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

Happy Anniversary… to My Pain

Today marks the 18-month anniversary of my illness.

An illness that has yet to be definitively diagnosed, but is characterised by uninterrupted, severe pelvic pain. Pain that landed me in the emergency room last Thursday in spite of the colourful assortment of pain medication I must take at hourly intervals to maintain what I now refer to as my “normal level of pain”. I’ve lost count of how many visits to the ER that adds up to now. Although, during this 12-hour visit I had the tests that I most likely should have had within the first ten days of becoming ill in August 2013 – the awe that still fills me when I think about the fact that I never had a CT scan during my hospitalization is overwhelming.

So, I suppose the obvious question is what are my small surrenders?

I now live out my days within the approximately 600 square feet that are my apartment. I haven’t returned to work since the day I was wheeled out of my apartment to a waiting ambulance and hospitalized for two weeks. Some of theses days I sleep more than a newborn and wake so disoriented I don’t know what day it is. On others I can’t sleep at all. But I sleep, or not, within this space.

Most days I’m unable to think beyond the pain. I have to fight for mental clarity to focus on the colourful squares in the compartmentalized box filled with haze-inducing pills that permit me to move my body between couch, kitchen, bathroom, and bedroom. Sometimes, moments after silencing one of the multiple alarms I have set to remind me to take those pills, I forget to take them because my mind is perpetually clouded and I am easily distracted. When this happens my nerves protest and prompt me to take action to soothe them.

I can’t go for walks. Walking causes my pain to intensify and the compartmentalized pills make be feel like I have a very stubborn inner ear infection (translation: I’m not always steady on my feet). This lack of movement has led to a degree of muscle atrophy in my calves – not even the highest pair of heels could help to camouflage the disappearing definition that once existed below my knees – and my legs continue to get weaker.

Not being able to walk much puts limitations on other things like going out with friends or running errands. I have visits from the friends and family who have stood by me since the beginning – some in person and others virtually. Once in a while I go hang out on their couches for a few hours or a few days. I don’t have visits from those friends who don’t know how to cope with my illness; or those who were never truly the kind of friends I believed them to be to me – illness teaches you a lot about people. As for errands, I now have just about everything delivered.

These are some of my small surrenders: accepting and living within the limitations of my pain. It has not been easy and it seems that the longer I’m sick the more I have to surrender.

 

I will leave you today with the only song I could think of that talks about surrender, even if mine is not as sweet.

Sarah McLachlan – Sweet Surrender