Monday, May 15, 2017

Does Your Doctor Get Kickbacks?

Today, I want to share about this site called Open Payments. It is a badass "federally run transparency program that collects information about these financial relationships" to make it free and easy to find.

Here's why this is important - doctors who get kickbacks or have relationships with organizations are more likely to prescribe medications from certain pharma brands, etc. This doesn't necessarily imply improper relations. I'm more likely, for example, to recommend products when I've had more interactions with their brands. 

Still, this is an important issue to note. As patients seeing physicians who aren't infallible, we need this information. One of my former doctors is on the list and, while I can't see what ties there were, it explains some of the interactions we had. 

Make sure to visit Open Payments and see what your doc's history of involvement with health care organizations like pharma is. Note that the data is currently available up to 2015.

Thursday, May 11, 2017

#HealtheVoices17 Recap

HealtheVoices 17 was a few weeks ago and I'm still processing it.

It was awesome.

My pal Kenzie and I drove down together. It made the drive even better to have such great company!

It also made it easier to drag all my meds along!

Right as we got to the hotel, I hustled upstairs to meet with my fellow panel members for our stigma panel prep session. From there, I ran up and changed for dinner with the Joint Decisions crew! It was a great night. 

My first major order of business the next day was obviously to snag my Do-Rite Donuts!

The first order of business was to meet up and spend time together for breakfast. We heard from Caroline Pavis and Rhonda Waters, two of my favorite people in the entire world. 

Rhonda reminded us of how we're like redwood trees. Did you know these trees have very shallow roots, despite being incredibly tall? The secret to their long-lasting strength is that those shallow roots are all connected.

Just like us.

It's some powerful stuff.

C/O Daniel Garza
In the afternoon, me and the other cuties up above got together for our panel on stigma. We talked about stigma in the media, from doctors, and even from our fellow patients. 

Next up, we heard from Dr. Tiffany Taft on some much-needed self-care stuff.

We talked a lot about how to change the way we talk to ourselves and ways to focus on ourselves - at least some of the time.

I wish we had a whole conference on stigma and self-care alone. It's so needed.

That evening, we ate delicious food together and heard from Luke Escombe - one of the most hilarious people I've ever met. He also started off our open mic night! This was the first year they've done this and it was a hit.

Unfortunately, my capstone was due the same weekend as the conference, so I spent a lot of the nights working on my paper instead of spending time with friends.

Saturday was full of multiple sessions. My two favorite were Josh Robbins' session on 'Here's How to Get Video Done' and Heather Gabel's 'Creating Credible, Strong Content – How to Interpret and Share Scientific Data with Your Audiences.'

I popped down to do a few interviews.

And then we all went out for dinner at Wildfire - which was delicious!

Sunday went by quickly but was full of coming together to say goodbye. 

The biggest news of the day was that Janssen started the HealtheVoices Impact Fund. The $30,000 fund is available for individual patients to accomplish their advocacy goals. Yes, before you ask, I already have some ideas in the works.


We talked about how to take care of each other and ourselves better. Josh even made us all sign cards saying we'd do that! 

This is part of why I love HealtheVoices - being able to focus on our self-care and the connections we make.

It's so great to connect with other health activists and spend time with dear friends.

I'm so grateful to Janssen and Johnson & Johnson for hosting this conference as well as the various supporters such as Wisdo and Healthline.

My Top 5 Takeaways:

1. It's okay to take some time for myself.

2. We're not alone in our fight - ask for help.

3. It's easier to do more when we can support each other and feel supported.

4. I need to learn how to create some boundaries cause I don't have them.

5. When you do health activism, you're bound to have people who disagree with or hate you... but you're also bound to have people who admire you and consider you their hero. They're the ones to listen to.

PS: Janssen is paying my travel expenses for this conference. All thoughts and opinions expressed here or on social media are my own and do not reflect the thoughts or opinions of Janssen or Johnson and Johnson. 

Wednesday, May 10, 2017

One Step Closer to Master Kirsten

I've been working on my capstone for the last few weeks. Today, I got probably the best email - I no longer need to make edits AKA my capstone is done!

My paper evaluates the Patient Activation Measure - a tool that helps measure how engaged a patient is in their own care - as well as how Patient Engagement improves the overall health of patients. It's a case study which means it relies on other people's research but pulls it together in a way that hasn't been done before.

I try to not get cocky, but it's pretty badass.

I have two more classes to wrap up here. By the end of the summer, though, I'll be Master Kirsten!

Friday, May 5, 2017

We Disability Rights Activists Knew the GOP Wanted Us Dead Already

Yesterday, the House passed their bullshit health bill

This bill targets special education, turns sexual assault and C-sections into pre-existing conditions, and affects even those on employer-based plans. It affects the LGBT+ community even more. They've even had the audacity to exclude themselves. The only potential upside is that at least the Senate won't be voting on this specific bill. 

Still, it's what we disability rights activists have been saying for a long time - that eugenics-related bills have been passed to harm us for eons. The Nazis practiced and 'perfected' their Holocaust shit on us. In the 90's - yes, the 1990's - we had to harm ourselves in public by crawling on Washington to get any protections. 

This is another in a long line. And another in a long line that could've been avoided had people been listening to us to begin with... but that's another story.

As someone who has a whole shit ton to lose from this bill, I'm pissed. But I'm fired up and ready to go. I hope you are, too, cause it's gonna take all of us to fight this.

Here's how:

Talk about shit on social media. Use hashtags like #healthhasnoparty #iamapreexistingcondition or #ifidiefrommypreexistingcondition. Tag your representatives, local news outlets, and major news outlets.

Make videos.

Write letters to the editor. Get on the news.

Contact your Senators. Do it today. Do it tomorrow and every single day, right up to the vote.

Remember that you can text RESIST to 50409 to utilize Resist Bot, which will compile your thoughts into a fax. This is far more likely to be read than email - and easier for many of us than calling.

After you contact each day, take some time to lick your wounds. We all have them right now - and we all need to take care of ourselves.

Tuesday, May 2, 2017

May: The Ultimate Awareness Month

May 1st marks the start of an awareness month practically tailor made for me - asthma & allergies, arthritis, mental health, and fibromyalgia.

My asthma is, honestly, getting worse. When I eat or laugh or sneeze, I have a hard time getting my breath back to normal... which is probably a sign that I need to use my inhaler more. My allergies always pick up this time of year, though tend to affect my asthma more than causing problems on their own.

My arthritis is steady. I've come a long way in two years, thanks to my daily injection and other medications. When the weather is rainy and humidity is high, though, I'm reminded of my limitations - especially at night, when pain relief just won't come. My hands, neck, hips, and knees are furious.

Mentally, I'm in a good place. Depression and anxiety are staying at bay for the most part, thanks to all the things I'm doing. My PTSD is another story, but that's alright. With April being my birthday month and May being the month I cut contact with Mother (and having Mother's Day in it), I know this won't be an easy time of year.

My fibromyalgia is doing okay right now. I have had fewer skin-aggravating symptoms like allodynia, which is that thing when normal sensations like clothing on your skin or holding hands can feel excruciatingly painful. Today, that's a thing that's started and is spreading. I'll push through cause I have some errands to run, but I'll be glad when I'm home and can get naked as quickly as possible. I wanted to shower today, but I don't know that I'll be able to - the water feels like daggers on allodynia-affected skin.

I always feel conflicted when people say things like "don't let your disease define you." My conditions all do - they've defined my life from a very young age. They've also given me a level of appreciation and compassion that isn't always a thing for abled people. I've gotten to do amazing things, meet the best people, and enact some real change - things that I don't know I'd be interested in if I was okay.