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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)

Zentangle

I have been feeling frustrated because all the pain medications I’m taking make it difficult for me to function normally.

The part of my life that I miss most is being creative. My mind is blocked in a way that it never has been before and there are moments when I feel cut off from who I used to be.

Last night I felt a spark. While I was clicking through pages on Pinterest I found something called ‘Zentangle’ that is “an abstract drawing created using repetitive patterns… intended to make the act of drawing pleasurable, meditative and accessible to all”.

This art form does not require any structure or major concentration. The images you can create from just drawing lines are beautiful.

I believe I have found my new creative outlet.

Zentangle 1by Peter-D

Zentangle #1by Peter-D

zentangle doodleby flybye669

Zentangle doodleby flybye669

Pain Clinic #1

I went to the pain clinic on Friday.

I can say that so casually now.

It has become a necessary part of my life. The pain specialists make sure I’m getting the right level of medications for pain management. They assess my condition to determine what procedures might help to reduce my pain. They are really good at communicating technical details in a way that’s easy to understand and setting my expectations. Most importantly, they quieted the doubters (the insurance company, my family doctor/primary care physician, and other specialists) who questioned, for different reasons, why and how it was possible that I could be in so much pain based on my initial misdiagnosis and even now with what my surgeon identified.

Having pain specialists as part of the team of doctors treating me has also become important to my friends and family. They are more comfortable with my treatment plan now that I have this extra level of care. When my pain spikes to unbearable levels my friends and family ask if I should call the pain specialists to have my pain medications adjusted. They ask when my next appointment at the pain clinic is scheduled if they think I need support. And they ask if the pain specialists agree with my surgeon’s opinions about how to move forward with treating my condition.

At Friday’s appointment I saw the doctor I met during my first visit last summer– I like her a lot. She adjusted my medications to help with my night time pain and the high blood pressure I now have because of my pain. Then she talked to me about the procedure I have scheduled for later this week. This procedure will help my surgeon determine if the only surgery known to be able to correct the condition I have might help or hurt me further because my illness is rare, but my case is more complicated than most documented cases.

The doctor outlined the possible outcomes for the procedure and she set my expectations. I could end up having a major pain flare up after the procedure and it may take weeks to see any positive results– if any at all. If my pain is not relieved then the surgical option will be taken off the table because the anticipated outcomes for my post-operative quality of life are very poor. The upside if this procedure fails is that the pain clinic may be able to provide some minimally invasive treatments to help me cope better long-term.

My situation may not be ideal, but I feel very fortunate to have access to this clinic and such a caring team of doctors.

Today I leave you with Joan Armatrading singing about physical pain of a very different nature than mine.

Joan Armatrading – Physical Pain