It’s safe to say that going from “my right foot is really hurting and I think this may be another round of osteomyelitis” – which would have been plenty bad – to a hospital stay with sepsis and blood sugars at levels of near ketoacidosis at times, as well as absolutely unbelievable lactic acid labs for a few days, was traumatic.

It also came with a surgery that brought worries of a CRPS spread and of post op breathing issues as I had stopped breathing post op after my last osteomyelitis surgery.

Then, in recovery this time, I found myself with a nurse who did not understand CRPS and refused to change the walking boot that was causing me serious problems. (I can only wear the shoe – not the boot – because of the way it rubs my very tender skin). By the end of our issue, during my recovery, I was shaking and crying, the Nurse Manager of surgery had taken over and resolved the problem with my doctor, and I reported the nurse to hospital administration the next day. Someone came in person and apologized profusely.

Alone, with no family members, in pain, scared, shaking, and with an uneducated and belligerent nurse immediately after surgery is beyond the pale.

Then we had to fight several times to keep my SERVICE DOG after I was identified as an infectious disease patient – even with two of my doctors saying I NEEDED him., particularly as my diagnosis with and isolation for sepsis had only worsened my anxiety.

And, finally, on my last night in the hospital, my daughter, Sara, and my service dog, Henry, had gone home and I was alone. My insulin had been increased to insane levels. My blood sugar had been dropping throughout the day and was 155 at 9 PM. Prior to that, I had been unable to eat dinner because NOTHING was gluten free – dietary didn’t manage a single GF tray despite my best efforts while I was there. (They also sent eggs every morning even though my egg allergy is the first one listed on my chart) – AND no one would answer the phone when I tried to call them.

At 10PM, I was given my nighttime insulin.

By 1 AM, I was feeling weak and unwell and called for someone to come and warm my Thai noodles since I was on isolation and couldn’t leave my room. After I called two more times, an hour later, my nurse appeared with chicken noodle soup I couldn’t eat – gluten – and informed me that he couldn’t warm my food from the room and the soup was all he had. I asked him to check my blood sugar and he told me it would be checked at 5 AM when my pattern blood sugar was scheduled.

Oh. My. Word.

At that point, I can’t imagine what it was.

It took me literally marching out of my room – as I was really coming unglued at that point – to get the house supervisor – who realized I was in distress – to get my food cooked and get my blood sugar off the floor.

(The house supervisor was so sweet and stayed with me for quite awhile. While she was there, a tech came in to check my vital signs and they were both horrified that my heart rate was 140. With a blood sugar of probably nothing and a nurse refusing to help, what did they expect?)

When I told my doctor the next day, he was appalled. He also halved my insulin dose – and my blood sugar stays under 200 on THAT dose with me eating.

Again, I can’t imagine what it was that night.

So scary.

And that is apart from the routine stuff: over 60 IV and lab sticks (I mentioned in a previous post), tons of glucose checks, being woken up within an hour or so if I did manage to fall asleep, telemetry wires everywhere, six days on contact precautions in my room (some of which housekeeping didn’t come in and I had to call for 6 hours for toilet paper – because they were afraid of MRSA, which is everywhere, y’all), a PICC line placement, waiting on results – like cultures, – to determine my fate, the near constant infusion of assorted antibiotics. . .

It was just a tremendously difficult time for me and for my very afraid family as well.

 

I don’t share all of this to complain – but to make more sense of what happened to me yesterday.

See, since my discharge, I’ve had the hardest time getting my surgeon’s PA to call me back to set up a follow up appointment – and she is the only one in that office who can. I had this issue the last time as well – but my surgeon is a wizard, so, of course, I still used her, regardless of her PA.

Anyway, my stitches are overdue for removal – and, when I finally did get this woman on the phone, I was told it will be Monday before my doctor is back in the office.

Great.

I was sooo upset.

As I was sitting and thinking, it occurred to me to call my home health nurse to at least come and change the dressing and look at ti with me – and she is wonderful and was happy to do so.

And when she took my dressing off? The skin is trying to pull away from the old stitches and – between Monday and Friday – the wound looks like shit. We both agreed.

And we both started calling the ortho office – and couldn’t get the PA to return our calls to get orders to remove the stitches.

Yep, they are STILL in.

But, even that isn’t what I want most to say.

When I saw the wound, my BODY immediately flipped out, I was so upset.

Part of my CRPS/MS/neurological symptoms is that I get these violent jerks through my body that can last for minutes or hours sometimes when I’m really upset. . . And I get “MS hugs” like a tight squeezing band around my whole chest. . . And I have no control over any of it. . .

And the very second I saw that wound, before I knew what we could do, my mind immediately thought, “hospital, sepsis, here we go again,” and my body flipped out.

My precious nurse literally just sat with her arms around me until I calmed down.

And then we had a LONG talk about medical PTSD – which, between my hospitalizations and my long history of chronic illness, I guess is just to be expected at this point.

But still.

https://www.psychologytoday.com/us/blog/chronically-me/201905/chronic-illness-and-trauma-disorders

Honestly, I already have several important doctor appointments coming up and I”m frightened enough by dealing with my chronic illnesses and what they may hold – without the fear of another round of sepsis.

So, what to do? I can’t react violently every time something goes wrong with my body – my diagnosis list is too long and it happens too often. And this was a response I had no control over.

In my case, we made a plan.

• There is no shame in my game and I decided to avail myself of our excellent mental health benefits. I made a therapist appointment pronto to help me with this. I’ve been through some scary stuff, y’all.
• On Monday, at my ortho appointment, I have MUCH to say about this treatment – and pictures of my foot at every stage to show them. I do NOT appreciate this as it was so unnecessary.
• I’m going to educate myself more about medical PTSD and coping straggles. I have to be prepared for when gross health news DOES come – and how not to panic.
• As always,, most importantly, I’ll pray and trust the Lord. I wouldn’t be here now if it weren’t for His provision and I know He has this all under control and He is a Good Good Father no matter my circumstances with my health.

I’ve been carrying you on my back from the day you were born, and I’ll be carrying you when you’re old. I’ll be there, bearing you when you’re old and grey, I’ve done it and will keep on doing it, carrying you on my back, saving you. – Isaiah 46:4 (MSG)

G O D ‘ S  G O T  T H I S .

 

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

Grace and Blessings.