Friday, January 18, 2013

Crohn's, Blessings, and Talking Pens

So I am still trying to figure out and navigate this new world of Crohn's. There is still a lot I have to learn, but there have also been countless blessings; I am just so thankful for how the Lord has already taken care of us.

Counting My Blessings
It wasn't fun to be in the hospital, but the fact that I was able to have all of my tests done at once and find some answers within a few days was a huge blessing. The hospital bills are not going to be fun (we got a sneak preview from our EOB...I think my initial response was "holy cow"), but the Lord allowed Mike to accummulate HSA savings, which will help us pay for those bills (He was taking care of us, even before we were married and knew these bills would come along). I am thankful for insurance. And I am thankful for my sweet husband who is honoring his "in sickness and in health, for richer or poorer" vows :)

And speaking of my sweet husband...he has just been amazing through this whole thing. I feel like most of my response lately has been "I am tired" or "I don't feel well" but he has patiently and lovingly taken care of me. Without complaints. He has listened to my "I googled searched this and did you know this could happen??" panic moments and has patiently and lovingly comforted and reassured me. He is always good about reminding me of God's provision and watchcare over us. I am so thankful for him and that I don't have to figure all of this out on my own.

The diagnosis wasn't fun either, but I am thankful to have answers and to have a seemingly milder case. Right now, I don't experience symptoms on a daily basis like many people with Crohn's do; I don't ever want to take this for granted, especially since there is the potential that could change over the course of my life. And there have been so many advancements in Crohn's treatment from even just 10 or 15 years ago.

My treatment option involves a self-injection. I am not thrilled about that idea, but I am thankful that we live in a time and place where medicine is available. I am thankful for doctors and modern medicines. When we first started talking about treatment options, the cost of the recommended medicine was not going to be paid for by insurance. And because there are no generics and the medicine is considered a "designer drug," we were looking at an unreal amount of money each month. But even before we could make a final decision on how we would proceed, the Lord provided another option that would make our costs affordable.

I mainly write about this to give all praise and glory to Jesus for His watchcare and provision over us. But I also write about this to remind myself of how He takes care of us; because some days are hard and scary and overwhelming. Some days I don't feel well, or I get nervous that a flare up is coming, or I worry about what things will look like long term. So I can easily lose sight of the blessings that abound. And I want to remember that He is walking through this with me. That He is not nervous or worried; that He offers comfort and peace on the hard days. And that the hard days are designed for me to press into Him.

Learning to Live with Crohn's
I just have to say that everything is still a little bizarre to me. There's a part of me that doesn't feel like I have a disease at all. But then there are times when I am very aware of the fact that I do. The more I learn, the more I find myself thinking "Oh yeah; that makes sense." I really don't have a ton figured out yet, but I am trying to learn a little at a time as I attempt to figure out life with Crohn's. The tricky part about it is that no one has the same story. There's not one formula for the symptoms or the treatment, so it's hard to identify hard and fast rules on how to deal with it. The answers I keep hearing are "maybe" or "it depends." Fun, right?

As far as my DIET is concerned, I have started keeping a food journal in an attempt to identify any trigger foods. This may or may not be successful, as some people have specific triggers and some people don't. There are, however, some general things that I should avoid: greasy & fried foods, super spicy foods, beans, grains & bran, nuts & seeds, popcorn, corn, and caffeine. The caffeine has been sad...I miss coffee and Dr Pepper like no one's business haha. And then there are some general things that I should limit: raw vegetables, red meat, acidic foods (like tomatoes, lemons/limes, citrus fruits/drinks), alcohol, wheat, berries & fruits with skins. The diet gets even stricter when I am experiencing a flare up. I have to be super-conscious of what I eat, as my body won't absorb nutrients like it should. Thankfully, I have been able to re-introduce a lot of foods over the past few weeks, but everything is trial and error at this point.

A major thing I can no longer have has to do with pain relievers; NSAIDs, ibuprofen, and aspirin are off-limits for people with Crohn's. That's difficult for a girl who relies on Advil for pretty much all things pain related...cramps, muscle aches, migraines, etc. So I am on a hunt for natural pain relievers, if you know of any!

For TREATMENT, I have chosen to take Humira. While I had hoped to maybe not take medication, it just was not the best option. In order to try to get my Crohn's into remission and avoid any complications in the future (i.e., future hospital visits, surgery), this was my best option. At least for right now. So life now consists of specialty pharmacies, self-injecting pens, and sharps disposal kits (what??) It's all a little bizarre to me. But the injection seems fairly simple. I mean...I have a practice pen that talks to me. Technology.

In English and Spanish :)

I had in-home training with a nurse and had my first doses. I will go back to my GI doctor in a couple of weeks, then will be on a normal schedule of injections every other week. So it's not even every day. It's a bit surreal, but again I just feel thankful. I would definitely covet your prayers, that this medicine will work for my Crohn's symptoms and that I would experience no (or maybe realistically, limited) side effects.


1 comment:

  1. I thought of you today -- I had a doctor's appointment and Crohn's was listed as a disease to check off if either myself or anyone in my family had been diagnosed. I knew very little about this before you started blogging about it -- thanks for sharing your journey!