Race Report

This past weekend was the first annual Victoria Goddess Run, which consisted of a 5K, 10K and half marathon. Lisa emailed Heather and myself a few months ago and suggested combining this event with a reunion here in Victoria [as we all live in different cities]. I decided that as daunting as it was, I was going to challenge myself to walk the 5K course - a distance that I haven’t tackled in a long, long time. I knew it would be a good stepping stone towards my 10K in Switzerland this fall though. As it grew closer, I started to get more nervous. I was going for smaller walks in an attempt to gear up for the event, but I was terrified of pushing it too much and going for the full 5K before the actual event. 

The week leading up to the weekend of the walk was not the greatest joints-wise. I hadn’t been sleeping as well as usual which always takes a toll on my body – as it does anyone’s. I was nervous. I was nervous that I wouldn’t be able to complete the full distance. I underplayed it in saying that I wouldn’t be upset if I had a “did not finish”, but deep down, I didn’t want that. I don’t give up easily but sometimes I have to accept that I can’t do certain things. 

I messaged Trish the night before stating that I was a little nervous about how my body was going to hold out for the walk [and afterwards] and she sent me a fantastic, inspiring message in return, giving me an extra boost of bravery. 

The morning of I felt pretty good – especially considering how much sangria Heather and I drank the night before! The pitchers of sangria at Pagliacci’s? SO GOOD. Just... maybe not the night before you’re doing a run/walk! We made our way out to the event and met up with Lisa there. Lisa was running the 10K and started 15 minutes ahead of my event. Heather and I saw her off, and then things got real. I was about to get in line for the 5K. FIVE. WHOLE. KILOMETERS. Heather, being the awesome cheerleader she is [she was side-lined by foot surgery and unable to run like planned] walked me up to the start line – I’m quite sure at this point she could tell how nervous I was getting. 

And then we were off! Since I was walking, and I’m courteous, I positioned myself at the back of the pack. 1) Nobody has to play Frogger to get around me and 2) the fewer people I see passing me. 

I won’t sugar coat things and say that it was easy. My knees were screaming at me from the moment went started. The first two kilometers went relatively well, and between the 2 and 3 kilometer markers I was feeling pretty good – it didn’t feel too far. From 3 to 4 I noticed the distance a bit more, but hitting that 4K marker felt amazing. Knowing there was only one kilometer left I knew I could do it. 

At this point the 10K and half marathon routes had looped back and joined up with the 5K so that we all finished along the same route. On the one hand, dozens and dozens of people passing me, but on the other, it was good to be surrounded by everyone sharing a common goal – finishing. I can’t even count how many people slowed to ask if I was doing ok, since I walk with an obvious limp. Usually this question from strangers bothers me. Mostly because it’s phrased “Why are you limping?” which is a pretty invasive question. It’s like asking someone with major scars what happened. But not once was I taken aback when people along the course asked me how I was doing – they were genuinely concerned. I would smile and was honest, stating that I had arthritis in my knees but doing well. Most of them would continue on with a quick “ok!” and that was that. Around the 3K marker after having this exchange with one runner she paused, look me dead in the eye and stated “You are really a TRUE goddess” before continuing on ahead. I think that’s what got me through to the last kilometer. 

When I rounded the last corner, and the finish line was visible up ahead, I knew I was going to do it. Heather jumped onto the course not far from the finish to give me a hug and words of encouragement for the last little bit. Cue starting to tear up. She let me continue on ahead alone through the finish, walking around to meet me as I came through.

And then I was greeted in the best way right at the finish. Cathy, one of the race directors, was standing there cheering the women as they came through the finishing chute. We spotted one another and she came skipping over to me to give me a giant hug and sling her arm over my shoulder as I crossed the finish line. She told me how proud she was and that she was getting teary. Which of course instantly made ME teary again! I’m sure my finishing photo is stunning! 

I felt amazing after. Mentally, that is. Physically, I was done. Although not as done as I thought I was, since it was still almost a full kilometer back to the car. With the walk to and from the car I actually walked 6.8K that day – awesome! Even closer to my goal of 10K! I was pretty stiff and sore for the rest of the day, and the following few days, but surprisingly not as bad as I was expecting. 

Having so many people cheering me on, both in person and from far away [my mum!], known and unknown, gave me the courage to not only start the event, but to finish it. I may have been dead last for the 5K [not a surprise in the least] but I was surprised that there wasn’t as much of a gap between me and the previous finishers in my distance. And last or not, I finished. With a smile on my face and head held high.

The Loss of a Team Member

My dear friend Lisa wrote a blog entry earlier this week that talks about a subject that I haven't had the time, or energy, to write about until now.

Since moving to Victoria I have had the fantastic opportunity to spend more time with my Joints in Motion coordinator, Trish. I've known her for not quite two years now, when I first got involved with the program. At the beginning of this year she approached me and asked if I wished to be involved with the committee for The Walk to Fight Arthritis, as well as be a coordinator with Tour de Victoria. That, along with Joints in Motion, means I get to see her fairly frequently, which is glorious!

Last week, Trish shared the news that her dear friend, also named Trish [or Trish 2 as she was lovingly known as] had passed away due to complications from arthritis. Trish had done two previous events with Joints in Motion and was in the midst of raising money for her third this upcoming winter. She was 36 years old. No, wait. Not 36 years old. 36 years young.

Trish 2 was diagnosed with juvenile onset rheumatoid arthritis when she was 8. She had exhausted all the available medications to treat her arthritis and was on a drug that was only just released this past October. Everything else had either not worked or eventually stopped working for her.

The drugs that are used to treat RA and other autoimmune diseases sometimes only work for so long before a patient's body stops responding to treatment. This is why it's so important for the funding of research to find new drugs to treat this disease.

Did you know that the Arthritis Society is 100% donor funded? It no longer receives funding from the government and hasn't for many years now. This is why events like the Walk to Fight Arthritis and programs such as Joints in Motion are so important - it raises funding, along with awareness. With Joints in Motion, which is my main fundraiser, 85% of the funds go directly to research. Research to find new drugs. Better treatments. Research to find a cure.

Of course, because I myself was diagnosed with rheumatoid arthritis seven years ago, this all hit incredibly close to home. So few people understand just how much arthritis and all the complications that arise because of it can affect a person's life. It's not as simple as "Oh, my knees are sore".

I am incredibly lucky thus far. My secondary side effects are fairly minimal. My feet are constantly cold, and if I'm not diligent about taking an iron supplement I become severely anemic. Two years ago I was sleeping for eight hours a night and napping for another 3-4 hours a day if possible because I was so anemic and fatigued. And I was still constantly exhausted. I've had to stop wearing contacts because my eyes are so dry, which is caused by my arthritis. It sounds simple enough, and more an inconvenience than anything. But if severe it can lead to loss of vision. Do I go around telling everybody this? No. [Well, now I am!] It's not a guarantee, so why should I focus on something that may never happen? But the possibility is there.

Along with the actual disease itself and what it can do to a person's body, there are the drugs that we take just to get ourselves to function on a daily basis. Some of these drugs are new and no real long term studies have been done on them. We weigh the pros and cons of this when making a decision to try any new medication. We chose to LIVE our lives. I can't enjoy the company of my family and friends if I can't get out of bed.

Over the past week I have spent a lot of time thinking about this. Often with tears streaming down my face. It will catch me off guard and when I least expect it I'm hit with another wave of sadness. When talking to a friend about this all I said that I wasn't necessarily angry sad, or even scared sad. That in fact it was more acceptance sad, if that makes any sense at all. I'm not saying "this is going to happen to me". I've learned that with this disease you can't say that. Sure, there are best and worst case scenarios, but you can't dwell on the worst. Again, it's the choice to LIVE over the choice to just simply survive. I spent two years after first being diagnosed just barely surviving. They are the two most miserable years of my life. When I hit a rough patch I look back on that time and remind myself that the reason it was so horrible was because I allowed it to be so.

Just before she passed away, Trish 2 had someone ask "How many years do you expect people to give? You can't possibly expect people to give to you every time you fundraise, do you?" She responded "Yes, I bloody expect people to give until there's a fukken cure."

I am quite certain that I would have liked Trish 2's tenacity and strength.

About As Real As It Gets

A few months ago I wrote in my private journal about a really rough day that I had with my arthritis. I am always incredibly hesitant to share so openly this type of thing, because I hate feeling that perhaps people think I complain too much. Or that they think I should just "suck it up" and get on with the day. So I keep a lot of the pain buried down deep, reluctant to let on just how much I'm suffering some days. I'm getting better at being more open about it and if you ask me to do something that I know will just be too much for my body I will be upfront about it. But I rarely get into the nitty gritty of it. Even with the most trusted loved ones.

So this one time, I am going to hold my head high and own it. I will put aside the fear that people think I'm just looking for sympathy, and hope that those who read this will understand a little more as to what it is a person with arthritis goes through on a somewhat regular basis.

November 2011

I had a really, really, really bad day today, joints-wise. So much so that I actually posted to facebook about it, which I tend to normally shy away from doing. Sometimes I might make mention of my arthritis getting me down but I always try to do it in a lighthearted way. There was no lighthearted today... I just could not manage it. I woke up feel as though I had been run over by a truck. And it didn't get much better as I stood up and tried to get some mobility going. I cried while brushing my teeth, squeezing the tube of toothpaste against the sink with my palm because I couldn't use my fingers, and clumsily holding the toothbrush in the palm of my hand with my thumb. I skipped the shower because I couldn't fathom stretching my arms up high enough to wash my hair. I had to swap the shirt I originally grabbed for a stretchier tank top, because I couldn't get the first one on due to pain. I was a disaster this morning, on the brink of tears while getting ready, occasionally releasing a sob every so often. But I couldn't full on cry - I had to get to work! And nobody wants to go to work with a freshly cried face! Bleh!

I think I drugged myself up well enough for the morning but by mid-afternoon it started to go downhill again - and I was too stupid to bring extra painkillers with me. Thankfully my boss came in for a couple hours in the afternoon, after my other coworker had finished, because I got slammed with about five people wanting to try on shoes all at the same time. The timing was more perfect than I think he realized and that I was willing to let on.

I haven't been hit like this in a very long time. Where every joint aches. Where going to the washroom seems like the most monumental task of getting down and back up again. Breathing becomes physically painful because my whole body is so tense with pain that the muscles around my ribcage are tender.

It makes me wonder if I'm in the right job right now. I mean, I definitely don't want to be in this job forever, but I'm having visions/nightmares of this happening more and more over the next few months. Which may not happen - this could be a one time thing. But what if it's not? Working at a job where I stand on my feet for 8-9 hours a day isn't really ideal when the only thing my body wants to do is give out. But the job market sucks, and to find a job where I can still make enough money to pay rent and my other expenses and try to save for next year... wow. It just feels like a lot. And I REALLY want to put in a full year as manager, if only for the sake of being able to put it on my resume and not look like a failure or a quitter.

That being said, I know that my health has to come first. I guess I have some looking and thinking to do.

------------

As most of you know at the start of the year I left my job at the Running Room after four years there. There were a few reasons as to why I made the departure, but my health played a very large part - more than have been willing to admit when it comes up with friends. And it really makes me sad, because as much as I don't want to admit defeat to this disease, some things are just too much for my body to handle.

A Glimpse Into My Daily Life Through Someone Else's Eyes

One of my goals for this year is to write more openly about living with rheumatoid arthritis. So far I haven't done much of that and it's partly due to the fact that my trusty macbook died a few weeks ago. Sadness all around, indeed. This entry was typed up on my blackberry - dedication or what!

My friend Lisa, who I met in the Caymans with Joints in Motion at the end of 2010, has a blog to keep people posted on how her training and fundraising is going. Lisa herself does not have arthritis - she goes through the highs and lows of training and slugging her way through the trials of fundraising in support of a dear friend of hers, Katherine, who was diagnosed with RA a few years after I was.

Back in November Lisa invited myself and Heather, a fellow RA-er and Caymans JIM participant, over to the mainland for the weekend to partake in the Walk for Arthritis with her and Katherine. After the Caymans Lisa told Heather and I that she would love it if we could meet Katherine, because she saw how instantly Heather and I bonded over the understanding of living with this disease and wanted Katherine to experience that, too.

So when it worked out that I had the weekend off I agreed immediately to join in what I knew would be fun. The thing that neither of them knew was that I severely needed the trip, emotionally. I was at a point where I was unhappy with a few things in life - my job and health specifically.

When my health takes a bit of a dive one of the first things to take a hit is my social life. I am often too exhausted and/or sore to want to go out after work. So I stay home where yes, I'm in less physical pain but then the emotional side of things takes a hit. I get upset (with myself) that I'm missing out on something. Or worry that friends think I don't care enough about them to get together with them.

And then I get blue, because I think "without this stupid disease I'd be able to enjoy things more". And let me tell you what a slippery slope that is.

So the thought of spending a weekend with people who either have RA or are extremely familiar with it was exciting for me. That I could walk a little slower and not be self conscious about limping and having someone ask about it was like a weight lifted off my shoulders.

You'll read in Lisa's entry about getting in and out of her car - Heather and I were almost in hysterics laughing over it at one point because if anyone was watching us get out they would have thought "WTF?". But it felt so good to laugh about it while doing so, rather than releasing a sigh and wondering what people who saw me were thinking, which is usually what goes through my head.

I teared up on the ferry ride back to the island because it truly hit me how much I need trips and people like that in my life. I am so lucky to have them to lean on for support, both physical and emotional. And I know I need to plan more of these get togethers with these fabulous women. Not only for the sheer enjoyment of their company, but for my sanity in dealing with the tough moments this disease comes with.

When Lisa posted this entry on her bog it made me both laugh and cry. I was so touched at how observant Lisa was at how Heather and I do our "daily tasks" and search for any sort of shortcut to make it easier on our bodies. It's become so natural for me that I don't even know I'm doing them.

Lisa's Touching Blog Entry

Both sides of the mountain

My first three years living in Nanaimo were spent living in dorms. Ahh, dorms. What an experience you were. I'm glad I chose to live in them, because coming from a city two provinces away to a city where I knew nary a soul was intimidating. I lucked out with the most fabulous roommate my first year, whom without my year would have been much less enjoyable.

I have no idea what prompted one of the guys from the second floor to invite me along on his annual ski trip up to Mount Washington that year, but it became a staple for my remaining years at Malaspina, and even one after I left school. A dozen or so of us would pack ourselves into cars and trucks and Jeeps and make the trek up island. Sometimes we had a condo, other times a chalet all to ourselves. We never had a bad location. The days on the mountain were spent on the slopes, lounging around the chalet or walking through a wintry landscape. The nights were spent playing cards, poker, drinking, tobogganing, heading to the pub, and many crazy adventures.

One year myself and two others decided to hike up the mountain with our sleds. After a solid night of drinks, food and dancing at the pub we set on up the mountain. Not to worry - we made sure to bring hydration. A Camelback with rum and Coke.

How long this took, I have no clue. But I remember the hike being half the fun. So many times I came close to telling the guys to just keep going and leave me behind, but if you know me you know I'm stubborn. So I stuck it out and we made it to the top of the Whiskey Jack lift [not quite the top]. Where we promptly had to hide in the trees to avoid the grater grooming the trails.

And then we were off! There was a tube, a classic plastic toboggan and I manned my usual crazy carpet. We FLEW down the mountain - my boots were filled with snow upon arrival at the bottom from digging my toes in to try and prevent myself from flying off the mountain. It still ranks as one of the best nights ever. If you have the chance to ride a crazy carpet down a mountain, I highly suggest you do it.

Those are the kind of [physical] adventures that I miss. Perhaps one day I'll get to do it again, but I know that when I head up to Mount Washington next weekend for a couple nights of relaxation and good times with friends I won't be making any midnight hikes up the mountain. I will be in great company though and maybe - just maybe - I will find a little hill to cruise my crazy carpet down. You know. As long as someone is at the bottom to help my sorry ass back up.

One year ago

How do you sum up one of the most amazing experiences of your life?

You can't. But you can sure as hell try.

[I'm getting teary already, oh geez. BRING ON THE KLEENEX.]

When Jason suggested last summer that I be his hero for the Caymans Marathon with the Arthritis Society’s Joints in Motion team, I was honoured. So then when he stated I should come down and join as part of the Cheer Team I jumped at the chance, regardless how soon it was to the date of the marathon and how much I had to fundraise.

Words cannot express the absolute love, acceptance, joy, sadness and gratefulness that I experienced over those twelve days. I cried every day for weeks afterward. For both myself and for everyone that shared this amazing event with me, and everyone out there who is dealing with arthritis without much of a support group. This trip gave me something that I haven’t truly felt since being diagnosed with RA nearly seven years ago - a support system. I have amazing family and friends, but there are few people who actually “get it”. That will understand the little [and big!] twinges here and there. The constant dull, aching pain that you actually forget about because it’s just a way of life. The days where you can’t or don’t want to get out of bed because it hurts too much. The way that you modify doing something so that you don’t aggravate a tender joint. The ones who never complain because we have come to deal with this disease silently.

I may have gone down as Jason’s hero for the event but I feel that everyone who participated in the event, arthritis or not, became my hero. My life is a million shades brighter having met all of these wonderful people, and sharing the experience with them.

Of course I wish I had never been diagnosed with this disease. That I could run and jump and do all the wonderful things that I did for 22 years prior. That I wouldn't have to evaluate every outing, every activity, and decide how much it will affect how I feel the following days. But let's focus on the silver lining. Without it, over the last seven years I wouldn't have met some of the most amazing people that I have in my life. People who understand me, who inspire me, who comfort me, who push me just enough to keep me going when the going gets a little tough.

If friendship was wealth, I would be swimming in money like Scrooge McDuck.

And another adventure begins...

I'm going to take a cue from Lisa and blog my adventures over the next year with my fundraising and training for my Joints in Motion event next October. I'm going to try and be more open with the daily tasks I find difficult, or things that go through my head on days where things are... less than perfect. Why? Not because I want to complain. But because if I don't, how can I truly share this disease and how it affects people?

Tomorrow will be a post to really kick it all off. Tomorrow is the one year mark from heading out on the adventure of my first JIM event. It will be an exhausting one to share, but so very worth it.

In the meantime, a link to my fundraising page for future reference