There are SO MANY new things to tell you about and links to share.
Shout out to the younger adults dealing with chronic illness and pain! Here are 15 things no one tells you about chronic pain as a 20-something. #7 is my favorite because bunnies, duh. And navigating college while sick? UGH.
And as a woman? It sucks.
Oh hey, and juvenile arthritis is getting more and more defined. Speaking of JA, did you know Miss Teen Minnesota has it? And so does Miss Tennessee! And did you hear about this uveitis fighter in the UK? Have you seen this letter to healthy people?
Here are 17 things only people with autoimmune diseases understand (I'd add most chronic illness, especially as SJIA/Still's is autoinflammatory). I love #4 though. I would apply that same caveat to 29 things only someone with RA would understand. And hey, while you're at it, check out the results from the Early Symptoms of Autoimmune Arthritis study and AARDA's recent study on fatigue.
Speaking of autoimmune illnesses, have you ever wondered why the majority of sufferers tend to be women? It may be because women's immune system genes operate differently than men's.
Having an invisible illness sucks because people can be really mean, doing things like calling us lazy without knowing what we've been going through. And even when they aren't, we often don't feel like we can answer simple questions like "how are you?" because of what we need to say. Sometimes even doctors don't believe we're sick. Here are some of the other things we're tired of hearing or dealing with... including that old saying, "We're all patients."
And that's on top of dealing with things likes morning stiffness (check out these tips to ease it) and driving three hours to the rheumatologist. We grieve past versions of ourselves and have to throw out our fancy things in exchange for things that are more easily used.
Let's talk a little bit about disability services and issues, like why the ADA is beautiful... or the slightly more scary ways to protect yourself. We can also see the very real effect the ADA has on lives all over.
On a similar note, Congress recently passed a bill requiring hospitals to disclose when the patient hasn't been admitted but instead is under observation. This change could save patients TONS of money.
I met with my dietitian the other day and ugh. I need to start getting more into exercise but I'm not sure where to start, because I constantly get too excited and overdo it. Maybe I need to look at these questions and do some soul searching.
If you're heading to the emergency room and have chronic pain, take a look at these awesome pointers. I usually do Urgent Care over the ER since we live right by a UC spot, but I think this can still apply there. We're often treated like drug addicts, so watch out for that too.
A lot of people in health care need reminders about how harmful slurs and putdowns are.
Part of the stigma associated with mental illness is that things like depression make you this black hole of a person. In reality, you're still you, but just dealing with really heavy things. I've had other patient advocates sadly call me out about how I can still do great things despite depression, as if I'm maybe not depressed. THIS is how.
Anxiety is also a biggie for those of us with physical illnesses.
Love someone dealing with a mental illness? Check out these ways to be an ally. You may also want to share the free Crisis Text Line with them too. If your loved one deals with PTSD, check out this post.
Interested in more sciencey stuff on mental illness? Check out this study on the role the brain plays in stress-induced anxiety.
Bottom line? We HAVE to change how we talk about mental illness. And being positive all the time isn't going to help.
Do you talk to yourself a lot? You're a genius! No, seriously!
In drug news, there could soon be a drug that targets cells directly responsible for cartilage damage! There is also research going on into biofilms and their role in lupus. New rare disease treatments should be coming down the pipeline too, though that may take a while. Stem cell treatments for people with MS are hella effective at least three years out.
You may want to take a look at these cool sleep products. The spoon me pillow was practically made for us.
Do you have an MRI coming up? The Malleable Mom recently did and, to be even cooler, she wrote up tips on how to ace yours. Speaking of scans, there's a new brain scan that can see pain!
Did you see that Cyndi Lauper has psoriasis and is on a biologic? And did you know Elvis would likely now be considered a fibromyalgia patient? Noah Syndergaard of the New York Mets is a very tall starting pitcher and he's raising awareness of Sjorgren's Syndrome.
Yelp has long been known to house reviews, but now they're adding a lot more as far as the healthcare world goes. Patient feedback is critical to change, so don't stop there! Contact patient services/relations with your local health care group if you're having a negative or super amazing experience. Get involved in advocacy.
One thing that ends up being a barrier to care is transportation. It can cost a ton and not really be helpful in that the patients end up waiting around forever. In Nairobi, oddly enough, disabled transport is kind of awesome.
If you have a fitbit, check out this RoadID that can fit right onto your wristband!
The FDA just approved the first printed drug. That's right! You can get a seizure medication printed in 3D! (There's also this cool smart watch that can detect seizures) Watch out for pharmacy benefit managers!
There's some pretty cool new biomaterial that may change how we handle crappy bones.
Did you hear that birth control pills can prevent endometrial cancer??
Thanks to electrical stimulators in their spines, some paralyzed patients have begun standing again!
Check out this video and try not to tear up:
Jehovah's Witnesses are changing medicine. Check it out!
On behalf of the #MedX community, I want to ask you to sign a petition eliminating the restriction of access to prosthetic limbs.
And finally, since you've made it through all of this, check out these cute animals and their 3D printed helpers!
Oh and don't forget to join me on my MedX journey Sept 24-27! I'll be live tweeting the whole time so hit me up @kirstie_schultz, catch the live streams at the Medicine X website, and join in the conversations using the tag #MedX.