I’ve been listening to Carolina Liar’s song, “Beautiful World” a lot lately. Upon my first listen, I immediately connected with the opening lyrics and chorus and wondered if the lead singer could maybe be signing about someone with arthritis or chronic pain because the words he chose struck such a chord with me:
Here it comes in the morning
I’m just trying to forget
Keep it real, keep it simple
And somehow just get out of bed
And this city is endless
I’m as cold as its stone
Yeah this city is endless
And I’m, I’m walking alone
Sunlight creeps in between the curtains
Lose the sheets there’s no time for sleep
I lie, I pretend ‘til I’m almost certain
It’s a beautiful world
Let me rephrase that slightly. The words struck such a chord with me, except for the part about how “there’s no time for sleep.” I need my sleep and there is always time for it!
A little online detective work revealed that the song was actually inspired by the lead singer’s “friend who suffered from manic depression.” Singer Chad Wolf describes what his friend was going through. “Every day when the sun came up, it was constant anxiety – something he couldn’t deal with, yet here it comes every morning. It’s like watching the news every day. Sometimes you have to lie to yourself and pretend that the world is a beautiful place, when what lies on the other side is just madness.”
When you wake up tomorrow morning, think about all the things you are grateful for and know that no matter how the day goes, we live in a beautiful world. Sometimes we just have to work a little harder to see that.
I encourage you to listen to the song. Use the comments to let me know if it strikes a chord with you. No musical pun intended. 🙂
I think we’d all like the world to become a more arthritis-friendly place. To that end, I came up with a list of nine things that could set that idea in motion this year.
Our own reserved parking spot in front of our Rheumatologist’s office.
Prizes hidden in prescription pill bottles. If Cracker Jack could do it with popcorn, why can’t Pfizer do it with Celebrex?
Seats on rides at theme parks should have more cushion. Most notably, the Matterhorn at Disneyland.
A rewards program for Enbrel patients. Buy 11 months of Enbrel, get one month free. After all, at $350(ish) a month on COBRA, the makers of Enbrel are doing better than most drug lords in Columbia.
To be able to earn points for each prescription ordered through the local pharmacy — points that could be used to purchase an Amgen beach towel or an Arthritis Foundation wind breaker.
I’d like better food at the Dining Hall at Camp Esperanza , a camp in Big Bear, CA for kids who have arthritis. Plus, I’d like to witness better pranks. Shaving cream is so five years ago and I know the kids can be cleverer.
I know all women agree with this, but especially those of you with arthritis — I want more women’s shoes that look cute, are uber-comfy and not frumpy.
Don’t you hate it when people give us dirty looks after we park in a handicap space with our placards? I want a special badge that says: “I have arthritis, you bastard, so piss off!”
On more serious note, I’d like to see more arthritis awareness raised and hear fewer people saying, “But you don’t look sick.”
Okay, now it is your turn. Add your wish list via the comments!
Below is a portion of an email from Chief Public Policy Officer at the Arthritis Foundation National Office in Washington DC, Amy Melnick. The email was written in response to Larry and Juanita Stuart’s story that was highlighted on Barak Obama’s 30-minute primetime special:
Earlier this week, we sent the attached letter to now President-Elect Barack Obama. The Arthritis Foundation will be working with the new Administration, and with the new Congress, on policies and legislation that will expand access to comprehensive health care to include preventive care, self-management programs, surgical interventions, rehabilitation services, and prescription medications for people with arthritis. We must work together, and with other like-minded organizations, at improving the care for people with arthritis. It truly was a watershed moment for people with arthritis to be featured on national television by a candidate running for our nation’s highest office. We plan on using this opportunity with President-Elect Obama and his new Administration to engage in substantive policy and advocacy work on behalf of the 46 million people, including nearly 300,000 children with arthritis.
Do you think it will be possible to find a cure for arthritis in my lifetime? My answer: Yes we can!
Read the letter that the Arthritis Foundation sent to President-Elect Barack Obama
Over the weekend, I stumbled across a great story about a young man named Joshua Sandoval who had been diagnosed with an invisible disease in grade school and while he was vigilant about managing his illness, he did not want to talk about it with anyone. Around the 10-year anniversary of his diagnosis, he decided to mark it by getting a tattoo that signified two important aspects of who he is: a writer and a diabetic.
As someone who suffers from Rheumatoid Arthritis, there are a few noteworthy items in his story that I absolutely related to.
Keeping the illness private for a period of time. Check. Having to get used to stabbing myself with a needle. Check. Feeling abnormal. Check.
Joshua’s tattoo is a really amazing way of expressing something that for many years, went unspoken. It’s bold, artistic, and will likely prompt questions from friends and curious onlookers. He is basically inviting strangers to ask him about his diabetes, which is a great way to raise awareness.
For now, this blog is sort of my version of Joshua’s symbolic tattoo. The blog gets me thinking and talking about my arthritis on a more frequent basis. And every time I sit down to write a post, I make progress towards acceptance.
I’ll be attending the national JA (Juvenile Arthritis) conference from July 10th through July 13th in Costa Mesa, CA. In addition to the JA sessions for parents, they also have a Young Adult track, which I will be participating in. Energy-permitting, I hope to make a few blog posts over the course of those four days. I’ll definitely be sharing the information I gathered, in addition to my own thoughts upon my return. The two sessions that I am most looking forward to? Art & Rheumatic Disease, plus Pregnancy & Arthritis. Stay tuned, my friends!
If you are attending JA, please feel free to share your conference impressions in the comments.