I have another piece featured on the BlogHer front page today about why Hamilton inspires my health activism.
Don’t throw away your shot to check it out!
Healthevoices 2016
Healthevoices 2016 is happening in a month-ish!
I am incredibly excited to be able to attend this year along with several other AMAZING health activists and bloggers.
Look for fun information coming from my Twitter from April 15-17.
And if you’re in Chicago, give me a holler!
PS Janssen is paying for my travel expenses for the summit. All thoughts and opinions expressed here on my super-excitement are my own!
The power of vulnerability
Watch Brene Brown’s TED talk “The Power of Vulnerability” and then share the link with someone in your life who you believe could benefit from watching it.
There’s not much that I want to say here, except to note that people ask me all the time how I’m able to share what I do here or thank me for being so brave to share.
Being vulnerable is a natural state for me. Abuse, assault, PTSD, chronic illnesses – they’re all vulnerable things.
It just takes us getting outside of our comfort zone enough to share those vulnerabilities with others.
Charging… 90%
How do you recharge?
Last week, I talked about how integral the piggies are in helping me get energized.
I mean, you cannot be sad and spoon-less while looking at these babies.
Spending time with them does wonders for me. It helps me focus on taking care of myself in a selfless way because I have to be there for them.
It makes it easier to be nice to myself.
When I was in New York at the beginning of the month, it really struck me how much they help me to gain energy and use it wisely… how instrumental they are in helping me rest but also be active.
I seriously missed my boys beyond what words can convey.
When working on building skills for EMDR, I actually picked as my safe place a scene that plays out at least once a week.
The boys take turns running around on the floor and I play with them.
T is getting better at joining in, but in EMDR I see him playing one of his games.
We’re all happy and interacting even though we may be doing different things.
It is the safest I’ve ever felt in my entire life, and it gives me the energy to do what’s best for me and for our furry little family.
Now I want to hear about you – how do YOU recharge?
Hiding
Identify one experience from your childhood that taught you to hide your true self – some event that led you to believe that hiding was safest. As you go about your day, recognize when you’re acting on this belief, and remind yourself, I am not that child anymore, and this belief no longer serves me, since it holds me back in life.
Yikes. I wish I didn’t have so many events to choose from.
When I was in high school, I came to terms with something I’d already known to be true for quite a while – that I am attracted to all genders. At that point, I considered myself bisexual but I’m likely more in line with pansexuality based on this definition:
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| Courtesy of Queer Babble |
It was great for me to be able to embrace that side of myself, even though I wasn’t able to really do so publically. A few of my close friends knew but that was about it.
All my friends at the time openly embraced and lobbied for same-sex marriage and other related rights. Living in a very Tea Party-esque household, I couldn’t, no matter how much I wanted to.
One day there was a rally and we drove by it on the way home from school. My mother was livid to see my boyfriend at the time as well as all my friends there. I got a thorough lecture about how civil unions should be enough for ‘gay people’ who didn’t need to shove their sexuality in everyone’s faces.
There’s so much wrong there.
It took me until I was in college and others sharing their own struggles with me for me to be upfront about it.
I grew up hearing, again and again, the same things about sexuality being pushed in people’s faces and how it was fine to be different like that… but not in front of others, not in movies, not in shows. You could be yourself as long as you did it in secret where no one could possibly see you.
What kind of message is that to send to any child?
I opened up about my sexuality as well as my sexual abuse at the hands of another child when we were young at the same time. My mother’s response was that the abuse must have confused me. Besides, I was dating T at the time, so I couldn’t like everyone unless I was a super slut.
I wish I was kidding.
I know now that degrading myself for my sexuality and feelings serves no purpose, other than to replicate my mother’s words in her absence. I refuse to do that to myself.
The energizer piggies!
Tell us about three people who always make you feel energized and inspired by spending time with them.
It’s funny who and what we consider to be energizing, isn’t it?
Coffee? YES.
Parents? Not so much.
Other people? It depends for this mix of intro- and extrovert.
My guinea pigs? Always.
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| From left to right: Oreo, Jaq, and Gus |
These three boys have the power to cheer me up, calm me down, and give me energy on my worst fatigue days.
They never fail.
Before I started on antidepressants about this time last year, I had a really rough couple of days. I would never do anything to my babies, but I started thinking about what would happen if I did.
And it was really gross and scary. I hated every minute of it. My dreams were awful.
The good news is that this helped me get help I really needed both in the form of meds and restarting therapy.
These boys are 110% the reason I’m here right now.
I know that not everyone views animals as equal to human life like I do. This whole concept of guinea pigs saving my life probably sounds strange if you’re one of those people. If I had a puppy, though, would the reaction be different?
I guarantee it.
These three boys are as much a part of my life and my thoughts as any human child I may have in the future could be.
They just have the added bonus of giving me energy instead of taking it away.
Fight Arthur Hockey Style!
Do you ever feel like you want to just punch Arthur in the face? Give him a black eye and knock out his teeth, hockey style?
GUESS WHAT?!?
You can! Well, kinda, if you join or donate to my team ‘Puck Arthritis‘ for the upcoming Dane County Walk to Cure Arthritis happening May 7th!
Who knows – you might even end up on TV!
Okay, mostly, this is just a blog post to brag that we watched the amazing Wisconsin Women’s Hockey team beat the Minnesota Gophers in the WCHA tournament this weekend.
It was freaking awesome.
New York Bound!
This weekend, I’m hopping on a plane and making my way to New York City for the ePharma Summit!
By the way, check out the pieces I’ve written for them so far:
- How Can We Measure Patient Engagement Levels?
- The Future of Patient Engagement
- The Importance of Compassion
- The Moonshot to Cure Cancer Embodies Basic Tenets of Patient Engagement
- The Pros & Cons of Advertising Pharmaceuticals From a Patient Point of View
- Why the Regulation of Biosimilars is Integral to Their Success
I’m excited for SO many reasons.
This is the first time I’m visiting NYC. My sister-in-law and her boy toy moved to NYC towards the end of 2015 and I miss her face.
PLUS we’re going to see SJIA fighter Ana Villafañe kick ass on BROADWAY.
ALSO fellow rheumatic disease person and all around hottie Chef Seamus Mullen has a restaurant in the area.
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| Courtesy of http://tertulianyc.com/ |
It’s fine if I swoon right?
Plus I get to meet and hang out with some of y’all! If you’re in the New York/Newark area and want to hang out, let me know! I’d love to meet you!
Ironically enough, finals are right after I get back from NYC… so if you don’t hear a lot from me in the next couple days over here, go over to the ePharma page!
Packing for trips
Going on trips can be really awesome as long as you’ve packed in the best way for your illness and the type of type you’re taking.
Planning anything with an illness isn’t easy, but this especially goes for packing for a trip – especially one you go on a plane for.
I have awful luck with checking bags so I try to keep everything to my larger carry-on and my backpack. The amazing packing strategy I have helps:
Take things you can wear multiple times during your trip.
I’m not talking about things like underwear that should only be worn a day at a time, I’m talking things like blazers, pants, etc. Bring enough variety, though, that people don’t necessary question that you’re wearing the same thing.
For example, pair your pants with flats one day and boots the next. Bonus points if you go for tall boots that will end up covering some of those pants.
In order for this to work, the clothes you bring really have to be more muted. I likely wouldn’t get away with wearing my red plaid pants two days in a week at a conference, but easy staples like black dress pants or leggings will go far.
If I didn’t sweat so much or like fashion, I might only bring a pair of leggings to NYC!
Alas, I’m cursed with the fashion bug.
Still, other things pop up. We get concerned about what illness-related tools we should bring.
How much K-Tape do I need? Is there room for my Biofreeze and my makeup in my liquids baggie? I’ve had good days lately, but what about bringing my fold-up cane? NYC is a lot of walking.
The best thing to remember is to take things you may not be able to pick up in a store on your trip. Biofreeze comes with me in all cases because I’ve only seen it online. K-Tape can be found at many places like Target. My badass House cane? We’ll see how I feel.
Do you have any packing tips for trips?
Compassion Meditation
Devote five to twenty minutes to a simple compassion meditation. Start by visualizing someone toward whom you easily feel compassion, and silently repeat the words May you be happy and free from pain and suffering. Now visualize yourself and mentally repeat the same thing. Next, visualize someone toward whom you have neutral feelings while repeating the same well wishes. After that, visualize someone for whom you have trouble feeling compassion, to help extend the goodwill you’ve fostered toward them. End the meditation by extending your well wishes to everyone on the planet, with these words: May all living beings be happy and free from suffering.
I love compassion meditation. Quite honestly, it’s the one meditation I tend to practice the most.
The only hard time I have is picturing those I don’t get along well with.
I go for big fish instead of the guppies that are easier to catch.
Have you done this type of meditation before?