Friday, March 31, 2017

a year of Crohn's Disase


Today marks one year since I began my Crohn's Disease journey. Naturally, this month has caused me to reflect a lot on the events that have happened in the last year; From the moments I wish I could remember to the things I can't seem to forget. I also think a lot about other people- the questions they ask me, and in turn, the things I wish they knew or understood. So, here it is. The crazy ramblings of a twenty-something year old with Crohn's Disease.

A few numbers about me in the last year: 
(Most of which occurred between March and June)

Over 100 blood draws
20+ injections
19 days spent in the hospital (not including child birth)
11 infusions
5 IV's (once 3 at one time)
2 colonoscopies
2 abdominal CT's
1 camera endoscopy
1 abdominal X-ray
1 abdominal MRI
1 PICC line
1 chest CT
1 leg CT
1 chest X-ray
1 ECG



Basically my insurance thinks I'm pricey. (And they are probably correct.) In the last year I have gone from taking 20+ pills a day (mixed bag of vitamins and medications) and an infusion every 6 weeks to currently 3 vitamins a day and 1 injection every 8 weeks. My diet has gone from feeding tube (via PICC line) to eating almost anything I want. I've gone from being severely anemic (borderline blood transfusion) to not anemic at all. Serious miracles you guys. 

 I had two episodes of excitement, one when they thought I had C. Diff (a highly contagious bacterial infection)- so everyone who came in my room had to gown up in protective gear from head to toe for DAYS (super funny considering the test came back negative), and the time they thought my PICC line had caused a blood clot near my heart. (Not so funny, especially when the words "I need a crash cart in here" were used).

I think it's important to remember all of this happened shortly after giving birth to an 8 pound baby, with a faulty epidural and a very unpleasant delivery. I literally thought I was going to die of sickness or pain. Healing from giving birth is bad enough, but having your intestines literally falling apart on top of that is just icing on the cake. (is it ok to use food analogies when you are talking about bowl disease?)

Once I started to get somewhat better I still had the joys of steroid side effects (panic attacks and a moon shaped face) to deal with. My hair also started falling out in clumps as a result of everything my body had been through. My body was covered in bruises from the multiple IV's and blood draws, made even more dramatic thanks to the blood thinners the doctors had me on. So if feeling like death wasn't enough, I also got to look like it too.



Sometimes l feel like I don't know myself anymore. My reactions to things and inner emotions are often different then I would expect them to be. But then I remember that what I have been through has changed me. I would like to think most of the ways are good, but some of the changes are a little harder to come to terms with. Mostly, I hate the flashbacks. I hate remembering what it felt like to be scared, trapped inside a body that refused to respond or listen. I hate the regret I feel for missing time with my kids. Even if it was just a few weeks, it still haunts me. That's time with both of them I will never get back. And then there is the fear of the future. Crohn's is a tricky disease like that. It's uncertain, unpredictable, and can never be cured. 75% of Crohn's patients will have at least one abdominal surgery in their lifetime, as well as an increased risk of developing colon cancer. I remind myself at least ten times a day that no one knows what is going to happen in their future (Crohn's or no Crohn's) and anyone can have cancer. I try to forget about the fear and anxiety and just live my life. Sometimes I am successful, other times not so much.

Overall, the last year has taught me that I am incredibly blessed. I have amazing family and friends, from those who live nearby to those I only see once a year. Each of you has a special place in my heart and has done so much to support me in the last year. Whenever I am feeling down I think of all of the amazing people I have the opportunity of knowing and learning from. I have crazy good doctors. Seriously- the thought of ever moving from this place terrifies me.

I can't tell you how many times a week someone asks me "how are you feeling?" or "how is your health?" And in return I generally say "I'm good." But really I feel like if I opened this Pandora's Box of emotions and medical explanations to someone in the middle of the grocery store, they would probably want to run and hide. So if you have asked me this question and you feel like I have given you an insincere answer, I'm really sorry. But sometimes I just feel like I don't even know where to start.

The truth is I really am doing well. I feel great most of the time, and I LOVE being off all the medicine. I do one injection every 8 weeks of a medication called Stelara. It's new to Crohn's and works to suppress two proteins in my body that trigger inflammation. Basically it just helps my body stop fighting against itself. So far it has been working very well and we are hopeful it will continue to do so. A few days a week I get headaches and feel tired, but really, who doesn't? Physically, my body has healed really well. Because my colon was in such terrible shape when we found the disease, it healed with thousands of pseudo-polyps. The healing part is good, but the polyp part is not so great. This makes it very difficult to determine if I were to ever develop a cancerous polyp. "Like finding a needle in a haystack" as my doctor put it. My doctor said sometimes they can go back down on their own, but if they don't heal in the next year or so we will probably have to remove a large part of my colon as a preventative measure for colon cancer. So fingers crossed they go away on their own! (I'm rather fond of my insides remaining inside of me).

A year ago I sat in a hospital bed looking on Facebook and Instagram (and all the other websites I waste my time on) and seeing (what felt like) everyone I know going on trips to Disneyland. I remember saying to Rob, "are we ever going to be able to do something like that, like take our kids to Disneyland?" I couldn't fathom in any part of my brain a world in which I would not only feel well enough to do that, but be able to do it without any restrictions (i.e. colostomy bag). And guess what? We were able to do this last month. It was a celebration of health and happiness for us and we had such a great time. It was such a miracle to be there.

So I guess a year later, I still have doubts. I still question things and get discouraged. I have bad days. But so does everyone else. God is so good you guys. I have been blessed with more healing in one year then most people could hope for in a lifetime. The future is uncertain, but I'm learning to love each and every moment that I have been given now.

My sister gave me a beautiful painting for Christmas that now hangs on our living room wall. Just thinking about it brings tears to my eyes. It's a picture of Christ healing a man as others surround him. The man appears to be pleading with the Savior, and in turn, the Savior is laying his hands on his head. I often think of that man. Not just of his blessing from a loving Savior, but of his role as a witness to those that surround him of the majesty, goodness, and healing that comes from God. There is no doubt in my mind that I am here because of Him. Each day of my life (good or bad) is a blessing and a gift, and I hope that I can remember  that and share it with others.




Thank you all for your kindness and friendship, and especially for putting up with me on this crazy journey. 
We love you all and are grateful for all of the many different ways you continue to support us.



***

Crohn's disease effects over 700,000 people in the United States each year. Each person is different. You can find more information about Crohn's Disease and Ulcerative Colitis at: ccfa.org. If you shop on amazon regularly (like me!) you can visit smile.amazon.com and choose the Crohn's and Colitis Foundation. Each time you make a purchase through amazon.com they will donate .5% of your purchase to the Crohn's and Colitis Foundation- which furthers the research toward finding effective treatments and even a cure. 
(Every little bit helps!)


Wednesday, March 1, 2017

February

February was such a good month! Be prepared for A LOT of pictures!
You know what I love about D.C? Spring starts coming in February. There is something so wonderful about 70 degree weather and blossoms right after January.

Here's a little bit of what we have been up to this month:

Charlotte LOVES when her daddy comes home. The instant she hears his voice she crawls toward him and gives him the biggest hug. I think it's my favorite part of the day too. Rob works so hard at school all day and still comes home with a smile on his face and time to play with the kids. He works late into the night in order to finish his homework. We love our guy and we are so lucky to have him!


She has turned into such a tease. I love when she puts her binky in different ways and chews on it.


February brought my birthday (definitely starting to feel old), and I got to hang out with wonderful friends and eat delicious food. It was perfect! As were these delicious cupcakes-- thanks Sara! Rob took me out to dinner in the city and it was so nice to be out without the kids. Thanks Bri for babysitting my munchkins!


Valentine's Day is one of my favorite holidays. It was so fun to give the kiddos Chocolate and a little toy, and we enjoyed take out PF Changs to celebrate. I had fun looking back through old pictures of Rob & me. It is crazy to think that this was the 8th Valentine's Day we have known each other for!
I love my Valentine's!





It was truly a day of love because I caught these two kiddos holding hands in the car for once instead of fighting!


James and I signed up for a Saturday morning art class at Michaels with Cohen and Beth.
These guys loved making little doggy Valentine's treat bags.


We spent a few days at the park, where this little mama has started crawling around. It means A LOT more dirt on everything (and sometimes in her mouth) but it's so fun to watch her explore.


 James has had a lot of fun with his friends at preschool class. This month I surprised them (and myself) by letting them paint. Luckily no paint ended up on my carpet!


This month we explored Oxon Hill Farm. James and I visited when he was little, and it was fun to go back. 
Cohen and Char check out some farm books:


Beth & Cohen at the farm:


the kiddos & me:


hay rides and mud slides:





piggies:


two of the cutest little friends I ever did see:


We also took Beth and Cohen to our favorite museum:







And here comes the Disney photo dump! 
Our trip got off to a rocky start when we woke up on Saturday morning to Charlotte wheezing. She was having trouble breathing so we took her in to the doctor. After a nebulizer treatment and being prescribed an inhaler we got the OK to go on our trip. She was feeling much better and we started on our 7.5 hour drive to Charleston, SC where we decided to stop for the night!


Unfortunately I don't have any pictures of Charleston because we got there late at night and left early in order to get to Orlando before the sun went down. We had told James the whole reason we were going to Florida was to go swimming so we figured we had better actually do it!


Both of our kids love the water and had so much fun!



The next morning we headed to Disney bright and early. We were trying to make it in time for the rope drop but missed it by like 5 minutes. Its ok though, we still got to spend the whole day there! 

Enjoying the Ferry Ride to the park:







Riding Winnie the Pooh:


these kiddos seriously loved the carousel!


A video of Charlotte's horse going very fast:



and the moment that inspired us to take this trip in the first place:
James absoutely loved seeing his best friend in real life. It made it all worth it!
Pooh kept pointing to james little pooh and then to himself and then he gave it a big hug!


Hopefully this video works:


Charlotte was making everyone laugh when she was loving on Tigger:


Teacups!


Parade:


Meeting Mickey & Sun hat wearing- Charlotte






More parades!


Dumbo play area-
one of my kids favorite things!


riding Dumbo:


Disney is so magical at night!
James loved the fireworks and Char was clapping after them!




Giving pooh bear a shoulder ride:


Defeating Aliens:




Racecars with my man- he is one crazy driver!



A sleepy Char (one days she slept for almost 4 hours in the stroller!)
and the Jungle Cruise- one of my favorites!







and our last ride was of course, winnie the pooh.
James requested it before we left the park




Our second night we had a character dinner with Pooh and friends.
James and Charlotte both loved it!



Charlotte kept petting poor Eeyore so hard that he nearly lost his head. The poor guy had to back away from her! haha.




We were so sad to leave Disney (and our vacation!). We can't wait to go back soon!


Charlotte is 11 Months old now!
She can:
-crawl, pull to stand, walk around furniture, push furniture
-stand on her own, take a few steps
-clap, wave, blow kisses
-says mama, dada, buba
-has 5 teeth
-loves music, dancing, and food


Things we are looking forward to:
- Charlotte's first birthday!
-a visit from grandma and grandpa
-springtime!