The Phantom Menace

I’ve been home for exactly six days, and for nearly four of them I have been dealing with moderate to severe phantom pain. Phantom pain is a funny thing, it is some of the worst pain you will ever experience (right now running a distant second to actual childbirth) but it is a pain that for obvious reasons is hard to discuss.  Here’s an example as to why:

Chris: What’s wrong honey?
Me: The pain is so bad and the medicine isn’t helping
Chris: Where is the pain?
Me: I can feel it in my ankle and my calf; they are currently hanging through the bed.
Chris:

This is why I feel like a crazy person most days. Pain in a foot, ankle and calf that don’t exist (okay technically in my case the calf and foot does exist: they are all now just part my new thigh), makes you seem a bit unhinged. Add to that the fact when I do tapping or touch therapy I can usually feel what part of my calf or foot was used to reconstruct my damaged thigh? I feel crazy.

That brings me to not reaching my goal of weaning myself off all the meds: this has now been postponed because the pain is not manageable without some prescription drugs and this makes me feel like a failure. I have always been pretty strongly against being on meds in front of my kids. Though I am grateful I was able to wean off the heavy hitting opioids in the hospital and now I’m only on a low dose painkiller (that quite frankly doesn’t feel like it’s doing much).

Emotionally, the pain is starting to wear on me and I had an ugly cry session this week after watching Moana and then again after another failed attempt at taking a shower by myself in my newly handicapped bathroom.

Well sure, showering is probably easy when water is sentient

Add to that I have had to stop comparing myself to other new amputees who are literally on temporary prosthestics only two weeks after surgery. My surgery was so extensive that my incisions are still not fully healed and I haven’t even begun the shrinking process. Learning to live my life without my left leg is way harder that I ever imagined and yet I’m learning and growing everyday. Even though that growth is coming with a side of turmoil and grief, it’s still growth!

Pain aside, I did have a few wins this week. I ventured out in public to a charity dinner! It felt good, even though going out in public without a leg gives me moderate to severe anxiety. It’s a combination of getting in and out of places, and whether or not people will stare. Lets face it: people stare, especially kids.

This is something I will have to learn to make light of, but nevertheless it’s not easy. I will be venturing out to my first doctor’s appointment on Monday so we will see if I can get the hang of this going out in public thing over the next few weeks. It’s important that I do because oh my GOD, this girl wants to go to RuPaul’s Drag Con in the worst way!

So that is it. My big first week home was fairly uneventful except for my first real dose of phantom pain that wasn’t controlled by some hospital grade pain meds.  Oh and the anxiety of physically leaving my house and going out in public. It makes me think that hardcore drinking like in my teen days might not be a bad option for a few weeks? Just wake me up when the pain has decided to stop.