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.
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