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:

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.

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.

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.

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 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"?

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.

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.

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.

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.

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.