Here are some cool links I’ve been hoarding:
Want to know more about Biosimilars? Check out this video featuring awesome Global Healthy Living Foundation peeps. You should also check out what you can do to help enact laws against step or fail first therapy. GHLF or CreakyJoints can totally help you out with that.
CJ is amazing. One of the things I love, besides the amazing people who work there, is how supportive of patients they are. Recently Megan Park announced she was living with RA – and partnering with CJ to make a difference.
On that note, did you know Ashley Olson has Lyme Disease?? The lead singer of Imagine Dragons has Ankylosing Spondylitis. Morgan Freeman, fellow fibro fighter, is totally for legalizing pot. Speaking of awesome people and pot, Snoop Dogg recently opened up about his daughter’s lupus battle.
Maybe you don’t want to read an article about RA and death. If not, don’t click here. And definitely don’t click here unless you’re up for reading a heartbreaking convo in which a sick kiddo tells her mom she’s ready to die.
Need cheering up? Check out this funny article about chronically tired people. Maybe ruminate on ways to tell regular tiredness from fatigue.
As someone who will likely be starting a family within the next five year (HOLY SHIT SNACKS YOU GUYS), this article on medication use during pregnancy was comforting. It’s not always a no-no.
Next time someone you know uses a handicapped spot illegally, maybe forward them this badass letter. Or this article. I love this piece on a judgmental old lady (mostly because they’re totally the people who give me side eye).
I really don’t know how I feel about this next piece. It feels a bit too inspiration porn-like honestly… but Briana Donis IS pretty cool. Speaking of cool kids, CHOP totally held prom for their patients!
While there has been a huge push towards electronic medical records (EMRs), the feds are a little concerned and are backing off a smudge. This could mean less distraction in the office because docs can often get lost or immersed in the EMR system… but could also mean waiting for better communication for many. Regina Holliday is one amazing person who advocates for more EMR use through art.
Sometimes I LOVE hearing that I look good. I’ll admit to taking pride in my appearance when I can… probably because I can’t always function enough to do so. Not all patients like this though. Maybe we should all stop being so focused on looks? Or, like this article suggests, let’s compliment each other on looks but acknowledge that they may not reflect how we feel.
Oh hey, while we’re at it, let’s not isolate sick kids okay? Disabled gets often get separated from their peers and it HURTS like a bitch. Well, that and then we’re screwed often by the time we get out of school. By the time we get jobs, we face a lot of issues both internally and in the workplace.
Sometimes we know we need to stay home or quit or whatever but society seems to sashay on in.
In happier news, there is some exciting research with potential new medications on the horizon. A new potential lupus drug would target b cell receptors. University of Queensland researchers think they may have found a way to reprogram the immune system via a vaccine (kinda). Perhaps the most exciting and amazing news is that the immune system has been found to be directly linked to the brain! The vessels that connect the two are, obviously, good at hiding or we would have known this by now. This could be HUGE for us.
Until these amazing things have real world application, come learn about lifestyle management. Enjoy rocking a swimsuit with your ostomy bag. Check into this chronic pain management implant. Work to get your doc involved in patient engagement and giving patients compliments – and REALLY LISTENING so we don’t end up with long diagnosis stories anymore. Live tweet your illness experience.