Dear Current Rheumatologist #HAWMC

Posted on by Grayson

Time to get real.Write a letter to the best or worst healthcare professional you’ve seen. Don’t hold back.
Dear current rheumatologist,
THANK YOU.
Thank you for listening to me, no matter how my anxiety influences what I say.
Thank you for always keeping in touch not only with my primary care doctor but also with my dentist as we work to fix my nasty mouth.
Thank you for treating me like an equal, for always being excited to hear about the conferences I’ve gone to and the information I can share, but then also stressing the importance of self-care as I work too hard on these things a lot.
Thank you for sending me to get trigger point injections, for being willing to try whatever we can to work on my fibromyalgia. I cry every time I get to my car post-injection because it shouldn’t have taken so long to get my fibro diagnosis or to be referred for these injections – because you care enough to try whatever might help.
Two years ago I called your office to ask if there was familiarity with SJIA/Still’s there. I was expecting a nurse to call me back about the potentials of taking me on as a patient. Instead, you called me. You talked to me for over half an hour about what treatments I was on and why certain treatments hadn’t been looked at yet, and you told me what your plan would be for me. After we got off the phone, I filled out the form to change insurances so that I could come see you.
You sent me through some of the most intense physical therapy I’ve ever been in and it has helped me immensely. You banned me from yoga which I was mad about at first, but then you explained why, explained how much weaker my body was than I had noticed. With that PT, I built up to yoga again and learned how to recognize the signs of when I was pushing it too far.
You’re always open to my ideas and my data, something that not all health care peeps are into.
I am so incredibly lucky to have you as my rheumatologist and as someone working hard, not only for me but for so many others as well.

 

Share The Love: Great Resources #HAWMC

Posted on by Grayson

 
Friday follow! Create a must follow list for your community:
• Top 10 Tweeters
• Top 10 blogs
• Top 10 Facebook pages
If you’re interested in great writing about illness and disability, these are definitely some people you’ve got to follow – even if you’ve missed them. Some of these aren’t even about illness but are just awesomesauce.
Twitter:

 

Facebook:

 

Blogs:
Also don’t forget to check out Chronic Sex!

 

 

Conference Catch-up

Posted on by Grayson

There is so much from the last few months to catch up on!
After visiting Toronto earlier this year, I made my way to Phoenix, Arizona, for the Juvenile Arthritis Conference (West).
Being able to be around some of my favorite advocates is something that I truly love about attending these conferences… but to present? That was a whole new level of awesome.
I was so blessed to be able to present with my pals Mariah Leach and Jeremy Forsyth as well. Their dedication to helping others, being informative, and being silly matched me so well. Jeremy, for example, thought we could loosen everyone up by screaming sex in ridiculous ways before our session started.
It worked and that laughter was so contagious.
We definitely tried to copy that at the east JA Conference in Philly in August, where Keegan Stephen was our male expert.
These two groups of college-aged peeps with various types of arthritis were so engaged, so interested, and so in tune with wanting to learn everything they could about what we were saying. So many thoughtful questions came out of both the west and the east conferences. Over at Chronic Sex, Mariah and I will be going through the question cards and providing some answers within the next few months.
All of this gives me so much hope for what Chronic Sex can and will be able to accomplish. I am SO excited.
In September, I traveled back to California to present Chronic Sex at Stanford Medicine X.
I got to spend time with some of my favorite people like Dawn Gibson and Heather Corini Aspell. I also got to room with my pal Danielle Edges who FINALLY got to meet my sister.
I’M NOT CRYING YOU’RE CRYING. Seriously, this picture alone was worth my travels. My sister and Danielle have become close friends and we’re almost like triplets with time in between our births. It’s just too awesome.
Dawn spent a few days near where my sister lives with me and got to spend time playing auntie. I spent a couple of extra days and then headed down to Los Angeles for the Women in Pain conference… BUT not before meeting one of my favorite people in the world, Kate McCombs!
We had dinner the night before the conference and then spent basically the whole next day together, from the conference to just hanging out.
There are so many people in my life that mean so much to me, but meeting Kate in person is something that I cannot even put into words. We are so similar and so in-tune with each other, bringing out the most compassionate parts of ourselves to deal not only with our own illnesses but helping others as well.
I stayed an extra night to spend time on the Queen Mary because I have a ghost hunting problem… though I was so tired, I didn’t try this time!
In October, I was lucky enough to attend the Joint Decisions Empowerment Summit in Philadelphia.
One of my favorite parts of the whole experience was spending time doing the Bioexperience tour at Janssen! That alone needs its own blog post because it was absolutely fascinating to see how much pharmaceutical companies care about us – how we’re going to administer treatments, costs, protective measures, and more.
Well, and then I got to spend time with some of my absolute favorite people in the world from Janssen, Tonic, and us Joint Decisions/Creaky Joints peeps!
I got a new nickname from Kenzie, too: whimsical unicorn warrior.
It’s my absolute favorite thing ever.
I already have written about my experience at the summit with the What I Be project, so make sure to check that out, too.
And then it was back to New York, this time for a project with Healthline. A pharma company wanted to hear more about the patient (and patient advocate/activist) experience. I was lucky to hang out with some amazing people like Emily Lemiska and MarlaJan Wexler:
I had been jokingly looking at Hamilton ticket prices because I am obsessed with the play as we all know.
Turns out that it was just slightly less than my stipend to go see it alone while I was in New York so guess what I did?
I FUCKING SAW HAMILTON ON BROADWAY BITCHES.
It was so amazing. I cannot even fully put the experience into words. It was well worth the post-show in-flight migraine.
I had a big week last week, conference-wise and seeing Hamilton and more!
When I got back, I was able to do some podcasting, work on homework, and, you know, just casually meet my favorite person in the world – Joe Biden.
This picture was a big fucking deal y’all. YES.
Later this week, I’m headed back to New York – this time for a family vacation with T’s mom and stepdad to visit his sister and her dude who live in Queens. I am so excited to go travel where I’m not necessarily tweeting and such but able to be silly.
More conferences are on the way, though thankfully not until 2017. I’m ready to expand the work that I do and help others as much as I can.
Disclaimer time: the Arthritis Foundation, Stanford Medicine X, and Women in Pain all paid for my travels to and/or from their conferences. Janssen Pharmaceuticals paid for my travels to the Joint Decisions Empowerment Summit and provided perks while traveling. Healthline paid for my travel as well as providing me a stipend for my time in New York. All opinions here, though, are mine and mine alone.

 

Advocacy #HAWMC

Posted on by Grayson
Was starting your advocacy journey a hard decision? Were you anxious and hesitant or were you excited and ready to share your story? Tell us how you chose to start advocating for your condition(s).
Honestly, I fell into it.
That phrase explains a lot about my life, too, but it’s true!
As a younger person, I did a TON of advocacy work around women’s right, feminism, sexual health, education, and human rights. It took a long time for me to transition to using those powers for my own health stuff.
I started writing for me and to show T what kinds of things we were dealing with potentially as we began dating. I needed to learn more about my body and have an outlet that was all my own, too. It was because of how rare Still’s Disease is that I encountered other patients. They found me for the most part.
Going into advocacy was really a by-product of raising awareness of what I was dealing with and how dangerous chronic illnesses are or can be. I met people who had no idea that diseases like lupus can be fatal or that pain can cause changes in our brains. I also met people who were incredibly into alternative stuff to the point that they were harming themselves without taking on any treatments.
I began to try to educate more so that we weren’t being taken by snake oil salespeople.
Most of the advocacy work I did in the beginning was online. Most of my stuff is still online, but now I’m able to travel and do so much more in-person work, too. It’s amazing to meet others in person and to talk to them, whether I’ve just met them or have known them for years.
 
Do you do advocacy work? How did you get into it?

 

My Process #HAWMC

Posted on by Grayson
Every great writer has their own process! What’s the blogging process look like for you? Do you set
aside time each week to write or do you wait until the inspiration hits? Do you finish a post in one
night or use the week to perfect it? Do you edit your blogs or just hit publish? Whatever it is you
do, it’s unique to you and we want to learn about it.
Usually, when I write, it is because I have instant (or recent) inspiration. I do have some posts that I prepare sometimes months ahead of time because it is a topic I want to cover but then don’t get to for a while.
Those tend to be those informative posts like “Hey, you should know these insurance terms!”
I try to finish my blog posts in one sitting most of the time, save the above. When I write product reviews, for example, I may take notes in my posts before publishing about what I need to remember to mention – whether that’s my own idea or something I’ve been asked to go over. Still, I almost always do the actual writing portion all at one time.
I’ll edit for grammar and the like, but, usually, do this as I go doing a final once-over at the end.
When I have graphics for my blog, I try to do those either when I come up with the topic idea OR when I’ve come up with a title.
After I initially had come up with those theme days like ‘Meditation Monday,’ I tried to blog several times a week. Now, however, that isn’t always a possibility. And that’s okay!
Do you blog? What’s your process like?

 

What I Be: Weird, Queer, Fat

Posted on by Grayson

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.

 

Review: Axon Optics

Posted on by Grayson

 

 

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!

 

 

#JointDecisions Chat Tuesday!

Posted on by Grayson

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.

 

I’m off to the 2016 Joint Decisions Empowerment Summit

Posted on by Grayson
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!

 

World Arthritis Day

Posted on by Grayson

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 eliminate 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.