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.

Sunday, January 28, 2018

Strategic Detachment

I talked about this concept with my late friend Jon Penner from work. He was in the military for many years before moving to a career as IT professional and a civilian life. We met through work, I was his HR Advisor. We just seemed to hit it off despite our very different backgrounds.

We talked about detachment the sense of consciously removing the emotional reactions from a situation to deal with the cold, hard reality. His was cancer, and he was trying to make preparations to go through his first round of chemo. Mine was my 5th or 6th shoulder surgery, and trying to cope with emotional turmoil that accompanied it.

I seem to be deploying a similar tactic for surgery #10. I've had pain in my shoulder for the past 4-5 months, and after two consultations with my surgeon and one with my neurologist, and no real ideas on the source of the pain, I'm having an(other) arthroscopic biopsy on February 14th to take samples and see if there is an infection. I'm not even sure what outcome I'm rooting for.

Door #1 holds at least two more surgeries with three months off work for each, a PIC line with IV antibiotics for weeks and the very real possibility that they may not be able to put me back together again.

Door #2 holds pain with no real source and no real path to determine the source. My surgeon looked stumped, and that's not a good thing. I see many more months of poorly contained pain and the possibility that the source may be ultimately elusive. And where does that leave me?

Neither of these options is particularly appealing. 

I've tried to tell myself I'm dealing with this well by taking it one step at a time, and not looking too far into the future. But I don't think I'm fooling anyone. I'm just putting off the avalanche of anger, frustration and fear that is coming. I can't plan any further than the end of February. That March break trip we were going to take? Nope, on hold. That business trip to our London, UK office? Nope, unknown if I'm going. 

My RA is not well controlled right now. My pain is not well controlled. My emotions are not surfacing. This can only spell trouble for someone as emotional as I am. There is most likely a shit storm of emotional upheaval in the making and I'm not looking forward to it surfacing. I've not even cried about the fact I'm having another surgery. I'ts like it was inevitable and I'm accepting it. I've detached myself from the upcoming surgery as a survival mechanism.

I've been listening to melancholy music to match my mood. This time it's Blue Rodeo and one of their classics from the 90s "Till I am Myself Again". I'm not feeling myself these days, but I know as the surgery date comes closer I'm sure this detachment will fade away and I'll be back to myself.

Saturday, November 18, 2017

Feeling a little lesser

It's hard to describe that slow slide into old habits. You just start behaving differently and within a few days, a week, a couple of weeks, it's the new normal. Only after some pause and reflection that you realize this is not how your life was a month or two ago.

I was back at Module "O" at the General Hospital here in Ottawa yesterday. I reluctantly made the appointment to see my shoulder surgeon, and trudged off at the appointed time this afternoon. In making and attending this appointment, it was an acknowledgement that the pain in my shoulder was a) real, b) substantial enough to do something about, and c) something I need help with. 

I really like my surgeon. We have a good relationship, as well we might after nine surgeries together. We had a good discussion about how long this has been going on (6-7 weeks), what kind of pain is it (throbbing, sandpaper-y), when am I experiencing pain (it seems to be escalating, as in it is starting to become more prominent earlier in the day and sticks around until bedtime), what I've been doing (mostly pain meds and less activity) and what do to next (here comes the crappy part).

Neither of us is super keen to open up my joint. For those of you just joining my blog, I've had two infections on past shoulder surgeries and I'm not keep to open up my joint to the possibility of another one. My x-rays showed the hardware looks good, and seems to be solidly in place. Given I've only had pain for the past 6-7 weeks, a wait-and-see approach is not a bad option. I'm on pain meds daily - the variety, frequency and quantity change daily. I have some good days, and some bad days. No real causation that I can determine between my good days and bad days, my activity and my meds. 

The downside of wait-and-see is that I'm in pain, daily. I will see him again in mid-January to see how things are going. 

I'm trying very hard not to panic. I'm trying to wait and see what happens. I'm trying. But the possibility of more shoulder issues, and the slim chance of another surgery is devastating. And I've had more than a few tears this week as I try and look to the future and see where all of this is heading. 

I have - however - started to drive more one handed as my right shoulder is sore. I've started to favour my left arm. I'm exhausted from the pain, so I've started to lie down when I get home from work. I'm just doing less, and feeling lesser. Normally I can pull off being "normal". That seems to be harder to do these days, and I'm less interested in trying. It just takes too much damn effort.

The National is one of my favourite bands. They have a new album out and a tour all over North America, hitting Montreal in December and I'll be going. Empire Line is one of the new songs, and the hypnotic beat and repetitive chorus reminds me to keep my chin up, I'm sure I can find a way.

Thursday, November 9, 2017

Not Good

I was listening to my favourite podcast a few days ago, the "Ongoing History of New Music" hosted by Allan Cross. I've been listening to this show on and off for over 30 years. The episode was a tribute to Gord Downie of the band the Tragically Hip, who passed away in October. In the episode, there were snippets and quotes from Gord directly, and one struck a chord too close to home and I started to tear up immediately.
"Humour comes from these bare, bottom of the barrel moments that would crush people, even if they knew they happen to you. You help each other through these things. You forget them because the brain tells you to forget them. You have to artificially resuscitate memories like these."
Two parts resonated with me.

First, using humour to get through moments that would crush me. The sheer number of surgeries, pills, pain and tears of the past 26 years could have easily crushed me. I use humour and a positive attitude to get through my RA stuggles. 

Second, the idea that you need to forget some of your experiences to keep moving ahead, that they are buried deep in your mind as a form of self-preservation. You can't have them at the forefront, the pain is too great.

Looking ahead, I don't know if there are enough laughs to pull me through. I've been having increasing pain in my right shoulder (yes the one that has endured eight surgeries since 2011) and I'm terrified. I started in denial. Work was insanely busy in October and very stressful. I blamed the pain and discomfort on stress. It's now several weeks past the stressful time, and the pain is there, and cropping up at rest. For those in the know, pain at rest is not good. For anyone. Ever.

As I type this, I'm waiting for my rheumatologist to appear in the consult room. I'm going to start by talking to him, but I know the real next step is a trip to my shoulder surgeon. I'm trying to put my utter panic on hold until I have further information. It's not going well.

The Hip are still on my mind, given the passing of their lead singer. While the content of this song is not necessarily relevant to my post, the mood, the melancholy feeling and chorus resonate with me. "Long Time Running" describes my relationship with RA and reminds me it's not ending anytime soon.

Friday, October 27, 2017

Spending Spoons like a Drunken Sailor

For most of us in the auto-immune world, the Spoon Theory is the language we use to communicate our energy levels and how exhausting it can be to have a chronic disease. I've not used it much, but it's a powerful metaphor for how we get through a day and try and allocate our energy.

I've been on a new biologic, Xeljanz, for the past three months. I've also started back on Leflunomide  around the same time and am still taking the ever-present steroids. And throw in some form of pain meds as and when needed - more often than I'd like, but a girl's gotta live.

I'm approaching this blog entry slowly, tip toeing up to the topic, not wanting to disturb anything. Because I may actually have some energy back. Maybe. I may be taking less pain meds. I may not have super swollen feet 24/7 that are hard to walk on. I may actually be feeling a bit better. Possibly. But shhh. Don't tell anyone so I'm not jinxed.

So, of course, I'm spending spoons like a drunken sailor!

Why not? I've been feeling pretty crappy for - frankly - several years and this is the first time in recent memory that I don't have to meter out my energy worried about how I'm going to make it through the day. I can make it to the end of the day, and still have some spoons left. It's like I'm almost a normal person. Almost.

But I'm an over-doer. I try and cram too much in. And I'm paying for it this week. Work has been busy with lots of stress, long hours and weekends, with no real relief in sight. Home is busy with hockey time two, competitive swim schedule, dance, homework and trying to feed everyone and ensure that they are in the right place at the right time with the right equipment (trickier than you think!). However - I'm not as bad as I've been in the past under similar circumstances. Again, don't tell my body that. I'd hate for it to revert back to it's usual state of flare.

As every good Canadian knows, Gord Downie, lead singer of the band the Tragically Hip, passed away last week. The Hip were an integral part of my musical life since high school. His poetry, expressed through song, provided support, meaning and insight at various points in my life.

One song that stands out in light of this post is "Firework". It's my go-to Hip feel better song (apologies for the language). It's about how temporary things can be - they can last as long as a firework. I'm hoping upgraded spoon allotment is more permanent.