My Health Journey

Day 5

Day 5

Good morning, everyone!

Yesterday was a wonderful day. I had my first shower, got to dress in real clothes, and most importantly, got to see all of my kids! I had to get a hall pass to be excused from my floor and meet them in the lobby because of covid restrictions. The restrictions are frustrating but the staff was happy to help make it happen for me, including arranging for my shower and getting me into a wheelchair, which I very much appreciate. 💗

I joined service via livestream and was so blessed by Scott Brown and by the outpouring of love from everyone!

Today (Sunday) is my 5th day in the hospital and I’ll be receiving my 5th IVIG infusion soon. I just found out that I’ll be able to get my IV line removed after it’s done, which will be a relief!

Tomorrow I’ll be cleared to move to an acute rehab hospital across the street – please pray that our insurance approves it very quickly so that I can make this move tomorrow. I’m also hoping that acute rehab will have looser visitation rules. 🤞

Other prayer requests – obviously I really want my whole body to just snap out of it and wake up. 😉🤣 I honestly haven’t seen a lot of change in my body with the treatments, but I’m told they take a little while to take effect. I’m stronger, but the paralysis isn’t really letting up at all. I still can’t feel pain or hot/cold on my skin from the chest down. Please pray those antibodies hurry up and do what they were created to do! 🤣

But specifically, it would make a big difference in my day-to-day if my pelvic floor would awaken. Also, I have a lot of back pain which the doctors say is related to the GBS/AIDP. (Edited to add: This isn’t true – this is an example of one of the major signs of Transverse Myelitis that was missed when I was misdiagnosed!) I’d love relief from that! And pray my weak parts get stronger. I still can’t stand up without a massive amount of help (probably because my core is partially paralyzed) and it hurts my back when I do.

Eliza packed me all kinds of things to do and read, one of them being Ann Voskamp’s new book Waymaker. I want to put a few thoughts from that here:

“Suffering doesn’t mean you’re cursed; suffering means you’re human. The question isn’t ‘Why is there suffering in my life?’ but ‘Why wouldn’t there be suffering?’ Because such is life in a broken world. The question is, ‘What way will you bear your suffering?’… Life is never made unbearable by the road itself but by the way we bear the road. It’s not the hard roads that slay us; what actually slays us is the expectation that this road isn’t what we hoped it to be.”

Never in my wildest dreams did I think I’d end up paralyzed before my 40th birthday. It’s taken days for it to sink in that this isn’t some crazy nightmare. But God is still good. I have peace despite the frustrations of my limitations. I know that He has a much bigger plan for my life than I can see, and if His plan includes a season of paralysis, so be it. I have complete faith that He is going to use it for His glory.

I miss my normal life a lot. I have concerns about how long this recovery could take and how I’m going to manage. I miss my family and home like crazy. But God is still good and He is still on the throne in this crazy life of mine.

Love y’all,

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