lasting). We associate it with resilience, strength, empowerment. The innate knowledge that we have it in us to survive, and we know because we’ve faced it.

We call on the quote “You never know how strong you are until being strong is the only choice you have”, and understand it is truer than true, for us. Not even endurance athletes can claim this. They don’t know strength like we do, because pushing through is not an event for us- it is life. Through it all, we keep a humble sense of pride and accomplishment. We don’t get a medal or our picture in the paper, but we get a stronger sense of ourselves, and maybe even the chance to inspire the next person. And all this is something that I wouldn’t trade for anything. (www.thegreatbowelmovement.org) 

My children

There is so many days that I feel guilty that my children have to endure this with me. I feel very guilty at times that I chose to have 3 beautiful children and give them the risk of developing this ugly disease.  It's selfish in a way but I wouldn't change anything with them. I pray daily that they remain healthy and understand that I love them with my whole heart and that they don't just view me as a sick mommy but a beautiful, strong, fun mommy who has an ugly tummy with some scars. 

I am learning to live everyday by the minute because you really never know what's next. I have an amazing purpose and drive with life that others aren't blessed with.  I am a better person because if this disease. I know God has a purpose and he certainly didn't give me the easy path. 

Always know that you can ask me about my Crohn's if you have questions or just don't understand. I want you to be inspired by me, to try new challenges because you never know what tomorrow brings. 

I want you to continue to see the drive and passion I have around finding a cure for this invisible illness. I am optimistic that there will be one some day and confident that God gave me this for a reason.  

That in-between place

So I'm not exactly sure that I am thrilled being in that in-between place that is very hard to describe.  I actually can say that I. Hate the in-between place called my life right now. 

I have always been an A+ kind of girl and I'm no where near that grade.  I'm struggling with the fact that I feel like I should be back in A+ mode and I'm not either physically or mentally.  

Being a healthcare professional I understand that it takes time for our body to heal but I think that mine should heal 100 times faster :). It has been 3 weeks and I have accomplished little to nothing at home but laying around. I should be grateful that I can do this so I can heal properly but I feel guilty that I'm not doing anything. 

I have been out a couple of times to have lunch with Brian and some friends. I got my infusion this week so I am crossing my fingers that the Remicade will keep everything in remission. I have to catch a break eventually right?? 

I can honestly say that I love all the love and support that I have around me.  There has not been a day where I haven't got a phone call or a text asking me how everything is going and how I am feeling. I still feel very sore and slow but that will go away eventually. My stupid Crohn's won't go away however. 

So true!!! 

Again I can't tell you how much I love everyone around me even when I have been very unlovable.  I have hit my breaking point recently when I have used "I'm sick" as an excuse for a lot of things when I was sick. Maybe it's not an excuse since its absolutely the truth but I stopped being a good person/friend/sister/wife/mother/friend/daughter.......  

And you know what maybe that's how it's going to be for a while. 

Maybe this in-between period that I am in will last 3 more weeks or 6 months. Whatever it is I will continue to take 1 step forward every day. 

I'm learning to chill and take things kind of slowly. I'm not superwoman even though I think I am

I'm throwing all the expectations I have of myself and will accept only what I can do

I will be kinder to myself and most of all smile

And continue to take this one day....one hour...one minute.... One step at a time.  

Recovery

Who ever said that recovering from a major surgery is just like a vacation needs to try it sometime because they are wrong!! I wish I could be using all my vacation days on an actual "vacation" with my family and  of laying in pain on the couch feeling guilty because I'm accomplishing nothing! I am 8 days post my surgery and I'm slowly feeling a little better each day.  Not lifting 10 lbs or more for 6 weeks is going to be impossible. I feel so weak and that any muscle I had is gone. I am down to my lowest weight I have been in almost forever so let's hope that all comes back gradually.  I know that this all takes time but most of you that know me realize I don't like to wait and that I want it now :). 

This. Is. Me. At. My. Sickest! And not my finest.  Don't judge the looks by its cover. 

For those of you that are squeamish don't look at the next picture. Here is my abs at their finest too :) 

Gross huh!  I'm pretty sure I don't have a belly button under there either. 

Thank you!!

I want to say thank you again and again for all the support to have received from family and friends. The phone calls, texts, food and prayers mean the world to me.  I have the most amazing support system in the world that I know I couldn't get through times like this without it. 

I have my recheck tomorrow with my surgeon so we will cross my fingers and toes that he says I can run in Vegas in November. If I can't, I will be one hell of a cheerleader!!! 

That's it for now. I will keep  you posted after my appt tomorrow. 

Go with it!

I am still not in a healthy state of mind which makes me sad but it is so amazing to me the love and support I have surrounding me in both that I see and what is unseen! My wonderful neighbors surprised me with an entire sack of meat, I have received random messages of people thinking about me and just the care surrounding me is hard to put into words. I knew I. Was a pretty cool chick but I guess I never realized how cool I was :)) 

 I read this amazing blog post this morning by a young gal named Kiley.  I met her when I was a cabin counselor at camp oasis and her smile and attitude was so infectious that you just wanted to hang around with her.  She is so wise in her young age and I want to share a part of her blog with you: 

Kiley wrote: " I've learned to go with it. I honestly believe that God made me someone to just go with the tidal waves. I've learned how to drink down barium for CAT scans, and mastered the art of the colonoscopy only on my second attempt. The clean-out process the day before really isn't that bad, especially when I remind myself that there is a seven year-old doing the same thing I am."  

How amazing is that... I've learned to just go with it.  I have always just went with it until this week and now I'm just sitting back and sulking. I need to put my big girl panties on and realize that there has to be a light at the end of the tunnel somewhere even if its not this month but 3 months down the road there is a end somewhere. It could always be worse. I could  be so sick that I couldn't be home with my kids or my family or enjoy listening to both their laughter and fighting.  

So to end this brief post lets just say "I'm going to just go with it"! Thank you Kiley!! 

Defeated.......

As most of you know I am one strong woman but I have hit another boulder that I can't get past and need to give in. I haven't been feeling well Crohn's wise for the past 2 months or so and it only continues to get worse :( I will bear you from all the gross details about my flare up but let's just say Charming is my best friend and febreze.  The book of medicine isn't working like planned so I had a surgical consult yesterday. That is where surgery comes in. I'm scheduled for surgery on Monday at 1230pm... Keep me in your thoughts and prayers as its going to be a trying day for myself and my family.  

I have to giggle a bit about this because I struggle with knowing how to deal with all of this when I have learned how to always put on a brave face no matter what I was feeling.  You kind of become an expert after 15 years of "living sick and looking cute"! That statement alone is hurting me right now as my kids don't understand how I'm feeling because I look just like mom on the outside.  It will be a hard week for lily because school starts Wednesday and I will be in the hospital. I already told her that we would put all her clothes out for the week so she matched....you never know what he could put her in. Lucas starts kindergarten this week and I will be missing the first day which is huge. I think it's hurting me more than it will probably hurt him. I just wish everything came easy yet it doesn't. Like I said before my kids will understand all of this eventually just not today.  

Sorry I haven't posted in a long time. I will try to continue to post my updates on here so you can read and of course on Facebook. I will have all sorts of time to lay down and do nothing unfortunately. You can give me some new hobbies if you have ideas!!  

Talk soon 

Here I go again!

Hello friends and family!
Guess what?! It's almost another year and I still have Crohn's disease so you know what that means.... I'm running in Las Vegas again and raising funds for a cure for this UGLY unpredictable disease.

I think my new blog name is pretty awesome with special thanks to Lindsay Hilger and Ben.  You can think of this as the royal flush winning in Vegas or a pretty sparkly toilet where I spend a majority of my day at times.

I figured July 1st was a great day to launch my fundraising efforts as well as give me ample time to
train for Vegas in November.  I only had 1 HUGE hiccup today..... I fractured my left pinky toe. I'm suppose to wear the awesome old lady shoe for 4-6 weeks and NO running... Hence I'm going to have to find other ways to stay in shape.

Some of you may wonder why I would pick something that is so physically challenging to my body and honestly the only answer I would have is that I feel just like everyone else just with a crazy messed up stomach. 

I have been asked be be the mentor for South Dakota this year and I feel so privileged! I have an awesome team already signed up and can't wait for more to join in this once in a lifetime opportunity. It is something that you will want to continue to do year after year. Thank you in advance to Dani, Trav, Jen, Travis, Brian, Matt and Miki for joining on this crazy adventure. As you can see the list is awesome and we are only hoping to continue to add more people to our team so my fundraising goal is to meet it ASAP so I can help everyone else meet there's! 

Here is my link to donate: http://www.active.com/donate/vegasMNDK13/VegasKSidel

If you would like to send a check you can write it to me and mail it to my house and I will send it in. My address is 202 w 7th st. Hartford SD 57033

Keep checking my page frequently as I hope to keep this updated as well as I can!! And to keep you posted on the craziness at the Sidels!