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.

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.

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.

The reason I write

Oh, it's been a while. Like a year and a half. I've been busy being a mom, full time HR guru, Parent Council President, hockey mom, swimming mom and working through all this with a very flare-y arthritis-ridden body. It's been a roller coaster of flares, prednisone (up to 50 mg per day!) and failing out of 3 biologics. Goddamit. I'm crying just writing this. 

I'm trying a new style of writing with this re-invigoration of my blog - less editing, more stream of conscientious, more raw honesty. We'll see how this goes. 

We had some people over on Saturday - hockey team parents - for a get to know you gathering. Nice people, good event. We talked about kids, work, hockey and then started discussing where we went to school and what we studied. I have a writing degree and someone asked if I write outside of work. Well, I offered up that I had kept a blog chronicling my RA journey. 

One of the ladies eyes lit up at the mention of Rheumatoid Arthritis and launched right into all the diet changes she's made that have taken her off all her meds and now she has no symptoms for her Psoriatic Arthritis. I commented that I had tried that path with limited success. She pursued the conversation.

Sigh.

I tried to find my grace as a host and a human being, but I’m sure a trace amount of annoyance came through as I felt needed to defend my health choices to a total stranger, in my house, in front of my guests. I used words like “nine shoulder surgeries” and “severe rheumatoid arthritis” and “26 years”, but no – apparently diet changes and going gluten-free are going to solve all of my problems and get me off all of my meds. 

This is why – for years – I didn’t tell people about my RA, didn't write about it, didn't Facebook it. Nothing. Nada. I don’t have the energy or patience to educate or explain my disease to strangers who really don’t get it. Nor should I feel the need to defend my health choices to complete strangers. But I did feel the need to defend my choices. This conversation upset me so much, I’m back at the keyboard looking for some therapy.

I have tried alternative and traditional therapies, diet changes, supplements, acupuncture, laser therapy, massage therapy, a complete elimination of all grains and dairy – all with minimal to no success. The effort required was not worth the minuscule improvements I saw in my health. And - frankly - it's none of anyone's business how I approach my health.  

It's four days later and I'm still frustrated by how much this has gotten under my skin. One of my favourite songs from the past year has been "Float On" by Modest Mouse. It's about moving on despite setbacks you might have. That's me. Trying to float on with my RA.