Today I’m writing from a deep place- one that I’m seldom in. First of all – please don’t think I’m depressed- because I’m not ( I even had a very long discussion with my primary about this) I’m just dealing in reality.
As many of you know- I’ve been recovering from Sepsis for almost 6 months now. I was really starting to improve- going to PT, exercising ( a little), and outlook was looking UP.
However- I started having intense pain in my right leg- as well as several other peripheral issues. Just to remind you that when your blood pressure drops so low (70/35) for so long (60 hrs) blood flow to other vital organs slows down and it takes a very long time for them to recover. My head (think brain), peripheral system ( think muscles, nerves, tendons, ligaments and other soft tissue) and auditory system was negatively impacted.
I’m not going to talk about anything except for the recent tests I had – not the upcoming ones.
Thursday I had 2 MRI’s and 2 Xrays that covered my spine, pelvis and knees. ( I cried and cried and the nurse held me). The results shocked me. I was not at all prepared for what was in them. I expected them to say I had bursitis on both hips- I expected them to say I had synovitis in both knees. YES – they said that for sure. That and a whole lot more. What I did NOT expect was torn tendons in multiple areas- and the one that SHOCKED me was that the tendon at the bottom of esophagus that attaches to your stomach was TORN. And that the tendon over my hip was torn too. Or that I have multiple tumors on my spine and hip (disclaimer from Mayo – most likely benign). There was much more in those reports – I’m not going to get down in the dirt on this.
Because I want to talk about how this makes me feel.
First of all – I’ve been in intense pain for so long I can’t remember what it feels like to be normal anymore.
I’ve put so much into my recovery- inch by inch- but it was forward momentum. And now all of this will be backward movement. I’m running out of time, energy and health.
The combo of PI, Post Sepsis and age does not make me a good candidate for multiple surgeries – and I’m not sure how much I’m willing to put my body and my family through. I’m talking real right now – no stars in my eyes.
Living with rare disease is always so complicated- we have to find the best way to navigate. I thought I had found my way – but, now I’m lost. I’ve holed up this week-end – deep thoughts, prayers, trying to find my way to what will be my new reality. I still haven’t found the path.
I return to Dr. tomorrow to formulate a plan – which will include more tests, more visits, more and more and more.
I’m just not sure………
I think I need a hug – or maybe lotsa hugs