I dug up my old journals a couple of days ago. These are my diaries from when I was a pre-teen, teenager and in my early twenties. I was a fairly prolific writer. I wrote poems, articles and editorials for both my high school yearbook and my university newspaper. I also kept a spotty journal detailing my life before and after my diagnosis.
When I re-read my journal entries over the past couple of days, I cried. I just sobbed. I was so heartbroken with what I read and how I felt back then. I was an active teenager who was a little boy-crazy. And then I hit this wall called RA - and things changed. I have an honest account of my past pain, loss and realization that things have changed for good, and not for the better. Here are some selected, direct quotes from my journals. It shocks and pains me that I had such clarity and articulation on how I felt when I was 16 and 17, and how these thoughts continue to resonate:
"I want to go back to normal. Like the way I was six months ago." June 1991
"this arthritis thing is a massive emotional roller coaster" July 1991
"I feel cheated by my arthritis. Cheated out of a life I felt comfortable with." August 1991
"I have Polyarticular Rheumatoid Arthritis. There is no cure." August 1991
"I want to be a normal person without pain. I want to play basketball" September 1991
"I think I am having a relapse... It really bugs me that this is happening. I want a life not a medical problem. Why me?" April 1992
"Uh-ooo, I've had a relapse, a flare something bad. I can't even play soccer." April 1992
"I feel like my body turned against me. My friends don't understand that I can't do the things I used to be able to do. It really upsets me." April 1992
Sarah McLachlan came to mind - "I will remember you". Bitter sweet song and seems appropriate for this post.
Sunday, March 11, 2012
Wednesday, February 29, 2012
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.
Wednesday, February 22, 2012
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.
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.
Saturday, February 11, 2012
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.
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.
Friday, January 13, 2012
RA vs BBQ
It's a bit of a mystery, where and when my next swollen joint will appear. My knee? Left or right hand? Elbow? Wrist? Which one? The suspense is killing me. No, check that, it's the pain that is killing me, not the suspense.
Lately, I have had "classic" red, swollen joints which appear late in the day and sometimes disappear when I wake up. Sometimes not. In the past week, I've experienced, my left wrist, my 3rd and 4th MCP on both hands, my left knee and the list goes on. You just never know where RA is going to be when the music stops.
I know RA is characterized by swollen, red joints and I do have those, but mine are typically more of a slow burn, where there is enough inflammation and pain to make itself known, but not enough to cause a full-blown flare. I've had this for 20+ years.
I've always had a hard time at my Rheumatologist's office when they ask how I am feeling. I think so much of this answer is tied up to your personality and disposition. I tend to be happier and err on the side of positive, so I am usually "OK" which actually tells my health care team zilch. But usually it's true.
I read fellow bloggers posts about an onset of a flare, or being in a flare. I've never really termed my RA in that manner. I have moderately active joints, that flare up one at a time every now and then. I could say I've been flaring for 20+ years, at a slow and steady rate - like good BBQ. I have some flare ups, but for the most part, my damage and pain comes from years of low-grade inflammation.
Wow, did I just compare RA and BBQ? Hmm, well its one of the better analogies that I've used to illustrate a patient's perspective. And it's -24 C with the windchill with 10 cm of snow falling today here in Ottawa, so Summer sounds good right about now.
Along these crazy lines - BBQ, summer, music. Well, one can only refer to the Canadian Icon Brian Adam and the Summer of 69. One of the best Canadian rock songs ever. You can't help but smile and rock right along.
Lately, I have had "classic" red, swollen joints which appear late in the day and sometimes disappear when I wake up. Sometimes not. In the past week, I've experienced, my left wrist, my 3rd and 4th MCP on both hands, my left knee and the list goes on. You just never know where RA is going to be when the music stops.
I know RA is characterized by swollen, red joints and I do have those, but mine are typically more of a slow burn, where there is enough inflammation and pain to make itself known, but not enough to cause a full-blown flare. I've had this for 20+ years.
I've always had a hard time at my Rheumatologist's office when they ask how I am feeling. I think so much of this answer is tied up to your personality and disposition. I tend to be happier and err on the side of positive, so I am usually "OK" which actually tells my health care team zilch. But usually it's true.
I read fellow bloggers posts about an onset of a flare, or being in a flare. I've never really termed my RA in that manner. I have moderately active joints, that flare up one at a time every now and then. I could say I've been flaring for 20+ years, at a slow and steady rate - like good BBQ. I have some flare ups, but for the most part, my damage and pain comes from years of low-grade inflammation.
Wow, did I just compare RA and BBQ? Hmm, well its one of the better analogies that I've used to illustrate a patient's perspective. And it's -24 C with the windchill with 10 cm of snow falling today here in Ottawa, so Summer sounds good right about now.
Along these crazy lines - BBQ, summer, music. Well, one can only refer to the Canadian Icon Brian Adam and the Summer of 69. One of the best Canadian rock songs ever. You can't help but smile and rock right along.
Friday, December 23, 2011
Victory Lap
It's been a super year and I'd like to take a victory lap. I've conquered lots of obstacles, and I'd like to share.
On the arthritis side - I am off prednisone. For those who have been reading for a while, feel free to celebrate right along with me. That sentence is enough of an accomplishment that I could stop right there. But wait, there's more! I have had some shoulder surgery (humeral head replacement) to get some pain relief. It was a bit of process to get there, and I am now feeling just great. I am on Actemra and that is all. My drug list is down significantly, I'd say!
One of the harder things for me to write this year was a profile for RA Guy's "Real Profiles of RA". It's an insightful section to his amazing web site, where folks like me with RA from around the globe submit pictures and write about their RA experience. It was hard to answer "How has living with RA helped to improve your life?" Umm, it hasn't. And I left my draft at that for about 4 weeks, but it was peculating the background.. It's easy to see what it has taken away from me. It's harder to see the positives. I eventually found my answer, but it was instinctive for me to get there.
I am married to a hockey fan, and John was telling me about 24/7 - HBO is following two hockey teams behind the scenes leading up to the outdoor Winter Classic hockey game. Ok, all this to say the Philadelphia Flyers listen to "Knock Knock" by Mac Miller when they win. I've had a super year, so this is my victory song! Wishing everyone a wonderful Christmas and a health-filled New Year.
On the arthritis side - I am off prednisone. For those who have been reading for a while, feel free to celebrate right along with me. That sentence is enough of an accomplishment that I could stop right there. But wait, there's more! I have had some shoulder surgery (humeral head replacement) to get some pain relief. It was a bit of process to get there, and I am now feeling just great. I am on Actemra and that is all. My drug list is down significantly, I'd say!
One of the harder things for me to write this year was a profile for RA Guy's "Real Profiles of RA". It's an insightful section to his amazing web site, where folks like me with RA from around the globe submit pictures and write about their RA experience. It was hard to answer "How has living with RA helped to improve your life?" Umm, it hasn't. And I left my draft at that for about 4 weeks, but it was peculating the background.. It's easy to see what it has taken away from me. It's harder to see the positives. I eventually found my answer, but it was instinctive for me to get there.
I am married to a hockey fan, and John was telling me about 24/7 - HBO is following two hockey teams behind the scenes leading up to the outdoor Winter Classic hockey game. Ok, all this to say the Philadelphia Flyers listen to "Knock Knock" by Mac Miller when they win. I've had a super year, so this is my victory song! Wishing everyone a wonderful Christmas and a health-filled New Year.
Thursday, December 15, 2011
Oh, the irony
You have to have a sense of humour when you have a chronic disease. You have to be able to laugh at yourself a little. And you have to have someone in your life that can lift the mood.
It's too bad it's 3 in the morning, and my husband is sleeping, because I could use a laugh right now. I am recovering from shoulder surgery on my right side, I am relying heavily on my left arm. Wouldn't it be funny if my left wrist puffed up like a balloon, and didn't work properly? That would be just freakin' hilarious. John would have a witty, sarcastic one-liner that would make me smile, and then he would help me get dressed and do my hair. He is a very patient man, as I have long curly hair and strong sense of independence. It doesn't usually go well for either of us.
To add fuel to this fire of inflammation, that is happening right now, a mere 10 sleeps before Christmas. Don't get me wrong, having shoulder surgery November 1st provides significantly fewer expectations on Christmas, but there are some minimum standards I am hoping to meet. Like presents for everyone on the list.
Just when I was getting my sea legs under me and starting to drive myself around, it seems my body has other ideas for me, as usual. But the irony is not lost on me. If you only have one arm, then let's have a flare in a pivotal joint, just for fun. The other irony is the first thing I think to do while not able to sleep due to the pain and discomfort, is write a blog entry thus using the wrist that is screaming in pain. Oh, the irony.
There is a very fitting song to go with this post, from a fellow Canadian - Alanis Morissette's "Ironic". Yep, this is pretty ironic.
It's too bad it's 3 in the morning, and my husband is sleeping, because I could use a laugh right now. I am recovering from shoulder surgery on my right side, I am relying heavily on my left arm. Wouldn't it be funny if my left wrist puffed up like a balloon, and didn't work properly? That would be just freakin' hilarious. John would have a witty, sarcastic one-liner that would make me smile, and then he would help me get dressed and do my hair. He is a very patient man, as I have long curly hair and strong sense of independence. It doesn't usually go well for either of us.
To add fuel to this fire of inflammation, that is happening right now, a mere 10 sleeps before Christmas. Don't get me wrong, having shoulder surgery November 1st provides significantly fewer expectations on Christmas, but there are some minimum standards I am hoping to meet. Like presents for everyone on the list.
Just when I was getting my sea legs under me and starting to drive myself around, it seems my body has other ideas for me, as usual. But the irony is not lost on me. If you only have one arm, then let's have a flare in a pivotal joint, just for fun. The other irony is the first thing I think to do while not able to sleep due to the pain and discomfort, is write a blog entry thus using the wrist that is screaming in pain. Oh, the irony.
There is a very fitting song to go with this post, from a fellow Canadian - Alanis Morissette's "Ironic". Yep, this is pretty ironic.
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