Not Standing Stills Disease

Can you be depressed and function at the same time?

Posted on April 10, 2016December 5, 2021 by Grayson

In the past, some have questioned if I can be depressed, have anxiety, or deal with Post Traumatic Stress while I still accomplish so many things.

Via Tumblr

Depression, Anxiety, and PTSD have been, historically, some of the fuelers of the greatest things we’ve known – paintings, music, plays, books, etc.

Van Gogh was super depressed. The dude cut off his own ear.

Self-Portrait with Bandaged Ear

Come on.

Yet, he created some of the most beautiful art ever known.

Other notable awesome people with mental health issues include:

Michelangelo: OCD.
Tchaikovsky: Depression.
Beethoven: Bipolar Disorder & Depression.
Edgar Allan Poe: Depression.
Johnny Depp: Panic Attacks.
Isaac Newton: Bipolar Disorder.
Howie Mandel: OCD.
Demi Lovato: Bipolar Disorder.
Abraham Lincoln: Depression, Anxiety, and PTSD.
Buzz Aldrin: Depression.
Ernest Hemingway: Bipolar Disorder.
Marlon Brando: Depression.
Darrell Hammond: PTSD.
Carrie Fisher: Bipolar Disorder.
Calvin Coolidge: Depression.
Stephen Fry: Bipolar Disorder.
Kurt Cobain: ADD & Bipolar Disorder.
Agatha Christie: Depression.
Teri Hatcher: PTSD.
Jacqueline Kennedy Onassis: PTSD.
Whoopi Goldberg: PTSD.
Beyoncé: Depression.

Here we have world leaders, scientists, and entertainers. These people have changed the world despite their mental health issues.

Many of the people on this list are or were very open about their struggles with mental health as well. We discuss our mental health issues because we want others to stop feeling alone or like they have no one to turn to. When mental health issues are so prominent in the chronic illness community, why wouldn’t we discuss these as being just as valid and debilitating as other chronic illnesses?

Isn’t that the point of being a patient activist and blogger anyway?

Via Wisdom to Inspire

If Abe Lincoln can run the world, help fight a war, care for his wife’s mental health issues, and raise his kids while living with the very same three conditions I endure daily? I think I can conquer whatever lies ahead of me.

Am I a Hypocrite?

Posted on April 7, 2016December 5, 2021 by Grayson

I feel like a hypocrite…

Lately, I’ve been sleeping on the couch instead of in my bed next to my husband.

There was no torrid affair with a movie star or falling out. Instead, this is all thanks to the plethora of illnesses that I’ve collected over the years. The biggest culprit as of late has changed from my mostly-controlled Systemic Juvenile Idiopathic Arthritis (SJIA) to my Fibromyalgia. With that comes allodynia, or that thing of when sensations that shouldn’t hurt you do hurt – like clothing touching your skin. Our couch is super soft and feels like a fleece blanket so, when my Fibro flares up, that’s where I live.

That doesn’t mean I slow down by any means. I do a million things from that couch: work on my masters, plan advocacy events, raise awareness of illnesses or money for new treatments, mentor others, write, run two websites, host a weekly chat, Skype or game with my sister, be a badass friend, play with my guinea pigs, pass out and snore, and more! I do sleep – promise.

I’m not superwoman. I know this. I have dealt with such bad fatigue that, when I have the energy to accomplish these things, I have to act. Call it making up for lost time, being stubborn, hogging opportunities – I call it helping others. That’s what I love to do.

Participating in such a wide variety of things contributes to stress and, in turn, pain at times. It takes away from things I might be able to do with family or for self-care. The topics I write about – relationships, self-love, sexuality, dealing with comorbid conditions, managing healthcare, recovering from childhood abuse, and more – resonate with others. They are topics that aren’t covered well by other patients, physicians, healthcare professionals, organizations, and more.

I do all of this because I know that I could have used someone like me as I grew up, as I learned more about my illnesses, to show that you can still be sassy, realistic, have a crummy backstory, and STILL live an awesome life despite rocking a replica House, MD cane sometimes.

I’m that person who annoyingly nags you about taking care of yourself. I do it because I love you and because taking care of ourselves is integral to living well with chronic illnesses.

Hilariously enough, I am really bad at self-care. As the idiom goes, “Those that can, do. Those that understand, teach.”

I get why it’s important to take care of myself, and I try. Living with multiple chronic illnesses and working full-time can be very tiring, especially when you’re trying to change the world too.

You know, no biggie.

What are some ways you could be taking better care of yourself?

Anger is a black hole

Posted on April 3, 2016December 5, 2021 by Grayson

Think about how you parents (or the people who raised you) processed and responded to anger. Write down anything unhealthy you learned from them and what might be a healthier choice. (The goal is not to blame them for their shortcomings, but to recognize how you formed some of your patterns and what can do to change them.)

Oh heavens, Mother didn’t. There was a lashing out with anger, hurtful and stinging words.

Some of them still echo in my head.

I learned to be horrible to other people because it would supposedly make me feel better, but I always felt empty and horrible afterward. I wanted the horrible pain and feeling in my stomach to become a black hole and suck me into oblivion.

The Eridanus Black Hole, courtesy of ListVerse

I was led to believe that anger and judgment were a way of life, that being paranoid about others judging me was what I was supposed to do.

My anxiety loved it.

My heart did not.

By working on mindfulness and compassion training, I’ve been able to build upon my natural skills for helping others. I’ve been able to calm down a lot of that anger that seems to come from fear and hurt.

I’ve taken that black hole and created something new, something beautiful.

The Pillars of Creation, courtesy of ListVerse

And I’m incredibly proud of that.

No Foolin’ – you can join me to kick arthritis right in the teeth

Posted on April 1, 2016December 5, 2021 by Grayson

I have been chosen as the Adult Honoree for the Walk to Cure Arthritis – Dane County.

Thanks, NY Mag!

Being diagnosed as a child with arthritis is difficult. There are a lot of parts of life that are hard to fit in when you’re ill from school to religious institutions (if you’re so inclined) to work. One of the biggest things that has gotten me through all the ick has been sharing it all with you.

And doing cool thing because of it.

My arthritis and chronic pain have led to some pretty badass things, like heading to DC, Stanford, and NYC, so I won’t actively spend time hating it…

It still sucks, though.

As the Adult Honoree for this event, I am asking for your support. How can you help?

Join or donate to my team!
Create your own team!
Walk with me on May 7th in the fight against arthritis!

Not sure if you should? Lemme lend you a hand.

Arthritis is America’s #1 cause of disability

Arthritis impacts more than 50 million Americans (1 in 5 adults) and 300,000 children (1 in every 250).
- In Wisconsin, the disease affects over 1 million residents, including 6,000 children.
Two-thirds of people with arthritis are under the age of 65.
Arthritis in children can cause eye inflammation and growth problems; it can also cause bones and joints to grow unevenly.
Each year, arthritis costs the U.S. economy more than $156 billion.

Arthritis is a serious health problem

There are more than 100 different forms of arthritis.
Arthritis limits physical activity more frequently than heart disease, cancer or diabetes.
Some forms of arthritis are autoimmune with inflammatory conditions that can affect the joints, muscles, eyes and internal organs.
Each year, arthritis results in nearly 10,000 deaths.

Thanks, SCV Arthritis & Autoimmune!

About the Walk to Cure Arthritis

The Arthritis Foundation’s Walk to Cure Arthritis is an annual, nationwide event that supports our mission of finding a cure and championing the fight against arthritis with life-changing information, advocacy, science, and community.
Funds raised through events nationwide support our work to speed up the timeline to a cure while also fighting for everyday victories. Every dollar raised helps pave the way to a lifetime of better.
On Saturday, May 7th at Vilas Park in Madison, residents will participate in the Walk to Cure Arthritis and experience the power of standing together to fight arthritis and giving back to the community.
To learn more about the Walk to Cure Arthritis or to register, visit arthritiswalk.org.

Stepping back a bit

Posted on March 31, 2016December 5, 2021 by Grayson

A few weeks ago, T blocked my calendar. For a whole weekend, I wasn’t allowed to schedule anything.

It was a much-needed wake-up call, even if he claims he did it as a silly gesture.

I do a lot of things:

Volunteer with the Arthritis Foundation
Co-manage an Arthritis Introspective support group
Working on my Master’s Degree
Run this site
Run Chronic Sex
- Run the weekly chat
Write for Creaky Joints
Volunteer with the Global Healthy Living Foundation
Work with Joint Decisions
Write for Liberal America
Write for BlogHer
Write other guest pieces
Work full-time
Chat with my sister
Love on guinea pigs
Apparently, I’m married?

It’s been a lot to handle, and all but two of those things are unpaid or worse – I pay! And there also isn’t the whole self-care thing on there… I’ve been slacking, and it definitely shows.

I really enjoy everything that I do. There are times, though, where things get a little too hectic. Coming back from New York, I worsened my fibro flare. I tried to keep the same pace I had earlier in the year, and my body couldn’t do it anymore.

Thanks, Facebook!

It’s funny, though. I realize I’m a nerd, but hear me out: Spock’s quote from the Wrath of Kahn echoes in my head as I make these trade-offs: “Logic clearly dictates that the needs of the many outweigh the needs of the few,” and Kirk adds, “Or the one.”

But my body says…

Thanks, Buzzfeed!

So I’m going to slow down a little bit and focus more on the quality of what I do.

Yay?

Energy Drainers

Posted on March 25, 2016December 5, 2021 by Grayson

Do you have the option to cut yourself off from your biggest energy drainer? If you do, what stops you from walking away from this project, mindset or person?

It’s not a secret that I have no relationship with my mother. It’s unfortunate that it got to this point. However, for me, it was about wasting energy that is extremely precious to me due to the fatigue and energy issues caused by my chronic illnesses.

The Spoon Theory is a great way to highlight this. I only have so many spoons (or units of energy) every day and that can change by the second.

Yes, my bathroom is Tardis-themed

One of the major factors in cutting my mother out of my life was that I was spending so much energy on trying to help her with her medical and mental health issues that I was neglecting other parts of my life – relationships with others, especially my sister, and my own health.

I would drive two hours to try to stage an intervention that she would act like impacted her deeply, but didn’t change anything. I’ve lost count of how many times my sister and I have tried things like this.

Spending this energy no doubt contributed to me having to drop out of school due to health issues during my first go-round of graduate school. It certainly contributed to my depression issues when she accused me of being an alcoholic for drinking a wine cooler at 5 pm on a Monday – one of a pack of thirty that it took me MONTHS to finish.

The hard thing about my mother is that she always plays the victim or the martyr. Even now, I am horrible for cutting her out of my life and for spouting my dirty damned lies. The fact that a majority of her family doesn’t interact with her or has done the same just means we’ve corrupted each other – not that anything might fundamentally be wrong with her or how she interacts with/treats others.

It took me a while to get there, but I’ve always known that in some way or another I needed separation.

It’s a weird feeling to be almost divorced from her. After all, covert incest is totally how I was raised.

But it is good. I am rid of the majority of my anxiety issues. My depression has gotten much better. Even my chronic illnesses have improved leaps and bounds without the stress of trying to help someone who not only doesn’t want the help but actively creates conflict between you and your sister so she can step in and console you both.

She needs to feel needed.

I don’t need her anymore.

My advice would be to evaluate the people around you and to really examine who might be leeching energy away from you that you need to have Quality of Life.

If you can’t alter that relationship, it’s okay to walk away. It doesn’t make you a bad person.

Your future self would thank you for it.

Musings on My Personification of Arthur

Posted on March 24, 2016December 5, 2021 by Grayson

I have often said over the last few years that I feel grateful for being sick since childhood. I don’t remember living really without the limitations that I have grown up with, even though they do change enough to irritate beyond belief. I have multiple chronic diseases but my fibro is currently the worst offender now that my SJIA is mostly under control.

That brings its own challenges, though, like feeling that I’ve lost a huge part of me. Arthur, as I’ve always called my SJIA, was much like a twin. There is an emptiness that comes when the thing you’re closest to is gone, especially when you have a tendency to personify it.

There is a mix of joy for some semblance of pain relief, sorrow that he’s not around, and guilt that I’m doing so well while children I know have been in and out of the hospital seriously ill and fighting for their lives.

If Arthur had come along later than kindergarten, would I feel differently about him? If I grew up in a home without abuse, would I have gotten so attached to him, to that familiar pain?

I think that I clung to Arthur and used the physical pain as a distraction from my emotional and mental distress from my childhood. Another child in a similar situation may go to a friend’s house as a source of respite, but I didn’t have friends. I was basically not allowed to have them because I could share something that happened and I’d be taken away from my mother.

That threat was always there.

Arthur was that escape for me. Stress and emotional distress bring on flares so it was easy for me to be distracted, to escape into the pain that was most comfortable to feel because I didn’t know different.

I did know that my household was awful, that this was not how things were supposed to be, but I didn’t know a life without Arthur.

Courtesy of Quotes Gram

Arthur, my security blanket, is tattered and worn.

I have to actually face everything I grew up experiencing, both as an adult and as the child in me.

I know I’ll be better for it and I’ve already made so much progress…

There are too many times where I want that blanket back, though.

Have you heard of Dinesafe yet?

Posted on March 21, 2016December 5, 2021 by Grayson

Today I want to share some information on an app that I’m super stoked about – DineSafe.

I get nervous when trying out new restaurants sometimes because many places offer ‘gluten-free’ items but mostly cater to those who follow the fad version of the diet – not those like me who really need to avoid forms of gluten.

When I heard about this free app, I got way too excited.

It uses the location on your phone to find the nearest restaurants near you that have uploaded menus. It then automatically puts together menus based on your allergies or diets you may be following (Paleo, Vegan, Halal, etc).

Portland, OR, I miss your food stuffs

The nice thing, too, is that the allergens included are more than just the top eight most commonly included in apps. This is great for those of us with multiple food allergies as well, as many apps out there may only cover a handful of what is listed here.

A great thing to think about is that European countries have already required that restaurants have a list of allergens utilized within the restaurant and in all meals. The allergens listed on DineSafe follow those same allergens. If restaurants get on board with this idea now, they’ll be ready for when it hits the United States.

Those of us with food allergies have all been to restaurants that do have allergen-free meals but get grumpy about actually taking the measures to keep us safe. I have certainly encountered this with my medical need to be gluten free. Customers can endorse restaurants that do amazing jobs thanks to a new update, allowing customers to see more information on how a restaurant handles those with food allergies instead of just that certain meals are devoid of allergens.

Since the restaurants put in their menus, this allows for more accuracy as to what is currently on the menu than some of the websites out there. I know that I have been to restaurants where I just know what I can eat thanks to researching beforehand, but then the items I thought they had were taken off the menu years ago and I wind up eating chips and dip.

DineSafe can eliminate that for me and for others.

You can even create petitions on the app to have your favorite spots join! Since it’s not super widespread right now, I’m really excited about this feature in particular. If DineSafe isn’t really around in your area, this can be a great way to get it started! I plan on fowarding information about this app to the allergen groups in my area and recommending that my favorite restaurants check it out.

I’ve lived here for six years so I tend to know what I can and cannot eat. However, this could be a great tool for restaurants around the university I work at to utilize in order to bring in more traffic and show how willing they are to cater to food allergies and dietary restrictions.

DineSafe also recommends allergen-friendly training for restaurants a small fee as well, helping them to avoid training that isn’t up to par.

You can check out DineSafe on Facebook (where the above photos are from) and Twitter OR download the app via the Apple Store or Google Play.

Compensation for this post was provided by Dinesafe. All opinions expressed here are my own.

New York debrief

Posted on March 20, 2016December 5, 2021 by Grayson

New York was SO COOL you guys.

I went for the ePharma Summit 2016 which was interesting. From what I’ve seen, we still need a lot of work on both sides to truly get patients and pharma talking.

One of my favorite things, though, was that my sister-in-law B moved to the area last fall. This gave us some time to hang out, watch Spice World, and drink boozy hot chocolate.

And go to the Disney store!

We went out for tasty pizza at Alba’s which I highly recommend, and then had brunch the next day at Igloo Cafe – again, highly recommend.

So much good food.

B’s boyfriend and I got nerdy over Hamilton which led to me buying Ron Chernow’s biography of Hamilton and another one of his on Washington.

You know you have hit the pinnacle of nerdiness when you geek out at brunch over Revolutionary and Civil War history with a grad student studying the same. I love it though.

We walked past the Rodgers Theatre and I had to take this picture. Hamilton tickets are sold out into next year already and those on StubHub were too outrageous for me to justify.

I tried to justify it in my head. I really did.

We did hit up Broadway, though, and saw On Your Feet!: The Story of Emilio and Gloria Estefan. I met the main star, Ana Villafañe last summer at the Juvenile Arthritis Conference where she discussed her Systemic JA battle.

NBD, definitely not freaking out

She has an amazing voice and a beautiful personality. I think she’s slightly younger than me but has definitely turned into an inspiration. She’s definitely a part of why I finally bought heels again.

B got freaked out when Elmo and company ran up on me. My heart took over and I had to snag a picture.

The fact that Elmo is Kelsey’s favorite and all that Marissa talks about are Elsa and minions totally had a lot to do with it, too.

I ate copious amounts of banana splits at my hotel, the Cambria Times Square. Awesome hotel, by the way, AND I got to enjoy this amazing view.

So pretty.

I was super glad to have won a mini-shopping spree at Torrid and was able to pick up some more fun, flirty, and professional clothes before I headed to New York.

I was also pretty excited to snag my first press pass and hang out with the fabulous Kristin Coppens during the summit.

Day one of the summit saw entrepreneurs sharing their applications and ideas for change. You can read about my favorites – Cohero Health, Curatio, and Self Care Catalysts – here.

I got hella comments as I walked to the summit hotel on day two, which was actually pretty fun.

Day three saw a bunch of us patients hanging out at the end which was definitely needed.

On Thursday, I had a major brain fart. I put this up on the door while I was packing up and getting ready after I started the coffee maker… only to turn around and notice that I had not put a cup under said coffee maker.

Genius indeed!

Of course, some of that could have been nerves because I got to hang out with the one and only Duff!

I reviewed her book Model Patient: My Life as an Incurable Wise-Ass back in 2013 and still love it.

I’m honestly still a little shell-shocked that she was willing to meet up and hang out with me for a while. Here’s an excerpt from my review:

I grew up thinking Duff (Karen’s nickname) was the coolest. She was the epitome of early 90s style, with her short hair and signature 90s outfits. She really was all over, from her movie roles to MTV to Revlon ads. She is one of the first models I remember, and she even admits that many people liked her as a model because she was beautiful, yes, but an achievable beautiful – normal girl beautiful instead of Cindy Crawford drop dead gorgeous. To find out that she deals, on a daily basis, with similar feelings and pains as I do was shocking to me.

I gotta tell you – my admiration for this woman just keeps growing. She is involved with a lot just for the joy of helping others but at the same time still feels punky and 90s. She’s focused on being real but also being grateful and kind.

Her hair is still amazing which also reminds me that I need to book a haircut.

I want to be like her even more now than I did when I was younger.

And then she told me I was her hero.

No, I’m definitely not crying right now writing this. It’s totally fine.

Seriously though, how many people get to meet someone they felt embodies the spirit of the decade they grew up in? And how many people get to really connect on a level that only us sick chicks can reach?

I’m obviously still fangirling. Anyway…

I met up with my SIL after that and we hit up some Times Square area shops before heading back to her place for a while. Then I made my way to the airport.

I was so tired by the time I got there that I decided I needed the damn wheelchair. The wheelchair attendant was the nicest guy ever.

We talked how Batman should be considerably darker in personality than he has been portrayed recently and how beautiful NYC is.

He also got me through security super fast and came back to move me when my flight gate had been changed.

The freaking sweetest guy ever. Attention Delta at La Guardia: pay this man more because he deserves it!

The morning after getting home, we headed to Minneapolis to watch the Wisconsin Badgers Women’s Hockey team kick Minnesota Gopher butt in the WCHA tournament. They lost in the second game of the Frozen Four yesterday, but damn it was a great season.

Two of my favorite players AND Bucky!

It was a busy, busy week. It was both frustrating and rewarding beyond belief.

The biggest thing that I learned was how much I love adventuring and how well I can manage myself. I grew up being told things like I would never be able to protect myself in a big city… which honestly made me scared of those cities.