Look at that sky, life’s begun
Nights are warm and the days are young –DB
Recently published for RheumatoidArthritis.net:
Twenty-two years is a long time. It’s especially long to live with chronic pain and illness. But I can still remember my pre-pain life.
“Being sick isn’t a fashion accessory.” –Kara Nesvig
Many people in the RA/chronic illness/chronic pain communities are up in arms right now over Kimhēkim’s latest runway show during Paris Fashion Week–where leggy models traipsed up and down the runway sporting minimalist “SICK” T-shirts and IV bags. So…they’re gorgeous models who happen to be “sick” yet can still strut their stuff and look “cool” while doing it? What exactly is the message here? Is it supposed to be funny? Quirky? I don’t see the humor in it.
Since when did “sickness” become a fashion statement?
I’m still trying to figure out how I feel about this. Some immediate reactions include: disgust, disappointment, surprise, anger, frustration, and irritation. It seems like “sickness” is being made into some weird sort of gimmick or caricature, therefore demeaning and disrespecting the real lives of those of us who struggle with illness on a daily basis. I’ve been SICK with rheumatoid arthritis (RA) for 22 years, and I’ve never once thought it was “cool” or anything close to it. It’s been a nightmare.
The following links are a couple of articles about this controversy, if you want to read more:
Teen Vogue — “Kimhēkim is Being Called Out on Instagram for Using IV Bags as an Accessory”
The Independent — “Kimhēkim: Fashion Brand Criticised for Using IV Drips in Runway Show”
(PART 2)
Exciting news! I’m partnering with Pfizer to launch a photo-essay series on Arthritis.com on what it’s like living with rheumatoid arthritis (RA). In each photo of the series, I want to help lift the veil of confusion and misconception that often conceals the truth of RA by making the illness a bit more understandable. In all of its pain, struggle, grief and frustration, RA is worth being seen and can even impart lessons of hope and beauty.
Exposing RA Through Photography, Part 1 – “Meet Angela”
Exposing RA Through Photography, Part 2 – “The Inspiration”
I’m looking forward to sharing this journey with you!
This July marks my 21st year of living with rheumatoid arthritis (RA). I was diagnosed with this painful, debilitating autoimmune disease at age 18, right after graduating from high school. It was a terrifying and devastating blow, and I remember waking up every morning wishing that the pain and disease would just leave me alone and go away. Sadly, it didn’t go away and it never has, even for a temporary period of remission. Also since those first days of diagnosis and wishing the illness away, I desperately wished for a cure—or something to let me get back to being a healthy and active teenager, instead of someone who could barely get dressed or wash her hair on her own.
Today, over 20 years later, I’m still wishing for a cure for RA, and in the meantime I’m hoping for the development of better and more effective medications and treatments to help ease my pain and stop joint damage. Ultimately, that’s what all of us RA patients want and need, and we need it urgently. This need and the realization of its importance in the treatment and hopefully one day cure and prevention of the disease is what has finally made me begin to get involved with clinical trials.
The “opioid crisis” is something that affects my life every single day, as it does for many other chronic illness patients I know. Here’s a recent article I wrote for RheumatoidArthritis.net about this issue once again: “Just Add Exercise?”
Sadly, with all of the misinformation out there regarding opioid medications for chronic illness patients (well, any patients), I know I will continue writing about this subject. So many patients who take and need these medications are suffering great harm due to the continually increased restrictions on them. And these are patients who take opioids responsibly, safely, as-prescribed, and under the care of a physician (such as myself).
STOP THE STIGMA: chronic pain patients are NOT addicts!
Here’s my latest article for RheumatoidArthritis.net about an excellent book I recently read, “Dreamland: The True Tale of America’s Opiate Epidemic” by journalist Sam Quinones.
“Dreamland: RA & The Opiate Epidemic”
The book is a fascinating and eye-opening account of the current “opioid crisis” and basically the mess that our country is in right now regarding the shockingly high number of people addicted and overdosing on opiate drugs. Quinones, a former reporter for the L.A. Times, meticulously explains the origins of the crisis, including the “pill mills” (pain clinics) of the 1990s, the explosion of OxyContin onto the market also in the ’90s, and the rapid rise of black tar heroin trafficking from basically one small region of Mexico–the state of Nayarit, which is on Mexico’s western coast.
Even though the book deals with a lot of serious and heavy material, it’s definitely worth reading. And it’s a page-turner, which surprised me. For a rather long and dense non-fiction book, I found myself flying through it. I’ve also been recommending it to everyone, even those who don’t personally have a chronic illness or suffer from chronic pain. There’s so much sensationalist media coverage of the “opioid crisis/epidemic” right now that it’s difficult to know and understand what the real facts are. Sam Quinones’ “Dreamland” is a fantastic place to start, I think.
And please, let me know what you think of my article and the book if/when you read it!
Hello everyone!
I’m now a CureClick Ambassador, which means I get information about studies and clinical trials for RA (and other diseases). I hope to help find participants for the studies by sharing them on my blog and social media pages. As many of you with RA know, continued research, development, and approval of new drugs and treatments for RA (and other diseases) is desperately needed for the patients who suffer from chronic illnesses. As drugs fail for certain patients or become ineffective over time, we need to have more options. Clinical trials, and participants in these studies, are therefore crucial in the development and approval of new drugs.
So! I just found out about a rheumatoid arthritis study/clinical trial that needs participants. If you have RA, click here for more info and to see if you qualify:
Please consider participating! All of your “rheummates” need you. :)
Thank you!
Angela
This is happening tonight! Very soon, actually. Join us on Twitter in about 30 minutes if you can! We’ll be chatting about making decisions about treatments, preparing for doctor appointments, and getting involved in healthcare policy work.
My Twitter handle is @aclundberg (if you don’t already know!). See you online soon!
Inflamed: Living with Rheumatoid Arthritis 