Tuesday, March 19, 2013

Just like everyone else

I plan all kinds of things in my life - dinner parties, kids parties, meal plan for the week, summer vacation and what my work projects might be for the next six months - but planning to run a 5K race in September - 6 months away? Um, no. That has not been part of my planning repertoire. Or the 5K race I signed up for here in Ottawa in May - that I signed up for last October.

Right around now, 22 years ago, my shoulders started hurting with pain and stiffness, and it was hard to get warmed up for volleyball practice in the morning. And then volleyball season finished and my feet hurt, then my knees and things went downhill from there resulting in an RA diagnosis in July.

But for the last 21 years, I haven't really planned much of anything in terms of physical activity, it was more planning to avoid, as opposed to planning to do. I planned where I could take rest breaks, how much walking I would have to do, how tired I would be, when I could nap,  how I can manage juggling work, kids and a house.

I've spent the past 21 years in pain, inflammation, doctor's offices, blood clinics, with joint injections, with med students, with nurses, in the hospital, in the clinic, at X-rays, with crap shoulders, bad wrists, tender feet, swollen knees and pumped full of drugs that may or may not cause cancer have caused hair loss, weight gain, headaches and irritability. And I managed to work myself through every test, procedure, needle, surgery, consult, and every bit of poking and prodding.

As I read this it does sound quite depressing. I'm not one for sympathy. Everyone has challenges, I know what mine are and I can manage them. But, yes, parts of my life have been pretty lousy, and the majority of it has been perfectly wonderful. But it was mine to live through and manage, and I did and I have and will continue to.

Even a year ago, I would have laughed at the idea of running 5K or taking less medication. It seemed impossible. I was barely able to get through an average day, let alone adding in anything that might drain my limited energy further. I've been on my wonder infusion drug (Actemra) for just over a year, and I can say without hesitation or overstatement that it has changed my life. I feel normal again. I feel just like everyone else. And if you've never lived with a chronic illness, you cannot understand how preciously wonderful it is to be average. Normal. Boring. Pain-free.

But now that I'm healthy, I'm having a hard time coming to grips with it.  Let's be clear - my version of healthy is different from most other people's. I still go for monthly infusions of designer drugs to the tune of $2,200 per month. I see a surgeon once a year, and a rheumatologist 3-4 times a year. I have routine x-rays and bloodwork. I take some anti-inflammatory medication, but other than that I am healthy. That's next to nothing for the average RA patient.

Being stable is the ultimate goal of anyone with a chronic illness - so why am I struggling with this? I'm so used to being sick, I don't know how to be healthy. I don't know that I can plan. I also am afraid to plan, as I'm always looking over my shoulder. I mean, how long can I be healthy for? I know someday the medication will stop working - but when? 6 months, 3 years, 6 years? I'm afraid to to get used to the idea of planning, being able to plan. I'm afraid that as soon as I become comfortable with the idea of planning, all my good health fortune will vanish and I'll be back to where I was. Which wasn't so bad, but now that I know better health exists for me, I don't want to return to pain, inflammation and the pills.I think this is my way of self-preservation. I can't lose what I don't invest.

This has been an emotional knot that I've been working on for a while. Today brought a visit to my rheumatologists office, and the usual introspective and melancholy thoughts of RA. And I couldn't get over the contrast - I'm feeling fantastic physically, but conflicted about that emotionally. Best song for today is some U2,  Stuck in a Moment. The last line stayed with me "It's just a moment. This too shall pass." I'm feeling less stuck already.

Saturday, March 9, 2013


Some choices, you know the immediate consequences. Some take a few days, weeks, months or lifetimes to find out if you made the right choice. But therein lies my post. You sometimes do not know what the right choice is, and you'll never find out. You make the best decision that you can at the time - rely on your knowledge, information available and instincts.

When I think of long-lasting, irreparable, big-consequence choices - I think about the choices I make for my health and care of my RA. Today I had a terrific headache. All my usual plans of attack didn't work, and I know it is a side effect I experience from my fancy infusion drug, Actemra. As with most drugs for RA in the "biologic" class, there is long and scary list of potential side effects, including increased risks of some cancers. The side-effects I can pin point for me are headaches, hair loss and of course not healing as well from bumps and bruises.

There are differing viewpoints on natural vs. pharmaceutical treatments, long term drug effects vs. quality of life. I find myself frustrated at times when friends, co-workers or strangers comment proudly on the fact that they "don't like to take pills". I find myself biting my tongue, as I don't have that luxury in my life. If I didn't take pills or medication, there is a decent chance I would be curled in a ball of pain in my parent's basement for the past 20 years. I've chosen to take the drugs, live with the consequences - whatever they may be,  and life my life to the fullest. I am concerned with how all these medications over all these years will impact my body. But I balance that out with making the best decision I can at any given time.

One of my favourite songs from last summer was The Fighter by Gym Class Heroes. I ran miles and miles to that song, as I was training for my 5K race. I will continue to make choices and fight for my health. It's been 9 months that I've felt "normal". I feel like most other people do. It's amazing. And I won't be letting that go anytime soon - so I choose to take the drugs and keep running and fighting.