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 me up with a paying contract gig in the fall which helped immensely with those 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 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.
We all have them, right? For me, they sometimes occur several times a day. I’m talking about small incidents that sprout into a slap across the face that translates to, “You can’t do that, you dolt! You have an f’d up immune system.”
Yesterday, at lunch with co-workers, I couldn’t complete a seemingly simple task. I tried to cut off a piece of pizza with that server/spatula thingy (not a knife) and after what seemed like two long minutes (it was probably 15 seconds) of frustrated slicing with a dull object and no wrist strength, I finally gave up and asked my co-worker to finish what I started. I felt defeated.
Defeated! I realize this sounds completely ridiculous. But it’s inane times like these that I often get most frustrated with my arthritis. A day of 24/7 dull pain? No problem. Can’t separate a piece of pizza piece from the others? I become seriously annoyed.
I can’t be the only one who feels like that. Am I? Bueller?
During the holidays, I read about musician named Jason Crigler who suffered a brain hemorrhage that left him temporarily unable to speak or walk. He also had to teach himself how to play guitar again.
Don’t worry, I’m definitely not trying to compare arthritis to a brain hemorrhage, but there is something about this quote from Crigler that I think rings true for a lot of us arthritis warriors.
“I knew what to do; I just couldn’t physically do it,” he says. “It was painful, because my hands were so tensed up, like claws almost. I’m still working to get that open all the way. But I knew mentally what to do, and I could hear what to do. Physically doing it was the issue.”
Nothing is more frustrating than trying to do something as simple as say, open a can of soup, only to discover that either you simply can’t do it, or you can do it, but with great difficulty. If you haven’t had arthritis all your life, you can remember when opening a can of soup was not hard. But now it is, along with a lot of other things. We adapt and we get through it, but it still sucks. For me, the momentary frustration of not being able to do something that I believe I should be able to do with ease, does not go away. It’s always there. Sometimes I get teary. Sometimes I’m angry. Sometimes I just roll my eyes, as if to say to my arthritis, “I know what you are up to, but can you cut me some slack today?”
But I keep moving forward, and I remind myself that there are good days and bad days. Here’s to a year where we all strive to “keep moving forward.”
Read More on Jason Crigler [via NPR.com]
There was a documentary made about about Crigler’s miraculous recovery, which looks to be very inspiring. Check it out here.
Juliana Sadock Savino used to be a professional musician, but was forced into early retirement after a hand injury. Around the same time she was diagnosed with Fibromyalgia.
Juliana’s story is a beautiful illustration of how to cope with pizazz. She found a regular activity that lifts her mood, while also giving her a bit of a musical fix that has been missing since she had to basically give up playing the double bass. That is inspiring to me.
“There is the fun that comes with feeling free to make a complete fool of myself, one of the consolation prizes of middle-age,” she told me. “I dance for myself and for the fun of being in class. My doc says I am the only tap-dancing fibromyalgia patient he knows of. Do my feet hurt? Sometimes. But as Sammy Davis says in ‘Tap,’ I want to die with my taps on. Actually I’m living with them on.”
Watch the short video that tells Juliana’s story of coping with chronic pain by tap dancing — even while in line at the grocery store!
I also highly recommend checking out Matt Harding’s YouTube video, titled "Dancing" (which is mentioned in the NY Times blog post) if you have not already seen it. It’s simple, beautiful and powerful.
Being the variety junkie that I am, I have a few different activities that help me cope with my rheumatoid arthritis: physical activities (biking, swimming), blogging here, playing my clarinet on occasion. Next year, I am hoping to take up outrigger canoeing … if my body can handle it. Really anything that I can get excited about helps me cope, from watching "The Office" to listing to a great new song on the radio.
Do you have a regular activity that helps you cope with pain? Tell me about it in the comments.
Hey gang, apologies for my sporadic posting lately. It seems that after I came down with a virus in September that I have not been good about getting myself back on a regular posting schedule. I think it’s a combination of simply being quite busy and also feeling spent at the end of the day. I come home from working eight hours and just want to veg, but then, of course, feel bad about just vegging because there are twenty other things I “should” be doing. It’s not like someone is standing over me, wagging their finger saying, “Sheryl, you should be cleaning your kitchen.” It’s always my voice that just can’t seem to give myself a break. Argh, I think I will be working on managing (and talking back to) that voice for the rest of my life. I digress…
The good news is, I’m back in action and committed to resuming my regular postings. Please feel free to join the discussion and comment. I’d love to hear from you!
Over at the Ouch! section of the BBC website, Andre Jordan creates weekly disabled-themed doodles. I find them kind of fun and wanted to share them with you. This one in particular is a good way to kick off Invisible Illness Awareness Week:
Doodles by Andrew Jordan
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.
Have you used creative methods to inform your friends and family of your chronic disease? Tells us about it in the comments.
Read Joshua Sandoval’s story here
I have trouble sitting down to relax because my endless to-do list is always tugging on my sleeve. I think this is partially due to my genes. I also believe that the Fatigue Factor contributes greatly to my obsession with getting stuff done. See, I have a hard time accepting fatigue as part of my Rheumatoid Arthritis [this will likely be dissected in an upcoming post]. Accept it or not, I experience fatigue on a fairly regular basis. Instead of coping like someone who has had arthritis for 11 years, I am often stubborn and pretend like the word “fatigue” does not exist. This is not a good idea. 🙂
One of the keys to getting things done is locating that delicate balance between figuring out what must get done today and what can be done tomorrow. It’s best for an arthritis warrior to asses their to-do list on a regular basis so that it remains manageable.
A simple little web app called Now Do This makes creating and executing a to-do list a whole lot easier. Here’s what I like about it:
- You can’t look ahead at other tasks, thus preventing an opportunity to be overwhelmed by your list.
- This tool is not meant to hold your entire to-do list for the year. But it is a lovely place to house a few important tasks that must get done in a relatively short amount of time.
- Multi-tasking is not an option. Focus on one task at a time, then move to the next item. Besides, multi-tasking never works as well as I’d like it to.
When you complete the list, the words “all done” appear.
Guaranteed to make you feel accomplished whether you walked a 5K or remembered to buy kitty litter.
How do you manage your to-do list? Share your stories and tips in the comments!
Now Do This [via Zen Habits]
I could think of a few other choice words besides “bothered.” 🙂