my body has gone rogue – but i’m still fighting.

I don’t really know where to begin telling you what this body has been doing over the past week or so. In some ways, it’s been an even more wild ride than my recent hospitalization – and that’s saying something.

I suppose I’ll begin at the beginning.

CRPS On The Move

With all that has happened to my body in the past month, when I noticed significantly worsening pain in my right foot last week – my infection and surgery were all related to my left foot – my first concern was that the fractures in the right foot could have also developed osteomyelitis with a bacteria not covered by my current antibiotic. With all that has occurred, this was not an unreasonable fear.

Still, with my existing conditions, I monitored it for a few days as there were several other things that could easily explain it.

However, by Monday, it was unbearable and I returned to the Grandview Emergency Department.

Unfortunately, as with any ER, which provider you get is luck of the draw and I got a PA who was unfamiliar with several of my diagnosis, too busy or unconcerned to listen, and seemed to be in a hurry to blow me off. However, this is not my first go-round with that type, everyone else at Grandview has been amazing, and I just needed some testing.

At the end of the day, I did not have further infection – BUT my CRPS – which I had honestly hoped might have even been a misdiagnosis for the infection – 1. is definitely still with me and 2. has spread to my right foot as well.

I was just absolutely sick.

As this provider had no empathy for pain patients, she simply discharged me, telling me to follow up with ortho, her work in this town was down. Gee, thanks.

Despite the PA in the ER saying I “claimed” that my right foot was significantly worse as my CRPS had spread, a CRPS spread is agony – and this was a truly terrible visit from a patient care standpoint.

Since then, I have seen the blossom of a full CRPS flare with systemic symptoms:

  • stabbing pain through my eyes
  • my heart rate variant and shooting up into the 130’s and beyond for no reason
  • severely blurred vision at times and dry bloodshot eyes
  • stabbing pains through my wrists
  • excessive (excessive excessive) sweating
  • abruptly today the WORST pain I have had, shooting through my foot and knee all the way to my hip.

So, I did see my ortho doctor Wednesday – and I have much to share from the visit – but she was not able to offer much help when it comes to my CRPS. No one really is.

I did find some wonderful resources today though – the very best I’ve found so far:

24 Tips For People With CRPS

This list is so tremendously helpful and I’ll be reading up on all of her recs. I’m so grateful to actually find some useful information from someone who lives with this infernal beast.

However, as I write to you now, late night and post nap, I have another symptom that that come down the pike that truly has me out of sorts.

major heart rate variance – that I have never experienced. My resting heart rate, even, is around 100 normally always.

I have observed that my heart rate is frequently dropping – down to the 50’s and 60’s – and then shooting back up to the 120’s and 130’s. This is likely a symptom of dysautonomia, which frequently comes with CRPS. I have quite a few of the other symptoms as well – but the onset of cardiac symptoms has me frightened. Who wouldn’t be?

I’ve endured many of these symptoms for some time – and my eye symptoms have been particularly bothersome as of late – but this heart business is definitely troubling.

As we sit now, Sara is working next to me and we will be investigating this today.

But, of course, it’s not just the CRPS that’s acting out right now. . .

Ortho News That Floored Me

After my ER visit on Monday, a holiday, when I called ortho Tuesday morning, they were so kind to get me a work-in for Wednesday morning for my right foot.

As I was a sudden patient for Dr I – I came to her in the hospital for an I & D for the infection in my left foot – she had never done a full set of X-Rays on both feet in her office. Until Wednesday.

Her sweet tech took the images and Sara, Henry, and I were quickly taken to a room.

Then her PA, who I have a great relationship with from my hospital stay, came in to look at my wound on my left foot since I was in. I mentioned my X-Rays, which he had not yet seen, and we discussed my CRPS and he left to get new wound care orders. (At the very least, with my continued home wound care and daily IV antibiotics, my left foot wound and infection are doing very well)

leftie is healing nicely from the infection and surgery, thank the Lord.

However, he returned VERY quickly after looking at my X-RAY’s and said, “Did you know EVERY bone in BOTH of your feet is broken?”

Umm, no, I didn’t.

The last time they were imaged they were in bad shape – but not quite that bad.

I cried. Oh, did I cry.

Not long after that, Dr. I came in. She said, of course, that surgery isn’t an option right now with my infection. And we are getting me a new rheumy – hell, yes we are – and getting me off this damn pred forever. We are also working towards the bone strengthening shots I’ve been begging to get for years now (and likely wouldn’t be in this condition if someone had helped me get them sooner). And she is working on a game plan to keep us moving forward.

Sorting All Of This

After we left the doctor’s office, honestly I was too much in shock to even process the information I think. Sara and I went to lunch nearby and then to the bookstore with Henry.

After that we came home for a home health nurse visit, a couple of holiday movies – Hocus Pocus and The Family Stone, and then a LONG sleep.

Then yesterday was a solid rest day – reading, writing, and processing all of this.

And it has been a lot to take in.

First, I had the major infection, surgery, and hospitalization. I’m still very much dealing with those issues with my PICC, my IVs, my home health visits, my frequent MD appointments, and my wound treatments .

Now, I’ve learned that my CRPS has spread – and that is really a big thing, as I’ve already explained somewhat with the dysautonomia.  In addition to the dysautonomia, just dealing with this ungodly pain again in my right foot as well, that is radiating into my knees and hips this time is really sickening.

And my feet have just crumbled too?

Holy shit.

Really.

Still, as always, there is only one solution to this problem that’s going to work: to keep moving onward.

Today, during the day, we’ll go find out what in the world is going on with this heart rate business.

Tonight, my friend Ashley and I have super fabulous concert plans – and I intend to be there – from a seated position, of course, but there no less.

Tomorrow is Football Saturday at our house with games and snacks all day.

And then Sunday is Church Day, not to be missed.

And, as always, time with my family, actual and chosen, blogging and other writing projects, reading, geeking out to documentaries. . . So many things to do and learn and enjoy. ❤

Whether it is on foot, with a cane, using a rollator, or in Mervin the Smartchair, life is meant to be lived and these latest setbacks won’t be stopping me.

Always onward.

Joan. ❤

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

Grace and Blessings.

 

 

 

 

 

 

 

1 Comment

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s