Monday, 18 May 2015

The Ride for Lyme

I don't normally promote much on this blog, but this is too great not to share. If you've been on my Facebook page, you've seen me share about the Ride for Lyme. But I really want you to know what it's all about, mostly because both Lyme and the Ride for Lyme have been part of my life.

Lyme disease is a devastating disease  to have. Even in countries with the greatest of medical care, it can often go undetected and/or under treated. I know many people who are battling Lyme, and it's extremely difficult to treat. A lot of people struggle to be diagnosed in a timely manner, and when they are treated they aren't treated appropriately. It's absolutely life changing in the worst possible way.

The Canadian Health Department doesn't recognize Lyme, nor will they treat it. In 2011, Adeline Nohara was diagnosed with Lyme by an American doctor after 18 months of suffering. Today, she is still suffering because of Lyme. In a response to their friend's suffering, two men decided to spread Lyme awareness and inspire change. They created the Ride for Lyme, where the two are currently riding their bikes across Canada. They have been stopping in different cities, educating leaders and spreading awareness as much as possible.

The two guys doing the ride are Daniel Corso and Tanner Cookson. I think they're doing an awesome thing! Especially because I can barely ride my bike for fifteen minutes without stopping for a break! Though I do not know Tanner, I met Daniel this past year at our university's Catholic center. I can reassure you he's an awesome guy with a heart of gold, and he has a lot of support from people at school and beyond.

When I learned of what Dan was up to with the Ride, I knew instantly that it was something I would be sharing on Arthritis Girl. As a person with a chronic disease that is often unrecognized, misdiagnosed and is not treated correctly (or at all), I understand the struggle that those with Lyme go through to just feel their symptoms are even valid (forget getting a diagnosis and treatment). Those with Chronic Illnesses and their communities need to stick together and help one another, which is why I so appreciate and admire Dan and Tanner's mission. And why I decided I should share a bit about them and do my part to help.

I didn't write too much about their mission on this blog, but I'm including the link to their website on the bottom of this post. From there, you can find their Facebook, Twitter, and Instagram accounts and so on. On my Facebook page, you'll also be able to find links to their page. So, please just take the time to read and donate if you are able to.

Ride for Lyme

http://www.rideforlyme.ca/


Thanks Dan and Tanner!

-Elizabeth
The Girl With Arthritis

Saturday, 16 May 2015

Desperation

Alright. So, I know one of my past posts made it very clear that I was not going to see another rheumatologist anytime soon. I made it clear that it was not worth it at all to me, and I would not be seeing a new one until I was completely desperate.

I saw a new rheumatologist a few weeks ago.

As my academic semester winded down, my body began to flare. My feet are giving me the most trouble, and wearing shoes has become a new form of torture. But all my joints are beginning to ache a lot and swell. I've found myself stuck in a few locations because I was too tired and sore to move. Additionally, I had to leave class twice as well, once just to ice my foot (I've rarely resorted to ice).

So, I made an appointment with a rheumatologist: an adult rheumatologist, who works at the same hospital (just not in the pediatric wing). She received wonderful reviews online, so I thought I would take the plunge as I became desperate. Her reviews did not deceive either; she was very nice and listened to me. She was extremely concerned that not only did I get dismissed by the last rheumatologist, but that I had problems that were completely ignored previously. My new rheumatologist reassured me that I do have disease activity- which speaks a lot since it was a very good day; even on horrible days, past doctors have said I show no disease activity at all. She sent me for a blood test that required 1/4 of my blood (at least), and enough x-rays to guarantee I will glow in the dark one day. She also put all my patient information on my online patient portal, and all my test results were posted as they came in.

It turns out that I'm worse off than the doctors ever realized. The rheumatologist called a little less than a week after my appointment. My bones have developed osteopenia (they are not as dense as they should be). My feet are a bit damaged. I've also been borderline positive for lupus for a year and a half, and was never told. It was probably thought to be drug induced lupus caused by the Enbrel, however my ANA rose six months after stopping Enbrel. But as my new rheumatologist put it, "You haven't developed lupus yet."

She gave me options. She told me I could certainly go on Enbrel again, but she would prefer that I try something else first. So, I'm going to start sulfasalazine very soon. I see her again in two months to see if sulfasalazine worked. If it doesn't, I'll probably go back onto Enbrel. I'm glad she gave me options and made it clear that it was up to me what I want to do with my body.

I think it's the start of a wonderful physician-patient relationship.