Hey you guys! What are you doing on May 20th? Wanna know what you should be doing? Okay!

May 20th is the first ever World Autoimmune Arthritis Day hosted by the International Autoimmune Arthritis Movement (IAAM). The 47 hour-long event – long enough to cover May 20th in every time zone! – is a free convention on the internets presenting wonderful information on living and coping with all types of autoimmune arthritis.

Autoimmune arthritis, a term developed by IAAM and a team of rheumatologists, is defined as any of the following diseases: Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, Sjorgen’s Syndrome, Systemic Lupus Erythematosis, Still’s Disease, Juvenile Arthritis, and both Mixed and Undifferentiated Connective Tissue Diseases. The criteria for being labeled as autoimmune arthritis can be found at the link above.

So please check out WAAD. There will be live presentations and chats, as well as downloadable presentations. Yours truly is currently working on her downloadable presentation on Making the Most of Your Healthy Time. It’s going to be amazing!

I won’t be able to participate as much as I would like, as I’ll be trying to become best friends with the producers of Jeopardy so that I can go to LA. Oooh, life is tough sometimes 🙂

Please, please check this out! You won’t be sorry you did!

Note: If you’re interested in learning more about IAAM, you can find more information at the link above or feel free to contact me. It’s one of the wonderful organizations that I volunteer with, and I’ve met so many amazing people there who are really working hard for awareness. It’s one of the best things I ever did to become involved with them.

Taken from: http://languageisavirus.com/cgi-bin/madlibs.pl

painful cow’s painful cow

painfully i have never running, carefully beyond
any ankle, your wrists have their swollen:
in your most tender knees are things which shooting me,
or which i cannot swimming because they are too slowly

your red look quickly will unpumping me
though i have calling myself as ankles,
you eating always shins by shins myself as bike crying
(cursinging patiently, quietly) her itchy treadmill

or if your book be to flying me, i and
my doctor will swelling very easily, readily,
as when the pie of this ankle hurting
the music loudly everywhere smilinging;

nothing which we are to mooing in this neck watching
the joints of your cold fluid: whose pants
listening me with the feet of its toes,
talkinging fingers and margarita with each singinging

(i do not dancing what it is about you that rapping
and writing; only something in me blogging
the sangria of your wrists is calm than all bike)
stars, not even the shoulders, has such warm back

– Kirsten & e.e. cummings

Create Your Own Madlib on LanguageIsAVirus.com

I always thought that when asked to pick 5 people, alive or dead, to join me for dinner that I would pick amazing or noble people – Cleopatra, Gandhi, The Dalai Lama, you know people of that nature. Now that my life is a little bit different from where I thought I would be at almost-24, I think my answers have really changed.

• Lucille BallLucille Ball has always been one of my favorite people. As a child (and still today), laughter always helped me get through my pain. I Love Lucy reruns were a really big part of my childhood. It wasn’t until the last few years that I learned that she developed RA as a teenager. Her original dream was to become an amazing dancer. When RA hit, she had to learn how to walk all over again. Through her different shows, she incorporated dancing and was able to be very physical despite the progression of the disease. I admire her tenacity and her bravery. I would love to learn more about her resilience and how she was able to fight through the pain. Here are my three favorite quotes from the famous redhead:

“One of the things I learned the hard way was that it doesn’ t pay to get discouraged. Keeping busy and making optimism a way of life can restore your faith in yourself.”

“Love yourself first and everything else falls into line. You really have to love yourself to get anything done in this world.”

“I’m not funny. What I am is brave”

• RenoirI’m not much of an art person. The great artists I care about are Italian, and that’s why I love them… which is not entirely true because I love Middle Eastern art but not enough to tell you names. Renior, though, fought RA for a very long time. Towards the end of his life, he was bedridden and his hands were so deformed he couldn’t do what he loved most – paint. Eventually, he decided to bind his brushes to his hands and he learned to paint differently. I admire his fighting spirit most.
• The Dalai LamaMy undergraduate degree is in religious studies, but I started out in chemistry. People who don’t know that much about me assume that I did it because of faith, seeing as how I’m also an ordained minister. They really don’t know me well though. My sophomore year, I took a survey class on Asian Religions. I mostly did it because I do yoga to help with my illness, and I have since I was about 12 or so. I wanted to learn more about Buddhism and about the roots of yoga. By the end of that class, not only had I changed my major but also my outlook on life. I would not say that I am a definite Buddhist or anything, but if I had to choose a religion that follows mostly what I believe, then Buddhism would be it.

  And the Dalai Lama has an amazing sense of humor. Seriously, the man watches Monty Python and laughs constantly.

  Here is one of my favorite DL quotes. I like it because there is so much truth to it, and you don’t need to be a believer or accept someone into your life for it to be true:

“If we were aware that we all contain love within us, and that we could foster and develop it, we would certainly give it far more attention than we do.”

• Jon Stewart and Stephen ColbertThese men are two of the funniest and smartest in the world in my eyes. The boyfriend points out that they have writers, which is true. But even during the writer’s strike a few years ago, I love their shows. Hell, I think I might have loved the shows even more during that period because you got to see some jokes that flopped and some segments that didn’t work well. Even in failures, these guys are hilarious. Interviews on their shows aren’t like those on those other nightly interview shows on other networks. These two actually ask questions that are pertinent to the world, about things that actually matter. I think that Jon more so is known for this, but Stephen does it well during his parodies.

  And, I suppose, to be truthful I should share that I think they’re both super hot and I would probably lick, I dunno, caramel sauce off their faces or something… because that’s not creepy at all. But see, I think they’re hot not only because they’re both dashingly handsome but because of the things that they stand up for, because of the awareness they raise on issues, and because of their use of humor in doing it.

  And I might be kind of in love with Stephen, partially because this quote by him gives me strength:

  “Don’t be bitter. Everybody suffers. If you can accept your suffering then you will understand other people better. Be grateful for pain. Love life.”

At the beginning of my adult health journey, I honestly didn’t know that much about my illness. I had started to, as a result of this blog. But I wasn’t to the point that I could honestly say I understood the medications and how they were supposed to help me. I was content to let my doctors tell me what to do – after all, they have to know my body better than me with all their education and experience.

Which is absolutely the worst possible thing you could do.

Whenever I speak with someone who has been recently diagnosed with any form of autoimmune arthritis, my first suggestion is that they educate themselves as much as possible on their particular disease and the available treatments.

It’s not just because it’s a smart idea though.

My first rheumatologist was based in Milwaukee, not too far from where I was living when I started seeing her. Initially, she wanted to put me on Plaquenil. I made the right decision, and went home to research the medication. It wasn’t until I moved to Madison, about an hour and a half away, that I decided I would try the medication. I also got a referral to a rheumatologist in town so that I wouldn’t have to take time off school and work to do labs and go to appointments.

This next rheumatologist was less… understanding. Even the nursing staff and receptionist there were grumpy all the time. But most importantly, he wanted to be in control. He didn’t explain side effects to me and blew off my concerns. My personality is one where I don’t necessarily like to make waves, but even when I was calling in horrible pain I got no real answers.

When I was on MTX and was experiencing side effects, he lowered the dose and had me break the pills up during the course of the day. He didn’t recommend switching to the shots, which most doctors would have done based on the symptoms I was having. He would not give me anything but ibuprofen for pain. He wouldn’t tell me the plans for labs or anything. It got to the point where I was satisfied taking the medications and just not seeing him.

My wish came true close to a year after seeing him initially when my appointment was cancelled – an appointment that, because of my job and school life I had to take a whole day off work to make. There was really no care for the fact that my schedule was being messed with.

For me, that was the straw that broke the camel’s back. I couldn’t call the office and get an answer for anything within a week. I was constantly being passed around and being told incorrect things. On top of that, in getting my medical records I found out that he actually didn’t listen to a word I said. There were so many mistakes I can’t even go over them.

I learned the hard way that I needed to take control of my health and treatment. My new rheumatologist and I make decisions together now, including my upcoming switch from Humira to Enbrel. I wish that I had been able to put my foot down more.