The day finally came to say bye bye, wheelchair! Yesterday I had my 12-week post-op appointment. I had already been out of the chair for a short bit (with and without permission) but yesterday was the day to do new X-rays and put the wheelchair away for good. How did it all go? And how do I feel about it? It’s complicated…
Surgery
Posts in this category contain content related to the various surgeries I had. Drill down to the subcategories for specific surgeries.
A few days ago I had my two weeks post-op visit with Dr. Stoneback. An appointment to remove stitches from the two smaller incisions, address the terrible rash on the large incision, and generally review the surgery and prognosis. Boy, was it eye-opening and is causing me to recalibrate expectations! If you missed the post describing the actual surgery in detail, please read it here. It will help this post make more sense.
The surgery is complete and I am home! WOOHOO!!! I actually came home the next day, 12/19, I just needed a couple of days to process before sharing. So here we go…
Or should I say settled? Unsettled? How to feel settled when you don’t? Here’s where I am…
117 Days. This is the number of days that will have passed from the day I found out my last surgery was a complete failure until the day I have the next surgery. This is the number of days I will have been in a total nightmare. We are 7 days out right now, so I’ve gotten through 110 of them. But let’s go back and examine this…
OK, so what exactly is sclerotic bone? I’m not an expert at all and don’t have the most complete understanding myself, but since I have been diagnosed with a lot of it I’ve taken some time to do some research and ask questions. This is clearly a problem for me and a primary purpose of this upcoming surgery so let’s dive in…
And here we go! I have so much to share from the last THREE months! The very short version is that we are now counting down the days to my baker’s dozen surgery. Yep, you read that right. We have to do it all over again.
/break
Catch Me Up, Please!?
OK, so since I last wrote, I have had multiple visits with Dr. Stoneback and have gone through an incredible whirlwind of medical turmoil, emotional upset, disbelief, anger, confusion, disruption of normal sleep, and somehow still functioned like a normal adult. While handling it all, I’ve been able to focus on homeschooling, parenting, my own workouts, everything else – all to keep me grounded and focused and also serve my people to the best of my ability. Total Twilight Zone!
It turns out that we need to do the largest surgery of all. Much of the bones in my anterior pelvis are now sclerotic and need to be replaced, there is bone edema and periostitis, and the OSSIOfiber hardware is broken and needs to come out. The proposed and planned surgery will involve harvesting a large tricortical piece of bone from my iliac crest (that will never grow back) to fabricate a bony bridge to place across the top of my anterior pelvis (after the sclerotic bone is removed). It will be something like letter B in this image:
Then more bone will be harvested from my left femur to fill in the other spaces where sclerotic bone is removed. This will all be held together with one or two titanium plates and many screws. Then I get to spend three months in a wheelchair while it all hopefully begins to fuse.
OMFG
It is a brilliant plan, but my soul is gutted at the thought of doing ANOTHER large surgery. And ANOTHER long recovery.
And I could walk away and just not do it. But, what if this solves it all?
Baker’s Dozen
So, this will be the 13th surgery on my hips and pelvis (and 20th in my lifetime). Unfortunately I’m not getting it for the price of 12, but it is my bonus surgery nonetheless.
I’ve waited all these months to come write about it because I’ve been consumed with the financing of it all, getting my many questions answered, allergy testing for the new metals, actually getting a surgery date, etc. I had to shelve my feelings in favor of taking care of all of that, purposely deciding to tend to my own thoughts only when everything else was taken care of. So here we are now. Three months of fighting hard for getting this to happen, wondering if the fight was the Universe telling me to walk away. I told myself I’d make that decision only now, when I have the space to feel and breathe and put the rest down.
16 Days to Go
Surgery is set for 12/18/2023 so the countdown is definitely on. We have had that date set for about 6 weeks now so it has been a long countdown. It actually took 6 weeks to even get a date, a whole other ball of stressful waiting that preceded the rest. There will actually be a second surgeon in there whose sole purpose is to protect my internal organs from damage. They say the night is darkest before the dawn. Is that what is happening here? Please say yes.
Part of what I want to spend the next 16 days doing is thinking about what I want to spend time on during my recovery. What sort of projects do I want to do? Do I want to return to writing this blog? I have some ideas that I will play with.
That’s the news from here. I’ll be writing more in the coming days. I need the clarity.
I feel like this photo. This is from Willa’s 8th birthday recently. She and her friend were dancing with glow sticks.
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Here we are a few days shy of one year post-op from surgery number 12, the one that was to be THE ONE to fix it all and finally give me my physical freedom. At one year we always do an X-ray to check on progress, and based on previous X-rays over this past year this should have been a good visit. Yet, it was not. Instead I am crushed.
It’s been very quiet around here. I’ve been patiently and quietly biding my time healing while also homeschooling two kids, momming, wifing, progressing my workouts, life. In order to succeed at all of those things, my writing had to take a seat. But today I’m here! And yesterday I was in Boulder for my six month post-op visit…
I haven’t written in awhile, biding my time in a holding pattern of slow but steady healing. The day to day changes are microscopic, but over time they are piling up, enough to share. Meanwhile, we are starting to address what feels like the mangled ribbon from my typewriter (my actual typewriter pictured above) in my left hip, a feeling that has been there since my first hip scope in August of 2018.