Monday, October 31, 2016

What I Be: Weird, Queer, Fat

I definitely need to write a post about the whole Joint Decisions Empowerment Summit. It will happen, I promise. First, though, I wanted to take some time and write about an amazing experience I had while there.

What I Be is a project by Steve Rosenfield that focuses on building security through insecurities. As Steve writes,
Subjects are putting their insecurities out in the open, and exposing a side of themselves that nobody has seen before. By stating “I am not my_____,” they are claiming that they do in fact struggle with these issues, but it does not define who they are as a person. They are not denying their insecurity, they are owning it. It is not aimed for people to say “You’re not fat,” or “You don’t have love handles.” It is to spread awareness on what people go through due to society’s paved roads. These are serious issues that some of us can live with, but most battle on a day to day basis.
Steve even has gotten some real life stars to participate, like one of my favorites Michael Franti. In fact, the project is actually named after one of Michael's songs. The chorus is:
What I be, is what I be
What I be, is what I be
Well, well, well, movin on!
Well, well, well, movin on!
Do you love someone? Do you love somebody?
Love that one!
I tried to keep quiet in person about the Franti connection... But then, at one point, Steve jokingly offered to call Mike. I almost fainted!

It was empowering to simply hear about this project, but we were able to take part in it.

The title of my picture is "I am not my identity."


I've always been mocked for my weight, something that is heavily connected to my illnesses. My weirdness is too, in combination with my neglectful/abuse-filled childhood.

The queer thing is new.

In early September, I started putting together thoughts I've had since my teenage years and realized that I am gender queer also known as gender fluid. What that means, in simple terms, is I don't necessarily fall into the binary gender constructs of male or female. Some days, I feel more male and other days more female. Then there are days where I am simply just me, some gender that cannot be defined. I usually express these things in the way I dress.

I still use female pronouns like she/her/hers. There is no surgery associated with this. It is simply a way to describe how I feel as well as how I express myself via clothing, etc.

I have mentioned this a bit on Twitter, but this was kind of my 'coming out' moment. I'm proud to really be owning my identity and so grateful to the loved ones who have helped me figure out the things.

I'm proud of 'what I be' and to have participated in What I Be, too. You can see more of the Joint Decisions gang pics here.

PS: While Janssen paid for my travel to the Joint Decisions Empowerment Summit, all thoughts and opinions expressed here or on social media are my own... especially regarding how amazing people are.





Wednesday, October 26, 2016

Review: Axon Optics


I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by Axon Optics.

No one likes migraines. I've been getting them for a lot of my life and I can say I've never enjoyed them once. More than that, some medications just exacerbate the pain. Because of that, I generally use muscle relaxers, if any medicine, to help.

So, when I was giving the chance to review glasses from Axon Optics that can help those of us who have photosensitivity with migraines - and does so without needing a prescription - I was like 'bring it on!"

That excitement only grew more as I learned more about the company itself. Dr. Bradley Katz developed these glasses based both on research and his interactions with his patients. There are a number of styles to be able to accommodate patients, including one that fits over prescription glasses - and they're willing to listen to what you want and/or need if they don't currently have it!

They even have a scholarship of $1000 that migraine patients can apply for in addition to tons of science about photosensitivity in migraines.

I have a company crush. No big deal.


I really appreciated how the packaging of this product was. Having the little box in addition to the glasses case and a cleaning rag were really helpful for me. I've been traveling a lot lately and I was worried about how these might travel and my inability to remember to put my sunglasses in their giant case... This helped immensely.

I'm proud to say my glasses are intact and free from both smudges or scratches, despite going all over with me lately!

But do they work aside from making me look fabulous?


I'm happy to say they do!

While traveling, I often snag migraines due to a number of factors from smells to light to physical exhaustion. Using these while flying has significantly decreased the intensity of my migraines. I tend to use these while sitting in the airport or traveling between gates. 

Using them at home has helped as well. I got a newer laptop with better brightness control over the summer which helped a bit. I was still having symptoms, though, when I received my glasses. I had about a week of nearly non-stop migraines after coming back from California at the end of September. When I came back, my glasses were waiting for me.

I was beyond ecstatic.

While these glasses didn't make it so that I didn't have my super-long migraine (or multiple migraines) they did greatly reduce the intensity of my migraines during this time period. 

My one critique is that I have some issues with sinus pressure and pain. Since I get a lot of upper respiratory infections, I get this pain pretty often. Wearing any glasses can be a little more difficult during this time period. I will say that these glasses are a lot lighter weight-wise than sunglasses that I might wear, making it slightly easier to put up with them during that pain. Since this happens for any glasses, though, it really doesn't affect what I think about this great product!

Want to snag your own glasses? Check out the styles here!





Friday, October 21, 2016

#JointDecisions Chat Tuesday!


Don't forget to join me and RheumaBlog Wren for the next Joint Decisions chat over on Twitter!

Twitter chats are among my favorite things. Not sure how to participate in one?

We generally list questions as Q# with # being replaced with the actual question number we're putting up. To answer, the easiest thing is to start your tweet with A#, using the number associated with the question. You do also need to include To illustrate, an answer to "Q1: Please introduce yourself #jointdecisions" is "A1 I'm Kirsten and I have purple hair! #jointdecisions".

Don't say you're me, though :)

The questions are brilliant and I wish I could share them with you now BUT you'll just have to tune in on Tuesday, October 25 at 6 pm Eastern/5 pm Central/4 pm Mountain/3 pm Pacific.

You can click here to be taken to the live Twitter feed in order to participate.





Tuesday, October 18, 2016

Help the #Spoonie Family


I know that so many of us are struggling financially to make it, so I always hesitate to share things that ask for money. I definitely have only done it once where it benefits me and, even then, that was for my nephew's heart surgery shortly after birth.

Still, there are definitely those who need the community to come together and help. Since there are a few right now, I wanted to share them in a single post and help raise awareness.



I won't lie - as well as Sam is doing healthwise, things still are really rough for my sister and her little family. My sister's health is still not great - between her accident at a former job and caring for the kids, it's not easy for her to bring in money, which means her hubby is working a lot. She needs a lot of money for dental and medical care that isn't there right now, and their living situation definitely needs improvement. 

Having a little extra money from time to time would definitely be helpful for this sweet family. If you can donate, please do so here.


My friend Dani is amazeballs. She and I connected at MedX last year and we've been super close ever since. She and my sister have become close, too, since Alexandra deals with a Congenital Heart Defect as Sam did when he was born. The big difference is that Sam's defect was fixed with one surgery - Alexandra needs many.


From their home in Arizona, they have had to travel several places to get Alex the best care - California, Boston, and now Chicago. In the spring of next year, they will be heading to Chicago again in order for Alex to have her next surgery. Due to Alex's medical complexity and the medical issues facing others in the family, money isn't easy to come by.

Without these surgeries, it's not known how long Alex will be around. No parent should be dealing with what Dani and Kevin are - no sibling should deal with what Aria is - and no child should be going through what Alex does.

If you can help, please donate here.



Christine Miserando, the woman who created The Spoon Theory, has had a very hard year. She had a daughter stillborn and began to deal with issues related to pregnancy and illness affecting every part of her body - especially her teeth. Like my sister, Christine needs a lot of dental work in addition to money to help cover medical bills associated with Olivia's passing.

If you can help, please do so here.



I just started reading Jessica's blog. She is into vintage fashion and has an amazing outlook.

On October 13th, there was a fire at her home. She, her husband, and their dog are safe, but they lost their cat. Virtually everything they own was lost in the fire from their cat to her work to priceless family items that can never be replaced to her medical things.

You can donate here and find out other ways to help over on Facebook.







Thursday, October 13, 2016

I'm off to the 2016 Joint Decisions Empowerment Summit

I'm so excited to be heading to Philadelphia today for the Joint Decisions Empowerment Summit! 

It'll be my second time in Philly this year and I'm excited to share some of the brotherly-love-magic with my pals. I'm also incredibly excited about being able to meet up with some of my fellow patients and doing some really cool things.

Join us on Saturday, October 15th, for a LIVE Facebook chat with my pal Rhonda Waters.

While you're at it, make sure you mark Tuesday, October 25th as a special day on your calendar, too! I will be co-hosting a Joint Decisions chat on Twitter about "Stretching Your Private Voice: Helping Yourself Cope with the Challenges of RA." The chat runs from 6-7 PM Eastern.

You can always keep up with all Joint Decisions events here AND you can even subscribe to their mailing list!

PS: Janssen is paying for my travel expenses for the summit in addition to providing me compensation. All thoughts and opinions expressed here are my own!





Wednesday, October 12, 2016

World Arthritis Day


Today is World Arthritis Day.

It's a day to raise awareness of how shitty types of arthritis are and what they can do.

Since 2007, I've gained 100 pounds due to my diseases, the treatments, the fatigue, and fun GI issues. I have gone from someone able to run miles at a time to someone whose knee attempts murder when going up the stairs. I've lost hair, gotten horrible life-threatening infections, had my liver freak out, and had to leave my day job. I had to completely change my life from dropping out of grad school a few years ago to eliminating stressful & harmful people from my life to changing what I eat to changing jobs. 

Arthritis even took my best friend from me, literally making it so that her body couldn't fight sepsis.

My relationship with Arthur is a love-hate one, though.

It's given me a direction for my passion of helping others. It's allowed me to go on trips and participate in amazing things I wouldn't have without it. I've seen the best and worst of humanity in how we as a society address those with disabilities, infantilizing or demonizing them instead of helping them. It's pushed me to become better, to participate in bigger things, to try to change the world for the better.

Most of all, it's given me the most amazing friends and compadres I could ever ask for all around the globe.







Sunday, October 9, 2016

You Can Help Stop the Reduction of Opiates in 2017


In case you haven't heard, the latest tactic to fight the opioid overdose epidemic - and, concurrently, screw us chronic pain patients over - is here! For next year, 2017, the DEA is going to reduce the supply of Schedule II drugs.

Way to go, buttheads.

Chronic pain patients aren't taking this sitting down, though.


My pal Anita is a badass. Clearly, she and I are trouble together.

Because of her chronic pain illnesses, she has started a petition on Change.org to ask the DEA to reconsider the reduction of the opioid supply. She's been through a lot but asks that I not necessarily go into details about her life because "I want this to be ours all of ours."

She goes on to say:
I have been a little aware of this restriction of Opioids for some time. I was sorta scared but also ignored it as I am in the process of applying for disability and that is stressful in itself. It wasn't until my pain doctor, who I thought I had a great rapport with, said some ableist things and tried to stop my opioid meds all together... As upset as I was, it sorta woke me back up that relying on the system without keeping it in check, the system will always choose their own best interest. Though it was reading the article in the petition [and linked above here] that really just fired me so up that I had to do something. Being that I was an activist by way of physical protest and was used to doing things my body can no longer do, this was the only thing I could think of to do. I hope to at least create some awareness on the issue, get some people fired up and hopefully help people understand we aren't addicts we just want to be able to live.
So, what can you do?

Sign Anita's petition. Share it. Put it on Facebook and Twitter and Tumblr and other social media. Email it to your friends and family members.

Help us stop the ridiculous treatment of chronic pain patients here in America. 





Tuesday, October 4, 2016

It's Mental Illness Awareness Week...

Mental Illness Awareness Week has been around for over 20 years. It's a week where we are supposed to take time out to examine how the stigma we associate with mental health issues hurts the greater cause of improving mental health.

Instead, we already got to deal with Donald Trump belittling Post Traumatic Stress. On the plus side, we saw Joe Biden get more emotional in his response than we've seen in a long while.

Recently, Knott's Berry farm had an attraction as a part of their Halloween event that helped continue the stigma facing those of us living with mental health issues. They shut it down in the wake of the uproar.

We also continue to see people dealing with mental health issues and other illness issues being killed by police instead of incapacitated.

Yes, this is a week where we should be thinking about these stigmas, but why do we do this for only one week? Why aren't there more people focusing on this aside from those of us directly affected? Why do people only seem to care when certain events arise and remind them of this stigma?