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Up and Down Recovery

Since we're all human, I'm going to begin with this: I'm sure many of you that have experienced adversity in the face of overwhelming situations in your life know the deep down dread, an emotion that eclipses logic. It's been hard for me to reach out to people and really let them know how I've been - or even divert to the original plans of releasing a series of videos.

I want all of you reading to know, I feel, deeply that I owe this to you - whether you agree with that, or not. Right now I'm in the middle of this up and down swing as a newly amputee. It's been a real struggle between the emotions and the physical pain - and let me again underscore so much physical pain. Right now, I think I'm in a downswing with what I have previous referred to as a "CFS flare". The past 7-ish (possibly closer to 8 years) has followed this cycle of waxing and waning of my symptoms (in the form of pain and energy issues). To top that off, I am now dealing with this amputation, rather actively, because I am far enough out for my brain to realize this is the way things are going to be for the rest of my life. I mean, maybe once I'm in a prosthetic and walking, I get used to the liners and all of the sweating... perhaps then things will seem better and more well managed.

As I write this, I cannot but tear up from the sense of frustration that I'm currently useless. I am sitting around and I can't do what I would like to be doing that would bring normalcy back into my life. And I contend with that daily, especially after things have actively been in this state since last November.

I mean, if I could have not only what I want, but what I need, it is a sense that things are right and life is ok - if not good. I don't live with high expectations - I haven't in a long time. I'm focused on the survival element and getting through each new day. I have been oscillating between residual limb pain and phantom pain and I'm sorry to announce that I dread my time in the bathroom - in most instances this causes my leg anywhere from 7 out of 10 to 10 out of 10 pain while using the restroom. It's so intense due to the neural plasticity of the somatosensory cortex since much of tat gray matter has reorganized into the adjacent mapped areas that I usually can't contain my pain internally and often have to exercise it off. Say a number two might cause around 10-25 minutes of really searingly stabbing pain in my leg. Without that, even with me donning and doffing my new shrinker, if it's not seriously distracting numbness, it is usually some basal level of pain, whether it be phantom pains, or residual pains.

As for the residual pains, they have been worse at the end of my stub as we move towards preparing my residual leg for its first check socket (this may occur as early as next week, but depending on if there are significant volume changes, may be delayed further by another week). So between the previous surgery and pushing a liner/shrinker on, that is clearly part of the source of the problem pain wise as I get fitted and begin physical therapy and walking with it.

As for the phantom pains, there was a short period of time about a week out from this last surgery where I lived in respite from the phantom sensations fairly well for three days. Unfortunately, if anything, they have been increasing in frequency and in some cases, even in intensity. For those that aren't familiar on how one differentials between the two sources of pain, quite simply: phantom pain is pain that seems to originate from the area of space that your full leg would possibly occupy, but doesn't currently occupy. It's quite confusing. It's only made further confusing if I were to tell you that sensations within my residual leg (pressure, or pain) can actually transform into phantom sensations. It goes from residual limb pressure/pain->sensation->phantom pain (usually). Although phantom pain can come on, on it's very own.

Anyways, now that I've clarified that, it should give you a better idea.

I realize this post might concern (or be disconcerting for) some of you, to read it. I'm currently in a transition period with regard to recovery and with that I'll probably need to expect more pain, but try to believe this is all going to be temporary. It's further complicated by the fact that my pain provider and I are trying to reduce my doses of pain meds. Next time I see here, I'll agree to another voluntary reduction, but we might need to slow down the expectations that I'm going to rapidly reduce my reliance on them at this time. However, I do feel bad because my pain provider has been truly an angel as she has watched me navigate these 10 surgeries over the course of a 19 month period. I guess the final factor in this, is simply me wondering if this phantom pain will eventually go away. I try to imagine myself in a job six months from now and given the distraction of my pain and my limitations (at least currently), it's just mind-numbingly overwhelming for me to consider.

I have considered keeping these feelings private, but again, I want all of you to know I am struggling, but continuing to hold on as I try to weather my way through the next 2-3 months. I just hope and pray things will get more pleasant/normal with time. While I can gripe about all the of the neural plasticity in my brain that is causes me untold amounts of (embarrassing), that same neural plasticity with time can be put to good use - thus allowing me to more fully, and eventually adapt to life's circumstances - I HOPE! To be honest, the notion of rocking a microprocessor leg on ice is not my definition of a good time. It wasn't a good time with my endoprosthesis and surely with the lack of feedback and proprioception, seems all the more scary. So let's hope this winter is unusually mild.

Finally - no pressure, but I welcome any of you that want to reach out to me, but have been afraid to do so, feel free to do that. You aren't bothering me by checking in on a personal level. I'm just sorry that I don't have the wherewithal, thoughts, or resources to independently reach out during this time - but I'm happy to converse in reply to your initial messages. Thanks!