8 days.

Today is day eight of my hospital admission, close to my longest admit to date. As I write, I am waiting on MD rounds to find out for sure if I am – hopefully, prayerfully, dear Lord please – going home today.

We have been in a holding pattern, waiting on negative blood cultures, as I’ve continued IV antibiotics.

My feet are still incredibly tender – but I am walking MUCH better than I was when I was admitted – and, for that, I am profoundly grateful.

As usual, throughout this admission dietary has been a nightmare in dealing with my celiac disease – but I’ve managed. I truly feel for anyone who is newly diagnosed as they could end up in this mess of inappropriate food and constant mix-ups – and get sick because they aren’t yet able to manage their diet. It’s disconcerting.

Despite those issues, I am so grateful because in addition to my physicians being amazing (I am so fortunate to have a great team), my nurses have been just fantastic as usual. I have had so many kind and wonderful nurses and CNA’s – which makes the whole world of difference when I’ve been contained to one room for so many days. I know they have been incredibly short-staffed all week and yet they have never made me feel like they didn’t have time to help me or that I wasn’t being looked after. They’ve even stopped in just to visit and chat. I am so thankful.

Still, this has been an difficult admission on many levels.

For one, I was more ill, both with my feet and the sepsis situation, than I have been in the past – and it was incredibly painful and frightening.

Because I’ve been so sick, I’ve had a slew of tests that I haven’t experienced before – like a transesophageal echocardiogram – to rule out any cardiac complications from this long-term sepsis. (Thankfully, my ticker is fine.)

All of this MRSA and testing and hospital life has definitely sent my anxieties through the roof – and reminded me both just how serious my spoonie state is – and, more significantly, how fragile my periods of relative “health” are.

Not only is this not going anywhere (which, of course, I already knew full well), I’m having to make accommodations for the fact that my immune system is non-existent and I need a plan in place for these MRSA/sepsis issues that seem to be a part of my life now.

I’ve realized that, from now on, I’ll need:

  • A hospital bag at the ready with a few days supplies packed. What I keep finding when I do have to come in with these infection flares is that I am too weak and sick to pack and that delays my leaving – only making matters worse. It’s time to just accept that these issues may well come up again and be prepared.
  • A hospital folder with all the information I need at every admission – like medical CRPS information sheets (because how to treat CRPS patients to avoid spreading their disease and also significantly worsening their pain is not something that many seem to know – and I don’t have any room for error on some of these – even minor – procedures they do).
  • I am ready to wait as long as need be for a consult with the out-of-state CRPS specialist I have considered in the past. If they have treatment that might be helpful, it would be worth long doctor commutes for sure. The combination of these immune deficiency related infections, my RA (which is still in full bloom), and my CRPS is just not manageable as it is right now. (Even here in the hospital, on post-op pain management, I’ve been fighting stabbing CRPS facial pain that isn’t touched by IV pain meds and is just breath taking).
every. damn. day.

As I’m sitting here, waiting on the hospitalist, thinking over the past eight days, I am just stunned at all of the ups and downs and changes that hit out of nowhere. Chronic illness is a beast, always ready to strike with new and more complex (and painful) symptoms.

chronic illness funny

I’ll be mostly home for the next several weeks, healing, and back on Ellie the Cane for a bit because my balance is still amok at times from this CRPS explosion. I’ll be catching up school work (it has been impossible to accomplish much with all of the activity here at the hospital) and reading and resting lots.

The spoonie fatigue that has come with this episode is just astonishing. I hope it passes quickly – but experience tells me that recovering from a hospital stay this long may be a bit drawn out.

It’s going to be okay though. I’m thankful to be on the healing side of this episode for sure, grateful for feet that are working again, ready to be home with my peoples and my Henrys.

The picture at the top of this post is one of my favorite verses, a great comfort to me this week:

I’ve been carrying you on My back from the day you were born, 

And I’ll keep carrying you when you’re old.

I’ll be there, bearing you when you’re old and gray.

I’ve done it and will keep on doing it, carrying you on My back, saving you.

— Isaiah 46:4 (Message)

God’s got this. ❤

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

Grace and Blessings.

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