Tag Archives for congenital condition

Monday Monday

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

The Mamas & The Papas – Monday Monday

In-head Screams

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

The Screaming Sheep (Original Upload)