Recovery Day 16

I skipped a couple of days. I had nothing new to report and anything I would've posted would have been pretty whiny and/or depressing. But I definitely have a message today...

I think the most difficult part of living with chronic pain is trusting yourself after so many medical professionals have told you that you're wrong.

Until yesterday afternoon, I literally could NOT even sit or stand up for more than a few minutes without getting the worst headache you can possibly imagine because my shunt had been overdraining since the day of surgery. Those of you who have had epidurals leak after delivery or a lumbar puncture and you didn't stay down the full 24-hours or any kind of CSF leak understand the kind of headache I'm talking about.

I was almost hyper last night, giddy like a little girl walking around Disneyland, because I got to sit up and watch the Olympics trials. I coughed at one point and braced for the spike in pain only to call out, "It didn't hurt!!!" My mom and Glen were so excited! Sarah Jane was like, "is it supposed to hurt?" No sweet cakes. Coughing should not make you feel like you're going to die. I even got up several times for a snack or three because I wasn't even nauseated! I've been taking Phenergren for nausea since the middle of May. And I didn't even think to take it yesterday afternoon because I didn't desperately need it!

YOU ARE YOUR OWN BEST ADVOCATE!!! Trust your body! And if you're wrong here and there, who cares??!!! I promise that you will be right more often than not!!!

Recovery Day 10

I love the Sabbath Day! Physically I've been resting all the time for weeks and weeks, but Sunday's are a more productive rest for me as I do activities that help draw me closer to my Savior. Several weeks ago, I rediscovered daily journaling as a fabulous way to process the emotional and physical health challenges with which I've been struggling. I've also been spending more and more time in the scriptures as a source for putting life's struggles into an eternal perspective.

Yesterday we learned (the painful way) that I definitely have a time limit on how long I can be up and about without my head feeling like it's going to explode. We're not sure if the shunt is draining too much or too little... The pain feels the same either way. I haven't heard it drain since yesterday morning. But maybe I just can't hear it anymore? It's all so very confusing. And it's in these moments of confusion and frustration that I remind myself that "God is not the author of confusion, but of peace" (1 Corinthians 14:33) and I turn to my Savior in prayer. And guess what? He helps still my soul every time. #BrainSurgeryRecovery #hydrocephalus #ShuntsAreWeird#SabbathDay #HeLives

Recovery Day 7

I can't believe it's been a week since my surgery! It's been an emotional roller coaster, for sure, especially as I remember how much I hate shunts. I mean I really truly hate having this pressure valve and tubing system manipulate the drainage of my CSF. Sometimes it drains too much. Sometimes it drains too little. Either way, I get an awful headache. And when my pain increases, my emotions start to overwhelm me and drag me down a path of ridiculous negative thinking. Crazy emotions are also a side effect of brain surgery. So I've been forgiving myself for this lack of emotional control. It's totally normal. But knowing that doesn't necessarily make it any easier so I simply ride it out until I'm distracted by something else.

I'm grateful for my hydrocephalus support FB groups that have been helping me keep the physical and emotional pain in perspective. One of my darling friends who's had three times the number of brain surgeries as I've had, gently reminded me yesterday that this shunt is working with my ETV to keep me alive so that I can be present with my family and live a pretty normal life. She said it might be a bit more painful, but I'm alive.

Truth.

Thanks for the encouraging words and prayers, my friends. I'm healing more and more every day.