the land of almost

I’m up really early this morning getting ready to return for my follow up appointment with my orthopedist from the surgery 12 days ago that helped to save my life – and I don’t say that lightly.

before & after

Looking at the photos of my – misdiagnosed – left foot, before and after, honestly takes my breath away.

after. and the lines are just from my sock and boot.

As I wrote so much about here, I was told that my “before” was CRPS and that there was nothing to be done other than the prednisone therapy and my smartchair and learning to endure the pain.

I spent almost a year using the Smartchair, in fact, including having my Ginny help carry me all over Montreal in it.

Still, my pain had exploded to a point that I was calling my rheumatologist daily, begging for an appointment earlier than my regular one – only to be blown off.

I had an appointment scheduled with him finally on the day I had emergency surgery.

Between my rheumatologist and my orthopedist, NO ONE did additional imaging or labs when this happened to me – just the routine stuff – and, as I was reporting that I was getting SO MUCH WORSE, they just assumed that a pain patient was complaining of pain – and ignored me.

I also got a reminder text on Sunday that my old orthopedist would generously see me on Monday. That had been his next available when I had been calling, desperate.

my now

Before I talk more about them, I want to talk about the beautiful present, the gift that God and my amazing doctors at Grandview have given me.

Since my surgery, I still have pain, of course. I have the pain of my seven fractures and my RA and healing from surgery and fighting infection.

And that pain? Is SUCH an incredible relief.

I can LIVE with that pain. I know how to do so well.

I know how to push through when I can – and go to bed when I can’t.

What’s more? My new orthopedist has PROMISED to help me work on healing these fractures.

My heart could explode with joy. I have no words.

And just since I got home. . .

My Al and I were able to go out for dinner – and I didn’t have to keep me foot propped up. I can sit in a regular position comfortably again for the first time in six months.

I was able to take my Henry – who is also doing so SO well, for which I can’t express my gratitude – on a quick Target run with my Sara Bug. It had to be fast – but, still, that is such a long way from where I was.

Oh my heart.

After being too sick to go since I got home from Montreal, our bunch was back at home in church on Sunday. ❤

My heart and soul are full. I love Church Day so so much and it has just broken me to be too ill to go – with the lingering fear that this was a permanent state of being.

This may seem like a small thing, but it isn’t to me. I love to cook, and y’all may remember that I went back to school when I had to stop working and got a degree in integrative nutrition because I am so passionate about real, plant based food.

It has been difficult for me to handle being to be so unwell that I couldn’t be in the kitchen and Sara and I were having many meals that were warm-up or order in.

Just being able to prepare simple home meals again has been so restorative for me.

And, last, but certainly not least, as I had gotten so ill, my office had turned into a sort of storage area as I couldn’t use it. I couldn’t sit on the chair as my foot couldn’t be dependent and I didn’t have the energy to be anywhere other than my spot in the bed.

Of course, I can and have been writing from my spot – and still will – but having my office back and being able to use it again to work on my book just makes me feel like me again.

Thank you, Lord.

the land of almost

With all of these beautiful gifts, I will not be dwelling on the past by any means. I am so looking forward to seeing my orthopedist today to learn what the plan is for my fractures as well as my therapy for the infection – though I know it includes at least five more weeks of IV’s. I am grateful for a new future.

However, the fact remains that the physicians that were treating me in the past caused great damage – and, when I take a moment to consider The Land of Almost, could have, and almost did, cause catastrophic damage.

And it must be addressed with them, in some appropriate way, at some point, to prevent the same harm occurring in someone else.

  • Dr. Kaira King at UAB West Emergency Medicine could have seriously directly caused me grave harm or death with her misdiagnosis. Had I allowed her to drain my wound and send me home with a bone and blood infection, the outcome would have been grim as ill as I was. Considering that as soon as it was discovered, Vancomycin was started in the Emergency Department of Grandview, I was in serious condition. I won’t get into all of the details, as I’ve already written about this, but I am in the process of addressing it – because it is so serious.
  • My old rheumatologist had so many opportunities to catch the infection – and simply didn’t take the time. And now he isn’t returning calls, though, in the past, he personally has returned all of his phone calls – calling me back at 7:30 PM when I was at Walmart, once calling me during a Foo Fighters concert, calling as late as 8:00 PM. I have left no accusatory messages. I’ve simply left updates with what is going on and asked him to call me back. Hiding much? This is unacceptable as well and will be addressed.
  • My previous orthopedist would see me, look at my stress fractures on x-ray, state that surgery was not an option for me, and tell me when to come back. This happened many times. When I asked every time for Forteo, bone building shots, he would tell me his office would get them – my rheumatologist would say the same to get me out of there – and then they wouldn’t because it involves much insurance paperwork. When I landed in the smartchair with the CRPS diagnosis, he was not bothered that this had happened. He was fascinated by the left foot – and the smartchair, which he looked at for a good ten minutes. He also ordered no additional imaging – and no labs at all.

The infection set up in my foot because of the lingering fractures.

And the “CRPS”? That was the infection brewing in my body all along, getting worse.

And no one stopped to investigate.

So, when my rheumatologist ordered the massive steroid blast in July,  I could walk for a bit due to decreased autoimmune inflammation – but the infection exploded in my body because the high dose steroids completely wiped my immune system.

And that was the ball game.

In addition to having such a frightening close-to-death experience myself, there are so many other harms that have been caused by this.

  • My family has been through the wringer, with my being so terribly ill for months and the having the horrifying experience of seeing me suddenly hospitalized with such a frightening diagnosis. There is no taking that back and it just infuriates me.
  • My person has endured unthinkable sudden loss in a medical setting and then had to come to the hospital and leave me there, sick as hell. This is such unnecessary trauma for her and I am so angry.
  • My sister-friend of 25 years has been stuck three hours away, terrified in all of this. These are things that are huge – and didn’t have to happen at all. ROAR.
  • There has been so much pain, so much energy, so much time wasted, so much expense – for no reason at all. I hate that so so much.

So, I WILL be filing complaints everywhere I possibly can.

No one deserves to go through what my people and I have again.

No one.

and, now, onward

However, as I said, though I have to visit The Land of Almost to be sure I address this, I’ll not be staying there.

Today, we make a new plan.

Today, I give so so much gratitude for what IS – and it is amazing.

I was saved and am healing.

I am grateful for my IV therapy, for my home health, for being back to my life, for being up, for being able to rest, for my family and my loved ones, for this beautiful life.

Thank You, Lord.

Be well, everybody. Take care of yourselves and each other.

Grace and Blessings.

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