Life/Health Update

It has been a while since I last posted. Life has been barreling full steam ahead and I have been cherishing every moment in preparation of my first Crohns surgery. I knew this would eventually happen but I never imagined I would be having surgery with a 13 month old at home. I am feeling prepared and ready to get this behind me.

 

I feel like Camden knows something is about to be different because he has been super clingy the past week. We have a game plan for him and my prayer is that he wont even notice things are different. I will have to be in the hospital up to a week after the surgery so we are thankful that both sets of grandparents are able to help us out.

 

I am starting to get anxious about the surgery. I know this is pretty routine for a Crohns patient but it doesn't make it any easier. My prayer is that this will put me in remission so that I can enjoy my life without fear of ending up in the hospital every 6 months due to a flare. I know that Gods got this and in the end this will be a distant memory.

If you read this before Tuesday, March 5th, say some prayers for me.

First Time Mom and Crohns Disease

 

Two months before we got the call to get Camden, I was battling a Crohns flare in the hospital. It's not something I broadcasted as I didn't want to take a chance of ANYTHING messing up the adoption. Truth be told, I was terrified. I'm not even sure if that is something that could have messed up the process because we were very honest with our social worker about my health issues. Crohns is not something that could prevent someone from adopting but I wasn't sure how it would look to be in the middle of the process and in the hospital.

That flare terrified me as I knew I was getting closer to being a mom and wasn't sure how in the heck I would be able to care for a child and care for myself. I barely had the energy to finish out a work day, let alone do all of the mom things once I had worked a full 8 hour day.

To my surprise, being a mom with a chronic illness has not been as hard as I thought. My health has done a somewhat decent job of letting me be the best mom that I can be to Camden. Now don't get me wrong, there have been some very tough days. Back in April I went through a flare and was in the hospital for 3.5 days. That was brutal and was my toughest stay because I missed my baby so much. I remember laying there and sobbing because I kept thinking how unfair it was that my body was taking me away from being a mother. Then I quickly realized it could always be worse and while I may have been away for 3.5 days, I bounced back and Camden was well taken care of the whole time. The hospital even let him come see me for an hour and that gave me the boost I needed to get better and go home.

I think the biggest thing for me to succeed as a mom that battles a chronic illness is to listen to my body. When I'm tired, I rest. When I need a monitor free night, Craw takes the monitor or Camden goes and stays with his grandparents. Craw plays a HUGE part in my success as a mother. He is a wonderful dad and he can quickly take the reins as needed. Having an awesome support system has been key because my body is able to get the rest that it needs. Another huge part has been our parents. During my last hospital stay, my spirits were down and I mentally was in a very dark place. It was obvious that I needed Craw with me and both sets of grandparents stepped up to the plate and took care of Camden. In fact, Camden probably didn't even notice we were gone he had so much fun with them. It was nice knowing I could focus on my health and my baby was being well taken care of the whole time.

Another big adjustment that I have made is saying NO. I rarely said no before getting Camden and now the word NO is one of the most important words in my vocabulary. But seriously, I hate the feeling of letting people down but sometimes I must say no in order to listen to my body and be a good mom. My child and my health will always come first when it comes to events/activities with friends and family. Thankfully, my support system FULLY understands this and I'm never questioned if I need to leave an event early or stay home from hanging out one night.

I told Craw the other day that while I hate Crohns and wish so badly that I could get to a state of remission, we wouldn't have Camden if it weren't for Crohns. My health was one of the biggest reasons we pursued adoption when we did. All this to say, there is always a blessing in every circumstance and Camden is my blessing. I'm so thankful that God allows me to be his mama and that my health has not stopped me from being the best that I can be every single day.



Crohns Disease

Crohns Disease. AKA my intestines hate me.

I was diagnosed with Crohns Disease in September 2015...nine months after we got married. I had been really sick for a couple of years and doctors had a tough time figuring out what was going on. I quickly realized that the biggest advocate for my health was ME. It took some trial and error and switching doctors but the day I was diagnosed was actually a happy day because it no longer made me feel like I was going crazy.

I've had 4 hospital stays in three years, my most recent being January 2017. The hospital stays are basically for me to receive IV steroid treatments and pain meds while I go on bowel rest meaning clear liquids only.

My body has rejected 3 medicines so far and we are about to try a fourth one. This is pretty typical for chronic diseases as it takes a while to figure out what works as all people are different. For the most part, I have been managing the symptoms well for the past two years. I definitely have days where I can tell my body is flaring but I really try to listen to my body and give it what it needs...that being a bland diet and rest!

I have the BEST support system in the world. Craw has been my rock. I often say that dealing with a wife with a chronic illness is not what he signed up for when he married me but he quickly reminds me that it is exactly what he signed up for. He's seriously the best. He never complains and does whatever it takes to make sure I'm receiving the best care possible. My parents have also played a huge part in making sure I know I'm not alone in the journey. There were times I could see myself falling in to a depression after each hospital stay and they made sure to support me. Plus, mom makes the best chicken and rice which is PERFECT for a bland diet. My in-laws, friends, and church family have also been a huge support to me. Crohns can be a very silent disease as a person can look fine from the outside but feel like they are dying on the inside. That can be hard for people to understand. My friends quickly realized that there would be times I may have to miss events on short notice and they completely supported me.

Living with Crohns is definitely a roller coaster: emotionally, physically, and mentally. While Crohns does play a big part in my life, it does NOT define me. I am so thankful that I am able to live a normal life as there are people that deal with much worse.

Life Lately

It's been a while since I have done this but there has been a lot going on lately.  Here are some of photos to recap our life lately.

Finally got my glasses and decided to rest my eyes from contacts for about 5 days.  This was last weekend when we met Crawford's family at Buffalo Brothers in Wake Forest.

This one is a big one.  I was scheduled for another infusion about 3 weeks ago.  I took off work for the afternoon and drove to Raleigh and was excited because my body was begging for medicine.  I had come down with a sinus infection that week and had just been put on an antibiotic.  The sinus infection sent me in to a flare and it had been a bad day/week.  I get to Raleigh and as soon as I sit down, the nurse asks if I am on any medicine.  I tell her about the antibiotic and she immediately had this look on her face.  She told me she would be right back and, low and behold, she came back and said I couldn't get my infusion BECAUSE I was on an antibiotic. Learned something new that day.  You would have thought they would have told me that little bit of information when I first started my infusions.  I was NOT a happy camper and had to wait a week before I could get my infusion.

Crawford stepped through our ceiling while we were trying to get our Christmas decorations down.  Thankfully, we have GREAT friends and Corey volunteered his time to come and help Craw patch the hole.  It has now been about 3 months since he stepped through the ceiling and it still looks like this.  Let me just say, I married a major procrastinator BUT at least he took it upon himself to fix it versus us paying someone $300 to fix it.

Superbowl Sunday, a bunch of the girls got together and we went to Artful Expressions in Rocky Mount.  This is a little bit different than Wine and Design as each person can pick what they want to paint.  This lady runs her little business right in her back yard and we had so much fun.  I loved the way my flower turned out and it is already hanging on my front door.  

**Disclaimer: I am not as talented as this picture makes me look.  All of the details were added by the owner.

Our Panther flag came in and I think someone else likes it just as much as I do.  I can't wait to fly this flag HIGH come August.

One of my best friends dad was recently diagnosed with brain cancer.  I know there are many people in the world that are going through difficult times but this family has been hit HARD over the past 1-2 years.  Maggie lost her father-in-law about a year ago to cancer, she has a young cousin fighting breast cancer, her dad has already beaten lung cancer, and now this.  Mr. John is like a second dad to me.  Something that he LOVES to do is make things from scrap wood.  His newest obsession is these beautiful crosses.  I am pretty sure every single woman in our church has one.  He even made one for all of the nurses he sees each day while getting radiation.    I am pretty obsessed with my spring table.  It not only makes me smile every day when I walk by but it also makes me stop and say a small prayer and reminds me that "God is God and only God is good at being God."  Praying for complete healing.

Papa Gregg

My dad is my hero. Plain and simple. Always has been always will be. I look up to him for so many reasons. My dad was 1 of 4 kids and his father died of a massive heart attack at the the young age of 45. To say that they had it tough at times is an understatement. However, my grandma did everything she could to provide and helped pave the way for my dad to go to college. Long story short, he went to ECU, graduated with a BS in Business Administration, started a successful career for a good company, retired at the age of 53, only to start completely over with a new job. He is the definition of success to me! I knew when I graduated college I wanted to invest my time in to a company that I could see myself retiring from because I loved that he retired early and then started over again. He also gives great advice and has been my rock since the day I was born. Needless to say, I love my dad and he is my hero.

My dad is one of those people that I would consider a work out guru and a health freak. He is probably shaking his head if he reads this, but it's true. He loves to exercise. He is what I have always considered the definition of healthy. I have never ever worried about him a single day of my life...that is, until Monday June 10, 2013.

I will never forget that day. I was at work when one of my childhood friends that I work with asked me to walk with him outside. He then told me that dad had passed out while working out at the gym and was going to the hospital for further tests. I'm a panicker so I immediately asked if he was okay and Daniel said yes. They were just going to run some tests but he would drive me to the hospital. I thought that was a little odd if all he did was faint but I agreed to let him drive me. I called Crawford on the way and asked him if he could come to Wilson since I wasn't sure what was going on. 

On the way to the hospital, Daniel calls his mom who is an ER nurse. I will never forget that call because I felt like he was talking in code. When he got off the phone, I started asking a hundred questions while also losing my breath (such a panicker and the exact reason I needed a driver). He told me that they were still running tests but that I needed to go to the family console room when I walked in. I'm no medical expert but I knew something was very VERY wrong when I heard those words. I started having a panic attack and somehow Daniel managed to calm me down.

When we got to the hospital, there were no parks so Daniel dropped me off. I walked in and went to the desk and I was surprisingly calm. I saw my nanny at the desk and I walked up just in time to hear her say "you have to let me back, he's had a heart attack." **Insert me LOSING it.** I lost it so badly in the middle of the waiting room the nurse quickly ushered me to the family console room and that is when I saw my mom. I remember seeing about 9 people in the room, mostly men, and they all turned their backs to me and were sobbing. I remember Daniels mom telling me that they were doing everything they can to save my dad but I had to pull myself together.

 My mom then told me that dad had been working out at the gym when he just collapsed. He had suffered sudden cardiac arrest (not a heart attack) and was clinically dead for 5 minutes. Miraculously, 2 ER nurses were working out near him and immediately started CPR. They did CPR for 4 minutes until the ambulance arrived. They then shocked him twice before trying to shock him one last time. On the last shock, he gasped for air. God is GOOD! Once he came to, he became combative because he didn't know where he was. They had to medically sedate him and he stayed in that state for about 24 hours.

By the time news spread through Wilson and church, there were about 50 people that showed up at the ER. I find that incredible. We got to see dad for a few minutes and I will never forget that moment. He had a black eye from the fall and he honestly looked dead. He was intubated and that is when mom made the decision to have him transported to Wake Med.

When we got to Wake Med, he was starting to wake up. He was intubated so he couldn't really move but he started communicating with us by his hands. Mom stayed at the hospital for an entire 5 days, never once leaving him. They ran tons of tests and he did have one major artery that had a blockage but they were able to put a stint in. I read that only 5% of people survive cardiac arrest. That is astonishing. It is also crazy that it can hit any person at any time, no matter how healthy. Dad comes from a long history of heart problems and unfortunately, you can't escape heredity problems.

Dad was released from the hospital on Friday, 5 days after his cardiac arrest. He was practically a brand new person- minus the black eye. He has to limit his physical activity levels but he has not had any other issues. That week was by far the hardest week of my life. I saw first hand just how precious life and loved ones can be. We are never guaranteed another day. I fully credit God for saving my dads life that day.

So there it is. My dads story and one of the many reasons why he is my hero. 

Health Update

I am going to keep this post short, sweet, and to the point and provide an update on my health from my post in October.  I DONT HAVE CROHNS!!! Praise God! My DNA tests revealed that my dna doesn't have the normal signs of a person with crohns. They have diagnosed my "condition" as Non-IBD Colitis. I am on the same medication as a person with crohns since my symptoms are the same. My doctor basically explained it as I have the same symptoms, mine are not chronic. All I know is that the medicine has done WONDERS for me and I can't go a single day without it. If I forget to take it, I feel the effects immediately and I get extremely sick.  While the idea of being dependent on medication is not the best, it's nice to finally feel normal and have some energy back in my life. Thanks so much for all of your prayers. I felt perfect for the wedding and didn't have any issues the week of the honeymoon. To God be the glory!

Highs and Lows

It has been a little over a week since I last posted.  To be honest, life has been pretty chaotic in the last two weeks.  I debated on whether or not to even type this post but figured the whole point in me starting this blog was to write about my feelings before the wedding as well as my life as a Bolton.

For the last 2 years of my life, I feel like I have been constantly sick.  Crawford actually tells people that I have been sick for the last 4 years because when we first met, he thought I was just making up a random sickness just so we didn't have to hang out.  After a colonoscopy, endoscopy, gall bladder surgery, appendix surgery, and diagnosis of a peanut allergy and wheat intolerance, I just figured the wheat was the culprit for making me feel bad and I should be in the clear for no more surgeries.  The only thing that did not make sense to me was that not all wheat products hurt me but I just went with it and assumed that every time I felt sick was because I was not eating the right foods.

Fast forward to August of this year.  I randomly developed an extremely excruciating abdominal pain that eventually hurt me every time I used the bathroom (TMI, sorry).  After seeing my regular doctor, she referred me back to my GI doctor.  I went and saw him and his NP and after an examination, we figured out what was wrong and they gave me some medicine and about 2 weeks later, the pain was gone. 

Then, one day about 3 weeks ago, the pain returned.  Except much MUCH worse. I knew something was not right.  I made another appointment with my GI and after that appointment, he stated he wanted me to come in next week for a colonoscopy.  Not going to lie, being 3 weeks away from the wedding and having to deal with a health issue is tough.  I remember breaking down that day because 1. I didn't feel good 2. I knew I would have to meet my deductible for the procedure and I already had so many wedding expenses 3. I had way to much on my plate to have to worry about this and 4. I just needed a major cry.

I immediately texted my prayer warriors to pray for me and they gave me the calm and reassurance I needed.  I went in for my colonoscopy last Thursday which was 2 weeks and 2 days from the wedding.  After waking up from the colonoscopy, the doctor told me that my colon and small intestine was extremely inflamed and were covered in ulcers.  I also had an extremely high white blood count.  He stated that he could not confirm anything until the pathology results came back but from the looks of it, he was pretty sure it is Crohn's disease.  My mind immediately went in to overdrive and I was flooded with so many questions. 

What does this mean? How long will it take to find out? What is Crohn's? What types of treatment will I need? Can I still have children one day?

(because I am about to get married and kind of need to know that)

He told me that he did not want to answer any of my questions until we confirmed whether or not it was Crohns and he scheduled my follow-up appointment for 1 week later.

My mom went with me to my appointment yesterday. I felt very prepared because I had done a lot of research and I really just wanted to get treatment so I could start feeling better.  Let's just say that appointment did not really go how I expected it.  He basically told me the test results were very generic and he still did not know 100% whether or not I had Crohns.  The results showed that the inflammation was caused from either Crohns or taking too many NSAIDS (ibuprofen, BC powder, motrin, etc).  I don't take NSAIDS so I told him it couldn't be that.  He then told me that the only way to confirm that it is Crohn's is to have a DNA blood sample sent off to the lab.  That will take about 3 weeks to get the results so he said he wanted to go ahead and start my treatment because he is pretty sure it is Crohns.

So here I am.  Still don't know 100% what is wrong with me but I am getting closer to some answers.  Today was my first day of taking my steroid treatment and I can already tell a major difference.  I have been pain free all day. 

In the last two weeks, I have felt so many emotions that have at times overwhelmed me.  Regardless of what the tests show, I know that I am loved and I have the biggest support system imaginable.  If it turns out to be Crohn's, while it is a chronic disease, it is treatable and for that, I am grateful and know that the medicine that I am on will help me feel better. 

I debated on whether I wanted to type this since we still don't know for sure but I want to be able to look back and remember this time in my life.  I would also like to give a major shout out to Crawford and my parents.  Without their love and support, I would be a mess.  We are now 1 week and 2 days away from the wedding so I am asking for your prayers.  Please pray that the medicine will continue to work and that I will be feeling my best for the day that I have anticipated since I was a little girl.

-AAO