Therapeutic Thursday: link roundup

Posted on by Grayson

Like with chronic physical illnesses, mental illnesses bring up questions of disclosure. For one, should you tell your boss? The author of this article says yes.

If you love someone with depression or anxiety, you should definitely check out these 11 ways to be an effective partner.

My spoon photo project is ongoing. I can only hope that it can have as much of an impact as this project on what it’s like to live with depression.

Also I hope that you’ll 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.

Terminology Tuesday: acute vs chronic

Posted on by Grayson

When you hear acute and chronic what are the first things that come to mind?

Most people think of math when they think acute and of pot when they think of chronic.

Quite simply. acute means short-term and chronic mean long-term in the medical world.

An acute illness would be one that ends after a while. The flu or a cold are great examples. Breaking your leg or similar things are more long-term but still considered acute for the most part.

A chronic illness is one that is recurrent or long-term – essentially a life-long illness. Juvenile arthritis and Still’s disease are examples of this.

Some people lump certain types of cancers in with long-term or chronic illness, like breast cancer. This is definitely fine I think. On the other hand, some people lump some chronic illnesses like Still’s in with terminal illness. While it is likely that my disease will kill me in one way or another, I prefer not to look at it like this.

Arthur, to me, is a lifelong friend. I know that sounds odd, but it is what it is. He’s dealing with me, which isn’t easy either.

T minus 37 days and counting to #MedX

Posted on by Grayson
(I’ve been watching a lot of From the Earth to the Moon. Since the tagline for MedX in the past has been about igniting change, I figured a countdown-themed post would be awesome, so put on your helmet and strap in for a ride!)

 

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In 2013, I vaguely remember hearing that Britt ‘Hurt Blogger‘ Johnson had gotten involved in this weird thing called MedX.

I didn’t really know what it was, but as time went by, I learned more and more about it, including that there were some awesome people attending with great ideas towards changing the future of healthcare.

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In 2014, I wound up with a flare the weekend MedX happened, allowing me to basically fully participate in the online portions of the conference. I had already taken a MOOC via Stanford on patient engagement and was excited to catch any part of the conference I could. Thanks to my flare, I was able to watch some of my favorite people and friends give amazing talks about their experiences with illness and issues that need to be resolved.

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As I watched the live stream and participated in the twitter feed, I was able to really see the goal of MedX firsthand – to bring all stakeholders in healthcare together to make changes for the better. I was able to see the passion that everyone had for these changes, and it helped to reignite my spark which had been lost in the day-to-day health issues.

See, in 2012, my close friend Laura of Still’s Life passed away due to our shared disease. I also had recently had to change jobs and stop graduate school due to my illnesses. I had become engaged and so I threw everything positive I had into wedding planning to ignore my depression.

It wasn’t the best idea but my wedding in August of 2014 turned out awesome, so all’s well that ends well!

With the wedding out of the way and all this extra time on my hands, watching the live stream was exactly what I needed. It threw me head first back into the advocacy world with more excitement and ambitions for the future than before.

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I decided to apply to attend MedX in person – and I got selected! I got the news over Thanksgiving weekend – and on the same day I heard about my new job – all while spending my first holiday with my father’s family.

It was intense.

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This point in a NASA countdown explains my life right now:

Just prior to this moment, if everything is functioning as it should, the command will be given to start the space shuttle’s main engines. Beginning at the T-minus 6 second mark, each of the three main engines will be ignited and roar to life.

When I was selected to go, I ramped up everything I was doing in my life to focus on one goal – changing the future of healthcare. I attended other conferences this year, started a new administration job in pediatrics, and will start school shortly to work towards my MS in health care administration with a goal of being a patient advocate due to my focus on advocacy and navigation in the health care system.

And I have my new CreakyJoints blog on sex and relationships.

I’m really getting around, pun intended.

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I was a little nervous about going to MedX. I’ve worked really hard in the last seven years on advocacy and awareness, but am I ready for this? I mean, getting to meet a ton of people I look up to all at once could be a little overwhelming. Luckily, I was able to meeting Britt and Kenzie at the Arthritis Introspective National Gathering in May. And then I was able to head to the JA conference in July. I didn’t meet any MedXers there, but I learned a little more about myself as far as why I keep fighting.

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I physically have everything I need for MedX now – a better carry-on bag, all sorts of braces and wraps, and some nicer clothes so I look professional. My flight is booked, with some time set aside to spend with my sister. I’m ready for some comfy weather and that Cali sun.

Mentally I’m still not sure I’m prepared.

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At five weeks out, I’ve started to look at my schedule which is tricky. What in the world am I going to do about all these amazing sessions?

I have a time turner on my keys, but I’m sadly unsure that it’ll work.

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A while back I was questioning the validity of having me attend this conference. How in the world am I possibly qualified? Am I enough of a patient? Am I well enough to attend?

Seeing all the steps I’ve taken in the last two years to improve not only my life but the lives of others, I think that feeling has dissipated… especially since my new biologic has killed my brain fog. I feel like I have my life together, and that’s awesome.

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What am I most looking forward to at MedX? It’s hard to put into words.

I’m ready to bring back information for the doctors I work with, just as the head of our department is excited to hear about it. They could use some of the information for sure.

I’m excited to bring back information to my new rheumatologist, who is beyond stoked that I’m going. She’s super into patient engagement and shared-decision making, and I love her.

I’m happy I can reconnect with people I’ve met in person like Britt and Kenzie, and to meet others I’ve interacted with before but not yet met.

I’m ready to sit and learn and share information non-stop for days. If I could do this type of thing all day every day, I would.

I think that most of all, though, I’m ready to be with my people, my tribe. As a rare disease patient who didn’t receive medical care growing up despite several illnesses, I have a unique perspective on things. My combination of physical and mental issues don’t always make things easy. I think, though, that MedX will provide me another ‘home’ – just like the one I’ve found with AI. To me, they’re almost two sides of the same coin. AI focuses on living the best life we can right now and MedX focuses on changing things to make that easier and better.

I’m ready to sit in a room with other patients and be treated like my opinion matters, like I am an expert on a part of health care. The acknowledgment that patients matter to health care and that our input matters? It’s an amazing thing.

I’m excited to go be a part of it.

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The solid rocket boosters will be ignited, and the bolts that have secured the shuttle to the ground in the last six seconds of the countdown are explosively released, allowing the orbiter to rocket into the sky. Once this happens, we have liftoff!

Well, in late September at least 🙂

I hope that you’ll join me on my MedX journey! I’ll be live tweeting the whole time so hit me up @kirstie_schultz, catch the live streams, and join in the conversations using the tag #MedX.

 

Terminology Tuesday: pain

Posted on by Grayson

Defining pain may seem slightly silly. We all have experienced it at one point or another, whether it’s acute like a sprain or chronic like JA. Definitions often cite unpleasantness due to external stimulation or tissue damage or sensory and emotional issues.

The biggest thing to know about pain is that it’s a product of the nervous system. Your nerves, some of which are better at detecting damage or are closer to areas we tend to hurt more, send messages to your brain via your spinal cord to say “HEY! THIS IS A THING AND IT ISN’T FUN!”

That message is a little altered on the way up to the brain, so pain that occurs often or is quite small isn’t as big of a deal. Sometimes it may not even be communicated at all.

Your brain sends endorphins and other pain-killing chemicals out to help lessen the pain. Depending on what you injured, your inflammatory buddies will head to the injured area and cause a little swelling and/or patrol for invaders and germs.

Chronic pain is rough. My fibromyalgia is considered a “lifelong central nervous system disorder.” My brain doesn’t process some signals correctly – some of that could be the spine’s fault – and I wind up feeling widespread pain from things that are not painful… like clothing rubbing against my skin.

We all know pain is so much more than these signals, but I think this is something we have to keep in mind. We can be so angry at ourselves, at our bodies for not working. Oftentimes these signals get mixed up due to trauma or other illnesses or any number of things. Let’s be patient with ourselves and our bodies, as we might be with a sick child.

 

Medical Monday: link roundup

Posted on by Grayson

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.

 

Self-care Sunday: struggles with self-compassion and affirmations

Posted on by Grayson
Affirmations can have an amazing impact on our lives.
One of the best things I’ve done for myself is to start reading Blessing Manifesting. I know I’ve talked a bit about the site and Dominee, who runs it, but I just can’t stop.

When I first really started out on the journey to loving myself, I snagged a bunch of her free stuff. I posted a few of the things up on my bathroom mirror, where they still sit.

 

I think a big part of the problem was learning to trust myself. Growing up in my household, I was constantly praised for my smarts and then told that I was an idiot. I became very insecure because I internalized the latter even if the former was true.

In order to truly start knowing myself, I’ve had to treat myself like a best friend. I often think about how I would treat T or Kels if they were going through similar things… or, at least, what I would tell them. Between that and reading these every time I’m in the bathroom, it really started to click.

Instead of pushing myself too far, I am resting when needed and learning to speak up about things. It hasn’t been easy. There are days where I’ve wanted to rip those papers off the wall and feed them to the guinea pigs… because that wouldn’t be as wasteful and they LOVE paper, especially Jaq.

Another thing that seemed to be in my way is patience. I usually am really good at being patient with others but I often feel impatient with myself. I should be able to do what I want, whether it’s cooking or cleaning or building a desk.

It’s been really hard to have to step back and try to be kind and show compassion to myself when my hands don’t work especially. Hands weren’t ever a problem for me until the last few years. As a writer and someone who is on the computer often or doing things that kinda need good motor skills, this is incredibly hard. Give me my limp any day over crip hands!

Anyway, this is where affirmations can really come in handy. They can be really simple or general.

Or very pointed and specific.

Either way, they can really help.

What are some affirmations that you might be able to use?

Meeting Emily of Chronic Curve!

Posted on by Grayson

If you follow me, you’ve no doubt heard of Chronic Curve. She’s amazing.

She also just happens to live a few hours from Orlando, meaning T and I made the gorgeous drive out to visit her while we were down there for the JA conference. We didn’t get to spend as much time as I wish we could’ve because of the drive, but it was well worth it.
Em and I are so similar. It’s insane. Well, except that she’s met Snoop Dogg and I have not.

Insert sad face here.

The amazing thing about Em and I, though, was that, while we had vaguely heard of each other in passing before, it really took Laura’s death to bring up close together. I have no doubt that we would’ve figured out how awesome we both are sooner or later, but the fact that our friendship was cemented in such grief and sadness I think makes it that much cooler. The three of us honestly are all similar and I wish that Laura had been able to physically be there with me and Em.

I also got the distinguished honor of being the first person that Bruce the Boxer has immediately warmed up to. I think I smelled like his slobber for like two days, but I wouldn’t have changed it a bit!

Me and mah new BFF

It was so fun to meet Em and drown in Bruce slobber. The latter was definitely therapy, but so was the former. Meeting someone you admire and care about is pretty cool, but it’s elevated to new heights when it helps fill a void from a loss.

 

ePatients & health care decisions

Posted on by Grayson

The biggest thing you have to learn is that you matter and, therefore, your opinion about your care matters. In fact, it can be the most important opinion there is. After all, you’re the one stuck in your body. While a doctor may know how the body works, you know how you feel.

Learning to be your on advocate or a partner in health care is what the ePatient idea is all about. The idea of a patient as a potential expert and someone who should be involved in their care is growing in popularity but still hard for many to wrap their heads around.

In the past, health care has been paternalistic – rules by a lot of old white guys who, in their white coats, tell you what to do and you follow their instructions. You don’t ask questions and you don’t stray from the path – at least, you don’t tell them you have.

Now it’s all about working together, with the patient as a part of the team. There are usually two ways this can go – shared decision making (SDM) or informed decision making (IDM). Neither is better than the other in general, as their success really depends on what type of person you are and approach you want to take.

Share decision making is where you and your health care team would review options and make a decision together. There is back and forth and a discussion.

Informed decision making is where your health care team presents options along with information about each path and you choose one that might best fit your life.

In reality these two are very similar to each other. Again it really depends on your personality. If you like to be a little more guided or work on a team, SDM may be better as you’re not the only one really involved in the decision. If you’re very independent, IDM may be better.

I prefer a shared decision making process. As a rare disease patient, I have become an expert in my own diseases and how they affect my body. My current rheumatologist recognizes that and we speak much more like equals than a top-down approach you might get in other scenarios.

Something else that I love about her is how involved she is in the greater rheumatology community. She’s active with the local chapters of the Lupus Foundation and Arthritis Foundation. She’s also SUPER STOKED to see what I’ve just learned from the JA conference and what I will have learned from MedX after September.

What type of decision-making process do you enjoy? Have you tried multiple approaches?

 

Terminology Tuesday: heat intolerance

Posted on by Grayson

One of the terms I’ve been asked to explore is heat intolerance or sensitivity. It’s also something that I deal with because of my fibromyalgia, so that’s fun. Issues with heat can happen with a ton of diseases and medications, so it’s a wide reaching problem.

Multiple Sclerosis is one of the biggies with this. I watched my great grandmother deal with MS and it was hard to see her deal with the symptoms. I wish that she was still alive now that I’m an adult because I have so many questions for her regarding illness things.

Sigh.

Temperature is regulated in the hypothalamus:

It’s supposed to send messages to your body to sweat when you’re too warm to help cool you down. Sometimes it doesn’t – or doesn’t send a strong enough signal. Again that can be for a multitude of reasons.

It almost is like that feeling of when you get into a really hot car and your body freaks out yelling at you about getting a black car with leather seats… You may get headaches or nauseous or lightheaded.

I feel bad, but when I get overheated my brain kind of just craps out. I feel like it’s a lawnmower that’s run out of gas – and that makes it hard to get it started again too.

The most important thing to do is get to a cooler place. Turn your AC down a few degrees or sit in front of the fan and hop into a cool bath. Stick a cool towel on your neck or strip down to your birthday suit or lay on the floor since heat rises. I usually do a few of these things at once and it helps a lot. It’s really important to keep these things in mind as we are in the middle of a heat wave in so many places across the globe.