Thursday, July 2, 2015

Therapeutic Thursdays: mental health edition


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.



Wednesday, July 1, 2015

Celebrating 25 years of the ADA

At the end of this month, we'll be celebrating the 25th anniversary of the Americans with Disabilities Act.


A few years ago, I watched this great documentary on the fight for ADA called Lives Worth Living. That PBS link contains not only the trailer, but more information about the film and an interactive timeline of the ADA.

This documentary really hit me hard. I didn't realize the magnitude of what people had gone through to secure rights that, honestly, are either not well known about or not well enforced or used. People got out of their wheelchairs despite needing them to move to crawl up in the steps of buildings in DC and demand rights. People sacrificed a lot to get these rights in place. It's only fitting that on the 25th anniversary we remember that fight.

I think it was also hard to realize that I was alive when this was all happening. Granted I was a baby, but still... Somehow to know that rights I actively use weren't in place when I came into the world is humbling. I am beyond grateful to the amazing people that fought - and continue to fight - for our rights.


If you need to catch up on what the ADA means, check out this collection of publications, this Q&A, or this FAQ. If you don't have time to go through all that, this link will give you the top ten things you need to know. And if you think you know everything about the ADA, here's a list of ten things you may NOT know.

In my state, Wisconsin, about 53,000 (6.6%) of people 5-15 have a disability. About 392,500 (10.8%) of those 16-64 do the same. (stats)

Did you know that there is an annual conference about the ADA?? This year's just happened. You can also check out this piece on disability in America from the Smithsonian. I really like it because it goes through so many things in great detail from vision issues to 'crip is hip' to how those with disabilities are often looked down upon.


There are still many hurdles to tackle, so let's not get comfortable. In celebrating the advances made, we can be comforted in the fact that children aren't being shipped off to terrible sanitariums by parents who just can't handle their needs only to be treated horribly by orderlies and others. We can be comforted in the fact that the disabled are not used like lab rats any longer.

Therapy and education has gotten so much better in the last 25 years. My mother-in-law has worked to help those with vision and audio impairments for most of her working life. Her daughter, my awesome sister-in-law, helps children on the autism spectrum. Despite the rough things they've each gone through with students, they still work hard to help these kids in their various tasks. I think that's awesome, and it makes me proud to be a part of their family. The ADA wouldn't be anything without those that help to enforce the laws and help those of us who need a little more assistance, so we also need to honor these people during this time.

Plus they have the best senses of humor
To find ways to celebrate in your area, please check out this events site. You may even be lucky enough to have the ADA Legacy bus come to your area! You can also sport gear to celebrate acceptance from 3E Love here. I snagged a sweatshirt at the Abilities Expo in the Chicago area a few weeks ago and I LOVE IT.

Tuesday, June 30, 2015

Terminology Tuesday: fatigue


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.

If you have suggestions for terms you'd like to see defined or other posts, shoot me an email at kirsten-at-notstandingstillsdisease-dot-com.

Monday, June 29, 2015

The surprise is out!

I've been alluding to a couple of cool projects that I have coming up. The cat's out of the bag on the first one at least - I'm blogging on sex and relationships over at CreakyJoints!



Check out the first post here! And feel free to shoot me any questions you might want answered or the like. I can't guarantee I can answer it on the blog, but I can help you get an answer no matter what.

Oh and if you want to ask questions on twitter, use the hashtag #chronicsex!

Medical Monday: link roundup


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.



Sunday, June 28, 2015

Self-care Sunday: embracing the weird that is me


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.


Friday, June 26, 2015

June 27th is National PTSD Awareness Day


Tomorrow, June 27th, is National PTSD Awareness Day. You can learn more about what you can do to help raise awareness here.

There are, unfortunately, so many of us living with PTSD. Sometimes we don't know it, or we do but can't access resources we need.

If someone tells you that they don't like certain things and are very reserved about why, please be patient with them. It could be PTSD related and you could be triggering a bad memory. Be kind and ask them what things you can avoid doing or what you can do to help them feel safer. Oftentimes, it's just being around, caring, and being aware of triggers.

One thing you can do is wear teal (one of my favorite colors btw) in solidarity tomorrow.