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.