Sunday, June 26, 2016

Questions & Reflections

I've started this post 129,459,696 times in my head but I can't ever seem to gather my thoughts. They are swirling around my brain in one big fat mess, and putting them into coherent sentences has seemed overwhelming. So, with that in mind, I hope that what follows accurately portrays my thoughts and feelings while also making sense to the rest of the world.

The last two months have been terrible. You know that book? Alexander and the terrible, horrible, no good, very bad day? That's totally how I would describe March-May. Well, the parts of it I remember anyway. My brain has done a pretty good job of blurring most of it, which truly is a blessing. The other day when I was looking back on pictures from those months I started crying. It brought all of the emotions and physical illness back and I just feel so blessed that most of the time I don't recall all of the details.

Throughout this experience i have had so many people tell me that they appreciate my honesty and transparency in my posts. I feel like my life is generally an open book, and if someone asks me a personal question I am usually totally fine sharing. But for some reason this update has felt more personal and I have been hesitant to share it. But, to stay true to my journey thus far, I want to continue to be open in my updates. 

Most recently I had an MRI-E. Which I posted about previously. When I went to my follow up appointment with my GI she said the results were miraculous! The MRI showed no inflammation in any part of my intestines. This means that for now, I am finally in remission. This was such great news to hear! It truly is a testimony to me of the power of prayer and fasting. I am so grateful for the many, many prayers and fasting that has taken place on my behalf. We went from dead colon, eminent surgery, to perfectly healed colon and a positive response to treatments. I don't believe that happened by chance. I'll admit my faith was wavering and I'm grateful for the people in my life who's faith was strong enough to help me through. 

I get a lot of questions now, and I feel like more than one person probably wants to know the answer, so I will just post the answers here. 

How are you feeling? Do you feel better? You look better. 
-I think the word "better" is generally used to  mean all the way fixed or back to normal. Which is unfortunately not the case. I am better in the sense that there is improvement, but I definitely am not back to normal. I asked my doctor why this was. I mean, if the MRI showed no disease, why do I still feel terrible sometimes? She laughed at me and told me, "you still have the disease! You were extremely sick and unfortunately that will linger for awhile." I still have moments where my stomach will cramp horribly (I've learned that ice cold water and ice cream are unfortunately triggers for me), I still don't go to the bathroom like normal people (I often joke that my life is a fine balance between miralax and Imodium), I still get tired frequently, when I get stressed I immediately start to feel cramping and a strange burning feeling in my stomach, my stomach is extremely sensitive to outside pressure so I find myself wearing lose fitting clothing and unable to hold my kids for too long, but worst of all has been coming off of the pain medication. 

Because I was in so much pain in the hospital I was put on some strong pain medications. One I took twice a day and the other I took every six hours. I weaned off the the second medication without too many side effects, I had some nausea and headaches but that was it. Stopping the first pain medication has proved to be a little more tricky. It's withdrawal symptoms lasted approximately two weeks and included the following: nausea, insomnia (at one point I drove to Safeway at 3 am to get some zzzquil- unfortunately that stuff wasn't strong enough 🙄) headaches, crying spells, yawning (weird), phantom pain, tremors, and indigestion. Although I am extremely grateful pain medications exist and were able to make me more comfortable while I was sick, coming off of them has been far more unpleasant than I would have imagined. I have gained a new perspective for people with addictions. It has been such a struggle physically and emotionally. I had to keep telling myself the pain I felt is fake and that is really hard to do when you hurt, can't sleep, and have to lay in bed with a bowl next to you just in case you toss your cookies. The crying spells have been difficult as well because I know there is no reason for me to cry, but i can't stop. But I made it through and the only pain medication I take now is Tylenol when I need it! 

What medications do you take?
-now I take the following: Imuran pill (immunosuppressant) once a day, bentyl (stomach cramping suppressant) four times a day, Budesonide (a corticosteroid used to treat Crohn's-it doesn't have all the nasty side effects that the prednisone had) once a day, probiotics twice a day (900 billion bacteria!!) and my remicade infusion every six weeks. On the side I take Pepcid to protect my stomach from the Budesonide, Tylenol occasionally for pain, and a vitamin with iron to help the anemia. These will be my medications for the next six months. 

Generally, people with Crohn's are only on one treatment medication, but because my disease got so bad I take three. Over time we will be able to drop the Imuran and Budesonide so I will just do the remicade infusions. The infusions will drop to every 8 weeks and they will be life long.

What is your diet like?
- my doctor has opened my diet up so I can eat whatever I want (in theory). I am learning what I can and cannot tolerate and it's a slow and annoying process. So far I've learned that salad is out as well as a lot of bread in one sitting. At least for now. I'm trying to slowly work fruit and veggies back into my diet but it's difficult. I still avoid red meat, seeds, nuts, super spicy foods, raw veggies and berries. I can only eat about half of what I used to and sometimes I just don't eat at all because the prospect of getting sick is just too much. 

When will your face be back to normal?
-this one cracks me up. Unfortunately, probably not for a few more months. Trust me, no one is more ready for it to go back to normal than I am. (As well as the nice bump on my neck called a "buffalo hump."

Will you need surgery?
-not as of right now. It is always a possibility for the future- as it is for all people with Crohn's disease, but hopefully not! I do still have the fistula though and that will have to be repaired surgically if it doesn't heal on its own in the next couple of months.

Do you have Ulcerative Colitis or Crohn's Disease?
-my doctor is fairly certain I have Crohn's. In my research I found that not having a definitive diagnosis is actually very common. Or sometimes the diagnosis will change over time. In two weeks i will do a video capsule test where I will swallow a little camera and it will take pictures of my insides. If it shows any scars or sores in my small intestine then it will for sure be Crohn's. If it doesn't show anything it's more likely to be UC but we still won't rule out Crohn's. So for now, we just call it Crohn's and treat it like its Crohn's. 

I am amazed at all of the things I have learned in the past two months. I've been thinking a lot about trials and why we have them. Surely the Lord could prevent such terrible things from happening to all of us, but that's not the case. We are each here with our own set of struggles to navigate through. The last three months have undoubtedly been the hardest of my life, but I am a better person for having experienced them. Our Heavenly Father allows us to have trials to refine us, to open our eyes and soften our hearts to become the person He needs us to be.

 I've been thinking a lot about Job and Joseph of Egypt. Both experienced trial after trial. An old seminary teacher of mine put it best when he said, "I've always been inspired by the story of Joseph of Egypt. Each time he succeeded he was dealt a difficult setback. How easily he could have turned against God and blamed him for allowing such horrible things to happen to him when he was trying so hard to do right. Instead he trusted that the Lord had a greater plan. Each difficulty moved Joseph a step closer to where the Lord needed him. But not only that, his difficulties had another purpose. They made him into the type of person that could see what the Lord needed of him when he got there." 

My trials pale in comparison to what a lot of you struggle with, but I know they are molding me and humbling me to become the person the Lord needs me to be. My heart has been softened  so I can more readily feel empathy for others, my eyes have been filled with faith to see the Lord's plan and not my own, and my mouth has been opened in gratitude and praise for Him. 

We all have trials. We all have moments where we wonder if there is even a God in Heaven who even cares enough about us and our seemingly insurmountable trials. I assure you He is there. He listens. He knows you better than you know yourself. His only desire is to bless you beyond measure with heavenly blessings. But first, you must become the type of person who can see those blessings. I'm so grateful for trials. Not because they are fun, because quite frankly, they stink. But I know each one strengthens my relationship with my Father in Heaven. Each one opens my eyes to His blessings and His plan for me. I know He loves each of his children individually. I assure you He hears you. Keep pressing on. Don't surrender. Endure to the end. Blessings beyond measure await you. Paul said it best when he said, "I have fought a good fight, I have finished my course, I have kept the faith." (2 Timothy 4:7). 

President George Q. Cannon once taught: “No matter how serious the trial, how deep the distress, how great the affliction, [God] will never desert us. He never has, and He never will. He cannot do it. It is not His character [to do so]. … He will [always] stand by us. We may pass through the fiery furnace; we may pass through deep waters; but we shall not be consumed nor overwhelmed. We shall emerge from all these trials and difficulties the better and purer for them.”

Sunday, June 5, 2016

Charlotte's Blessing

Today was a special day in our family because our little Charlotte received a name and a blessing from her daddy at church. She was named Charlotte Adeline Starling on the records of the church and was blessed with many beautiful blessings. A few that stood out were:

to be a light to those around her
to be an example to her family
to receive all of the sealing covenants necessary for salvation
share the gospel with others
know, understand and follow the plan of salvation
prepare the world for the second coming of Jesus Christ

Charlotte's blessing dress was made out of
left over lace and buttons from my wedding dress,
I wanted it to be really special for her

Charlotte's shoes were hand made by my friend, Nicole.
She is so talented and the shoes were absolutely beautiful

Our little family

Grandma and Papa flew in for the weekend for the special occasion

We love you sweet baby Charlotte!

Friday, June 3, 2016

The best news ever!

Today was my MRI-Enterography. This is a test that uses a powerful magnetic field, radio waves, and a computer to produce detailed images of the small intestine which helps my doctor check for inflammation, blockages, scarring or strictures.

I had to arrive at the test 90 minutes early and drink two huge barium drinks. They were SUPER nasty and it took all of my strength not to throw them up. They seriously are giving the pregnancy glucose test a run for its money!

After I finished the drinks I got inside the machine and we spent about 45 minutes taking pictures. In the middle of that I was given a shot to slow down my intestines so the barium didn't pass too quickly and an IV with contrast fluid to make sure we got the best images possible.

It really was not a fun day and they sent me home with no information except that my doctor would get the results on Monday. To my surprise, my doctor called at 6 pm this evening and told me the best news ever.

No strictures. No blockages. No signs of inflammation in the small intestine. 
And best of all, healing in the colon!
She says the Remicade treatments are working and we may have avoided surgery-
We will continue to do Remicade treatments every 6 weeks, and I am so relieved!
We still can't rule out the possibility of Crohn's Disease, but this does indicate that its more likely to be Colitis.

today is the best day ever.

April & May

Although I was updating the blog with Crohn's and UC stuff throughout April and May, I left out all the parts of what we were doing while we weren't at the hospital or dying on the couch. 
(It wasn't much, thus the two months are lumped together!)


Miss Charlotte turned one month old!

She's just the cutest and we love her so much!

Grandma came back to visit us and help while I was in the hospital,
thank you to the world's best mama!

This guy was very excited to be a big brother! He loves to help get Charlotte's "gummies" (binky), "nappies" (diaper), and burp cloths. He's the best!

While I was in the hospital my dear friend, Nicole, stayed with my kids.
She is such a sweetheart and took James to the zoo with her boys one day.
How she took care of four kids, ages 3 and under, I will never know. She even came to the hospital in the evening to hold my hand and cry with me. She's the best- and that's why we have been friends since the third grade. I would be so lost without her and I am so blessed she lived close enough to come and help.

Miss Charlotte got to have sleepovers with her {almost} birthday twin, Sephora.
Huge thank you to Auntie Sarah & Uncle Fred Michael for loving on my baby while I was sick! Most people would run at the thought of taking on another baby when they just gave birth, but Sarah took Charlotte multiple nights and loved her just like she was her own baby. She's incredible. Thank you!

James got to come visit momma at the hospital a few times for dinner and ice cream dates, he also enjoyed our walks around the hospital and playing on the escalator! 
(Fun is very limited in the hospital for two year olds!)

James has loved hanging out with his friend Luke! They have gone on so many adventures from the library, to the soft room, the park, walks, and playing at home! He asks me every morning if he can go "play with Lukey today?"
(Huge thank you to Kamae for taking James on so many adventures!)

At home momma and baby Charlotte did A LOT 
of snuggling and recovering while James was out on play dates!


Miss Charlotte turned 2 months old!

James got to go play at the park with Robert and Audrey-
she is such a sweet visiting teacher and James loved going out with them.
Thank you!

 James got a new "big boy" haircut!

James drew this picture and told me it was of him and baby Charlotte.
I love it!

On the day we moved, my sweet friend, Kelsi took James with their family to the Shenandoah Caverns. It was so helpful for us to have James out of the way while we were moving and so fun for James to get to play with his friend Jayson one last time before they moved.
Thank you, Kelsi!

I got my third Remicade infusion. I'm so not loving this steroid face and I feel hideous in every single picture I take, but I've told myself I can't let it keep me from documenting this part of our lives. So yes, I'm well aware that I look terrible, but this is what our life is right now and its ok!
 It will go away eventually!

Poor Rob had to sit and wait with me- it took almost the entire day!
(Huge thank you to Amy for watching both kids every Wednesday in May to let me rest or go to treatment! The kids LOVE her and James is always asking to go play with Amy. She has blessed our lives in so many ways these last few months- Thank you!)

James got to go to the park with his friends from Church!
(Thank you to Annie & Brandi for playing with James!)

I got to have a goodbye brunch with Nicole and Kelsi.
My two best and first friends here in DC moved in the same week! It was so sad and I will miss these ladies so much! We all have boys the same age and it was so fun having them play together.
Good luck in Dallas and Alaska!
We love you!

We moved! Here is our new house!
Our incredible Relief Society packed our entire apartment and the Elders Quorum moved us.
Our sweet Relief Society President even cleaned my entire old apartment by herself so I didn't have to do it. You are all so incredible, thank you! 

This girl. So much love for her!

For Memorial Day we tagged along with our friends,
 Sabrina and Jordan to visit Arlington Cemetery. 
This was one of my first outings and I was so proud of myself! I walked around for a good hour in the heat and the humidity! It was so beautiful and such a nice way to start off Memorial Day weekend.
(Rob was studying for finals and didn't come with us.)

On Memorial Day I convinced Rob to go out to breakfast. We were out the door and at Panera with both kids by 8 am. I would say thats pretty impressive!

Then we went and bought a new car! 
We needed a bigger car and found one we liked.
This is our new (to us) Kia Sorento!

We finished off the night with a BBQ with some of our friends!
It was such a fun Memorial Day and I felt well all day- a miracle!

My dinner dates at the Olive Garden
(Thank you to the Peers family for the gift card! It was a special treat for us to be able to go out to dinner and a huge relief for me to not have to make it!)

Although April & May proved to be some of the most trying months in our lives, I cannot express in words how blessed we have been. People in our ward signed up each day to take James for a few hours so I could rest. It was such a huge help and I am eternally grateful to each of those people for their efforts. James got to go to parks, the library, taco Tuesday, the soft room, play with friends, go to nature centers, and even swimming! I felt so bad when I got sick and all he could do was watch TV all day because I couldn't take care of him. The ward stepped in and made it such a fun few months for him. We are so grateful for each of you, thank you!

I couldn't have survived these last couple of months without all of the friends and family who have sent kind notes, surprise gift packages, books, money, groceries, baby supplies, etc. I am tearing up just remembering; visits, phone calls, and hugs all went such a long way to helping me feel better. It is so incredible to me how everyone helps do what they can, and together all of you have filled each gap or need in our lives these last few months. Thank you for everything, thank you, thank you!

Thank you for blessing our lives in so many ways and helping me have these two happy, healthy, children. They are what matter most, and thank you for keeping them that way.
I seriously couldn't have done it without a single one of you!

We love you all!