Damn You Crohn's

I know what you're thinking, "that girl posts a lot about Crohn's!"  Yes, yes I do.  You don't realize that this is sometimes the only way I can vent, raise awareness, and keep from going completely crazy.  I write to let my feelings out instead of taking them out on others.  Yes, my husband has Crohn's.  Yes, it affects our ENTIRE family.  Yes, it wears me down when he is sick.  Yes, it's hard taking care of a little person and a sick adult.  This is not a common cold where you're husband lays in bed and complains that his nose is running, or that he has a fever, or he needs an Advil.  Let me tell you a little about this disease Crohn's.

Crohn's is an auto-immune disease, which mean's that the healthy cells are attacking themselves instead of the bad cells.  No, I can't catch it, if that's what you're wondering.  Everyone experiences something different with Crohn's.   For my husband and many others, it causes severe intestinal cramps, bleeding, lack of life and lack of nutrition.  Most Crohnie's take meds but their bodies don't properly absorb them because everything flows right through.  Many people experience constant diarrhea.  For us that don't have it, imagine having eaten something bad that you're body doesn't agree with everyday and having diarrhea every time you go to the bathroom.  That is "normal" for a Crohnie.  It's not pleasant and many have accidents because they can not get to the bathroom in time. The life of a Chronie isn't always a pleasant one.  Many time their friends and family suffers because they can't go visit or they don't want to leave the house, or they don't want people to come over.  There is no cure, just expensive meds that cause lots of other problems.  My husband is currently on Humira, without insurance this medication (as well as many others) can not be afforded.  They have lengthy hospital stays and can reach their deductibles quickly.  This disease can affect both the large and small intestines.  Some people opt to have part of their intestines removed and end up with an ostomy bag in various places.  Other people are put on feeding tubes, just so they can receive the nutrients they need, without that they would die.

The foods we take for granted they can't.  I can eat salads, fresh fruits and veggies, and fried foods.  My husband can eat NONE OF THAT!!!  Roughage of any kind of a no go.  No spaghetti, the spaghetti sauce tears him up from the acids in the tomatoes.  Limited ground beef, red meat is hard to digest for everyone, but especially hard for those with IBD.  Fish and chicken are always a safe bet.  We eat a lot of carbs around here.  We buy stock in potatoes and macaroni noodles.  Mashed potatoes and mac n cheese are always on our menu around here.  Many times you fix dinner and they lose their appetite, you can't be offended by this.  So much can happen between the time you start and finish dinner.  You put it in the fridge and save it for later, maybe they'll eat it and maybe they won't.

Sleep for a Crohnie is sometimes hard to come by.  When they are up, so are you.  Sometimes I'm running bath water for him at 2:30 am.  I'd like sleep too, but his health and comfort are my main priority.  You can't be selfish when it comes to loving someone with this disease, if you can't handle it then don't make it hell on them.  We have heard of so many divorces from this disease, because it's not pretty, it's not glamorous and it's really shitty.  There have been times when I sit in the bathroom with him and rub his head or his back just to give him some comfort.  There have been days where I have picked him up off the floor because he doesn't feel like he has the strength to fight.  There are days when I have to remind him that not all hope is lost and one day there will be a cure.  There are days when I have to remind him that I'm fighting right along side him and I'm here for him no matter what.  When I said those vows "in sickness and in health...til death do us part" I meant every word of them.  This isn't a disease that crept into our lives, this is a disease we've dealt with for a long time.

I don't know how else to write about this.  This life sucks for all involved, somedays we're living life and other days we are just surviving.  Today we are in survival mode.  Today I am worn.  Today I'm struggling to take care of even the smallest of tasks because sleep eluded me last night as well.  If I ever meet that guy Crohn's in a dark alley somewhere, I WILL DEFEAT HIM!!!  We will find a cure.

If you would care to help find a cure, please go Donate to Cure For IBD!  100% of your donation is not only tax deductible but also 100% goes to research to help find a cure.  So far in 2016 we have donated over $100,000 to research.  Lets triple that in 2017!!!!  The man who founded this foundation doesn't sit in some fancy chair making millions while only a portion of your donation goes to research.  He's out there running marathons raising awareness, and none of his marathons are funded by donations.  Everything is an out of pocket expense for him.  Don't wait, go donate now!

-Kourt

IBD Awareness Week

You see I sit here a week before my husband has a colonoscopy, and I'm scared.  I'm not scared because they are putting him under, I'm scared of what they will find.  Oh you shouldn't be scared you say.  Well, you see, my husband has Crohn's, I've posted about it here before.  It's nothing new, but every year it's changing.  The disease is progressing, the treatments aren't working, he's miserable, and that's his new "normal."  Normal to most of us is living life, having fun, visiting our friends and family.  To someone with Crohn's thats not normal.  Normal to a Crohnie is staying home, not going anywhere, spending countless hours on the toilet every day, sleeping a ton, and just being lifeless.  There is no life to have, friends get neglected (not by choice), family fights for the Crohnie, and people suffer.  No one's family asks for this, and sometimes it comes unexpectedly.  My husband is a 33 year old man who has had the life sucked out of him, simple things he can't enjoy.  There are many times I go to family functions by myself because he's in too much pain to leave the house.  Crohnie's scout out a bathroom everywhere they go, it's normal to them.

Many caregivers experience "caregiver's fatigue", if you don't know what that is, look it up, it's real and it affects me all the time.  I not only care for a very energetic 5 year old and our home, I care for a sick husband.  He says sympathy isn't always enough.  What can I do for him?  I can raise awareness.  This week, December 1-7, is Crohn's and Colitis awareness week.  I'm making my stance known that I raise awareness for my husband, his friends, and many others around the world who are suffering.  Yes, there are meds to treat this horrible disease, but they too come with crazy side effects.  There is no known cure!!! You want to help my husband find a cure, visit Cure for IBD to see how YOU can make a difference.  They say it takes a village to raise a child, it also takes a village to find a cure.  100% of any donation you make goes to fund research.  The gracious gentleman who created this organization didn't do it for himself, and he isn't making a penny off of anyone's donations.  Everything that is raised goes straight to research.  We as a Cure for IBD family have raised over $100,000, lets keep that going.

I sit here today and wonder what the future holds for my family.  How many more hospitalizations will we have to endure?  How many more treatments will not work?  Will they find a cure in time?  Will he be gone from our lives forever one day because of this horrid disease?  Will my son be left wondering why daddy is gone?  Will I have to create a legend for Stephen to remember his daddy by?   Will I be left a widow at a young age?  These are questions that hit me everyday, they are not fun ones and they suck.  This disease has taken the lives of many and it won't quit until we find a cure.  Why am I so adamant about this?  Because something has to give for my husband and his friends all around the world.  Bottom line is WE NEED TO FIND A CURE!!!

If you know someone suffering with this disease or Ulcerative Colitis, hug them and make them aware that you are there for them.  They need you.  They need your love, support, friendship, and time.  They need a shoulder to cry on, a visit at the hospital, a ride to the doctors office.  They just need YOU!!!!!

We Remember

Today it has been 15 years since tragedy struck our nation!  We saw a nation come together like we had never seen before.  We saw enemies become friends, and friends become better people.  We have seen our nation shaken to the core and 15 years later we still remember every detail about that day.  We remember where we were, what we were wearing, who we were surrounded by, and more importantly we remember how we felt.  We remember watching on tv the chaos, whether we were at home, school, or work, we will never forget that day.  

I was a Senior in high school in 2001, we had started school a few weeks before.  I was wearing some black dress pants, and a royal blue dress shirt, my hair curled and my blue framed glasses on my face.  I was in 1st period walking the halls to collect the attendance, when our assistant principal pulled me into a classroom to say "Kourtney, have you seen this?" To which I replied "No, Mr. Elliott, I have not, what is going on?" I watched for a few brief moments and scurried to get the rest of the attendance to the office before 1st period was over.  

2nd period came and I went to my English class.  We sat and watched on tv as the plane hit World Trade Tower #2.  Horror struck our faces, tears filled our eyes, and grief filled our hearts.  Who had done this?  What was going on?  Why would they attack us like this?  We sat in silence for most of the day.  During English I got word that a plane had hit the Pentagon.  I welled up with tears, and ran to my moms office.  You see I had family that worked in that building and I wanted to know that they were ok.  My mind stayed on my family until I knew they were safe.  I grieved for those loved ones who didn't get that pleasant news that day.  I grieve for them still.  

English came and went and the rest of the day followed.  What I remember after that is a blur.  I do know that we didn't accomplish much work in any of my classes the rest of the day.  We sat and watched tv waiting to find out who had done this to our beautiful nation.  We watched first responders line the streets covered in dust and debris.  We watched our President promise that he would hunt down who did this and make them pay.  We watched a country stricken with grief come together and pray.  WE WATCHED, and we haven't stopped since.  

We saw friends and loved ones commit themselves to serve our county because it had brought our country together.  They are still doing it!  It's so incredibly unfortunate that it took this act of Terrorism to bring our country together and to unite this country in prayer.  We still need to be praying for this country, whether it be for the next President or for our leaders, we need to pray and never stop.  God blessed this great nation with so many things and opportunities, He still will if we allow it.

To those who lost a loved one during the attack or fighting the war on terrorism, I pray for you. You are in my prayers and thoughts daily.  To the service men and women who have given so much for our country I salute you and would like to say "Thank You" for allowing me and my family stay free.  To all the first responders and their families, thank you for remaining self-less day after day.

God Bless the USA! May we never forget!

Every year I remember a fine man, Lt. Charles Joseph Margiotta who was killed in the attacks.  Here is a link to the post where you can read more about him. 

Dear Crohn's,

Thanks for stealing my life and everyone involved in it. You see I no longer get time by myself because for some reason my husband is always too sick to watch our 4.5 year old so I can get away! It never fails, I can plan things for days in advance but it doesn't matter. I'm so sick of you! I don't even know what to do with myself anymore. I guess I should just give up all hope for getting much needed me time! In 5 years I won't even know what that is anymore! 

I'm experiencing caregivers fatigue! You see I not only take care of a 4.5 year old energetic little boy all day but most days I take care of a 33 year old man and our son! I'm beat, I'm worn, I'm tired, I'm depressed, and so much more. Half of the time I don't want to leave the house because I'm so damn depressed and frustrated. It's hard on our family to have one man down 80% of the time. It's a struggle for me because I'm always caring for Stephen. It's a struggle for Stephen because he doesn't understand why his daddy can't always play with him. It's a struggle for Colby because he feels so helpless in this fight! My family is super affected by this! If for one moment anyone ever thinks that someone's chronic illness doesn't affect everyone around them, you are WRONG! Everyone is left feeling helpless while trying to help the sick one cope! 

Crohn's, if I ever meet you in a dark alley somewhere, please know you will not live to tell anyone about my wrath! Beware Crohn's, we are coming for you and you will be DEFEATED! 

Life and Love

I love the life I live, being able to stay at home with our son and be with Colby when he needs me.  This last week he's really needed me.  He was hospitalized last Thursday and was released today.  From Thursday to Sunday everything seemed to be going ok, he was going to be set free from the bed on Sunday to come home and join his family.  In 30 minutes so many things went wrong and suddenly I found myself following an ambulance to our old home town doing 96 mph.  My husband called me in tears and he needed me at that very moment, he was scared.  Talk of him having heart problems had us all scared out of our minds, yet Stephen in his innocence had no idea why we were all bawling.  Today I relive that day as I drive him home from a 3 day stay at the hospital in Odessa.  I'm grieving, not because he's gone, but because of all he's had to go through.  He's had so many tests done that it's unreal, and it all could've been prevented.

We are glad to be home, with our family, and our pets.  Stephen is happy to be home.  He had a wonderful time with my sister, Aunt Sparkle, and got to enjoy his little life just being worry free.  It was good for him to have some Sparkle time!! She's good to him and loves him a lot.  She and I are very close so it's good that she and him are close as well.  I have not many words to this story, because all I want to do is cry.  Not cry because I'm sad, but cry because it's all over and I can finally take a huge breath!  I need to breathe.  I need to enjoy life with my husband and son because in the blink of an eye it could all be gone!!!

I'm just so thankful that we had friends and family to surround us with God's loving words and prayers.  God is good all the time!!!

Thankful

As I sit here alone in the dark while everyone is sleeping, I'm checking out Facebook. I know that one of my old high school friends has a son with Autism.  I check out her newsfeed to catch up on anything I might have missed and I see how involved her husband is. At that moment I am thankful for my happy healthy child. I know that God gives us different struggles in our children, I have seen that first hand. She is so patient with people and I know she must have that with her children as well. She's always been loving, caring and friendly to all those she comes in contact with. 

All of this took me back to almost 5 years ago when Colby and I were scared out of our minds. You see February 15th is a day I'll never forget, it's the day I found out I was pregnant. I was a mess, a huge puddle of a mess. I called Colby and told him we needed to talk, he said he could head home and we could talk or I could just tell him over the phone. I told him I was pregnant and he said "I knew that!" It was a shock to my system. We didn't know what we would do, all of our options came into play, each one of them eliminated over time until we came upon our only other option, to bring Stephen home. 

I think about those days often and when I see what other parents are going through with their children and the love they have for that very special blessing, I am thankful for the blessing God gave us. I have seen more of my classmates struggle with trying to have a baby while some of us will never know that struggle. I have seen classmates lose babies not long after they are born, yet I will never experience that pain first hand. They have handled it with more grace than I could ever imagine. God is working in my life everyday and it's during these times that I'm so thankful to have my children. 

As I was being a sad sack I heard "mommy, I need you!" coming from Stephen's room. God knew I needed to tell my little boy how thankful I am for him and how much I love and adore him.  I hope he never grows up and wonders if his parents love him. Tell your kids that everyday, multiple times a day, you can never say it too much. They may hate it when they get older but they will never doubt your love for them. 

My Dear Hubby

Today I'm at a loss for words and on the brink of tears. I'm tired of seeing my husband in so much pain and suffering. I pray everyday that God will heal him, I know my prayers are heard. He hears my cry for this to stop but yet He allows it to continue. He is working on us as a couple and as believers and we have barely noticed. I am drawing closer to Him. 

My husband has Crohn's disease which is an autoimmune disease. It's hard for him to live like this day after day wondering if what he eats will set it off. He's been in the worst flare ever since December 23rd with little relief. The Drs have finally gotten his meds all straightened out and I pray that we are on the road to remission. Only time will tell now that he's started the right meds. Colby has been on short term disability from his job since New Years Eve. I look at my husband many times a day but fail to notice a few things. I see a man who is worn, tired and has no strength to keep going sometimes, a man who sleeps more than the average person should. I see a man that keeps fighting for his family and doesn't give up, even when he really doesn't want to get out of bed. I looked at his hands a few moments ago and noticed how pale they are. It's not caused by the Crohn's but by the lack of life it has provided. He has not worked in several weeks which means those hard working hands of his have seen very little sun. He has no strength, no energy, and no drive to do much because of the constant pain in his belly. 

This disease doesn't only affect him, it affects our entire family. It affects how much time he spends with us because sometimes he goes days without leaving the comfort of our bed. There are days that we see him for a brief period of time and then it's back to bed for him. Stephen longs for his daddy but has come to understand this life we have. It's not easy on all of us and there are many days I cry when no one is around. Sometimes the nights are long because he's up and down all night due to this horrible disease, so he sleeps during the day and I sleep at nap time.  We do what we have to do to survive and make it.   It's not easy most of the time but with God by our side it's worth it. 

If your friend or loved one has a chronic illness please understand that it affects everyone around them. It affects where they go and how long they are gone. Their families are suffering as well. Please don't tell their family members or loved ones that they act out because they don't feel good. Yes, it does affect their actions and words sometimes, but we as a family have to live and deal with this illness. 

God will continue to see us through this difficult time!