2011 was a tough year. Good thing I like things that are tough.
I spent the beginning of last year untangling myself from a long term relationship, and then finding my footing after being laid off from a job I really liked and was good at. I spent the spring putting myself out there when it came to dating and job interviews. I explored what I wanted out of a job, a guy and life. I think I made progress.
Some 2011 highlights: I went to Germany with a high school friend. In the middle of a random weekday afternoon, I laid on the grass of an elementary school near my house and smiled, knowing many other people were checking their blackberries or creating PowerPoints in that same moment. I went whitewater rafting with my brother. I had a blast working at ComicCon with the best of friends. I volunteered at the JA Conference in Washington DC and met a bunch of really cool young adults with arthritis. I met an interesting, funny, wicked smart guy at the end of the year. A great friend hooked meshe up with a paying contract gig in the fall which helped immensely with those pesky COBRA payments. I was terrible at seeing my Rheumie on a regular basis, but he gave me a kick in the pants in December and I’m determined to be better about that.
I’d like think I came out the other side a better person. Actually, I know I am.
It’s now late January 2012 and I find myself needing to reflect a bit on last year before really diving into this year. Hmm, diving doesn’t really feel like the right metaphor. Cannonballing into this year seems more appropriate and certainly more fun. We’ll go with that.
I’m not sure what about this day has me feeling sentimental, but I’m rolling with it and allowing the words bounce off my fingers. Thanks for listening.
Mostly, what I wanted to say is this: ArthritisFriend is back, baby! Please check here often for posts that will deliver health and wellness tips, cool gadget finds and an occasional reflective post about life on the RA highway.
“The best way out is always through.” -Robert Frost
I’m talking about the arthritis kind and the heart broken kind. Both have their way of knocking you on your butt at the most unexpected of times.
Last weekend I was in my car driving down to Orange County to visit my brother, with plenty of time on my hands to think. I thought about how, even if it was possible, I wouldn’t want anything to take my break-up pain away. The pain represents how invested I was in the relationship and how much I loved that guy. The pain is proof that something significant occurred over a lengthy period of time. It represents wonderful memories and a period of personal growth. Sure, it also symbolizes a broken relationship that no longer exists in its previous form… But I can deal with a little bit of pain, knowing how much I got out of the relationship.
And if I could have someone take away my arthritis pain? I’d pass on that, too. I know some of you must be thinking that I’ve gone completely bonkers. Perhaps that’s a little bit true, but let’s break it down.
Because of my arthritis, so many amazing things have entered into my life that I would not have experienced otherwise. I’ve met friends through a young adult support group that I can’t imagine not having in my life. I’ve gone to Washington DC to advocate for funding for arthritis research and experienced the satisfaction of participating, at a national level, in efforts to make the health care world a better place. I’ve met kids who have JA, Lupus and various other arthritis diseases and have been inspired by their ability to cope with the hardships that go along with having those challenges as a child. Just like in my relationship, I’ve seen and connected with people who have made a great impact on m life.
I choose to manage my pain by walking right through it. Sometimes I step on a piece of glass, often I narrowly avoid crushing a little flower that’s blooming in the middle nowhere, and sometimes I trip and fall, but I always get up. Of course, given my RA, the getting up takes a bit of effort, both literally and metaphorically.
Last week, my arthritis friend Jen H. sent me the video you see embedded below. Before I even watched it, I knew I’d be writing about it here. The title alone was enough to indicate to me that double amputee Aimee Mullins probably had some radical thoughts about living with a disability.
Aimee takes the topics of disability and adversity and masterfully spins them on their head. “We [people who face adversity] are changed, we are marked, of course, by a challenge, whether physically emotionally or both,” she says. “I’m going to suggest that this is a good thing.”
A good thing like a Martha Stewart good thing? Nope. Not even close. A good thing like your life could potentially be transformed if you can begin to believe that adversity should be embraced, rather than overcome. “There’s a difference in a medical condition and what someone might do with it,” she says in the talk.
Aimee was born without calf bones and had both legs amputated below the knee when she was an infant. She has essentially lived her whole life “researching” this topic. I want to ruminate more on the ideas she covers in her talk and then write more, but for now I’m going to post the video so you can take a look.
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 wanted to share something with you this morning. It is darn tough to keep up a blog! I’m disappointed that I haven’t posted much in the last few months, but I’m not gonna dwell on that. It’s time to put my arthritic digits to the keyboard and get writing again! With that, I am posting a quick note to let y’all know that I’m getting back into the swing of things. It feels good to say that. Look for a new post (or two?!) this week! As always, thanks for your support.
Plus, I wanted to give a special shout out to the new arthritis friends I made recently. You guys are the best.
For those who went to the site the last day or so, you may have noticed a major change in the look and feel of this site. No, arthritisfriend.com did not go through a site redesign. We were attacked by some punk hacker.
I’m not sure if I should be honored or offended.
My mom, who is a frequent visitor of my blog, was the first person to spot the abnormality. Thank you, mom! Then, I got a text from my brother last night while I was at my arthritis support group meeting letting me know that something had gone awry.
Luckily, a call to my server host tech support department allowed me to restore my site to its previous glory. Thank you, Stephen the Tech Guy, for such a quick turnaround!
Some memorable quotes from my conversation with tech support:
Stephen the Tech Guy: Wow, I haven’t seen this one yet.
Stephen the Tech Guy: Is your site controversial? Me: It’s about health and wellness.
And to the punk hacker who infiltrated my wee little blog: I hope you learned a little bit about arthritis while you were hacking into my site. And I hope, eventually, you learn a lot about karma.
I became aware of Chris Kirby a few months ago while browsing iTunes by searching “arthritis.” Low and behold, I stumbled across Chris’ “Arthritis Song” from his album “Chris Kirby on Rum & Religion.” I was immediately captivated after only sampling the 30 second preview. I promptly purchased the song and chills ran through my spine the first time I listened to the entire piece. Chris so eloquently and poetically expressed things I have felt about my arthritis, especially when I was first diagnosed 11 years ago.
Feeling like I had discovered something really special that I couldn’t wait to share with my arthritis friends, I immediately googled Chris and sent him a note, inquiring if he struggled with arthritis and if he would do an interview for my blog. Lucky for us, he said yes! The internet is an amazing thing!
It took me a ridiculously long time to write up this post. It was extremely important to me that I do musician Chris Kirby justice. He is a talented man, who shared details of his struggle with arthritis via his tune “Arthritis Song” and also with me via email. Today, I am grateful to be able to share his thoughts and introduce you to his music.
To read the lyrics of “Arthritis Song,” click here. A link to listen to the song appears at the end of the post. Following is my Q&A with Chris Kirby.
Q: What symptoms were you having that led you to see a doctor? A: One night at a gig, I blew out my hands playing guitar. I was trying out heavier strings. My hands just got very stiff all of a sudden and for a while afterwards I found it difficult to play. Then the tension seemed to spread to my wrists. I found my fingers going cold and numb often. I figured after a while of resting it would go away, but it didn’t, so I went to the doctor with this “chronic tension” mystery.
Q: When you were initially diagnosed with arthritis, what were some of the thoughts/fears/questions that ran through your mind? A: When my “Rheumatic Factor” came up positive, I thought – “Arthritis??? Will I be able to keep playing music? Is this as far as I get to go?” It was a lot to digest. I immediately started adapting my playing style to a more relaxed method. I had to get the “virtuoso” idea out of my head and focus on accompanying/complimenting my voice instead.
Q:Where do you seek/find support for what you are going through, esp. around the time you were seeing doctors for your symptoms?Continue reading →
There are many ways to deal with chronic arthritis pain. Today I choose to write about it in a very simple way, by composing a haiku. Yep, I said “haiku.” I blame the haiku idea on feeling generally quirky today.
Mission accomplished: I entertained myself. Bonus points if: I entertain you. Write your own chronic pain haiku in the comments. Let’s have some fun with this!
I ran across an interesting article about how gum disease might be linked to Rheumatoid Arthritis. A recent study concluded that when patients received treatment for their gum disease, their RA symptoms improved. From the article:
The study, published in the Journal of Periodontology, found treating gum disease was linked with reduced joint pain, fewer swollen joints and less morning stiffness in patients suffering from a severe form of rheumatoid arthritis.