Cough Syrup

So that's my arm around 2:15 pm today. Infusion day!  I maintain that I do some of my best thinking while waiting. Waiting for drugs to come into my system, waiting for doctors to see me, waiting for a red light.


I have come to peace with the idea that I need medication to live and function and will for my entire life. When I was diagnosed, optimism prevailed, and I believed I would go into remission. 21 years later, it seems that hasn't happened.

I'm not a pessimist, but I'm pretty sure the math supports me in my current lack of faith that I will go into remission someday. So I look for ways to learn, understand, communicate and share how this disease has impacted my life.

I have been listening obsessively to a band called Young the Giant and their song "Cough Syrup". I can't get the lyrics out of my head. Here is a small section:

"So I run to the things they said could restore me restore life the way it should be
I'm waiting for this cough syrup to come down.


Life's too short to even care at all.
I'm losing my mind, losing my mind, losing control."

My cough syrup is my arthritis meds. Sure, the meds I take are a little more potent and carry a few more warnings: may cause cancer (Actemra), may cause hair loss (Methotrexate), may completely alter your personality (Prednisone).

This song really speaks to me. I am waiting for the cough syrup to come down, I am waiting for my meds to work.  I have been waiting for this for a long time. I feel like I am losing my mind and losing control at times. I have run to the things "they say" could restore me and restore my life - all the medications that I have taken over the past 21 years as listed in Dinosaur Drugs. And then some more.

I have turned out to be a positive person, despite all that has come my way. Only someone with faith, hope, sheer optimism or a combination of all these things could possibly keep taking meds in the hope that they will feel better - twenty-one years later.

My cough syrup is pictured above. It's rather expensive ($35 CDN per minute) and I am still waiting for it to go down. And work.

Unpretty

Like many, I have good hair days, bad hair days. I also have good RA days and bad RA days. Sometimes the stars align and good RA and hair days happen on the same day. That is a very good day. There are also days where I have horrid, frizzy, unmanageable hair and a baseball-sized left knee. Today, was the latter.

Last night I tossed and turned with my swollen knee for 2 hours (musical joints strike again), and gave up at 1 am - taking a T3 to manage the pain. I slept and woke up feeling sore, but better than when I went to bed.

I thought about my day ahead - the number of meetings, the number of interviews and simply gave up, at 7:00 am. I found some jeans that go with flats, a nice long sleeved shirt, an elastic for my hair and that was that. Not my usual standard for work attire.

I wasn't having a good hair or RA day, and those are tough day. Everything is bleak, there is no joy to be found. Sometimes I can work up enough effort to have a good hair day and that might just be enough to forget the bad RA days. If you look good, you feel good. Sometimes crisp black dress pants, comfortable heels and a sweater can lift my spirits and I feel good about myself and forget my base-ball sized knee and slight limp. This did not happen today.

I had TLC's "Unpretty" running through my head today, it's got a good message and it matched my mood.

A day in the life

As with most people with RA, I struggle to impart how this disease impacts my life both in the day to day and the overall trajectory of my life.

These days, I wake up and hobble to the bathroom. I look very much like a penguin walking, and my hair actually swings back and forth. Nice. I hop in the shower and usually feel better from the hot water. Getting dressed has always been difficult - regardless of my state of health.

Bras and RA don't go together. Ok, I'm putting that out there. I'm hoping to get a few comments of support. Swollen hands, replaced shoulders, throbbing fingers and deformed wrists with a poor range of motion capped off with early morning stiffness. The perfect pain storm. I've actually cried putting on a bra. Not a good way to start the day.  Fortunately, my personal dresser is usually available to assist and I'm dressed, made up with some semblance of presentable hair, a quick dash of cover up and off hobbling and one-stepping it down the stairs to get breakfast and head to work. This is all usually before 7:00 am. Sigh. I'm sad just writing this.

It's winter here in Ottawa, so I pile on the scarf, heavy coat, gloves, boots, grab my laptop, purse, lunch - curse loudly as something slips, and try not to trip on the stairs down to the garage. In the car and I'm off. Oh wait, my shoulders don't work properly this morning, so to compensate, I pull my seat a little further to the steering wheel so I can reach the radio and temperature control buttons in the car.

Work is 20 minutes away, it's a nice drive. I drive by farmer's fields and sing at the top of my lungs to the radio or iTunes. I like to sing. I'm not good, but it makes me happy.

I take the back stairs up to my office. Small mercies, being in HR I have always had an office. It can be used to close the door and collect myself when I'm having a bad day.  I am grateful that I have a "desk job". I am grateful I have a post-secondary education, as I don't know what I would do in an even slightly more physically demanding job.

My job is mentally demanding. Problem solving, interviewing, assisting with employee performance management, drop in questions, a 100 emails a day, and talking, talking, talking. People talk to me all day. And they usually want something. It's good that I am an extrovert. My job would likely have an introvert run screaming from the building.

The bell rings about 9 hours later and I am off to pick up the kids, go home, make dinner, eat as a family, referee fights, help with homework, clean up dinner, bath, bed (for the kids). And I have help with all of this - there is a whole other adult there from dinner onwards. Thank God.

After this marathon, I can collapse. That doesn't mean that I didn't want to earlier. Some nights I literally sit in front of the TV for 2 hours and go to bed. And that is what I can manage. Sometimes work is crazy and I conduct 20 interviews in a week, have 5 meetings a day and no free time. So I respond to emails at night for 1-2-3 hours. And then I go to bed.And hit the repeat button. Life feels out of control right now. I can't find the stop button.

Sometimes I just cry because at the end of the day, I can't do anything. I can't move. I can't type. There are nights I go to bed and my hands look like claws all curled up, all I can do is shuffle and take some meds. And hope for a better day tomorrow. Not every day is like this, but this is the best I can describe what parts of many of my days look like. This is normal for me.

For those with RA, they will read this and smile in sad agreement. Others will read this with a horrified expression on their face. Yes, there really are people living in your neighbourhood, who go to your church, who play with your kids, who work with you every day, people who you know, that have days like this. 

For an introspective post, I have an introspective song, by Green Day, Time of Your Life. For me, it's about making the best of what you have. And that is what I do.