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Second Opinion Surgeon

My Reluctant Surgeon continues to do things to gain my trust and confidence.

She has come through – a lot faster than I expected – with an appointment for me to be assessed by a more senior surgeon for a second opinion. I received a call from her office with a date to see the Second Opinion Surgeon in the next four weeks. My Reluctant Surgeon is sending me to him because she has significant concerns that the surgery I need might harm me more than it will help me.

I have a rare congenital condition that is detected by a single symptom: debilitating pain. It can only be treated by one thing: invasive abdominal surgery. My diagnosis was confirmed when my condition was very advanced and I had already been categorized as a chronic pain patient. The advanced stage and chronic pain are what make my Reluctant Surgeon so reluctant. She does not believe the surgery will eliminate my pain. At this point she and the pain specialists believe I have nerve damage, which may cause me to have greater pain after the surgery. And to top it off, I have a complicated form of this rare congenital condition. This exponentially increases the odds of me developing every known post-operative complication associated with abdominal surgery, and my Reluctant Surgeon is concerned that there may be unknowns that fall outside the scope of her experience.

So it will be up to the Second Opinion Surgeon to decide if I should have the invasive abdominal surgery. His additional years of experience are being counted on to find a surgical path to successfully remove the encroaching mass – that suddenly disrupted my life 18 months ago – without further harming my body. And, I’m hoping, those same skills will lessen my pain.

But I have to try not to get ahead of myself the way I did with my Reluctant Surgeon. Before my first appointment with her I had convinced myself that my condition was temporary – even with the knowledge of the known risks of the abdominal surgery. I was devastated when she told me surgery might not be an option for me and I might continue to be in pain for the rest of my life. Going into this appointment with the Second Opinion Surgeon, I want to be grounded in the reality that I could hear the same opinions. Although, a big part of me is preparing for the possibility that I will have to take a huge leap of faith toward and hope for the best.

 

George Michael – Faith (US Version)

Low Energy Day

Today was a low energy day.

I didn’t sleep well last night – partly because I fell asleep in my living room sitting upright in a chair then couldn’t find the energy to get up to walk to my bedroom to get into bed. When I finally woke myself up this morning I went straight to bed. I slept on and off until about 3:00 PM when it was time to take my afternoon meds and I felt annoyed with myself for being in bed all day.

Days like this really frustrate me. I know I sleep because my body needs it, but it still upsets me when I lose an entire day. Staying awake is a struggle some days but the more I struggle against sleep the more I hurt. To add to my frustration, while trying to get comfortable in bed today I discovered another range of motion I have to avoid repeating.

Because I’ve been asleep most of the day I haven’t eaten, but the thought of going to the kitchen to make something to eat is exhausting.

 

The Beatles – I’m so tired

Pain and Intimacy Don’t Mix

When I became ill I was not in a relationship. Now I can’t see how it will ever be possible to start a relationship.

I’m in pain every minute of every day. That’s not exactly conducive to fulfilling my carnal or emotional needs or responding to those of another person. But to get those needs fulfilled I’d first have to have desires. I have none. I don’t think about being with anyone. Not kissing. Not touching. Not having sex.

I spend my days trying to focus on doing the most basic activities – showering, dressing, taking medication, eating, sleeping – so thoughts of intimacy rarely make it to the front of my mind. If they do, they are in the form of longings about what used to be; with a resigned acceptance that I may never experience the comforts and pleasures of a relationship again.

My friends try to reassure me that my illness doesn’t have to rob me of a full life that includes being close to and sharing my life with someone else. I’ve also been told that I need to expand my definition of what sex is to include more than intercourse. But the issue isn’t just the act of sex. I’m in so much pain all the time I can’t imagine someone touching me or getting close to me with physical intimacy being the goal. Besides, I’m taking so much pain medication I don’t know if I could think clearly long enough to get to know someone sufficiently to decide if I would want to be in a relationship with them.

So what do I do? How do I pursue intimacy knowing that I might not be able to make my body follow the will of my mind? And worse still, what happens if the pain never gives me a break so I can think, talk, and act on behalf of my desires when they show up?

U2 – Desire