So this is where and when it all started for me – exactly 1 year ago today. I was at Mayo Clinic for routine exams and follow-up appointments. Monday I felt really good and walked 12,000 steps. I was there looking for news of improvement for my rheumatoid arthritis. This is the image I posted the night before. And right next to it is the image I posted the following afternoon.
The following morning after my first appointment I stood up and suddenly felt very woozy and disoriented. I took the elevator down – and by then– I was burning up. By the time I crossed the street to my hotel- I had shivers so badly they were actually rigors. So I called a car and went straight to St. Mary’s- the ER for the Mayo Clinic. As soon as I walked in they took me back immediately. By now, my fever was well over 105 and BP was 70/35. They began treatment immediately and took me for imaging to see what was going on. Within a few hours we knew it was Sepsis and what it was caused by.
I had NO IDEA what the heck sepsis even was. And I was far too sick to start investigating. So I just slept. And to be honest – there were several times they almost lost me and I didn’t even care. After getting IV meds for a week, I was able to head for the barn. I continued the IV meds at a local hospital for 2 more weeks. Could I even look and feel any worse? I think not.
For the first several months- all I did was sleep. My glucose was super high, my blood pressure was super high- so was my heart rate. Nothing would return to normal for at least 6 months – and even now – much is still off kilter.
There were so many surprises when I returned home – I had what is called Post Sepsis Syndrome and according to my Dr – PTSD. Dystopian nightmares, confusion, hearing loud sounds inside of my head, fear of driving, and absolutely no desire to push through this. Again- I didn’t care if I made it or not for months.
More surprises cropped up. At the time, I didn’t realize that I was experiencing a lack of blood flow in order to save my life. How did it manifest itself? Some things are still happening even now. First – the lack of blood flow to my brain has had many consequences. And to be honest – I don’t like them one bit. I ended up with reduced heart and lung capacity. The lack of blood flow to my peripheral system led to nerve pain shooting down legs, 5 torn tendons, – one of which is a labral tear and it hurts so much to sit and to walk. Essential tremors in both hands means that I have dropped, broken and spilled something at least several times a week. I have to laugh about it – or I would start crying and never stop.
So- where am I at 1 year? Slightly improved- but a long way to go. I’m a bit more active- both mentally and physically, find steps a bit easier, better focus ( sometimes). I’ve tried to convince my Dr to repair my torn tendons- he thinks the risk of mortality is too great. BUT, I don’t care- I just want the pain to be gone.
What has led to this improvement? Good old fashioned techniques- sleep, healthy diet, increased activity as pain permits. And a wonderful caregiver❤️.
Will I ever be back to 100% of the day before – no. I really don’t think I’ll ever be back. According to Dr – year 2 is even riskier for me. Will I ever feel normal again – I’m pretty sure I will – in fact I will go so far as to say I’m positive I’ll find a new normal, and be content with that. It will take my mind a while to get used to the new me.
Just remember , as a friend reminded me – from Monty Python – I’m not dead yet!
And to me – I want to say ‘Happy staying alive from Sepsis Anniversary’ Let there be cake.