Can't escape the pain

It's been over a year since my surgery. I've halfheartedly started a few blog posts, but didn't get anywhere with them. In my experience, when I need to post the most is precisely when I don't post. That would continue to be true for the past 12 months.

Post-op a year ago everything was just ducky. Good recovery. Took lots of time to make sure I was strong before heading back to work. And then. Then the pain started in October, it increased through November and December and took a turn for the worse just before Christmas. Then I knew things were bad that even with pain meds - Tramadol for the most part - I was waking up with pain in the night, and was looking forward to my 4 hour window so I could take another dose. Then I graduated to Dilauded and have been there ever since. 

I'm highly uncomfortable with taking narcotics every 4 hours just to function, and that doesn't even manage all of the pain. I've re-upped my medicinal marijuana prescription and need to order some more with the hopes that if I can reduce some of my narcotic use, that will allow me some pain relief and lessen the discomfort I feel every time pain meds.

I consulted my surgeon in December, got x-rays and a CT scan and nothing turned up to explain the source of the pain. 

I sought a second opinion in March at the Hand and Upper Limb clinic at St. Joseph's hospital in London, ON (the not exciting London). The doctor had some good ideas about specific nerves and damage to them, but in the end, after trying a few options with no results I had a come to Jesus moment about my health and pursuit of a source to my shoulder pain. I just couldn't journey down the path any longer. I just didn't have the energy anymore to find the source of the pain. My fight was over. 

I talked to my shoulder doc about one last biopsy to ensure there was no infection and then hanging up the gloves. He agreed. Results showed no infection. I asked for a referral to pain management clinic and I'm now on the waiting list. Still taking my dilauded every 4 hours, still in pain. Still in a shitty mood due to the pain more often than I'd like to be.

If you'd told me 10 years ago I'd be here, I would never, ever have believed it. It's been a death by a thousand cuts, I'm the frog in the boiling water, it's the slow and sure diminishing of my spirit.

I spent all of my spoons on Friday (and tapped into much of Saturday's supply) going to City Folk music festival here in Ottawa. A couple of my favourite bands from university were playing and I was determined to make it through. I jacked myself up on some extra steroids, put on my comfy shoes and headed out to see Live, Bush and Our Lady Peace. While OLP  didn't play Thief, I re-discovered the song while I was listening to their music in the week leading up to the concert. They talk about a thief living inside of someone's head, it's based on a young girl with a brain tumor, and the thief stealing her life away. You can see why this song spoke to me. RA is taking more and more away from me, and I don't really have a good plan to get any of it back.

Correlation of Tea Consumption to Pain Experienced = 100%

With surgery 3 days away, I've got a lot on my mind these past few weeks. Wrapping up at work, getting things organized at home, getting through my nesting urges and navigating the usual pre-surgery emotional roller coaster that seems to come every time. 

To add to the list, my shoulder is now declaring itself done, and my pain has increased noticably. so much, that I am Googling pain scales to accurate encapsulate how much it hurts. I'm putting my pain at a solid 5 right now with some days at 4 and others at 6. 

I've been providing a pain number at rheumatology, neurology and orthopedic appointments for years.  They ask you to provide a number between 1 and 10 rating your pain, without any cues or clues as to what constitutes a 1 or a 10. And I think I've been doing it all wrong all along, and under-rating my pain.

I can clearly recall my 9. It was a few surgeries back, and they had taken bone from my hip to graft to my shoulder. For that surgery, I didn't want a nerve block (too many past issues), so I was at the mercy of the IV pain meds they were pumping into me. My pain reached the "worst possible pain you can imagine" and since then I've adjusted my pain scale and compared everything since then to those few awful hours in recovery as my pain was out of control. 

To address my increased pain, I spoke with my rheumatologist and she provided me a prescription for Dilaudid as the Tramadol and Tylenol 1's were not sufficiently addressing my pain, and I still had 3 weeks to go until surgery. The Dilaudid is helping my pain, however my emotional state is a whole other matter.

One of my coping mechanisms has been to drink more tea. It seems the correlation between increased pain and tea consumption is 100%. There is something soothing about tea that calms me, provides some caffeine and forces me to slow down for a few minutes and regroup. This simple exercise is one of the several non-medical ways I try and manage my pain. I've also been working from home in the afternoon for the past several weeks, which allows me to lie down for 20 minutes to rest. Plus the added comfort of being at home, in comfy clothes hanging out with my puppy provides some measure of soothing to my frayed body and emotional state.

I've been listening to playlists from Google Play. A lot of comfort music, which can be categorized as Alternative Hits from the 90s. I came across OAR's "Shattered" and it seemed appropriate for my current state.

Nothing to say

Odd to start a blog with saying that I don’t have anything to say. I have lots to say, I’ve just said it all before and don’t want to say it again.

I’m having another shoulder surgery. There, I said it.

As it turns out, there is space around the base plate of my socket on my right shoulder, and is likely moving, causing me pain. The good news, is that there is a source of my pain and it is mechanical, therefore – theoretically - fixable. I’m a bit a cynic when it comes to my expected surgical outcomes. Surgery hasn’t always gone according to plan.

Nerve damage. Inability to move my arm. Infection. Failed surgery. Increased pain. Loss of range of motion. Just to name a few.

They will take bone from my hip and move it into my shoulder to build up the bone stock. And then put me back together. A few surgeries back I had bone removed from my right hip. The pain from my hip was almost as bad as the shoulder, and quite memorable in the intensity and duration. Post-op I had a cane and a sling.  I was quite the sight and it was a really rough recovery.

In weighing out the risks versus benefits of tackling another surgery, the counterbalance is pain. I can’t continue to live with the pain that I have right now. I’m not interested in this level of pain for an indefinite period of time. My shoulder will not magically get better on it’s own – I know that for sure. That leave my choices at pain or surgery.

I’m picking surgery because I still have hope. I still believe there is a better shoulder out there for me, hopefully one that lasts more than 2.5 years. I thought I’d found it in 2015, but it seems there is another fork in my road, and I have another surgery to go. I’m only 42. I can’t give up yet, and – more importantly – it’s not in my nature to give up. I can be quite tenacious and headstrong, and with my RA, this seems to be serving me well.

A fragment of a lyric was stuck in my head, and I managed to work it out the song and the band. My taste in music is quite diverse, and it include some a fantastic punk bands called Green Day. Before you don’t follow the link as you are not interested in having your ears blown out, this is one of their more mellow tracks – Good Riddance. I’m at another fork in my road and hopefully I’ll find a better path ahead.

Sheer will is not enough

Have I ever really acknowledged that I'm sick? That my ability to move through life is any different than the "average" person. No, not really. I've just barreled through life assuming I could keep going - often out of sheer will. But the fatigue of 26+ years in this battle is taking over, and sheer will is failing me.

For the first time I can recall, I'm going on a business trip and not extending it by at least a day to see the local sights. I'm off to our Reading, UK office, which is about an hour train ride from London. And I didn't book an extra day to wander around, as I'm utterly exhausted from the pain in both my feet and my shoulder, and the thought of expending that kind of energy is too overwhelming for me right now.

This feels like a tipping point for me. Usually I'll just try my best, dope myself up with appropriate medication, and give it a go. This time I gave up before I tried. I'm really tired from trying and trying and trying to have a "normal" life, which I define as a life where I can do everything I want.

My colleague was describing my latest surgery adventure to her husband, and she kept describing me as having lots of hutzpah. I like that word. It says to me that there is a certain amount of spunk and determination.

I feel my determination slipping away, as it is no longer enough. I may have finally realized that I'm not like everyone else, I can't just do everything I want and I am starting to take my disease more substantially into consideration when making plans. And the scary thing - to me - is that I'm no longer angry. I'm just sad. And resigned and seem to have lost my fight a little. I'm overwhelmed by my life right now, and extra energy to put on a good front or push ahead is simply not available.

The first song that came to mind was "Bulletproof" by La Roux. Perhaps next time I can be bulletproof and do whatever the hell I want without accounting for my RA.

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.

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.

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.