Happy Wednesday!
I’m gonna be honest, I’m in the thick of it these days. Some months having a chronic illness feels like a full time job. I’m so thankful for flexible work this time of year that is allowing me to prioritize acupuncture, chiropractics, wholistic doctors, traditional doctors, and just plain old rest. My gut is in total shut down mode. This happens periodically with my motility disorder. For whatever reason things will decline and stay there for a while. No matter what I do I can’t get it to “wake up”. Eventually it will resolve itself, improve little by little, it always does – but for right now I just have to wait it out.
For most of my life we were at a loss on how to help my gut, it all felt out of control. I’m so thankful that over the last few years I’ve improved to a point where now there ARE things I can do to help. Pilates, iron & potassium infusions, B12 shots, being gluten free, etc. These things all help when I’m in a good place, but sometimes I get in a bad place where I have to surrender, open my hands and trust that only the Lord can do what needs to be done. Truthfully this is always the case (sometimes He just gives me ways to help join in His work), but right now feels like a really tangible reminder of it.
This past week I went into ER for some new symptoms, and thankfully they ruled out any new problems and it all fell into the category of the same old motility disorder. By the Lord’s timing, my feeding Broviac line (permanent i.v. that I get all my nutrition through) actually broke while I was in ER! Crazy! There was an opening on the surgery schedule for 9pm that night and I was able to have it replaced!
I’ve had over 40 line replacement surgeries and they are never any less scary. I am a really high aspiration risk and aspirating landed me in a coma at one point. Each time I go in for surgery I have to make sure the anesthesiologist has all the information they need about my very rare case…and then trust them completely. Not exactly easy on the nerves ;). In pediatrics I knew the whole surgery and anesthesiology team, in adults that’s not the case. This line has been without an infection for 5 years (praise the Lord! Normal is 6 months -2 years max), but that means this was my first surgery in the adult world.
Turns out, in adults they give you the option to do the surgery awake. This is a HUGE answer to prayers and worries for all of my life and future as this totally eliminates the risk of aspiration. The downside? Being awake! The surgery went rather poorly because of how long the line had been in. In the end they got it out and a new one in, but I can’t say it was pleasant or something I’m looking forward to doing again next time I need a new line. Let me be clear, this is still a far better option than risking aspiration.
I’m currently battling some intrusive thoughts/memories/flashbacks of the surgery which also tie back to past procedures/testing/trauma throughout my life, while also recovering physically. I’ve battled this in the past, and the Lord has been so faithful in bringing mental healing. I know He will again.
As I rest, recover, and take things slow I’m thankful for
- Scripture
- A husband who reminds me to rest
- books & good tv shows (a sometimes needed distraction)
- sunshine
I’ll admit, sharing some of this is outside of my comfort zone. I like sharing stories once there is a happy ending, but recently the Lord began to tug at my heart to share more in real time, so here we are! He is writing this story and He is the hero. He is the joy inside of each day, the fruit of His Spirit is truly peace, and when I come to the end of myself each day I am faced with a Father who loves me tenderly while being strong, powerful, and fighting mightily on my behalf.
Leave a Reply