Category: medical monday

So much can go wrong when we’re interacting with anything involving our health. Doctors and health care systems are, sadly, not immune from making mistakes. This is something that we chronic patients have to understand in order to be fully engaged in our care.

Perhaps you went in with an abscess that a doctor saw as a pimple and laughed like like I have.

Perhaps you’ve shown up in an office green and obviously ill only to be dismissed.

We’ve all likely been there. It’s enough to leave you sick but now you’re upset with your care and your concerns are not being heard.

What do you do?

One thing that some people feel comfortable with would be to speak with another member of the staff where you receive care. Perhaps the doctor was the offender so you might want to talk to his nurse, or vice versa. You might even speak to the clinic manager, which is kind of like the head nurse in some systems, or the head doctor or dyad.

Another idea is to contact someone else in charge of clinic operations. There is often someone who works more of a 9-5 that helps coordinate maintenance and such, but can hear complaints as well. You can sometimes find this information, though it isn’t always readily available.

You can definitely go through patient relations. Depending on the size of the system you’re involved with, this could take a while if the offense isn’t super huge and egregious. There are sadly some systems that don’t necessarily care as much about one patient’s experience and so may not be helpful with this route.

One of the more popular things to do, though, is to contact the health care system via social media. This often gets a faster response even in slower systems because you’ve now made the complaint public. By doing that, you put pressure on the system to acknowledge the issue and work with you.

This route isn’t for the shy or reserved. Unfortunately it can take a bit of back and forth to really get help even here. However, as I said, the system is then under pressure to perform.

This can be true for insurance companies as well as we see here with Anna, fellow SJIA fighter and all around awesome person, trying to get access to Orencia.

The bottom line is that, in order to have your complaint heard and acted on, you have to be loud and assertive enough to do so.

Not sure that’s your thing? It might be worth analyzing why you think that. If it’s because you don’t feel you’re worth the fuss, please do yourself a huge favor and read up on self-care and self-love.

Starbucks has banned someone for kindly asking those without a handicapped placard to leave the handicapped spots alone. I get that this could be seen as harassment and loitering and so Starbucks may feel as though it’s a justifiable move. However, the fact that it doesn’t seem like they care that much about their disabled customers scares me. When I read this article, I was actually sitting in a wheelchair in the airport debating getting Starbucks… and quickly changed my mind.

At least I didn’t run into this cop.

Did you know that disabled people have worse unemployment rates than their ‘normal’ counterparts?

If you’re tired often, this Buzzfeed post may resonate with you.

Even if you don’t have multiple sclerosis, you likely can identify with the struggles Matt highlights in this article. While he focuses mainly on dealing with the SSA and having a cyclical disease, I think that there is truth in that being a barrier to so much that we do. We’re in this interesting place often where we don’t look sick but we’re not normal; we don’t need help all the time, but often get denied it when we need it; we’re looked at as freeloaders and not people frustrated that they can’t fit into today’s ideas of productivity (as misguided as they are).

Speaking of MS, check out this video where President Obama speaks about Michelle’s father and his MS.

Have you heard the terms step therapy or fail first a lot, but don’t know what it means? Prescription Process has a great and simple page to explain it here.

Autoadapt has created this badass swivel seat for cars that could change how some people with disabilities get around. How cool is that?

Nike came out recently with shoes that are great for people with motor impairment and who can’t do shoelaces. The price is basically what you expect from the company ($100+) but these shoes are getting great reviews.

With my recent trip to the Juvenile Arthritis Conference, it was stated over and over again that we are lucky to have biologics and more treatment options now than others have had in the past. On the other hand, those drugs are insanely expensive and can bankrupt families. Insurance is constantly changing and not covering things as well as before in some cases.

Also, if you love someone with anxiety, check out this post on what it’s like to live with it.

About 1 in 5, or 20%, of American adults have a disability. So many of us have invisible ones. It’s hard on every aspect of our lives to have something that no one can see, and yet we can at least pass for ‘normal’ when we can. People don’t believe us or on the other hand coddle us to feed their ego. The suggest things that can be very dangerous like homeopathy. We often have to change medications in rapid succession, and the realization that you can’t find something that works for you is so difficult emotionally to handle. We either tell everyone we see about our illness or we try to hide it, much like my guinea pigs do with injuries due to being prey animals. Either way we get weird reactions. We’re admonished for not being as active as we maybe once were and yet at the same time we’re treated like addicts when we try to control our pain. It gets to the point where we or our sweet loved ones are fighting others off like emotional wolves… or we spend all our time trying to educate them.

We have GOT to start treating disability rights as a mainstream thing. It’s about basic human rights, and we deserve those – visibly ill or not.

You guys should totally pick up this awesome shirt and donate towards Megan’s ride!

I wish that so many people weren’t mean about handicapped parking. Sometimes it seems to throw others off if you’re nice. I’ve noticed I don’t get as many pissy looks now that my hair is so short. Speaking of disabled things, I’m really not sure why therapy and service are both being used to describe this kangaroo. I thought you could only be one or the other.

Vermont just removed their philosophical exemptions for vaccines! You’ve probably heard by now that CVS is buying Target pharmacy. I’m a little concerned what this might mean for me, as Target is my go-to, but we’ll see what happens. Apparently RA has been linked to solar cycles?

Dude, badassery on crutches here and more in the form of like this cartwheeling turning into a split here.

Make sure you always stay engaged in your care. Push when you don’t think something is right. Don’t be afraid to say no or to get other opinions. It may just save you from pain – and worse.

If you use wheelchairs or other assistive devices, you may want to avoid using Uber. If you need accommodations at work and the like, you can check out this site on Accommodation Information by Limitation.

Singapore has a new card that will let those with chronic illnesses skip to the front of the line for the bathroom. Do you have issues with staying hydrated? Soon there will be a water bottle that reminds you to drink! I think I definitely need to get this. Would you like to start a business but don’t know how to get started? This new program at the University of Illinois-Chicago can help! It’s all about entrepreneurship for those with disabilities.

Have you heard about people who want to be disabled? I feel like they should read pieces like this on living with all the pain or this one on feeling like a junkie. Maybe if they knew diseases like fibro carry a 48 hour recovery period, they’d reconsider.

If your caregiver or loved ones need a little more of a peek into what you deal with, please have them read this. It addresses some issues both in chronic and terminal illnesses – and many of these things overlap. Another thing that is always good is to have an ID card with you medical information on it. Other people like having more electronic things like RoadID. I personally have a handwritten ID card in my wallet along with emergency contact info that scrolls along my phone’s lock screen.

Don’t forget to breathe.

I’ve been saving so many articles thanks for facebook’s saved links feature that it’s time to dump them all!

Perhaps the most pressing and scary thing I’ve read in a while is this piece on mortality in systemic JIA. SJIA kids are five and half times more likely to die due to complications arising from our illness than our non-systemic JIA counterparts.

I don’t even know what more to say about that.

There are also certain genetic variations that not only predispose people to autoimmune arthritis but could also point out the course of the disease – including if you could die prematurely.

Let’s move to something more fun. Have you seen these cute empathy cards for serious illness??

They’re adorbs and I need to buy all of them like now.

Is there a problem with tracking patient satisfaction in their care? Alexandra Robbins seems to think so. She argues in this piece that surveys like the HCAHPS for hospital care mislead doctors into believing that they’ve really helped the patient when it ends up turning into a popularity contest.

If you’d have asked me six months ago, I don’t think I would’ve given this article much thought. Now, though, I see the popularity contest in the numbers for the docs I work with. Some of the highest rated docs have horrible preventative medicine metrics. Are they being rated highly because they aren’t pushing patients to get their best care to prevent issues in the future? It could be.

Of course that’s a little misleading as I work with primary docs and not in the hospital, but it’s the same sort of idea isn’t it?

I found this piece on plaque psoriasis by Jonathan Scott of the Atlanta Falcons interesting. It’s not often we see football players speaking out about health issues unless they directly relate to football… unless of course you count the months of pink out to raise tons of money for a poorly managed cancer organization.

It’s been 25 years since the battle to get the Americans with Disabilities Act (ADA) passed. Here’s a review of what has changed from the eyes of someone who was actively involved in protesting. I think my favorite part of the whole article is when he talks about where our problem areas still lie. Children, soldiers, and those with mental illnesses face more stigma than some with less resources to help. There is also the socioeconomic and racial aspects to things.

This is a little on the late side, but this TED talk from Pediatrician Elliot Krane at Stanford University is incredibly interesting. In it, he discusses chronic pain using an allodynia in a teenage girl. His frustration is how difficult it is to treat this pain. We use drugs to cover up the symptoms along with various therapies to treat chronic pain.

Speaking of pain, there is currently a trial in the works to see if sea anemones can help stop white blood cells from freaking out and thus treat autoimmune diseases. It’ll be interesting to follow this and other surprising new medication options.

Autoimmune diseases seem to be being diagnosed more lately. Is it an epidemic? Personally, I don’t think so. I think we’re getting better at recognizing signs, testing, and treating these diseases. AARDA got some great exposure in that piece regardless.

Ever get frustrated with how little people are interested in hearing your story unless you’re possibly dying quickly? You’re not alone. And the frustrations with those who advocate holistic approaches without knowing anything about your illnesses? Yup.

Did you see that Phoenix replaced their accessibility symbol?

I love it. There has been a push for quite some time to get this adopted internationally as it emphasizes ability rather than disability. Hopefully this change helps the movement gain traction.

There have been so many stories lately about people putting notes on cars in lots accusing the driver of not being worthy of utilizing the accessible parking. Here’s the latest one. And for good measure, here’s a great story about a woman dealing with shopping for her wedding dress while having a port, causing raised eyebrows and jerky responses.

Have I said how much I dislike people sometimes?

Ugh.

Maybe all these note leavers need to read this comic which discusses how hard it is to live with invisible illnesses.

Or maybe they need to learn the nice things to say to someone with a chronic illness.

It also probably wouldn’t kill them to read up on helpful things to do when someone they know is pretty ill.

What post about the medical world would be complete without Doctor Who quotes?