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.

Tuesday, March 18, 2014

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.

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.

Sunday, December 22, 2013

Hopped up on 'roids

I've spent the past eighteen months in reasonably good health. Well, outside of recovering from my second shoulder surgery and then going under the knife again for my third surgery. Reasonable health is a relative term. I found a biologic that worked extremely well for me and I started to run and bike - a couple of things I never thought I would do. I felt more "normal" than I had in decades - literally.

But now, in my post-operative state, I am flaring. And it's been quite some time since I have felt this poorly. I'm having four to five hours of morning stiffness and hands that aren't working properly. And right now, it's hard to avoid the fact that I have a chronic disease that causes me pain and disability. I can't do what I want to do, and it's been a while since I've had limitations.

In the past week, several co-workers asked about me with concern - they wanted to know if I was feeling OK. I - of course - lied and told them everything was fine. Not everyone wants or gets to know the truth. When I asked a friend about it later, and about the difference they see - he said it was the sadness in my eyes. Good observation. For anyone who knows me, that would be a  substantial change from my usual self.

And I know that sadness comes from pain and fear. The pain I'm actually experiencing takes a toll. It requires an untold amount of energy to lie and pretend at work that everything is wonderful - because it's just not. It is mentally and physically exhausting to be in pain. The fear, is that this is not a short-lived flare, but could be the tip of the iceberg of new drugs and more pain and more inflammation.

Due to my shoulder surgery, I skipped two doses of my fancy biologic drugs as they offer a higher risk of infection which is a bad combination with surgery. Since my surgery I have had two doses, but seem to be flaring nonetheless. I'm hoping this is a temporary set back due to my missed doses, but the downward spiral of "what if? keeps playing out in my mind.

I'm back on prednisone - the drug everyone loves to hate. Short term therapy and a medium dose to kick the flare away - hopefully - and return me to my rightful state. The first day I took 30 mg, kicking off my day with 15 mg. It's been a while since I've been on that high of a dose that I forgot the glory of a prednisone "high". On Tuesday, I felt like a rock star - I really did. I was only half joking when I told people that I was jacked up on 'roids - I felt unstoppable.

I'm a veteran of this whole chronic disease thing. I've had RA for twenty-two and a half years. I know I have been spoiled in the past year and half with excellent health. I haven't really had to behave or think too much about day to day life with RA. And it's hard to go back to that.

I'm still on a Chvrches kick, it seems. Song of the day is "Under the Tide". I'm trying to keep my head up and hold on.

Monday, September 30, 2013

A veneer of Bravery

Surgery is tomorrow. One sleep. In 48 hours it will all be done - and I am utterly terrified. I know enough of what is coming to know that it's reasonable to feel this way. I've talked about my surgery to friends, co-workers and family in an abstract third party manner. Everyone seems impressed with my positive attitude and nonchalant manner with which I am handling all of this. It's a good show.

I'm petrified of what I don't know is coming and almost more afraid of what I do know is coming. I don't know what kind of pain control I will have for surgery. My last experience was not positive - to say the least - as I woke up screaming in pain in recovery. I'm hoping for better this time. It can only be better.

I do know that I am giving up control on many parts of my life. And that might be the hardest part. I'm not afraid of pain, I'm afraid of losing my independence. I'm a horrible patient - I am not good at asking for or accepting help. I've worked so very hard to be able to do things myself. And in 36 hours I won't even be able to get dressed by myself.

I've done well this time to keep myself busy enough over the weekend to not have a spare second to reflect on the upcoming week. But as the weekend winds down, and my body screams with pain in response to my over-doing-it this weekend, I am forced to sit and think. It's almost a good reminder as to why I'm going through the surgery - my shoulder is so very sore right now. It's a not-so-subtle reminder that my shoulder is not going to get better automagically, and that this is surgery I need and will appreciate 4-6months from now.

My 6 year old daughter brought me her most prized possession in the world to snuggle with - pink blankie. There is no precedent for this act of love. Chelsea does not give up her blanket. Ever.
For anyone. I guess this further demonstrates the magnitude of my surgery and how it not only
impacts me, but many other people in my life.

I'm on a new music kick, and have discovered Chvrches and their song "Recover". It's about decisions and being at a cross-roads. That's me. At the cross-roads of pain and surgery. I'm really hoping the surgery path works out for me this time.