I went to see my fun, friendly, professional rheumatologist today. Great guy. Wears fun, rainbow socks and seems to believe I may actually know something about my health. Crazy idea - that the patient actually knows how they are feeling and might not need a doctor to tell them.
After I got back to work - I was feeling introspective and a little down. I was writing an email (rant) to a colleague about my day and the state of affairs in general when it hit me like a 2X4. I finally figured out why my quarterly visits to the rheumatologist threw me off my game.
I saw my future in the waiting room. All those slow-walking, hunched over, grey haired ladies are a glimpse into my future.That's me in 20, 30, 40 years. That's me!! Sitting right over there fussing about how late the doctor is. That's me over there, with a cane, orthopedic shoes and a shuffle when I walk.That's my body worn down from years of pain and inflammation hunched over in the corner.
My monthly infusion appointments where I have $2,200 of drugs injected into me do not bother me, nor do my follow-up visits to the aptly named Module "O" (for the Orthopedic clinic) at the Ottawa Hospital. The people I see there have old hips and knees, or maybe a sports injury to explain away the younger crowd that sit and wait. They are not 37 year olds with miles in on a pair of shoulder replacements that have absolutely nothing to do with any sport whatsoever. They are faces in the crowd who I can rationalize away in my mind. They do not have arthritis and have nothing to do with me.
At the Arthritis Clinic, there is no escaping. Nowhere to run, nowhere to hide. Just a giant mirror forcing me to face my future, just when my present is getting under control.
I know there are better drugs now, better surgeries and the future is brighter than when I was diagnosed 21 years ago. I may not end up like those sweet little old ladies shuffling around the waiting room. On the other hand, I just might. And that scares me to death.
For a depressing day, I am serving up some melancholy music. Sarah McLachlan singing "I will remember you". Here's to good drugs and hoping that it's a very, very long time before I become one of those little old ladies in the waiting room.
Tuesday, November 20, 2012
Monday, October 8, 2012
Control
Control. I finally found a word that describes how I feel. I am in control of my body. This is new to me, having been in a state of full-semi flare for most of my 21 years with RA.
Running offers control. My legs can move, because I tell them to. Running is freedom. I am just like everyone else when I run. I am not a person with a chronic disease, two robotic shoulders and a sketchy knee. I am facing the same internal battles about pace, distance, pushing myself. The only thing standing between me and my goals is me. On Sunday, September 23rd, I met one of my goals. I ran a 5K race, and finished in under 45 minutes. The race was very emotional for me. I was exercising demons while I was exercising my body. I could do this. I am doing this. I took two very brief walking breaks (45 seconds each), but ran the rest of the race. I sprinted at the end of the race, with cheers from the crowd spurring me on. I did it. I am a runner.
The photo above is one of my favourite places. It is the start of the path near my house and the beginning of a 5K running route for me. When I discovered this path earlier this year, I felt like I was home, was the best way to describe it. I was biking with my family, and the closeness of the trees, and the promise of adventure took me in - and I've felt that way every time I've been running or biking down this path ever since.
I am counting my blessings and my TNF-blockers. I know it is due to some fairly fancy drugs that I am able to run, bike and live without too many thoughts to how my joints are feeling. It was just over a year ago that I wrote a post called "I Hate Stairs", where a short walk in the woods brought me to tears of pain and dispair. I am in awe of what a year can bring - a new shoulder, a drug that finally works for me and a budding career as a runner.
During my 5K run, I listened to one song on repeat. I usually do this when I run. I like the constant beat in the background, and I've been known to play DJ too much and focus on running less when there is a mix of songs playing. For my 5K, I selected Katy Perry's "Part of me" - good beat, and applicable lyrics for me. "Look at me - I'm sparkling". I think that fairly accurately describes me right now.
Friday, September 21, 2012
Hasn't hit me yet...
For the past couple of months, I've had a different struggle. I am
feeling great. I am feeling so fantastic, that I have been training to
run a 5K on Sunday (the Army Run here in Ottawa). Yes, you are at the right URL and reading the correct blog. Do not change the channel.
As it turns out, I can run, bike and strength train and not incur joint pain. I've taken the slow road on running, starting with walking and run intervals. And then I ran a little more, and walked a little less. I slowly and steadily over the course of 3.5 months worked my way up to running 5K (3 miles for my American friends). And it's not as scary as you might think.
Before I was diagnosed, I was an athlete. Basketball, volleyball and soccer - all played on the High School teams, in addition to playing recreational and city rep level basketball. All that stopped when I was diagnosed. And if I sit back in my armchair, I see now that it was tough finding a new identity without all the sports in amongst all the challenges of navigating high school politics.
What I see now, is me struggling to admit and talk about how great I feel. I have an irrational fear that if I talk about it, somehow the pain-free joints will disappear. I am waiting for the other shoe to fall, as it were. This joyride has to come to an end at some point - right? I'm finding it hard to be happy for myself. I keep thinking that every little ache and pain is the start of a flare.
My struggle has been with how much exercise can I do, for how long, and is that twinge in my knee the start of a flare, or is that normal for normal people? I've not have a "normal" relationship with my joints for well over 21 years, and I'm just feeling things out to see what I can actually do and not feel pain.
I have not felt this good my entire adult life and it scares the daylights out of me.
For those who are interested in what finally worked for me - Actemra (Tocilizumab). And that is all that I am on. The occasional anti-inflammatory, but no other regular meds. I've been there, done that in terms of a laundry list of RA meds I've been on, and I've finally found the one that works for me.
Blue Rodeo has a song with the same title of my post. Maybe it will take my first 5K for it to finally hit me.
As it turns out, I can run, bike and strength train and not incur joint pain. I've taken the slow road on running, starting with walking and run intervals. And then I ran a little more, and walked a little less. I slowly and steadily over the course of 3.5 months worked my way up to running 5K (3 miles for my American friends). And it's not as scary as you might think.
Before I was diagnosed, I was an athlete. Basketball, volleyball and soccer - all played on the High School teams, in addition to playing recreational and city rep level basketball. All that stopped when I was diagnosed. And if I sit back in my armchair, I see now that it was tough finding a new identity without all the sports in amongst all the challenges of navigating high school politics.
What I see now, is me struggling to admit and talk about how great I feel. I have an irrational fear that if I talk about it, somehow the pain-free joints will disappear. I am waiting for the other shoe to fall, as it were. This joyride has to come to an end at some point - right? I'm finding it hard to be happy for myself. I keep thinking that every little ache and pain is the start of a flare.
My struggle has been with how much exercise can I do, for how long, and is that twinge in my knee the start of a flare, or is that normal for normal people? I've not have a "normal" relationship with my joints for well over 21 years, and I'm just feeling things out to see what I can actually do and not feel pain.
I have not felt this good my entire adult life and it scares the daylights out of me.
For those who are interested in what finally worked for me - Actemra (Tocilizumab). And that is all that I am on. The occasional anti-inflammatory, but no other regular meds. I've been there, done that in terms of a laundry list of RA meds I've been on, and I've finally found the one that works for me.
Blue Rodeo has a song with the same title of my post. Maybe it will take my first 5K for it to finally hit me.
Tuesday, September 18, 2012
Not as scary as you might think...
I may have left some of you hanging last month and the month before that and the one before that... I posted about this big Blog Out Loud Event, and then I disappeared. Sorry about that.
I survived reading my blog out loud. My summary of the experience would be that it wasn't as scary as I thought it would be (hence the title of this post). I spoke clearly, slowly and only teared up once. There was thunderous applause and a few tears wiped away. It was an emotional post for me, even to read it 9 months later.
For the longest time, my blog has been mostly private. You will not find a "like" or reference on my Facebook page about it. I've found in the past year, since shoulder replacement #2, I have been more open about my illness and sharing of my experience - hence the Blog Out Loud event.
This whole sharing with people about my medical life has been a wonderful experience, for the most part. Most people are interested, concerned and curious. They aren't judging me for everything I'm not doing, they are in awe of what I can do with the cards that have been dealt to me. Again, not as scary as you think, spilling your sordid medical history to folks who thought they knew you, only to find out you beep in airports and are partially bionic - cue the music.
Sometimes I struggle with finding a song that works with the theme of my posts, but today, it was a gimme. The Tragically Hip are the ultimate Canadian Band, and one of my favourite songs is "Courage". While I don't use this word to describe myself, I understand that others do.
I survived reading my blog out loud. My summary of the experience would be that it wasn't as scary as I thought it would be (hence the title of this post). I spoke clearly, slowly and only teared up once. There was thunderous applause and a few tears wiped away. It was an emotional post for me, even to read it 9 months later.
For the longest time, my blog has been mostly private. You will not find a "like" or reference on my Facebook page about it. I've found in the past year, since shoulder replacement #2, I have been more open about my illness and sharing of my experience - hence the Blog Out Loud event.
This whole sharing with people about my medical life has been a wonderful experience, for the most part. Most people are interested, concerned and curious. They aren't judging me for everything I'm not doing, they are in awe of what I can do with the cards that have been dealt to me. Again, not as scary as you think, spilling your sordid medical history to folks who thought they knew you, only to find out you beep in airports and are partially bionic - cue the music.
Sometimes I struggle with finding a song that works with the theme of my posts, but today, it was a gimme. The Tragically Hip are the ultimate Canadian Band, and one of my favourite songs is "Courage". While I don't use this word to describe myself, I understand that others do.
Saturday, June 9, 2012
Outside Looking In
I spend parts of my working day talking to strangers, making them comfortable in an interview, assessing their skills and ultimately deciding if they are a good fit for our company. We hire based on skill and fit, so HR has an important role in shaping the culture and the people that work here. I see people in their interview state. Some nervous, some excited, some prepared, many not. Some defensive about their choices and others proud of their accomplishments. I question, observe and listen.
I often wonder how people see me. The "work" me, the "friend" me, the "mom" me, the "blog" me. Each little piece contributes to my personality, and not all of my bits of personality are seen by the same person.
When I submitted my blog for the Ottawa Blog Out Loud event, the reviewers and organizer just read my blog without having met me. They only knew the "blog" me. To help promote the event and the readers, Lynn (the organizer) writes a small summary of the writer and what they blog about. Here is what she had to say about me:
Song for the day - "Walk On" by U2. This song talks about the challenges that you may face in your life, but you need to just "Walk On" - and that is how I see myself.
I often wonder how people see me. The "work" me, the "friend" me, the "mom" me, the "blog" me. Each little piece contributes to my personality, and not all of my bits of personality are seen by the same person.
When I submitted my blog for the Ottawa Blog Out Loud event, the reviewers and organizer just read my blog without having met me. They only knew the "blog" me. To help promote the event and the readers, Lynn (the organizer) writes a small summary of the writer and what they blog about. Here is what she had to say about me:
Megan’s blog, Sticks and Stones, is her place to pour out her heart, soul, and body – a place for her to share what it really means to live with rheumatoid arthritis. She’s a mother to two young kids, with a loving husband and a good job. But although there is much that is good about her life, there’s one thing that never goes away – RA.This, I think, is a fairly accurate representation of the "blog" me. I am tough. I do write what I am feeling and I have been through some tough spots. I've come to accept my life as it is - RA and all. And this realization has been painful and honest, and documented mostly through this blog.
It’s almost impossible for us to imagine living a life where pain is a constant, daily injections are a fact of life, and joint replacement surgeries happen to 37-year-old women. However, Megan’s powerful, moving posts draw us into her world, helping us see exactly what a life like that is like. Her confessional style of writing helps us really understand that this isn’t a disease for the weak – and Megan certainly isn’t weak.
Music is a key part of Megan’s life and she often has a song to reference as a framework for her posts. Come hear Megan’s own music, and see her strength, at Blog Out Loud.
Song for the day - "Walk On" by U2. This song talks about the challenges that you may face in your life, but you need to just "Walk On" - and that is how I see myself.
Sunday, June 3, 2012
I feel good, what's goin' on here?
Some folks with RA, namely yours truly, struggle sometimes to get through an average day. There is more time in a day than energy in my body and that sometimes poses a problem at 6:00 pm when I have no energy left and the day is not done yet. This poses a problem to which I have come up with many creative solutions over the years. Generally it involved TV and take-out. But those days may be over. Read on!
Feat #1 - I Survived Disney
You may understand my trepidation when we set off on a "vacation" to the Orlando area for a 5 park days, 4 water park days and 1 Legoland day. The amount of sun, walking and fatigue involved in this kind of "vacation" can be overwhelming for someone with RA. 12 days in Florida in May, with 10 days of wandering around parks, going on rides and sweltering in the heat. As it turns out, I felt great. No aches, no pain, no swelling, just good times on the roller coasters, teacups and "It's a Small World". It was only with achieving the next two feats do I have some insight as to why I feel so fantastic. Read on!
Feat #2 - I Can Ride a Bike
I haven't owned a bike for all of my adult life. Mainly because I find the seats uncomfortable. But it seems technology has caught up, and there are more comfy seats. Check. My kids are now riding their bikes independently, and so this is the year we can all go for longer family bike rides. The other day, my son and I biked 5.6 K through woods and trails and I felt great. I can ride a bike and like it and not flare! Amazing! Why you ask, is this feat possible? Read on!
Feat #3 - I Enjoyed a Zumba Class
Zumba is an aerobics dance class set to dance music where you jump, skip and shake it for an hour. It is exhausting. I love/hate my instructor. She's not even breathing hard at the end. I was, after 12 minutes. But I made it to the end. As my brother once said, "it wasn't pretty, but it did it". That summarizes my efforts fairly succinctly. But I did it. How you ask? Read on!
How are these amazing feats possible? Drugs is the short answer. I think I may have found a biologic that agrees with me. I'm on monthly infusions of Actemra, and I feel fantastic. Really, really super. This is not something I usually write in this blog. If I can't rail against the meds not working, what will I write about? Perhaps all the things I can do with my new-found non-flaring body.
It's nice to write a happy post. Laugh if you must, but it requires a happy song. And who doesn't smile when LMFAO comes on with "Party Rock"?
Feat #1 - I Survived Disney
You may understand my trepidation when we set off on a "vacation" to the Orlando area for a 5 park days, 4 water park days and 1 Legoland day. The amount of sun, walking and fatigue involved in this kind of "vacation" can be overwhelming for someone with RA. 12 days in Florida in May, with 10 days of wandering around parks, going on rides and sweltering in the heat. As it turns out, I felt great. No aches, no pain, no swelling, just good times on the roller coasters, teacups and "It's a Small World". It was only with achieving the next two feats do I have some insight as to why I feel so fantastic. Read on!
Feat #2 - I Can Ride a Bike
I haven't owned a bike for all of my adult life. Mainly because I find the seats uncomfortable. But it seems technology has caught up, and there are more comfy seats. Check. My kids are now riding their bikes independently, and so this is the year we can all go for longer family bike rides. The other day, my son and I biked 5.6 K through woods and trails and I felt great. I can ride a bike and like it and not flare! Amazing! Why you ask, is this feat possible? Read on!
Feat #3 - I Enjoyed a Zumba Class
Zumba is an aerobics dance class set to dance music where you jump, skip and shake it for an hour. It is exhausting. I love/hate my instructor. She's not even breathing hard at the end. I was, after 12 minutes. But I made it to the end. As my brother once said, "it wasn't pretty, but it did it". That summarizes my efforts fairly succinctly. But I did it. How you ask? Read on!
How are these amazing feats possible? Drugs is the short answer. I think I may have found a biologic that agrees with me. I'm on monthly infusions of Actemra, and I feel fantastic. Really, really super. This is not something I usually write in this blog. If I can't rail against the meds not working, what will I write about? Perhaps all the things I can do with my new-found non-flaring body.
It's nice to write a happy post. Laugh if you must, but it requires a happy song. And who doesn't smile when LMFAO comes on with "Party Rock"?
Friday, May 18, 2012
I'm Blogging Out Loud!
They like me - they really, really like me! I submitted a post to read at a local Blog Out Loud event - and my post was picked! Yeah! There will be around 20 bloggers from the Ottawa area reading the post they submitted. I don't know if there were 21 bloggers who submitted, or if there were 40 - doesn't matter, I'm in!
I've never really put myself out there. I'm usually a private person about the RA side of my life. And I'll be reading a post about my RA to a roomful of complete strangers. When I think back to starting this blog and deciding to write down my story and daily struggles, I wasn't sure I would tell anyone I actually knew about my new blogging adventure, and I wasn't sure if they would read it. But let me be clear - it would be just fine if a group of complete strangers on the internet learned every horrid detail of my RA - just not people I may possibly know. Ahh, the joys of internet anonymity..
I go back to - most people don't know that I have RA. I don't advertise it. And it is a fairly major struggle in my day to day life. There isn't a day that goes by that I don't think about it. I've operated under the philosophy of people don't want to hear you complain. I have a chronic illness, so I have continual possibilities to complain - but I don't want to. It's usually pointless. And who wants to hear complaints all the time?
For the blogging event, I will be reading "I Hate Stairs", which makes me tear up every time I read it. But it is a snapshot of one day of my arthritis struggle and in a few hundred words, I managed to conjure a clear picture of how RA impacts my family life.
I'm excited and scared. My blog is fairly personal and sharing that with 50+ people I don't know is a big step. But it's things like this that help you grow. Starting a blog has helped me find an on-line community of support and friendship. I'm hoping that by sharing my struggle - even with just a small room of people - maybe someone who knows someone with RA might have a better understanding of the struggles, pain and challenges that come with this disease.Or maybe I'll just have fun, meet some people and get over my fear of public speaking. That would be fine as well.
Friday, April 27, 2012
That's just the way it goes...
I went for my six-month post-op check in today. I had shoulder surgery in November and another piece of metal now calls my right shoulder home. As per usual, I spoke with a resident first, who ran me through the usual questions and range of motion.Up, down, behind your back, in, out, around and round.
What struck me about this visit and this resident, is that in the middle of my range of motion, I think the resident caught a glimpse of my life. He was talking about people like me who have had RA for 20+ years, and the shape of our joints and surrounding tendons. He looked at me straight in the eye, paused, and said "it must be hard" in reference to living with RA. Yeah, you bet your ass it's hard. This is not a disease for the weak. No chronic illness is.
As usual, I deflected the comment - but he persisted and asked if I worked, was married and had a family. He seemed satisfied that my life was full in spite of my RA, but the presence of these things. In 20+ years of my revolving door of medical appointments, this is the first time that a doctor, surgeon no less, took the time to look in eyes and stand in my shoes.
I don't think about my RA on a day to day basis on it being hard or easy. It just is. And that's the way it goes. I'm back on Methotrexate, and it is taking no prisoners. I am exhausted. Oh yeah, I'm also going to Disney. Great combination. As I said before, this is not a disease for the weak. I am who I am, because of this disease.
Green Day's "Good Riddance (Time of your Life)" is about choices, decisions, life - the good with the bad. Just like life with RA.
What struck me about this visit and this resident, is that in the middle of my range of motion, I think the resident caught a glimpse of my life. He was talking about people like me who have had RA for 20+ years, and the shape of our joints and surrounding tendons. He looked at me straight in the eye, paused, and said "it must be hard" in reference to living with RA. Yeah, you bet your ass it's hard. This is not a disease for the weak. No chronic illness is.
As usual, I deflected the comment - but he persisted and asked if I worked, was married and had a family. He seemed satisfied that my life was full in spite of my RA, but the presence of these things. In 20+ years of my revolving door of medical appointments, this is the first time that a doctor, surgeon no less, took the time to look in eyes and stand in my shoes.
I don't think about my RA on a day to day basis on it being hard or easy. It just is. And that's the way it goes. I'm back on Methotrexate, and it is taking no prisoners. I am exhausted. Oh yeah, I'm also going to Disney. Great combination. As I said before, this is not a disease for the weak. I am who I am, because of this disease.
Green Day's "Good Riddance (Time of your Life)" is about choices, decisions, life - the good with the bad. Just like life with RA.
Friday, April 13, 2012
The Merry Goes Round and Round
It may have been in or around a month since I've posted. I just didn't know what to say and/or didn't want to face a keyboard with what was rattlling around in my head.
I saw my Rheumatologist last month. I should give him a name - Dr. Kraag. Just in case there are any followers in Ottawa who are in need of a super rheumy. My stats show me that more people read my blog from the US than Canada and all the other countries combined. I have a strong Canadian presence (Hi Mom and Dad), but not sure about my fellow arthritis folks in Ottawa...
I am going back on Methotrexate, is the sum from my meeting about a month ago. Yep, I'll get right on that. It's been a month and I've done very little about that. Methotrexate and I go way back. I was on pills for portions of my University years, and more pills and then some injections in my adult life. We have a long history, MTX and I. But I just can't quite seem to get the needle in my leg.
I actually asked to go back on the drug. Yep, I asked to lose my hair, have mouth sores, feel nausea and fatigue.This all goes back to the constant battle that I have. I don't feel like absolute crap, but I don't feel good either. I'm just meh. So will more drugs help? Who know. Let's stay tuned.
Giving myself an injection doesn't scare me, the side effects aren't great - so what is the delay? Apathy, perhaps. Absolute craziness in work and family life, perhaps. Integrating a new routine, maybe. I just don't seem to care is the perfectly honest answer. I am not flaring, but I can't walk more than 20 mins without some joint screaming and I don't seem to care. And somehow, I'm not sure this will help. But I keep trying.
Do you know that while I am only 36, I can't really remember my life pre-arthritis? Hunh. There's a thought to consider at a later date...
"I wanna know where my confidence went, one day it all disappeared
...
Well I don't need a doctor to figure it out, I know what's passing me by
When I look in the mirror, sometimes I see traces of some other guy."
Words that I get from a very distinguished Canadian band, Blue Rodeo and their song " 'Till I am Myself Again". I am also waiting until I can find myself again.
I saw my Rheumatologist last month. I should give him a name - Dr. Kraag. Just in case there are any followers in Ottawa who are in need of a super rheumy. My stats show me that more people read my blog from the US than Canada and all the other countries combined. I have a strong Canadian presence (Hi Mom and Dad), but not sure about my fellow arthritis folks in Ottawa...
I am going back on Methotrexate, is the sum from my meeting about a month ago. Yep, I'll get right on that. It's been a month and I've done very little about that. Methotrexate and I go way back. I was on pills for portions of my University years, and more pills and then some injections in my adult life. We have a long history, MTX and I. But I just can't quite seem to get the needle in my leg.
I actually asked to go back on the drug. Yep, I asked to lose my hair, have mouth sores, feel nausea and fatigue.This all goes back to the constant battle that I have. I don't feel like absolute crap, but I don't feel good either. I'm just meh. So will more drugs help? Who know. Let's stay tuned.
Giving myself an injection doesn't scare me, the side effects aren't great - so what is the delay? Apathy, perhaps. Absolute craziness in work and family life, perhaps. Integrating a new routine, maybe. I just don't seem to care is the perfectly honest answer. I am not flaring, but I can't walk more than 20 mins without some joint screaming and I don't seem to care. And somehow, I'm not sure this will help. But I keep trying.
Do you know that while I am only 36, I can't really remember my life pre-arthritis? Hunh. There's a thought to consider at a later date...
"I wanna know where my confidence went, one day it all disappeared
...
Well I don't need a doctor to figure it out, I know what's passing me by
When I look in the mirror, sometimes I see traces of some other guy."
Words that I get from a very distinguished Canadian band, Blue Rodeo and their song " 'Till I am Myself Again". I am also waiting until I can find myself again.
Sunday, March 11, 2012
Looking Back...
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.
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.
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.
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