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.

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.

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.

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. 

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.

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.

As good as it gets?

I've been asked "how did your surgery go" several times in the past few months, and I'm having a hard time answering the question. Technically, it went well. I didn't get an infection, I'm recovering as expected, my range of motion is coming back slowly. It's ok. That's my objective medical/physical assessment of how the surgery went.

I'm still sore and experiencing some pain. Tonight I made the conscious decision to medicate with some scotch, as opposed to Tylenol. Scotch is multi-purpose - simultaneously soothing both the soul and shoulder. It's hard to discern how much of my current pain is directly related to my post-operative state, my fatigue or my (potential) impending flare.

Surgery is so much more than the slicing and dicing of body parts. There is an emotional component to the result that is hard to quantify - and having RA further complicates things as there is emotional and physical baggage dragging behind you at every turn.

I'm having a hard time determining if the surgery was a success. How I assess my surgery's success varies depending on my emotional and physical state that day. In some ways it's too early as I'm only five months post-op and still experiencing some pain. In other ways, I'm petrified that this is my new normal as I'm already five months post-op and that I will have ongoing pain in my shoulder and never return to my expected - but far less than normal - range of motion. What if this is as good as it gets?

I've been listening to Band of Horses "Is there a Ghost". Such a simple, yet powerful song with a crushing crescendo. My shoulder ghosts keep coming back to haunt me - I would have expected them to be put to bed by now.

Just make it go away

Twenty three years of RA, thousands of pills, hundreds of needles, dozens of x-rays,  four surgeries including two joint replacements. At 38, I'm a veteran.

Arthritis is cruel. It takes away things you didn't even know you were missing - until one day, you realize that you've been dealt a pretty shitty hand, and you are just so irreconcilably angry you can't even type straight. Like today. It's been a tough year.  I am carrying a sizeable chip on my shoulder about my most recent shoulder surgery, and I can't seem to shake it.

I feel, in some ways, I'm back to square one - asking "why me" and knowing that it is just so unfair. The stages of grief apply to chronic disease, but the cycle doesn't end. There is no closure - there is no end. The stages wax and wane, moving from denial to anger, flirting with depression and coming to some semblance of acceptance. And then the balance is disturbed by a flare, a bad day, a change in meds or perhaps another shoulder surgery. And right now I'm stuck at angry.  So very pissed off at my disease there is little room for other emotions.

I can't seem to write my blog without coming back to this theme - I am a broken record. 

The ironic part is that I'm feeling relatively good - RA wise.  Shoulder rehab is going well. No more morning stiffness - my flare seems to have passed. But I haven't recovered from last year.

As the years go by, and the RA burns brightly in the background, it's harder and harder to bounce back as quickly to my "usual" self. I'm also noticing that my usual self isn't the same. Life changes you, RA changes you. I'm not as happy-go-lucky as I used to be.

I've brushed off and shrugged off so much pain and so much concern over the years - but the reality is, I just want someone to make it go away.  And that is not going to happen. And I can't imagine the strength it will take to fight this battle for another 23 years. I don't know if I have it in me.

A colleague sent me a re-mix of this song - but the original speaks to me more, and matches my
mood. I feel sometimes like drifting away - seems easier than fighting.

Just not worth it

I went to a hockey tournament this weekend with my son and fifteen eight year old boys and bunch of parents. It was a two day tournament - the team lost in the quarterfinals, but had a great time. For anyone who has been to this kind of event before, there is lots of waiting around for games, time at the hotel and time to kill between games. In other words, lots of social time. I really like the parents on the team - everyone gets along well.

But it takes energy to make polite small talk - energy I just don't have. I don't have the physical or emotional energy to be "up" and "happy" and "social". If I could find a cabin for a week and hide out, I'm pretty sure that I would right about now. I just don't have the extra energy it takes to be socially happy where you are laughing, entertaining and talking. I am still flaring. I am tired. I don't have the capacity for this right now.

For me, this is a significant shift. I am usually quite social and extroverted - my energy comes from interacting with others. Recently, though, I am craving time alone with music, the internet or a book. I really just want to withdraw from everyone. I just want to be alone.

On the second night of our stay, many of the parents let loose and had a reasonable number of beers over an extended evening which ended at 2:00 am. Normally, I would have been right there with them - well at least until midnight. But - for me - the amount of emotional and physical energy that it would take to hang out and talk and be social and the lack of sleep and the resulting flaring pain - it just wasn't worth it. I have limited energy and I don't want to spend it on that.

I've been listening to "Houses" and their song The Beauty Surrounds. Ok, I admit, it's a pretty sad song - but it suits me today.

A scotch and a good cry

Sometimes you need both. And sometimes you need them at the same time - like today. I'm nearing the end of my short-course, high-dose prednisone treatment and I'm scared. I can feel the flare just out there at the edges waiting creep back in and take over. My hands are cramped in the morning, and this is with 10mg of prednisone - I'm afraid to see how they do on their own.  I honestly think the only way I made it through the holidays was on a prednisone-induced and very artificial high. I'm afraid of what next week holds when I am done with the 'roids. 

I know prednisone plays havoc with your emotions. I've experienced 'roid rage with all the highs and lows before. Prednisone and I go way back. When I sat down to write tonight, I thought it would be a good idea to walk down memory lane and take a look at posts from the past year. Not my best idea. Lots of tears and a good couple fingers of scotch later, I'm still upset.

In re-reading my posts, I have a third party detachment from the experiences detailed there. But that's not right - as it's my blog, my life and my experiences. I think that with detachment is how I need view my RA - because if I were to feel all the pain, the fear, the despair, the anger, the sadness, the regret and the full emotion associated with my RA experience, I wouldn't find any of the positives. Please don't ask me to name any positives today, it's not a silver-linings kinda post. My blog acts - at times - as a poignant reminder of everything I've lost and gained. Today there's more loss than gain. I'll bounce back. I always do. Just not today.

I've always been a fairly emotional person and - at times - felt defensive that my actions and life are so ruled by my emotions. According to Google, emotion is defined as "a natural instinctive state of mind deriving from one's circumstances, mood, or relationships with others". I think my emotions are amplified by the steroids today, but the kernel of truth is there - I'm scared. I'm sad. I'm tired. And that's a fairly normal reaction to unknown pain and uncertain health. I don't know how much of my pain and inflammation will be waiting for me next week. And I'm afraid to find out.

I've been listening "Hearts like ours" by The Naked and Famous. It's a song about courage and being brave, That's good - I need all the help I can get.