Category: theme days

Medical Monday: link roundup

Posted on by Grayson

Ever want to cleverly get back at someone who parks in a handicapped spot without needing it? Here’s an idea for you – post-it notes.

If you’re on tumblr, go follow ‘Arthritis Humor.’ It’s pretty awesome. Hey, while you’re at it, follow me there too! I don’t always post things about chronic illness, but you’re more likely to see pictures of my piggies there or on instagram than anywhere else!

With the recent awesomeness regarding marriage equality, it’s worth noting that our work isn’t done. Unfortunately there are many more civil rights issues out there, even regarding marriage. Many people with disabilities have to forgo marriage because it would lose them disability benefits or Medicaid and the like. Even more than that, if the government thinks you’re basically married, then they could take away these benefits. Sadly, I know many in this boat.

Sadly, flying with a wheelchair really, really sucks… But there are wheelchair accessible beaches out there so there’s that. Hopefully with this wheelchair that can climb stairs, everywhere will become more accessible! And hey, if that’s not cool enough, check out how this dad made an accessible swing in his backyard!

Speaking of, the 25th anniversary of the ADA is this month!

We all encounter those who don’t think we’re sick. Now you have a guide for how to handle them!

If you’re living with someone dealing with a chronic illness, or just want something to show friends, check out this post on helpful things to say to someone in chronic pain and this one on 29 secrets of being a caregiver. And if you’re in a relationship with chronic illness? Check out this article on lessons a partner has learned and this one on intimacy.

Often, those of us with disabilities face issues with parenting. For some, it’s fertility or disease activity-related, but it can be a mental crapshoot as well. We wonder if we’ll be effective enough parents – helpful enough for our partners but also active enough for our kids. This isn’t limited to humans either – sometimes pet parents have these issues too… though I don’t have to worry if my piggies will be sick like me.

There are pretty cool toys to help children with JA and other diseases with joint strengthening.

If you’re looking to break up with your doctor, make sure you do it the right way… maybe it’ll be because he uses the Figure 1 app and that creeps you out.

Speaking of doctors doing things, check out how a clinic in Yakima, Washington, is utilizing social media.

The INTERCEPT system, used in Europe for some time already, is coming to the US! It helps rid donated blood of pathogens.

Check out this rare disease toolkit set!

Ever curious about how medications get approved? Novartis has your back!

If you’re able to work out a lot, check out the Charity Miles app. You can donate to your favorite charity via your workouts!

They are working on tricorders you guys!

Here’s a cool article explaining how to go about conserving spoons. Speaking of, check out my recent photo project!

Like many states, Kansas’ state health care isn’t really helping people with disabilities. Unfortunately that seems to be a direction we’re going in the country. Here in Wisconsin Scott Walker has made so many cuts that he’s kicked thousands of deserving and needy people off of government assistance.

Medical debt isn’t exactly a fun topic, but one we need to discuss. Here are some ways to battle that debt. The people over at RIP Medical Debt have a good plan too – one that allows us to erase a ton of medical debt. See, debt is often sold to third parties who conduct collection calls and such. This company is looking to be one of the third parties – and erase debt. That’s pretty awesome.

If you need a laugh, Dr. Oz has to go back to clinical practice as punishment for being a quack. Or you can watch this video from Buzzfeed on what it’s like to date a med student… which may or may not also describe living with me.

Toni Braxton has opened up more on living with lupus and what she finds is hardest about that. Oh hey, Daniel Radcliffe has cluster headaches so the spoonie community just got that much cooler. And Dominique Easley from the Patriots is helping his sister battle fibro. Did you know Amy Schumer is a HUGE MS advocate? Perhaps the coolest information as of late? Serena Williams has been studying pre-med after her sister Venus’ Sjorgen’s Syndrome diagnosis.

 

Therapeutic Thursday: Juvenile Arthritis Conference

Posted on by Grayson

It’s almost time!

This Saturday Theron and I will board a plane to Orlando to spend a few days exploring before the JA conference!

We plan to spend a few days at Universal because HARRY POTTER YOU GUYS.

I can’t wait to try butterbeer and all the fun things. Oh and we’re going to Busch Gardens too!

I can’t wait to see how the little cats they had a few years ago have grown. Watching Wildlife Docs is making me even more excited.

Then I get to meet up with this hottie, Emily of Chronic Curve, who is practically my galentine soulmate. Just saying.

Honestly this already is so much coolness that I’m freaking out a little bit.

But THEN…

I get to go hang out with JA families and cool peeps from Arthritis Introspective again!

Honestly I just hope I can keep up with all this! I tend to get overexcited and fill my plate a little much with these types of things.

When I get back, I’ll be starting kineret. We didn’t want to start it before I went in case I had a bad reaction or someone didn’t get the memo about not bringing sickness to the event with kids on chemo and biologics.

I’ve written up a ton of blog posts so you won’t have to miss me when I’m galavanting around and enjoying more Harry Potter land than you!

Movie Review Monday: Inside Out

Posted on by Grayson

Over the fourth of July weekend, T and I went to see Disney & Pixar’s latest venture, Inside Out. It’s about a girl named Riley whose family moves to San Francisco from Minnesota and how she copes with the change… but in a unique way. See, they show the primary emotions that guide us – fear, anger, disgust, sadness, and joy – as tiny little people inside our brains.

It’s a great film. It’s silly but endearing and teaches you something. Joy and Sadness don’t get along well and Joy basically controls Riley. After the move, Sadness goes a little haywire… and she and Joy wind up lost inside other parts of the brain.

I found myself connecting a little too much with Joy.

And T found himself identifying with Sadness.

My internal reaction to that?

 

Nah, I figured it out when he did mostly.

Joy learns by the end of the movie that Sadness has a place and strengths too – and that Riley needs Sadness so that she can have Joy. It was an awesome movie, and you should definitely see it like yesterday.

It was a great way to explain the necessity of all our emotions and how important it is to let yourself feel them. It wasn’t a bad way to explore depression either. The coolest thing about it is that there is science to back a lot of this up.

I get overly emotional at the movies, especially kids ones for some reason. I don’t like it, but I let myself feel the sadness throughout this movie. It very much helped me to quickly process the things I’ve been through in the last few years. I used to deny my sadness, then I let it take over causing horrible depression and anxiety (thanks Fear!).

I recognized that always using joy for me was a coping mechanism for what I grew up in. I needed to be super positive or I wasn’t going to survive. Now that I’m an adult and on my own, I can allow myself to process each emotion. They each have their place.

Disgust helps me try to look good and fit in.

Anger helps protect me. Honestly, so does Fear.

Sadness… She helps me process what I’ve been through.

And Joy? She helps me be me. I still probably need her the most, but each of these emotions is important in their own way.

What emotions do you feel are in charge of you? And which do you need to work on allowing?

Self-care Sunday: ruminations on strength and integrity

Posted on by Grayson

For most of my life, I’ve hated the word strong. To me, it’s a reminder of all the times I was told to be strong as a code for shutting up and shutting down my appropriate emotional reactions or that I would be the one to have to keep everything and everyone together.

Either way, it’s a pressure that a child shouldn’t be forced to bear let alone think about. Add to all that the inspiration porn-like way strength is used towards those in the chronic and/or mental illness communities and it’s no wonder I have an issue with it.

Like seriously, this is ableist in SO many ways. It denies us, again, the ability to experience and express our emotions which is really bad not only for our mental health but for our physical health as well.

UGH.

Lately, though, I’ve begun to embrace this word as it rightfully should be used.

I think that strength is about dealing with the hardships we face and admitting what we’re dealing with. Strength is making it through all of that despite how many times we fall down. Continuing in the face of all that adversity is worth of admiration and celebration, especially if we come through intact and true to ourselves.

There is definitely something to be said for the crap we all must go through in our lives. I think that any illnesses we deal with just add to that whether they’re chronic or just long-term, mental or physical. I am a 27 year old woman living with chronic and mental illnesses that are basically a product of the abusive home I grew up in, which led me to further abuse. I cut contact with the toxic and abusive people in my life and starting building or rebuilding bonds with the best people I’ve ever known. The fact that I’m alive right now through all that shit is amazing.

Most of all, I think that the most incredible thing is that I’m happy – happy to be alive, to be a chronic illness fighter and advocate, to be someone who helps others, to be a piggie momma and wifey and sister and auntie… That’s all awesome, but the best thing of all is that I’m true to myself.

Am I still dealing with coping with my illnesses? Totally. Do my mental illnesses sometimes get the best of me? Yup. Am I passionate about making sure people are inclusive? Sure. But all of that is true to myself, to the problems that I see.

We all need to learn that our opinions are the most important in regards to ourselves. Do what makes you happy as long as you’re not harming others with your actions.

Terminology Tuesday: what is a spoonie?

Posted on by Grayson

I had an opportunity to Skype with Rohan, who created the app Buddhify, last week. We were talking about how helpful meditation is and he was getting my take on it as a chronically ill chick for his upcoming book, This Is Happening.

First on his list of questions was what in the world is a spoonie?

If you don’t know what it is, I highly recommend reading The Spoon Theory by Christine Miserando of But You Don’t Look Sick. Here’s the quick version though…

Spoons are a way to measure the finite and sometimes changing energy it takes to do things. Sometimes just being awake eats up your spoons and other times you can work out hard or nap and gain spoons.

People with chronic illness identify with this for many reasons – Christine herself is a lupus fighter. This theory helps to explain how different fatigue stealing energy is than just normal people getting tired at the same time every night. That isn’t to say that things don’t fluctuate for normal people but, to be honest, it’s a whole different ballgame. Y’all are playing T-ball compared to the murder/death/scary-words ball we got going on.

My brain fog couldn’t think of a great phrase. Hooray!

I see a lot of people ask blogs and health activists if their illness counts to make them a spoonie. Sometimes people get really negative reactions. Guess what? If you have a chronic illness, whether physical or mental, you are a spoonie. Get you some!

Hey – this week I’m documenting how much energy (or spoons) daily tasks take me. Come join in on Facebook!

Self-care Sunday: getting started

Posted on by Grayson

I’ve talked a little bit about getting started on my journey to self-care and self-love. It hasn’t been an easy one for sure but it’s been a worthy one.

Not everyone has the support system or the access to care that I do. It’s upsetting because all life is equal and I wish that our society at large reflected that belief instead of capitalism but I digress.

Since not everyone has these things, I thought it would be good to share some resources on how to get started in the self-care/self-love game.

First up is this amazing starter kit page from the School of Social Work at the University of Buffalo. Here you can learn more about what self-care is, develop a plan for yourself, and have tools to check in with yourself on how you’re doing. They even have this great self-care worksheet you should totally look into! This was originally developed for their students I think, but I’m really glad that they’ve taken the time to share this with others.

The University of Kentucky has a very basic PDF here as well. One of the things I like about this is that they include examples of self-care in the various sections. East Carolina University has a checklist that’s pretty handy.

Sometimes it’s more helpful to figure out what something is by learning what it isn’t. This site suggests that you develop an absolute no list, which can be very helpful.

If you’re someone that needs research and science behind things you do, this page has 25 things you can do that are proven to help enrich your life and take care of yourself at the same time.

If you need something a little more concrete and immediate, this is a great weekly planner.

Sometimes self-care just means watching some Netflix in the tub with the lights off and candles lit. Find something funny and let yourself laugh your ass off.

In any case, today I want you to do something good for you. Maybe it will be filling out one of the worksheets above and learning more about self-care and self-love. Maybe it could be dancing in the shower or laughing in the bath. Maybe it’ll be baking blueberry muffins and eating half the batch because they were delicious. I definitely wouldn’t blame you… mostly because I did the same thing like three weeks ago!

And blueberry muffins are legit amazing.

Therapeutic Thursdays: mental health edition

Posted on by Grayson

If you’re an introvert, you may feel very out of touch with the world around you at times. I definitely am what I’d call an extroverted introvert (yes it’s a real thing) but I’m still an introvert nonetheless. I’d rather go out to eat and then watch Food Network or Netflix with y’all than go do a ton of things. One of the biggest things that always reminds me of my introverted nature is that I HATE talking on the phone unless I’m super close to you. Even then, it’s not always my most favorite thing… unless you’re my sister really.

If you’re an introvert, it’s likely you’re also a fixer like me. We tend to keep running and running until we’re out of gas. In the last year I’ve gotten better at that and I hope that it has helped to remind you – fixer or not – of how important it is to set boundaries and take breaks.

The movie Inside Out has a lot of people thinking about emotions and how we teach our children about them. Emotional education could be the most important that we can provide. I didn’t get that and I can say that it would’ve helped immensely.

If you haven’t experienced an anxiety attack, check out this brave video. Casey wanted to record himself during an attack so that he could raise awareness of what it’s like. Kirsten King with Buzzfeed recently did a project with drawings about anxiety as well. Check out this piece on Smart Girls as well. Sometimes anxiety comes off as overthinking.

Demi Lovato has opened up recently about living with Bipolar Disorder, the mental health stigma, and how important it is to have a great support system.

If you need a break after that, check out these cool motivational posters for people who hate doing stuff.

Terminology Tuesday: fatigue

Posted on by Grayson

I put a call out for some terms y’all would like to see defined further and one of the first responses I received was fatigue.

Despite the above, fatigue is hard to define. We might say we’re tired but that doesn’t quite cut it does it? Sometimes I’ll tell T I’m tired and he’ll tell me to lay down. I rebut with some iteration of ‘well, it’s not sleepy tired though.’ I might go on to talk about my lack of spoons.

It can be hard to recognize what is fatigue versus things like drowsiness for some. Personally it isn’t, but it can be hard to distinguish drowsiness for regular sleepy tired.

Monsieur Fat-i-gue doesn’t come to a party alone. He usually brings his pals like muscle soreness or weakness, joint pain, headaches, sore throats, and more. He’s really a popular guy. The fact that he has so many friends makes it hard sometimes to get to the root cause of the issue. Sometimes it’s just that we’ve spent our spoons. Other times it might be a sign of a flare up or worsening disease. For others still, this could mean a new diagnosis is on the way or that medications are having more side effects than they used to.

It can be easier, depending on what’s causing the fatigue, to get help. If it’s a thyroid issue, starting on medication for this will help. Some of us are anemic or vitamin deficient and bumping up those levels can really help. These are all things that need to be discussed with your doctor though, as vitamins and that fun stuff also have interactions, contraindications, and side effects. If it’s a medication issue, you might discuss starting a different medication or changing dosages.

There are a lot of things that can aggravate fatigue, from alcohol to caffeine dependence to weight to inactivity or working out too much to depression and grief to our medical conditions and medications. It’s important to learn how to take a step back and check in with yourself to see if any of the non-medical things could be the cause to your fatigue.

For some, fatigue is its own disease. Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis or by the new name, Systemic Exertion Intolerance Disease) can be really devastating.

Generally this is a disease of exclusion where your doctor will make sure things like fibro, lupus, other autoimmune arthritis types, diabetes, and more aren’t the culprits. That said, many with CFS/ME/SEID do have a lot of overlapping conditions like fibro so it’s a hard one to diagnose.

Unfortunately CFS/ME/SEID is like fibro in that there are many doctors out there who don’t believe these are very real and concrete medical conditions. They think, instead, that there is some psychosomatic issue at play. It’s unfortunate because you then wind up with a lot of people who need medical attention and help but aren’t receiving it either because their doctor hasn’t brought up the disease due to their beliefs or because they refuse to treat a patient with anything more than therapy.

If you or someone you love has fatigue, it’s important to fight to find the root cause. If you already have an autoimmune disease, that may be the culprit but isn’t always. Track how you feel, especially if things like weather play into it. Track your medications and physical activity so you can see if you may be overusing your spoons or having a reaction to meds. Most importantly, seek second opinions if you run into a doctor who isn’t listening to you.

As always, you really have to be your own advocate with these things. Know that myself and others are here if you need help.

Medical Monday: link roundup

Posted on by Grayson

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.

Self-care Sunday: embracing the weird that is me

Posted on by Grayson

My word for June was ’embrace.’

I’m excited to say that I think I have done that on so many levels for myself.

Over Memorial weekend, I went to the Arthritis Introspective National Gathering (G8) in Milwaukee. I got to hang out with good friends – and finally MEET some of them!

I’m still reeling over meeting Britt! LIKE OMG

That gathering was amazing. It felt like home to me and that was something that I’ve been looking for for a long time.

It also has gotten me started on some really exciting projects that I can’t wait to tell you about – but I have to for now! GAH. As a preview, one of them has to do with the sexytimes.

Oh yeah.

I also embraced what my true calling is and made the decision to go back to school this fall for my MS in Health Care Administration with a focus on Health Care Advocacy and Navigation. What can I do with that degree? Move up in my current workplace or even be a professional patient advocate and go to appointments with people!

Part of why June was about embracing for me was because I needed to embrace who I really am. I still haven’t figured it all out, but I don’t think any of us do before we shove off this mortal coil.

In order to really embrace myself, I’ve had to deal with some hard things in therapy. It’s going to get worse I know, but it’s worth it. I’m not going to let go of my past, but I am going to OWN it.

I will no longer be a victim to my disease or my mother or anything else. I am what I make of myself, shitty past or not. I am a funky ukulele playing guinea pig parent who had a baseball wedding and believes in ghosts – and talking to them. I am a bomb ass wife, learning how to really be a sister and a daughter. I am a chronic illness patient and volunteer who loves talking openly about silly subjects.

Most of all, I’m a silly optimist.