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

Bubblegum Pop to Indie Rock

So I have been a little horrible at writing lately, but settling into a new position in a new store in a new city has had me a little overwhelmed for the last month and a half. Oops! The first three weeks I did a lot of commuting back and forth between Victoria and Nanaimo, and while I don't mind the drive, it's nice to only spend twenty minutes in the car a day rather than the 3.5+ hours.

During my traveling days of the first month of work I put on 3000km on my car. So somewhere between 30-45 hours worth of driving. I somehow became sick of all the music on my ipod. Like most people, I prefer specific types of music for certain activities. I almost always pick upbeat tunes over mellow, but even within that choice I have certain albums and songs that I pick for work, driving, walking, etc. For driving I enjoy having songs and/or albums that are, to me, sing-a-long albums. While I adore Fleet Foxes or Portastatic for work, I just don't feel the same about singing along to their music as I do James Blunt or Hannah Georgas. And by singing I mean hollering at the top of my lungs.

Around the two week mark I dug into my cd collection, consisting greatly of albums from my high school days.

I'm just going to put it out there right now. HUGE POP/BOY BAND FAN during those years. So a lot of my cds are, oh, YOU KNOW, Backstreet Boys, NSync, 5ive, Westlife [loved the British boy bands!] and numerous burned mixed cds from the early days of Napster filled with bubblegum pop music. So I grabbed a few classics and a few various cds. I popped in a mix cd one morning on my departure to Victoria and as I drove through Ladysmith the lyrics to one song came flooding back to me all these years later. "THIS IS SO DIRTY!" I suddenly exclaimed aloud to no one as the meaning of the lyrics sank in. And again and again I said this, because OH MY GOD how did I not turn into a skanky little thirteen year old listening to these lyrics?!

After being relatively horrified at how dirty the lyrics to some of the songs were, I began to think about how it compares to the type of music that I tend to gravitate towards now. Sure, one could say that the music I tend to listen to still has roots in the "pop" genre, but is much more rock based than anything.

One thing I am going to miss terribly about my old store is the music. Often we would throw a CD on, hit "repeat all" and forget it was playing for the next four hours. You'd forget what you were listening to but be enjoying it at the same time. Mike was always discovering new bands or introducing us to old favourites of his. [Amazingly enough I discovered The XX before he did, though not by much.] Shout Out Louds, Spoon, Chad VanGaalen... the list goes on. I've already made Vicky promise to keep me in the loop by emailing me the newest albums brought into the store.

Out of all the musical memories I have from that store, and the dance parties that Vicky and I had, I'll never forget the day that Mike put Christina Aguilera's "Candyman" on repeat for a solid half hour. He bopped his [then] headful of hair and big bushy beard along, truly enjoying the song, exclaiming how it had such a catchy beat. It still makes me giggle every time I think of it.

A love/hate relationship with the sun

Please watch this.

Cancer is one of the things that truly terrifies me that I have no power over. Sure, I have a fear of jumping off a bridge with a bungee cord tied to me, but I can overcome that if need be. I can get up in front of a crowd of people to speak, turning bright red in the process, but survive.

From the age of sixteen I spent countless hours in the sun as a lifeguard and swim instructor. As a result there are countless burns from those years. There were days I would roll into work with enough time to get out on the pool deck but without enough time to slather on the sunblock. Or the summer after my grade twelve year, where it was mid August and I was the darkest I had ever been in my life - surely I didn't need to apply sunblock that one day I was running a bit late. I most certainly went home with a sunburn that day. Perhaps not severe, but it was there.

Add to the fact that I'm fair skinned, blue eyed, have seasonal freckles and natural red highlights in my hair and I know that my risk is high. And while skin cancer doesn't run in my family, cancer in general is very prominent.

I used to joke that I would have skin cancer by the time I was twenty five because of all the burns I had over the years. I'm currently twenty eight and now live in fear of finding a new spot, mole or any other sort of change in my skin.

Two summers ago I found a small freckle/bump on my forehead near my hairline that I had never noticed before. Cue panic. I made an appointment with my doctor to have it checked out. I feared that she would make note of it in my chart, tell me to "keep an eye on it" and send me on my way, even after explaining why I was being so pro-active.

Luckily she is an amazing doctor and pro-active herself. She completely understood my fears, had me make an appointment to get it removed the following week and then sent off for testing. She also removed a mole that I've had since I was born at the same time and sent it away, too. The wait for the results was nerve wracking and you can imagine my sigh of relief when they both came back negative.

When I was younger, a burn meant a bit of pain for a day or two - and then it would melt into a nice tan. Now I'm much more diligent with sunblock. Amazingly during the ten days that I was in Grand Cayman last winter I only got one burn - and relatively minor compared to what I've suffered in the past. Every day year round I apply a moisturizer with SPF 15 in it to my face.

Even though I love how a dark tan looks and adore having a nose covered in freckles brought on by the sun, I have come to embrace my fair skin and do my best to prevent any more damage to my skin. I'm not going to avoid the sun at all costs, but I'm smarter about how I approach it.

Because it just isn't worth the added risk.

Actually, any alcoholic beverage will do

Since first moving to the island, I have moved eleven times, including the moves back and forth to Saskatoon during the summer holidays from school. This upcoming one will be my twelfth one in under nine years.

When I move I'm pretty organized. In preparation for my last move I started packing a month before. Granted, I had an entire apartment to consolidate into one bedrooms worth of furniture and belongings [with a few extra containers in the laundry room of the condo]. Thankfully a friend stored things like my two gigantic bookcases, a few lamps, kitchen items that I wouldn't be needing for a while and other odds and ends that weren't necessary for living where I currently do.

[Sidenote: my current roommate has EVERYTHING you'd ever need, and more. So long, gigantic tv! Netflix! PVR! Couch of dreams!]

Every move I have ever done has taken under three hours. Boxes, bed, desk, dresser, etc... it has always been efficient. The unpacking always takes a heck of a lot longer, but the actual transportation of belongings is quick and easy. I know part of it is because I would feel like absolute rubbish if someone were to show up to help me move and I had things unpacked still. That's just a dick move, let's be honest here. Another reason that I make sure to have everything all set to go is because I am pretty useless when it comes to actually moving. Now more than ever - I can barely lift up my twenty pound cat, let alone carry heavy boxes or a bed.

This upcoming move is turning out to be a little different than previous ones. I move in about a week and I feel as though I have hardly even made a dent in packing my life into boxes. Granted, I have been working full time at a new job in a city that is 1.5 hours away for which I have been both commuting and staying down there for the last week and a half. BUT STILL. I am starting to feel fairly nauseated when I begin to think about the actual move and how it's all going to go down. It may come down to me declaring "Eff it!" and just throwing crap randomly into boxes.

So if you see me in the next week, the kind thing to do is to avoid asking me how the move is going. Instead, offer me a Palm Bay and give me a gigantic hug.