Interactive Tick-Borne Illness Map (And a Quick Update)

Discover Magazine is doing something really cool regarding Lyme. This website invites people to plot where they believe they were bitten by a tick and give a 100 word blurb about their story. It’s pretty neat!

When I went to plot my bite, I saw that there was less than 10 plots in California! More people need to fill this thing out. I know for a fact that there are 1000s of people in California who have Lyme. I also know that I am not the only person who was bitten in Sacramento county. Where are all my other Sacramento Lyme support group friends?

Out of curiosity, I also looked up how many plots were in Oregon. There’s only one person so far! Like I said, more people need to do this.

The point of the map is to show just how skewed the CDC’s numbers are. If even 50% of the people in the world with Lyme actually filled this out, we would really surprise some folks! This visualization shows just how wide-spread Lyme really is.

For all my fellow Lymies out there, please fill this out.

Here’s the link!

Interactive Tick-Borne Illness Map | DiscoverMagazine.com.

In other news, I’m really looking forward getting back on antibiotics. Some of my symptoms that had gone away when I was on abx are starting to come back. I’m having really annoying tinnitus, headaches, and insomnia.

The tricky part is that I can’t go back on antibiotics until I take care of my awful awful awful problems with Candida. I’ve tried 4 different anti-fungals and none of them have worked. This week, my LLMD gave me a prescription for some boric acid suppositories. I think it’s too early to tell whether or not they’re working yet, but I have high hopes. The quicker I take care of Candida, the quicker I can get back on antibiotics. And the sooner I get back on those bad boys, the sooner these stupid symptoms will get better.

Also, I just found out I need to get my wisdom teeth pulled. Yaaaaaaaaaay. It’s happening this Friday and I’m worried about it. I’ve heard horror stories of Lymies who get oral procedures done and have their Lyme totally flare up in the process. I decided to be honest with the dentist and tell him I have Lyme. I also told him I’m worried about what’s going to happen afterwards. He said that since my bottom right wisdom tooth is the only one that is a serious risk, he would pull that one first and do the others at a later time. So at least I don’t have to get all four out at once! I’m just trying to be as cautious as possible with this.

Wish me luck, friends!

Best,

Sofia

Disability Awareness: The Ability Exhibit

Last week, something really cool happened at my school. And I was involved in it!

The Ability Exhibit. Thanks to several amazing people, this traveling exhibit came to the University of Oregon! The exhibit is an interactive experience meant to display the many different facets of disability in a fun and informative way. The end goal is to raise consciousness about what it’s like to have a disability. For more info, visit their website!

As the president of the AccessABILITY Student Union, I helped facilitate the exhibit for most of the time it was on my campus. It was awesome!

 

Me and my fellow disability activist friend, Antonia sitting at the Welcome Table

Me and my fellow disability activist friend, Antonia, sitting at the Welcome Table

The exhibit talked about various topics related to disability awareness, including person-first language, universal design, disability law, and historical milestones of the disability movement. Each topic was addressed at a different station, which were all set up in a square shape in my school’s student union.

This was at the person-first language station. If you remove the panel, it says "Person who uses a wheelchair"

This was at the person-first language station. If you remove the panel, it says “Person who uses a wheelchair”

Person-first language is important in the disability movement. By using person-first language,  the speaker is able to separate the person from their disability, rather than equating both.

This is a quiz about disability law in higher education. The answer to the question is "False." Students have to provide documentation in order to receive accommodations for their classes.

This is a quiz about disability law in higher education. The answer to the question is “False.” Students have to provide documentation in order to receive accommodations for their classes. Very informative!

Each station had braille placards to visitors with vision problems can benefit from the exhibit too! There was also the option of borrowing headphones for a provided guided listening tour of the exhibit. Inclusiveness!

Beautiful banners outlining the major milestones of the disability movement and some interesting statistics about people with disabilities

Beautiful banners outlining the major milestones of the disability movement and some interesting statistics about people with disabilities

The exhibit was located in the center hub of student activity on campus. Lots of students wandered by the exhibit, having no idea what it was. A pleasant surprise!

Posters showing actions leading up to the signing of the Americans with Disabilities Act in 1990. Access is a civil right!

Posters showing actions leading up to the signing of the Americans with Disabilities Act (ADA) in 1990. Access is a civil right!

Before the ADA was signed, people who use wheelchairs were turned away from restaurants and busses for being “fire hazards” or eyesores. They lacked basic rights. There were several posters documenting the injustice experienced.

At the end of the exhibit, visitors were encouraged to sign a pledge to be an ally. Here I am holding the board at the end of the exhibit's run. So many allies!

At the end of the exhibit, visitors were encouraged to sign a pledge to be an ally. Here I am holding the board at the end of the exhibit’s run. So many allies!

Facilitating this exhibit was an awesome experience. I met so many people and listened to countless stories about all types of disabilities. Because Lyme bars me from participating in so many of life’s activities, I identify as a person with a disability. My school has a profound lack of disability culture. I felt absolutely refreshed after spending my week here. I felt that I was able to help raise peoples’ consciousness and advocate for other people with disabilities.  This was just one small step in the journey towards equal treatment of the disability community. The activist in me is pleased.

Social Justice!

Best,

Sofia

 

 

 

 

Lymie Rapper at the IDSA Lyme Guidelines Protest

Last weekend, I wrote a post about the IDSA Lyme guidelines protest in San Francisco. The protest was a very positive event and had lots of cool speakers. This rapper, who goes by Revolt, has Lyme disease and performs across the Bay Area. This is his rap about the Lyme experience. I was completely blown away by his performance! His lyrics really hit home for me! I just thought I’d share the awesomeness with you folks too!

 

 

Best,

Sofia

IDSA Lyme Guidelines Protest in San Francisco Recap

Photo courtesy of Lymedisease.org

Photo courtesy of Lymedisease.org

Yesterday, Lymedisease.org  hosted a widespread rally protesting the IDSA Lyme Guidelines in San Francisco, California. The protest coincided with the IDSA’s annual meeting.

Sadly, I wasn’t able to attend, as I am in Eugene for school and could not make it down to California in time for the protest. I was there in spirit! Also, I was wearing my Lyme Disease Awareness t-shirt, so I’m going to count that.

My mom and dad did go though! They’re wonderful allies. 🙂 From what my mom reported to me, about 100 people came out to the protest. There was a Lymie rapper, various speakers, including former park ranger Jordan Fisher Smith from UNDER OUR SKIN, a stage for protesters to tell their stories, and a truck sporting a gigantic protest sign.

Here’s some pictures!

My mom's sign she took to the protest. The IDSA has it wrong!

My mom’s sign she took to the protest. The IDSA has it wrong! Photo courtesy of my mommy. 

Protesters and their signs. Photo courtesy of Lymedisease.org

Protesters and their signs. Photo courtesy of Lymedisease.org.

Jordan Fisher Smith, former park ranger and writer, from Lyme documentary, UNDER OUR SKIN. Photo courtesy of Kai West Photography.

Jordan Fisher Smith, former park ranger and writer, from Lyme documentary, UNDER OUR SKIN, speaking at the protest. Photo courtesy of Kai West Photography.

Lots of protesters and their signs. My mom and dad are on the far left! Photo courtesy of Kai West Photography.

Lots of protesters and their signs. My mom and dad are on the far left with their awesome sign! Photo courtesy of Kai West Photography.

 

It looks like it was a fun day! I really, really, really wish I could have gone! It’s events like this that really helps to spread awareness about Lyme. Though the protest probably did not make a difference in the minds of the IDSA meeting attendees across the street, it’s still important to come together and raise awareness to the passerby. 100 protesters is not exactly a large number and there definitely could have been more, but the important thing to remember is that members of the Lyme community came together to protest something that has affected all of our lives. And that’s really great.

Best,

Sofia

 

 

Invisible Illness Awareness Week: Why Are You Questioning My Need for a Wheelchair?

Some Wheelchair Users Can Walk

In the blog post above, Beth Griffiths, 20 year old chronically ill beauty blogger, touches on the complexities of being a young, attractive person who uses a wheelchair- and has an invisible illness. She describes how often people question her use of handicapped parking spots even though she can walk.  Continue reading