Chapter 24: Update on Treatment Plan

So many people have helped us the past couple of months with meals, helping with Will, praying, sending encouraging words of hope, and just lending a listening ear.  It's amazing what a listening ear can do for the soul, and I have so many people that listen well.  Thank you to each of you!

Here's an update .... <>

My ulcerative colitis flared up....badly.  I think I lost about 20 pounds total in a month.  We were doing Whole30 at the time and cutting out grains and dairy, so I know that contributed to the weight loss (in a good way), but losing 20 pounds that quickly really took a toll on my body and energy levels this time.  Just not the way you want to lose that much weight.  And, I'm not getting younger. Ha. I think each flare gets easier in some ways (because I know the drill, I know what to expect, and I can advocate what I know will need more easily from experience), but it gets harder on my body in some ways.  And this was my first flare-up as a mama where I just really didn't know some days how I would keep Will entertained all day (answer: TV, DVD's and Play Doh....sometimes you gotta do what you gotta do! Grace.)

My symptoms always calm down fairly quickly once I am put on prednisone.  My doctor also has me on suppositories every night to help with the inflammation. This disease is the most humbling thing....  February was a rough month because of the side effects of the prednisone.  I exchange horrible diarrhea and awful cramping and stomach pain for a case of the CRAZIES.  My brain literally cannot process information, I'm constantly on edge and impatient, always about 1 minute away from crying, I have a hard time sleeping which then adds to the anxiety, I retain fluid and my face gets puffy.  If you've ever taken steroids, you know what this is like. It's just really rough.  Don't get me wrong....I am thankful for the relief for my stomach.  I truly am, but Prednisone just does not sit well with me.  I did not get much sleep in February....

Will's asthma kicked up this month too, so there were sleepless nights due to coughing and him being awake....and then after the third night in 10 days that he was up from midnight to 4:00am throwing up, we took him into the pediatrician.  She is fairly certain he has acid reflux.  Soooooo, lots and lots of sleepless nights on top of one another.  I know the enemy was just getting us while we were down.  I won't lie, it was rough. Poor Will was a trooper. But it's tough to miss so much sleep and watch your kiddo struggling why you yourself are struggling.

So when it came time for a treatment plan, my GI doctor here recommended we increase my medicine even higher (the infusion treatments that I currently receive monthly).  I knew when I went to Mayo in 2013 that my doctor there advised against ever increasing the dose, because it's just a signal that your body has begun to create antibodies and a change must be made.  Over the past three years, my doctor here increased my dosage 3 times, so when he wanted to do that this time my thought was "ENOUGH!!"  So, my doctor at Mayo gave her recommendation to switch to Humira, which is a similar treatment but different enough that my body may receive it better and hopefully I will not have antibodies against it.  It's an injection drug, which means that nurses will administer a shot the first few times but then eventually I will do the shots myself (every couple of weeks I think).  I'm thankful that my doctor here and at Mayo are now on the same page.  I have been praying for weeks for them to align and work together because I need them to be aligned for my own peace of mind.

I have an appointment at the Mayo Clinic on April 6th, and I still may take that appointment, but I'm not sure it's absolutely necessary at this point.  It will really depend on how Humira works. We are praying that I have a good tolerance for it, that we will get pre-authorization for it quickly so I can begin SOON, and that I will remain in remission.  We would love you to pray with us to this end.  I do want to continue to have a relationship with my doctor at Mayo, so I will go, but it may be later this summer when my mom also goes for a check-up, so we can make one trip north rather than two.  We will see.  I have lots of other questions for her, and I would just like to maintain a proactive approach to my disease and pick her brain about what the future options are since new drugs like Entyvio are being developed and administered since I was there 4 years ago, fertility questions are always in the back of my mind, and also discuss surgery in the future (which is the only cure for ulcerative colitis at this point and a cure sure sounds really great right about now).

Ironically, the Bible Study I am in this semester is reading the book Calm My Anxious Heart by Linda Dillow.  And wow.  It just could not be better material and has literally met me right where I am at each week.  I could not recommend the book more.  And we have also had women from our own church body speak each week, and I have been sooo encouraged by each one.  You can find the audio by clicking here.

Thanks again for reading. For getting all the way to the end, I'll leave you with some pictures.  Because despite how hard the past few months have been, God has been working in my heart more through the brokenness than anything.  I listened to this podcast by Matt Chandler, and one of my biggest takeways is that suffering can absolutely be God's greatest mercy in your life if it helps you to be aware of your need and dependency on Him.  When even your bodily functions are stripped from you, it's pretty evident that you are not in control and never really were.  I will continue to say that perhaps ulcerative colitis is one of the best things to happen to me for that very reason. 2 Corinthians 12:9-10 has become very evident to me lately as there is nothing strong about me right now; it is only Him in me:"But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. ¹⁰ That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

So, since I am not sleeping well or as much as I normally do, I have sooo much more time to spend reading and praying.  HOW CAN I PRAY FOR EACH OF YOU?  PLEASE COMMENT AND LET ME KNOW.  And thank you to each of you that has been praying! I appreciate each of you so much!

Oh yes! Pictures!  Here you go! 

Scope Prep Day....no caption needed, but I still have to remind myself not to eat all day. LOL

I'm colonscopying, and Will is eating pancakes.  He got the better end of that deal. 
Thanks to Papa for chauffeuring me, and thanks to Nana for watching the munchkin!

Middle of the night reading when I can't sleep.  This is Jennie Allen's new book Nothing to Prove, and I highly recommend it!  Also, they royally jacked up my IV this time.  This was like a week later, and it still looked awful.

Thankful for this little pink drink...it's helping offset the water retention and is helping with the anxiety....it's really a lifesaver these days!

 

I hate when he doesn't feel well.  I can't even remember the last time he fell asleep ON ME. 
Poor guy. This was when his asthma was acting up, so sleeping upright was better for him.

Look at those red cheeks.  This was "stomach bug" round 2.  He was a trooper.  His poor monkey has never been cleaner...I will say that. Ha.

Praise the Lord for DVD's.  Of course we cut cable last month. Haha.
Seriously thankful for shows that keep him entertained though; in these seasons you gotta do what ya gotta do.  We salute you, Lion Guard and Cars 2.

My whole heart right there.

Our rock. Thanks MK for doing double duty and being mommy and daddy while also working a full-time job lately.  You are unbelievably selfless and your servant leadership never goes unnoticed.  So thankful for you and your love for Will and I.  You're the best.  Xoxo!