I have spent the last few days recovering from the procedure I had on Thursday that failed to deliver the results my surgeon was hoping it would achieve. Although it did make me have a pain flare up. Thursday night was very uncomfortable and I woke up every few hours during the night. I was fortunate to have pain medication to cover me during the night– the pain specialist modified my medications a few weeks ago to make sure I have pain relief when I’m awake at night, which is typical of my life now.
I’m now back to what I call ‘normal pain levels’. The sharp pain I had because of the procedure has passed. What’s left is the pain that is always with me. The pain that reminds me that there is something wrong with my body that needs to be put right.
Tomorrow morning (Monday), I’ll be meeting with my surgeon to discuss what she believes should be the next step. She has already made it clear that she has significant concerns about performing the surgery prescribed for my condition. Tomorrow’s appointment will push me closer to making a decision that may change my life so drastically I won’t recognize myself.
It isn’t noon yet and my anxiety about tomorrow’s appointment can’t be measured.
I leave with The Mamas & The Papas whose words I hope are not an omen of what I should expect tomorrow
I scream inside my head every time someone tells me I shouldn’t be feeling the level of pain I tell them I am or they try to downplay the seriousness of my condition before they have heard the details. I’m waiting for the moment when my head will explode because my in-head scream hits too high an octave for the membranes enveloping my brain to withstand causing my grey matter to splatter all over the next mindless person who dares to tell me how I should feel or act or what the norm should be. Maybe then they will hear me when I tell them I’m in pain.
Today that person was an Interventional Radiologist who deigned to tell me, before thoroughly reviewing my chart, that lots of people have my condition and it usually goes away on its own with time. What he had failed to glean from my chart was that my condition is an unusually rare congenital condition that never goes away on its own. The only fix for it is a complicated, sometimes life threatening, invasive surgery, and this condition is known to cause extreme pain in those who have it.
If he had read my chart he would have also learned that as rare as this condition is my situation is more complicated than most, which means my doctors can’t treat me within the bounds of the ‘normal symptoms’. This is the reason my surgeon is trying every possible non-surgical option before subjecting me to a surgery that may not relieve my pain but could cause serious post-operative complications that would further diminish my quality of life.
I wish my in-head scream had caused my brain to explode all over his pristine, white lab coat. At least that would have provided me with something to be upbeat about after his attempt to perform a procedure to reduce my pain failed.
Today I leave you with what it kinda a sounds like inside my head sometimes
It’s been very hard spending so much time alone while being so severely ill.
I’ve known since I was very young that I think a lot. Actually, some would say that I think too much. I might be inclined to agree.
My thoughts have become very circular in some difficult moments: is my illness a boomerang of bad karmic energy that I deserve as payment for something terrible I did in the past; how much longer can I possibly live like this; what if the doctors can’t “fix me”; and how can I possibly continue to do this alone?
These thoughts take me dangerously close to the edges of a rat hole I know it’s possible for me to fall into under the right circumstances. I have to work hard to keep my mental health healthy and some days I just barely come out on top. Some days it feels like it would be easier to give in, but the choice I make instead is to not fight against my thoughts and feelings so hard because it adds to my physical pain and causes me additional psychological and emotional pain.
I’m trying, instead of thinking so much, to accept this challenging experience for what it is. At the very least, I don’t blame myself for being sick anymore. At the beginning of all this, as irrational as I knew it was, I tried to figure out what I could have done to avoid getting sick. Even after I learned that my illness most likely resulted from a rare congenital condition that could never be prevented. I try not to wish my illness and the accompanying excruciating pain away because it requires a significant investment of my energy. Energy that I need to function at the most basic level some days. I also try not to blame anyone else– not even the doctors who misdiagnosed me at the start of all this.
Hardest of all, I try to be present with the pain. Being present means: noticing how the pain is changing my body and my mind; moving my body in ways that don’t aggravate my pain– not always successfully; and moving slowly, carefully and deliberately in every physical action I make so I don’t drop things or drop myself– again. It also means I try not to feel guilt when after doing very little I’m so exhausted I need to nap in the middle of the morning, afternoon and/or evening– like I did for about three hours in the middle of writing this entry.
The final thing is something I’ve always done but I work at even harder now. I work at being grateful for the people who love and support me. One of the ways I do it may not, at first glance, seem like gratitude but I work at allowing them to help me because I’ve never been good at asking for or accepting help. And I need help now like never before– even if I can’t always admit to it. But I can admit that each time I reach out to someone I can feel a shift in myself and I feel a little less alone.
Today I leave you with some thoughts from the Queen of Soul, Aretha Franklin – Think [1968]
My Small Surrenders 