Saturday, February 24, 2018

I hope you feel better tomorrow, mom

It's been a bit of an uphill battle since my surgery 10 days ago. The pain is not really subsiding, I'm certainly worse off than I was pre-surgery and this has been a tougher than expected recovery. I've had some weird side effects that I'm still sorting through - several of which make me think that I really do have an infection. Monday - when I receive my results - can't come too soon.

This is all substantially easier to manage than the emotional "hope you feel better" comments I'm getting from my kids. They don't know what to say, they want me to feel better, and this is their best way to express their concern and genuine hope that I will feel better.

If I've never said it before, let me be clear, I have awesome kids. They are kind, witty, smart and compassionate. Chelsea is 10 now, and I had my first shoulder replacement when she was 2 and Patrick was 4. They've only ever known me in and out of shoulder surgery. The questions and answers have changed over the years, and I've been honest with them as best I can without scaring them. Kids need to know parents are both human and superheroes at the same time. I can be sick, but I will duel to the end with my arch enemy (RA) and I will win. Kids need to know that, they need the reassurance of our permanence.

Tonight I was watching a movie with Chelsea, and she asked how I was (I looked a little slumped and in pain, which I am) and I said I was just ok. She then commented that I'd had a big day and it made sense I didn't feel good. She knows that me overdoing it equates to pain and fatigue - not really in those words, but the concept is there.

How do I tell them that I will never get better tomorrow? I may feel better, but that my health trajectory is likely heading downwards, not upwards. Not to be negative or hopeless, but I have a chronic condition that does not currently have a cure. I've been in a steady decline of my health in the past few years between the surgeries, failed medications and increased pain. My "tomorrow" does not appear to be any day soon.

I was listening to sad acoustic covers (that is actually a playlist on Google Play) and came across "Lean On" which is normally a dance track, but I liked this acoustic cover. And until I feel better, I'm glad I have them to lean on.

Wednesday, February 21, 2018

It all comes down to expectations

This picture perfectly sums up my recovery thus far from my shoulder biopsy. Given it's my 10th shoulder surgery,  you'd think I would know better. It seems I don't. I'm struggling a week post-op thinking I should be doing and feeling better than I am. And through a very frustrating past couple of days, I've realized that it's my expectations that are the problem, not necessarily my recovery. 

I feel there are things that I gloss over because I've been through so many surgeries. If this had been my first surgery, I would have had lists and lists of questions and would have been very academically prepared with information. Since this is the 4th time I've had this specific procedure, I walked in with experience, but very little academic information. 

I somehow didn't remember that I had to have my football-player type shoulder pad bandage on for 5 days before I could remove it and have a shower. I never really asked how long I should be off work. I know it varies by person and their job and their pain level. Somehow I expected that I would be ok to work on Tuesday, a mere 6 days post-op. Reflecting back, I'm not sure what the hell I was thinking. I didn't go to work yesterday, I worked from home. It went ok. And then I took my ok-feeling arm for a spin and cooked dinner and did a load of laundry. That did not go ok, so I rested. 

Today, I went to work and was in a reasonably distracting amount of pain at 7:30 am sitting at my desk realizing that it was a pretty big mistake to be there. I stayed for a meeting and left, working from home this afternoon. I consider myself a fairly smart person, but I seem to be making some pretty dumb assumptions  and decisions about my recovery. 

I think this morning was a pretty clear wake up call for me. There was no reason for me to be in that much pain, sitting at my desk and trying to work. It was completely avoidable and unnecessary. The only person who expected me to be there was me. Had I only listened to my body and not felt like I could/should breeze through my recovery, I may have actually prevented myself some pain and frustration.  

All of this is taking a bigger mental toll than it otherwise needs to. I'm upset. Frustrated. Short-tempered. Tired. Discouraged. Sad. Oh, and in pain, of course.

This song might be a bit dramatic as a reaction to today's insights, but it's one of my brother's favourites as far as I know, and it's aptly titled "Hurt". This version is by Johnny Cash and it's a cover of Nine Inch Nail's song. It's about living with the choices we've made, regretting some that we didn't. Today didn't represent some of my best choices, but I get another chance tomorrow.

Wednesday, February 14, 2018

It's just a little surgery

Is any surgery a "little" surgery? Is it fair to say it's "just" day surgery? Have my expectations for what a "real" is surgery risen so high that my upcoming surgery will escape my notice?

No. No and No.

There are no little surgeries. Each surgery is an event unto itself with various emotions, pain, problems and potential outcomes. While my surgery on February 14th is a day surgery, I feel the weight of it, in particular as the date draws nearer. I'm moving into familiar pre-surgery emotions and routines. I'm sleeping poorly, I'm stressed, I'm trying to tie off everything at work, I'm emotional, I'm sad and I'm feeling pretty fragile overall.

In the past couple of weeks my pain has increased to a point where pain meds are starting at 10 am not mid-late afternoon and there are multiple doses in a day. I'm woken up by pain in my shoulder and I think I can feel the joint may be slightly warmer than the surrounding area. All this to say, I'm mentally preparing myself for there to be an infection, even though this is possibly the worst outcome.

I’ve been listening to some of my favourite music from the 90s lately; it’s a source of comfort.  Specifically, I’m back to listening to a long-standing Canadian rock band 54-40. They put out an album in 2016 of their greatest hits re-imagined. I love it.  In particular, their newest version of “Lies to me”.  The lyrics open with “What is wrong with me, am I supposed to be happy all the time?” That is a good summary of my current state.