Friday, January 23, 2015

The Good, The Bad & The Ugly

I probably should have posted earlier, but I'll play the major surgery card as an explanation for my delay, and try to provide a quick update on how things went.

Recap. I had my third shoulder surgery in four years on my right side on October 16th. The procedure included grafting bone from my hip into my shoulder, securing that with a few screws and replacing my humeral head - again. A picture is worth a 1,000 words, see below. Love the staples in the "after" shot.



The Good. Surgery was a technical success, everything in the operation room went well. It will take another 4-6 months to determine the full extent of how successful the surgery was after I'm through rehab. I'm hopeful and optimistic that I won't be back under the knife anytime soon. I'm also a scarred shoulder surgery veteran, so I'll reserve judgement for a little while.

The Bad. Anyone remember the part where the anesthesiologist rhymes off a list of potential complications from surgery, and assure you the risk of any one of them happening is miniscule? No one remembers that part until they have a complication and - suddenly - it becomes a conversation  where you wish you were paying closer attention While recovering in the hospital, I discovered I had some - at the time - scary nerve damage in my forearm and fingers. I didn't have consistent motor control from the forearm down through my fingers. A very long story and a trip to a neurologist later, all is much better. I have some residual numbness in my right thumb, but a far cry from the scary hospital experience where I couldn't move my arm at all.

The Ugly. I'm not a particularly vain person, and I have my fair share of scars. But this time, there is no hiding from the etching in my shoulder. Three incisions over the same scar line will do that. And my hip scar is much worse. I had a post-op infection on the incision site, and it just didn't close well at all. It's an angry pink mess. I wear my scars likes badges of honour - they are war wounds in my battle with arthritis.

I'm alive. I've got more metal bits and pieces and screws than I did before. The pain was managed fairly well. I was somewhat under-educated on the extensive immobility of the hip portion of the surgery. My surgeon saying "don't worry, you'll walk out of here" was not exactly accurate, based on my wheelchair exit from the hospital.

I listened to hours of music, watched days and days of Netflix and tried to keep my chin up.  I rediscovered Fleetwood Mac recently - and their song "You can go your own way". I keep trying to go my own way, and my RA keeps pulling me back. But at least I'm still trying.

Sunday, October 12, 2014

What's your dream?

So we are just getting back from a week of Disney vacation. It was exhausting and exhilarating at the same time. Lots of walking, lots of laughs, lots of standing and waiting, lots of roller coasters. We had a great vacation. Given my upcoming surgery, we wanted to have some fun before my surgery – as fun will not be easy to find for a while.

I was watching a Mickey and Princess show on the steps of Cinderella’s castle with my seven year old daughter, and it was all about dreams really do come true. It was an uplifting and heartwarming message for all the kids there. So, why was I crying?

Mickey says if you make a wish your dream really can come true. I haven’t found that to be true thus far, granted I've been a bit down lately. I mean, who cries at Disney during a Mickey performance?
It got me to thinking - what would be my wish? Would it be to live pain-free? To “cure” my RA? To ensure that my children never have to go through this awful disease? Would it be to fix my shoulders once and for all? On the final countdown to my surgery, I'm having a hard time finding any silver linings.

I am wrapping myself in a familiar cloak of introspection and an overwhelming urge to be alone.  I've gone to that place where I distance myself from the reality of what's to come as a coping mechanism. It's quite sad, really. I don't have any tears left to cry for this surgery. I'm on auto-pilot as I know - for the most part - how this week and next is going to unfold. I'll be crabby and on edge all this week. Thursday and Friday will be a daze of drugs, pain and lack of sleep. I will be angry, uncooperative, stubborn, tired, scared, potentially immobile and trying to cope through tuning out  the world as much as possible.
I know what’s coming and I am afraid. I’m afraid of the outcome. I’m afraid to hope. I'm afraid the surgery is going to be another failure. I’m afraid of the dependence on others. I’m afraid of being a burden to my family. I’m afraid of the unknown – I’m having a piece of my hip bone removed and grafted into my shoulder. While I may be a veteran of shoulder surgeries - this being my third - harvesting bone from my hip to relocate to my shoulder is new for me. That’s scary and I'm afraid.

While vacation was a brief and welcome suspension from reality – we are on the last leg of our flight headed home, and reality is waiting. I'm sure listening to my favourite band - The National - is not helping. They are not exactly what I would call "uplifting". I generally try to mix up the songs associated with my posts, but their song "Afraid of Everyone" is stuck with me. Here's hoping they have the drugs to sort me out after surgery.

Tuesday, September 16, 2014

It's not ok and I am not fine

So, it seems I will be having another shoulder surgery. I don't know how many times, how many years in a row I can type out the words "this is so unfair" or "I can't believe this is happening". I re-read my posts from last year around this time, and the emotions are sobering and similar, only amplified. It's worse this time around because the last surgery was supposed to fix my shoulder - and so was the one before that, and the one before that. It was supposed to buy me a few years - maybe five or ten - to bridge me through into my forties. And it didn't. And I feel cheated.

I am not fine. It's not ok. It will likely never be ok. This is going to be a ongoing and increasing struggle for the rest of my life. And some days, I just don't want to get out of bed and face it all. I have too many responsibilities to curl up in a ball and cry. But it's really tempting some days.

I am overwhelmed with emotions of grief, anger, betrayal, emptiness coupled with constant pain. Sometimes I take the medication and feel better, sometimes I have a scotch or two, sometimes I just simply cry. This disease take so much from you. With four shoulder surgeries in five years, and four flares this year alone, it's not been a good year.

As I progress closer to my surgery date (30 days and counting), my ability to keep it together is tenuous at best. And when I pause to sit and think about it, past surgeries have provided a similar emotional roller coaster in the final few weeks. Currently, my emotions are loosely packed in by thread with lots of scissors in my life waiting to expose my current - and fragile - emotional state.

I went to a concert by the band "The National" last Friday at Folk Fest here in Ottawa - one of my favourite bands of the past year. I've been listening to their recent album for the better part of a year, but hearing their song "Graceless" live, I attached myself and my current circumstances to the lyrics. I've not been as graceful about this surgery as I would have liked. There is no stiff upper lip, keeping calm and carrying on. I'm pissed. And vocal. And I hate this. It's not ok and I am not fine.

Tuesday, September 9, 2014

Dreading the keyboard

I've not written in over two months. It's not for lack of excitement in my RA life, it's likely due to overexcitement. I just can't seem to bring myself to write down the amount of poking and prodding I've been through this summer - somehow this the final step in accepting that I am having a total shoulder replacement on October 16th. There I said it.

This summer I've had a shoulder biopsy, three bone scans, series of x-rays and blood work all in an effort to rule out an infection in my right shoulder. When the results came back negative, I was relieved, no one wants to deal with the extensive pain and procedure involved in managing an infection in a artificial joint site. At the same time, it was hard to hear. What it really meant, was that all the pain I've been feeling in my shoulder was all mine and could not be explained away by an infection. And it was a tough pill to swallow. If I didn't have further shoulder surgery, this would be my life and my pain forever. And it's unacceptable. Right now, I'm taking from one to five Tylenol 1's per day to manage the pain. That's up to 40 mg of codeine a day to manage the pain. I'm not comfortable with that as a lifelong ongoing pain management tool. It's off to surgery I go.

I'm essentially having a total shoulder replacement this time. This is my third surgery in as many years. They are removing bone from my iliac crest in my hip and grafting that into my glenoid (socket part of the shoulder) and replacing the humeral head hardware from my current smaller implant into a full 10 cm stem that runs down the shaft of the humeral head. Essentially, more bone, more metal, more robust shoulder.

I've struggled sorting through what I think about all of this. On one hand, I feel like I'm watching a movie of someone else's life - like I have many times before on my RA journey. But I'm not that lucky. There is no dream to wake up from. This is it, man. This is my life. And I'm still trying to process. I've taken quite while to publish this post, but I always had a song in mind - Oasis, "Don't Look Back in Anger". I'm looking back. I'm angry.

Saturday, June 28, 2014

Fix you

I suppose I could take all the posts I wrote last summer and fall and simply recycle them. That would save time and thousands of keystrokes.

Like last year, it started with pain in my right shoulder. I was 8 months post-op and pain at this stage is unexpected. My range of motion did not come back at all, and then I started having pain at rest. Washing my hair is painful, and I cannot lift my arm above shoulder height independently. It just won’t go.

Like last year, I went to see my surgeon for a follow-up. Upon seeing my x-rays, he didn't have to explain anything to me. I've seen dozens of my own shoulder films, and I know what I'm looking at.

Like last year, my glenoid (socket) was thinned out again and there was little evidence of any of the bone graft remaining. This is a significant problem, as last October I had surgery to graft bone into my shoulder. And it’s all gone.  All of it. The surgery was a failure – and none of the bone graft took.

Like last year, I fought back tears and tried to formulate coherent questions, but none came. I'm sure I’ll pull myself together and have some intelligent questions for my next consult.

Like last year, we talked about what the next steps are and what the next surgery might look like.

Like last year, I got the surgeon sad eyes. When your orthopaedic surgeon feels bad for you, you know you’re in rough shape.

Like last year, and two years before that and two years before that before my last surgeries, I keep wanting to say “I can’t do this”. But I don’t really have a choice.

Like last year, and the 22 years before that - I hate RA. It has taken so much from me. And every time I face another surgery, biopsy, needle, infusion, pill, ache and pain RA takes something that cannot be replaced. Cue Coldplay "Fix You” Could it be worse? I suppose. But this is pretty bad. 

Sunday, May 4, 2014

That sucks

I'm an English major and writer by education, and I try to follow proper grammar and sentence structure more often than not. My texts come out at least as sentence fragments - if not full sentences - and I always use capitals and punctuation. Generally, I am also picky about language. Words like "crap", "stupid" or "sucks" are not employed in my everyday language. So it's with some amusement that I use one of these words in my the title of my post.

I ran into another hockey mom at the rink a couple of months ago - our boys had been on the same team last year and we stopped to catch up. I was sporting my sling, as I was only a few weeks post-op. As with most people who only know me in passing, she was surprised to hear about my surgery and the inevitable question of "why" entered the conversation.

At this point, in every conversation about my RA, two choices are available to me. First, offer a mild cursory explanation, brushing off concern and moving the conversation along in a different direction as quickly as possible. Or, second, answer fully and truthfully and expose more of myself than I am otherwise comfortable with. In this case I chose to put myself out there. And I'm glad that I did. It was one of the best conversations that I have had with a mostly stranger about my RA.

Her response to hearing about my RA and surgery was, "Well, that sucks." It was the most honest, direct and spot-on responses I have received. Because she got it - having arthritis does suck. Her flat-out acknowledgement was refreshing and showed a level of empathy that I don't often encounter.

I smile every time I recall that conversation. I wish all of my conversations about my RA followed in this vein. It's the immediate validation that I valued - not having to overly explain what my life looks like living with RA.

I went to a number of concerts last summer, and one of the most memorable ones was Macklemore in Montreal. That concert also brings a smile every time I remember.  Here is a link to one of my favourite songs from them, as they perform it on a NYC bus.

I don't like the words "sucks", but sometimes that is the best word to describe this horrible disease.

Wednesday, April 9, 2014

Feels like we only go backwards

This is the theme for my past month. I feel like I'm going backwards, with no chance to get off the ride called RA.

I'm flaring again - not as severe as Christmas time, but enough to self-medicate with some steroids, think twice about how much energy I have for activities, be worried about my sleep and shuffle around like an old woman every morning for 1-3 hours. Yep - textbook flare.

I started my self-medication regime about four days before seeing my rheumatologist. I am not generally comfortable with taking medication not specifically prescribed, but I think the implicit permission is there from your rheumatologist when he ensures at your last visit you have an ample supply of prednisone for your flares (read: 150 tabs with 2 repeats. That's a lot of pills).

At my appointment we had a good discussion around my state of health. Is my biologic failing me? Is my disease more active? Am I stressed? Tired? Worn down? The answers to the last three questions would be a resounding "yes" across the board. I feel it pertinent to mention that I just found out that I have low iron, which would be a fairly strong contributing factor to my recent above average exhaustion.

We decided on a course of methotrexate with some prednisone to get me through the next month while the methotrexate comes on-line. I've been on and off methotrexate over my years with RA. We are not great friends, but it can be an effective drug for me. I don't like being on it - the side effects for me aren't pleasant. Hair loss, mouth sores, fatigue, nausea. Fun stuff. Oh, and it ruins my relationship with scotch.

The frustration for me, is that based on my current state of health, I felt like I was going backwards. This was me 3 years ago, and it was not in line with my vision of running and biking my way through this summer again. I am a runner. I am a biker. I saw these things fading to black in the background based on my third mini- flare since Christmas. The bitter taste of disappointment is hard to swallow.

At some point last week, I reverted to my worse sick self. I'm feeling sorry for myself, and was accepting my lack of health without a fight. If nothing else - I'm a fighter - and I'm trying an alternate course of action before I throw in the towel and take the methotrexate. I'm going to take my artificial prednisone-induced health for spin - literally.

My current plan is to try moderate exercise - biking - for two to three weeks and see how I feel. I have a sneaking suspicion that with some exercise enabled by steroids I may be able to work through this flare and get back on track for the summer I envisioned.

So far, so good. I've had two rides this week and my body hasn't told me in any significant way that I've made a mistake. I feel good. I feel strong. I feel empowered. I can do this.

Tame Impala is a band I've been listening to recently, and they have a fantastic - and very aptly named - song "Feels like we only go backwards". I'm hoping to go backwards to last summer. I was a really good summer and worthy of a repeat.