Tuesday, January 28, 2014

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.

Sunday, January 12, 2014

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.

Wednesday, January 1, 2014

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.