Archive for August, 2012
The last couple weeks have been tough. I moved into a new condo and, very ambitiously repainted the whole thing and did all the moving myself. This of course led to long days and nights and completely messed up my schedule.
Not only was I exhausted from the grind of repetitive paint strokes and heavy lifting, when my schedule gets off, a bizarre sort of insomnia sets in. I’m exhausted, but I can’t fall asleep. I’m in bed, but my mind is wide awake and I’m hyper aware of every ache and pain in my body.
Needless to say, my workout schedule got off track. This only led to my sleep schedule going further down the late night rabbit hole, leading to more pain.
So late last week, I decided I had to reset. I forced myself to get up Wednesday morning to run, despite being up until about 2am reading to try to turn my brain off. Than, Thursday, I made myself wake up to lift some weights. I took the weekend off to do a lot of apartment rearranging and resting, and this morning, I’m proud to say I woke up before my alarm feeling well rested.
Hopefully this means my schedule is finally reset and I can go back to less insomnia and less pain.
For those of you out there stuck in a routine that’s not working for you, my advice is simple: break the cycle. I know, I know, WAY easier said than done. But I didn’t say it wasn’t going to suck, or that you had to be graceful. The point is just to bust out of your rut in anyway available to you. Sometimes baby steps only take you so far, sometimes it takes a leap (or, if your feet hurt, one giant, gentle step :).
I wish I had had enough foresight to take before and after photos, but unfortunately I didn’t. After two cortisol shots, my left wrist is almost back to normal!
A bit of history: I hadn’t verbalized it, but pre-diagnosis I noticed that there was something odd about the bone of my left wrist – there seemed to be two little boney wrist bumps where there really should have only been one. I didn’t really spend too much time thinking about it. Just a little, huh, that’s funny. Fast forward to my first rheumatologist visit: my doc – “How long have these rheumatoid nodules been here?” me – “Say what?”
Of course, him pointing them out and giving them a scary name only brought them to the forefront of my mind. As I began treatment, they didn’t seem to be going down. Then, several months ago, they seemed, in my mind anyway, to be getting worse. Where there were once two smallish bumps, there were now three merging into one massive, swollen, misshapen wrist.
Whenever I caught a glance of it, my mind immediately leapt to the gloom and doom thinking of, oh my god, the disease is getting worse, treatment’s not working. Then there was a little voice in my head telling me I was embellishing both the severity of the physical deformity and what it meant to my disease prognosis. Both voices were making me a bit crazy.
Needless to say, I started wearing some big bracelets. Out of sight, out of mind, right?
Well, not exactly. My next rheumatologist appointment rolled around and I asked if he thought my left wrist was getting worse in an off-handed way. He didn’t say yes, but he just said, “I’ll shoot medication directly into it, that should work better.” Right. In my doc speak, that means yes.
Before I knew it, he was spraying cold numbing spray on my wrist and poking two massive needles of cortisol into either side. Truly, it didn’t hurt much. If you ever have to do this, it’s really nothing to be afraid of. It was more psychologically painful than anything (that’s right, I’m still not used to needles). The spray feels a bit uncomfortable and my wrist stayed kind of numb for awhile after.
Other bad news (at least I take it this way), my doc and I decided to raise my dose to eight Methotrexate pills per week (up from six) along with weekly injections of Enbrel. It’s hard not to be discouraged, because when I first saw my doctor, he threw out early fall as the time we may be able to have my RA in remission and take me off some drugs. The new time is March 2013. Just in time for my marathon for those of you who are faithful readers.
I’m trying to replace discouragement and disappointment of my progress with optimism. And hey, if I’m going to be on this crazy toxic drug, I might as well be taking enough for it to be effective.
I guess I was a bit shaken after my appointment (I need to stop going to these things alone), because I got into an accident with a parked car while parking at my apartment. I was trying to not use my left wrist, which wasn’t something my doctor told me to do but between the shots and the numbing spray, it felt weird to use it. My car is hurting worse than the other guy’s. For those of you who think you might be getting this procedure, bring a friend to drive you home.
The good news of all this is that my wrist is back to the size and shape of a normal person! No more big bracelets (unless I wanna wear them – they are pretty). No more constant reminder of my disease! Yippee!
“Once we accept our limits, we go beyond them.” – Albert Einstein
I had the type of weekend that can replenish your spirits and remind you that your disease is, to some extent, limiting only to the degree you allow it to be. I’m not saying that the pain you feel isn’t real or that the physical restrictions aren’t there, they are and I feel for you. I’m saying that the desire to shut down and decide things will be too hard to try is enticing.
It’s easy to think your disease wouldn’t allow you to go to that party or take part in that event – thoughts of fatigue, joint pain and worse circle your mind. This thinking is cyclical in that it makes you feel even more limited, thus making you want to try even less.
So this weekend I threw that thinking to the wind. I climbed a 13,574′ mountain, went camping, then followed it up with climbing a 14,067′ mountain for good measure. It was challenging, I think every muscle in my body is sore today, my wrists and ankles are extra tender, and it felt great.
Living a RAD life is not about being limited. It’s about moving beyond limitations.
It’s about setting BIG goals, and then setting the mini-goals to help get you there.
See that rock halfway to the halfway point? I’m climbing there. See that patch of grass halfway from here? That’s my new goal. Choose a landmark halfway to your big goal, get there, then choose a new halfway point. Then a new one. Then a new one until you are only a step away from that goal.
Living a RAD life is about knowing your body, but also challenging it. It’s about taking care of yourself mentally and physically, while pushing the boundaries further.
It’s about feeling alive. And if you are reading this, you are most definitely alive and have every reason in the world to celebrate.
Cheers to you. It’s your life, RA or not, live it without limits.