Tag Archives for journal

In The Not So Still Night

In the early hours of this morning – when I woke up for maybe the third time in what should have been a full night’s sleep – the strangest questions crept into my half-drowsy mind: What if the high dose of pain medication I’ve been taking since my surgery is the dose I should have taken all along? What if I’ve been looking at this all wrong? What if I kept landing in the emergency room as often as I did before was because I wasn’t prescribed the correct level of pain medication? After all, the doctors at the pain clinic had expressed a fear of not being able to manage my post-surgery pain if they prescribed a higher dose of pain medications before my surgery.

That had been the point of the nerve block – to give me more pain relief without prescribing more oral opioid pain medications. But what if my nervous system is so damaged by whatever underlying illness caused the pain to begin with that I needed more pain medication or possibly a different kind to manage my pain? Instead of feeling this high level of anxiety about taking more pain medication, shouldn’t I think about how many times in the past two years I landed in the emergency room for extra pain relief or the countless sleepless nights I had because of the pain? Shouldn’t I feel more positive that the pain specialists recognize the need for better treatment for me?

I just stopped writing and thought about those things for a moment. I haven’t landed in the emergency room since surgery, but I’m still having the sleepless nights because of pain even with the higher dose of pain medications. I still can’t travel in a vehicle without feeling pain afterward that forces me to rest to recover from what shouldn’t be an ordeal; and walking any significant distance is out of the question. Unfortunately, stopping to think raised more questions. The main ones being, what if pain medication isn’t the answer for me or what if I need an alternative method of pain management that hasn’t been tried yet? And worst of all what if I am as unusual a case as they think that doesn’t come with a straightforward cure.

So why am I awake in the wee hours of the morning ruminating over these torturous questions? Do I or don’t I need more pain medication? Should I have had this higher dose sooner? How long should I take it at this high dose? Should I focus on lowering the dose – if the higher is what I need – so significantly so soon after surgery, and if not, how much harm will extended use cause me?

How many more days and nights will I wake to find these types of questions pouring out of me in small trickles or gushing as if busting through a dam? Maybe what’s doing more harm is my inability to just allow myself to be sick and count on my body to do what it needs to do to heal itself, instead of forcing my mind to hold all my pain.

Kim Carnes – Crazy In the Night

Pathology Report: I’m Breathing a Little Easier Now

My surgeon received my final pathology report. None of the organs or tissues removed showed any signs of cancer or any other diseases that need monitoring. The mysterious growth is less mysterious now because it’s not the congenital disease initially believed and it’s not a cancer. Now, it is more clearly a cystic growth that my doctors view as incidental to leading them to discover my chronic pain condition. The chronic pain is now the mystery that requires solving.

To solve that mystery I will go to monthly appointments at the pain clinic. I will also work to taper my pain medications to a lower dose based on what my body can bear. In my last meeting with my pain specialist, we discussed trying acupuncture to see if that gives me any relief. She’s open to trying anything, as am I, which does not require another invasive procedure but may deliver some positive results.

The strangest part about all of this is that my family and friends, with whom I’ve had the opportunity to share the news, might actually be more relieved and happy than I am. I don’t mean that I’m not happy that I don’t have cancer. I mean that I’m disappointed that after two years, so many invasive procedures, including this major surgery and an ocean of pain medications, I still don’t have a final diagnosis. I’m still unable to perform the simple act of going for a walk without suffering painful consequences and I’m still stuck inside my approximately 700 square feet of space most days because of this pain. Even though I know it would have been close to miraculous for the pain to be gone so soon after surgery, I want it gone.

Just over a year ago, I decided to approach my condition as if it was something I had to live with long-term to avoid this kind of disappointment. However, if I’m being honest that wasn’t a real decision or commitment to a new way of living. I was still bargaining with the universe, even if I didn’t want to admit it. I was still desperately clinging to hope that there would be no permanence in this situation. I know this still may not be permanent, but I’m not sure it’s wise for me to grasp so firmly, to hope about what might not be if my pain mystery remains unsolved.

Instead of falling on either side of the line of what could be permanent, I’ve decided instead, to take the approach of breathing a little easier for now. I’ll continue breathing easier unless the day arrives when breathing easy hurts too.

 

Anna Nalick – Breathe (2am)

 

The Pain in Fragile Human Connections

Life has a way of reminding us of how fragile each of us and each relationship connecting us can be. As I’m working through my recovery from surgery and ongoing chronic pain, I’m trying to support a younger cousin to hold her life together while it disintegrates in front of her. She’s pregnant with her third child and her partner walked out on her and their two young children, who are five and two, days after her doctor ordered her on bed rest. From the sounds, and looks of things, he’s been planning to leave for some time but failed to mention it to my cousin who is now eight months pregnant.

As much as I’ve seen and experienced in my life, this shocks me, and I don’t understand – even with my parents’ history – how someone can walk away from his or her young, and unborn, children. I don’t understand how one person can believe they have the right to make such a significant decision knowing it will negatively affect the lives of four other people and move on with their life without missing a beat. I don’t understand what he tells himself when he chooses not to answer his phone when my cousin calls him in the middle of the night because she might need something for one of their children or she might be experiencing severe cramping, or be in labour – premature or active. I don’t understand how he can cut himself off emotionally from having any interest in knowing how the child she is carrying in her belly is thriving – or not. He doesn’t attend her prenatal appointments, he doesn’t ask about test results, he doesn’t ask about her pain or if she’s resting and he never asks if she’s eating well, or if she needs help caring for their other children.

I know that no relationship is perfect – and I certainly don’t believe my cousin has no fault in the breakdown of this one – but I don’t understand how he could choose now to leave. What did he tell his five-year old daughter when she asked where he was going as he packed his things? How does it feel not to be there when his children wake up in the morning and when they go to sleep, when he has been there every day of their lives since they can remember? How did it feel when he walked out the door leaving the heavily pregnant mother of his children behind?

I’ve been speaking to my cousin every day since this crisis erupted in her life a few weeks ago. I don’t believe the pain I’m feeling because of my illness is anywhere near as severe as the pain she’s feeling from the breakdown of her family. To ease my pain I can take pain medication but there is nothing I can offer her to reduce her pain. She speaks of her heart breaking. I can offer no cure, but because I’ve had my heart broken, I know the only balm that will give her pain relief, and possibly heal the rupture, is time.

I also know I must show her that our connection is not fragile. However, the only way my fragile, pained body can show that is with open ears and open heart, and I hope that’s enough to help keep her whole and strong.

 

The Five Stairsteps – O-O-H Child