Q:Just wanted to share a great story I live on the second floor of an apartment building and my neighbor who I've only met in passing just brought my delivery of biologic meds from the front door to my apt door, not knowing how messed up my knees have been and that that climbing those stairs for my temperature sensitive package was my Mount Everest today. What he did as an afterthought nearly brought tears to my eyes.
This is beautiful! A little act of kindness can change someone’s entire perspective and make someone’s whole day. You deserved it, anon.
Pay it forward!
Q:Can I give you a solution to chronic pain. Ive helped many. One lady came to me and had been in pain in both hips for 14 years from a car wreck. Her pain level was 10 on a scale of 1 to 10, 2 min later her pain level was 3. I helped her lower both hips to a 3. Ive seen happen for 100's of people.
Well, in a short answer, no. No, you cannot give me a solution to chronic pain.
I mean this with respect and I say this not to attack or insult you, but hopefully to educate you. I get tons of inbox questions of this same nature on a weekly basis. I’m talking 5-10 a week—everything from apple cider vinegar to prayer to turmeric and psychic energy healing.
I do not have an injury that has not or will not heal. I do not have reversible tissue or bone damage. No amount of physical or occupational therapy will completely alleviate my chronic pain. And here’s why:
I have multiple chronic, incurable diseases of the immune system that cause very serious—often life threatening—systemic inflammation. I have “failed” many of the few medications out there and remission is not likely for me personally at this point in time.
And while there are things to help alleviate some of the inflammation and chronic pain that comes with that inflammation—there is no end all, be all solution. There is no cure.
It’s extremely frustrating to receive messages like these. Suggestions are one thing, but solutions? Cures?
I changed my diet radically: no sugar, no wheat, limited dairy. I take a whole host of supplements. I take low dose chemotherapeutic medications and inject myself nightly with very strong immunosuppressants. I exercise. I rest. I take epsom salt baths. I drink 2-4L of water a day. I don’t smoke and I do not drink much. I’ve tried acupuncture, meditation, visualization, D all of the above.
I devote most of my day to managing my pain and taking care of myself, and you know what? I still had a tiny meltdown in my car today from being in so much pain and having a huge flareup these past few weeks.
Pain is a part of me. I hate it, but I am also at a point where I accept its presence in my life. I will always work to minimize it, to mask it, to improve my quality of life, but messages like these? They are infuriating. They are invalidating and they minimize the struggle that millions of other patients like myself go through.
If you want to find a solution, help us find a cure. We need research not just into treatment, but into etiology—help us find the cause, because we will never find a cure if we do not understand disease cause and prevention.
Chronic Curve’s Top 13 Posts of 2013!
*If any of you know the original photo source for this image, please send it my way!
- Not So Simple: Chronic Illness, Chronic Pain, and Sleep
- But You Don’t Look Sick? The Face of Chronic Disease
- Dr. Oz and Autoimmune Arthritis: Diet and Supplements Are Not a Cure
- What Are Your Nails Telling Your Rheumatologist or Gastroenterologist?
- Keeping Your Head Above: It’s Not Always Pretty
- Staying Positive With a Chronic Disease
- The Problem With Pain Pills: A Letter to Mr. Barry Meier and the New York Times
- The Starting Line: My Journey Back to Running Despite Arthritis and Chronic Pain
- Coping With Arthritis: Tips for Pain, Stiffness, and Swelling in the Hands/Wrists
- Quiet Moments With Chronic Pain
- College and Chronic Illness: 19 Tips to Study Strong and Fight the [Brain] Fog.
- Let People Care: How Stanford Medicine X Taught Me Not to Fear My Vulnerability
- Patient NeXt at Stanford MedX: The New Patient — video of the panel at MedX that explored the evolution of patient relationships, the role of technology, and patient empowerment
According to Google Analytics, these are the top 13 posts of 2013 for Chroniccurve.com! 2013 was an incredible year of growth for Chronic Curve and I am so exited to see what 2014 brings. Thank you for the kind messages, the stories, the emails, the inspiration, and as always, thank you for reading. Take a look back at the top 12 posts of 2012 here.
Stay tuned for a year in review-themed post tomorrow and a special one on the 1st. I hope all of you have a happy New Year!
What were your top blog posts of 2013?
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: email@example.com
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
Live World Autoimmune Arthritis Day Chat in 30 Minutes!
The chat has been moved to the WAAD Facebook Page and will go up at 10am EST, as the live site has crashed! Come chat with me about all things self love and self esteem.
On the Radar for May Awareness Events! Get Involved, Get Educated, Get Empowered!
I’m baaack! Final exams are over, I moved out of my horrible apartment complex, and am home in south Florida for a little while to regroup, see doctors, and focus on May advocacy events.
Speaking of advocacy events, these should be on your radar this month:
- World Autoimmune Arthritis Day! May 20, 2013— second annual WAAD! This time, it’s going to be twice the size of last year’s event! I will be giving a presentation on self esteem, self love, and autoimmune arthritis. More to come about how to register (it’s completely free!), what you can expect, and how to attend from the comfort of your couch!* Not sure what qualifies as Autoimmune Arthritis? Learn more here!
- For the Love of Laura. If you don’t already know, there has been a facebook page established in Laura’s (of Still’s Life.com— you can read more about her here) memory. On May 10th, there will be a 10 minute memorial/moment of silence and Laura’s family asks that you attend the page for the event. Please stop by and share some love, a kind story, or little bit about how Laura’s blog/story reached you. More details to come.
- Arthritis Awareness Month— this year’s theme is I Am the Face of Arthritis. More info soon about how to participate and what you can expect here on Chronic Curve to celebrate the month.
- World Lupus Day— May 10th, 2013. Don’t forget to sign the awareness pledge!
- World Ankylosing Spondylitis Day— May 4, 2013! How many of you Walked Your AS off in celebration this year?
Check back shortly for more event pages this week.