Q:What do you love most in the whole world?
Oh my goodness, what a question! I gave this a lot of thought…
I love most that I’ve found ways to enjoy life. I’ve never really known what that’s like before, both before and after I got sick. I love my life more than I hate my pain…most days.
Maybe that sounds really cheesy or abstract (or like a load of BS, and some days it might be), but it’s true. We have a saying here at FSU that we’re “living the dream!" and for the first time ever in my life, I feel like that’s true. I feel like I’m living the dream this year.
Living the dream and telling arthritis to kiss my ass at the same damn time~
Q:How do you respond when someone asks you how you are? It's just so hard to lie and say I'm fine or be honest without being a downer.
It depends on who is asking and the context in which they are asking. I tend not to tell new people right away, though sometimes this is unavoidable between my physical limitations and social media. 9/10 times I’m not going to offer up the fact that I am spending any moment of free time resting in my car between classes or that I had to uncurl my claw-like hands for the past week.
Usually if I don’t want to lie or can’t fake it, I say “Hanging in there as always. How about you?” and pretty quickly like to turn the conversation back to the other person. It’s not a lie—I’m always hanging in there and I know I’m pretty tough, but it’s also not “fine” or “good.”
I don’t usually lie with close friends, but I also don’t share much detail unless I’m at crisis-level (not often). I leave it at “I’m flaring” or “struggling” and they know what that means.
I find it more exhausting to talk about it, honestly, on a day-to-day basis than I do to lie about it.
What about you? I know it can be difficult to navigate the social aspect of living with a chronic disease. I wish I had a better answer for you.
PSA: Melatonin Can WORSEN Autoimmune Disease Symptoms/Inflammation
Last week I picked up some Melatonin in hopes of relying less on prescription sleep medication. Doctors gave me the okay to try it. I took it Saturday, Sunday, Monday, and Tuesday night. By Sunday night, I was 99% bed-bound. Monday was miserable—I spent the entire day in bed. Tuesday was miserable and I slept all but one hour in bed. So last night I decided not to take it and instead take my normal sleep medication (which happens to be a muscle relaxer) since my muscles were so badly inflamed.
And I woke up today still feeling shitty, but significantly better. I was able to function through my bio lab. I was able to shower. I could open the fridge and lift a pitcher of water without horrible pain.
So tonight, I went to take melatonin and right as I picked up the bottle it hit me: could this be what is triggering a flare? It is the only variable that’s changed in the past week. A quick google search confirmed that lo and behold, melatonin is known for its tendency to stimulate/increase inflammation and worsen autoimmune symptoms!
In a 2007 issue of the British Journal of Clinical Pharmacology, a study published demonstrated that rheumatoid arthritis worsened in participants who took melatonin. This study supported the results of other studies, which found that melatonin is proinflammatory, meaning it can stimulate the release of inflammatory cytokines.
I will say I’m pretty disappointed. It was working so well in terms of getting me to sleep through the night.
So yeah. PSA: if you incorporate melatonin into your med routine and find yourself absolutely miserable, consider stopping it to see what happens. Talk to your doctor and read the research.
Have any of you experienced this as well?
Chronic Illness Problems 01/11/14: The Human Barometer!
- Knowing what the weather is going to be like before you even get out of bed in the morning
- Who needs the weather channel when you have arthritic joints or an autoimmune disease?!
Laura’s Legacy One Year Later: “Because Life With Still’s Can Still Be Life”
This time last year, I was pulling late nights studying for final exams. I was failing classes, not doing well, and had an incredible support system getting me through those late nights—in particular, I had a friend, Laura, who kept me company from across the globe. She was my painsomnia partner whose strength and determination fueled mine when I was running close to empty. She was the first 20-something with Still’s Disease I connected with and her blog was the first one I’d found after being diagnosed.
This time last year, Laura was struggling. She’d been in and out of the hospital while planning both a wedding and a stem cell transplant. It was early morning her time, and she was talking me through some extremely alarming symptoms—she knew something was wrong. And so did I when she stopped tweeting/texting/etc shortly after describing her symptoms. It was no more than 12 hours of deafening silence before we all just felt in our hearts what had happened. The morning after I’d last heard from her, I remember waking up extremely early, bolting upright in bed, and just knowing. I messaged Kirsten, whom I barely knew at the time, and posed the question.
We just knew. Still’s Disease had claimed Laura’s life—a life she fought valiantly for up until the very end.
It’s a year to the day, today. There is an emptiness in our little group of Still’s Disease ladies that is still palpable. She lived with grace and fought with every fiber of her being. I wish I had words that could even begin to describe the strength she inspired in me, the grace she showed me how to have by example alone when I was lacking it, and the wonderful friendship she gave to me—it was her death that brought Kirsten and I together.
It’s 11pm and these words feel fragmented, falling short of capturing the essence of her spirit and legacy in a few measly paragraphs. I think of her when I see butterflies in my backyard or patio, and I know she’s free of the chains arthritis placed on her. I am reminded of Laura’s impact on our community when my rheumatologist pulls up her blog as a reference.
A year later, Laura is close to my heart, still very much on my mind.
Send a prayer, a positive though, a reblog—whatever—for Laura and her family today. You can leave a kind word on her memorial facebook page for her family to read.
Remember why we blog, tweet, reblog, speak, and get up every day to fight for an ounce of awareness of these diseases. In my weak moments of advocacy—when I am burnt out and bitter—I think of Laura, and am always able to keep going.
Even in death, she is a pillar of strength, inspiration, and perseverance. We should all be so lucky to leave behind the kind of legacy she left for us.
Love and spoons,
Make sure to place your Cure Rheumatoid Arthritis bracelet orders before December 17th in order to have them in time for Christmas!
If you’re looking for a simple way to spread some awareness and give back this holiday season, considering buying a Cure Rheumatoid Arthritis awareness bracelet. $5 each and proceeds are being donated to the Arthritis National Research Foundation in January 2014! Choose from two different styles.
Make sure to place your order before December 17, 2013, in order to receive your order in time for Christmas.
- To learn more about why we support the ANRF, about the bracelets, and to order yours: head to the Chronic Curve webstore.
- Questions/comments/feedback? Email us: firstname.lastname@example.org
Buy a Bracelet, Support Arthritis Awareness + Arthritis National Research Foundation!
They’re baaaack! And just in time for World Arthritis Day! It’s taken quite some time, but you can finally purchase Cure Rheumatoid Arthritis awareness bracelets again! Now in two choices:
- Purple and blue Cure Rheumatoid Arthritis bracelet
- Two-toned blue Cure Rheumatoid Arthritis bracelet
Both are $5 and half the proceeds will be donated to the Arthritis National Research Foundation (the other half go directly to manufacturing costs—I do not profit a single cent from these bracelets).
We will be making our first donation to ANRF on January 1st, 2014! Let’s see how much we can raise in the next 80 days!
EDIT: No UK or Canadian orders for the next 24 hours. We’re updating shipping costs (which is built into the $5 for US orders), so please keep that in mind until I update again
World Arthritis Day: October 12, 2013
October 12, 2013 is World Arthritis Day!
Supported by the European League Against Rheumatism (EULAR) and Arthritis and Rheumatism International (ARI), World Arthritis Day brings together international organizations, patients, caregivers, and supporters to raise awareness of the over 200 arthritic conditions, systemic/autoimmune arthritis included.
There are so many myths and stigmas associated with arthritis as a whole—this day gives us an opportunity to raise awareness and let others know that it is not just arthritis.
Get involved and learn more here, and don’t forget to publish your own blogs, reblog, and retweet!
Looking for an arthritis-related organization to support? Check out this resource page for a list of great organizations working towards a better understanding of, a cure for, and better treatments for rheumatological diseases. Reblog/retweet with more you’d like to see supported/added.
Did you know that the economic cost of chronic pain in US is $600 billion, more than cost of cancer, heart disease, and diabetes combined.