Friday, January 13, 2017

Repealing the ACA will kill disabled people


With the proposed changes coming to healthcare, I can't afford to tiptoe around the situation.

Repealing the Patient Protection and Affordable Care Act will kill disabled people.

50 million Americans with disabilities depend on the protections that the ACA provides. The CDC recently came out with statistics that show that nearly half of all Americans live with at least one chronic illness - and they depend on the ACA, too.

Before the ACA went into effect - before I even started this site - I was uninsured for a while. While my father kept insurance on me until I was 18 as a part of child support, mother didn't utilize it at all. Without continuity of care, I suffered immensely - not just pain but issues that wouldn't have happened had she gotten me the right (or any) medical care.

Once I hit 18 and got into college, I was concerned about what to do. I knew I needed to get medical care but couldn't afford anything.

2007 Kirsten
When I met T, I started trying to get quotes from insurance companies. I was very upfront about the fact that I had multiple chronic illnesses... which led to a lot of sad phone calls and emails. One memorable phone call with one representative got me to give up. I was told that it would be $2200 a month for coverage and that it would not cover anything related to my pre-existing conditions.

Since my diseases affect every single part of my body, there was no point to this. I obviously couldn't afford it anyway.

I eventually was able to get coverage through our college's partnership with an insurance company. It didn't cover much, though, and I began to go into medical debt quickly. Luckily, some of that was forgiven as the hospital I saw my first adult rheumatologist at had a great forgiveness plan for us poor people.

Thank you Froedert Hospital.

Still, it was a constant fight. I had to get things rediagnosed or diagnosed at all. This meant far more visits than the average person has in a year with the accompanying blood draws and everything. I moved which meant transferring that care and then dealing with insurance not covering a lot...

which meant more medical debt (that we only recently paid off).


I'm lucky enough that I'm married to someone whose insurance covers me. It's good insurance and allows me to have access to the specialists I need to see.

Not everyone is so lucky.

Others with disabilities or chronic illnesses rely on more services than I usually need. Others are better at seeking out the care they need than I am. Others simply have different needs that wind up costing more like wheelchairs and other equipment - along with the medical visits for physical therapy, etc. 

Hell, if T and I ever got divorced? I'd be practically as good as dead. There are worries that these efforts will force those of us who need healthcare access to stay in abusive relationships because, like me, they need that coverage.

My family will still be affected by the ACA repeal. People in my family or group of friends will lose medical care making access to the life-saving medications and treatments they need nearly impossible. More people will go bankrupt or lose their homes as a result of medical issues. Others will no longer be able to afford to live in more accessible housing, accessible transportation, and more.

Some will die.

The ACA provides protections for many people - things that are often overlooked when we talk repeal. 

It provides access to free contraception, yes, and better access to reproductive health care - but it also allows children up to age 26 to stay on their parents' insurance plans. 

It provides coverage for people through subsidies, but also (finally) makes good on a centuries' old promise to Native Americans to cover their health needs. 

Clinics in rural areas who depend on the ACA protections to keep them going will go out of business and jobs will be lost.

The things I care about the most? CHIP - the Children's Health Insurance Program - and coverage for our pre-existing conditions? Those were basically just dumped.

If little Kirsten was young today and lived with a parent that wasn't abusive? She would be incredibly screwed.

It's not enough for those now running our nation to take progress back - they have to enact legislation that will remove protections for those of us with disabilities and pre-existing conditions. They have to kill us before they'll be happy.

Write to your legislators. Call them. Tell them how this will affect you and nearly half the nation. Tell them that, like me, you're not ready to die for their petty politics and racist ideologies.






Thursday, January 5, 2017

Struggling


I've been fairly absent from social media and such lately and, honestly, it's because I'm struggling a lot - physically, emotionally, mentally.

Coming back from Portland was a mess - delayed flights, sleeping in the airport, etc. I became literally exhausted. It was really bad. On top of that, the longest flight (Portland to Chicago) had the heat on like 85 degrees. 

I don't do well with heat, y'all.

My body is so used to the pacific time zone that it's been an adjustment to try to get back on central time. 

Fatigue and pain keep sneaking back in and stealing away moments, hours, days.

My emotions are in a rough spot, too.

Portland was so full of nourishment and love. Wisconsin is... not. Don't get me wrong - I am loved here and feel nourished, but it is somehow lesser than when I travel. I don't have people here excited really to see me or learn from me as much. 

This is where I come to recharge, but it feels draining to me right now.

Part of it is that the abandonment feels are high lately - something that I haven't really struggled with during the holidays. Many of the people I've been physically close to in the past are all over the world and others just aren't really there for me right now. It's hard for me to communicate what I need and I know that's a big part of it.

It's messing with my head. I get stuck on thoughts and can't get them out. I have these imaginary conversations of what I would say to people if I just had the willpower to tell them - ways I need help or they've hurt me or any number of things. 

How can I be so blunt online but not in my interpersonal relationships?

Growing up in abuse fucks you up for life, friends.

Since the election, I have been doing a lot of emotional work for others - checking in on people and working on ways to add to the resistance against he-who-must-not-be-named.

We need support but also need to take care of us, so right now I'm trying to practice what I preach.

I'll be around, but I might be slower to respond to things.






Friday, December 23, 2016

2016 in Review

This year has been hella weird. I've gotten to grow and move on with some big projects, trying new things, traveling, and more... but also Cheeto Voldemort....

(source)
I can't.

I've been pretty absent here lately. Part of it is how much attention Chronic Sex (and self-care) needs, but a lot of it is that I'm spending a lot of time doing emotional work with people really affected by the election. Some of us potentially stand to lose our lives because of our incoming walking contradiction of a president-elect. I've been in contact with people nearly non-stop since November 8th, and that's really hard.

We are scared, exhausted, nauseated.

We don't have the ability to give someone a chance when we are literally fighting for our lives.

The lack of compassion, empathy, and inclusivity/intersectionality within groups fighting DT is incredibly disturbing and adding another layer onto the fight. Many of us are having to fight to even be recognized as members of the fight against DT.

Our checks and balances can't do much when everything is controlled by one party, and that scares the shit out of me... so, for now, we keep organizing. We keep checking in on each other and providing emotional safe havens.

We don't have another choice.


Anyway... At the beginning of the year, I learned how to swim (kinda). I wasn't able to keep up with the classes because of how it was affecting my health. Still, I felt really cool about being able to finally conquer that fun thing...ish.

I intertwined my Trekkie nature with my PTSD, sharing initial feels about how Seven of Nine is treated for PTSD earlier in the year and final feels recently. I had some weird feels about how I've personified 'Arthur' (my arthritis fun) in the past - and how that has changed, too.

I got to head to New York writing for a conference and, while there, got to meet some great people I'm happy to call pals. I have been lucky enough to head back to the big apple twice this year, once just for funsies with family... and I basically never stopped talking about Hamilton... but then got to see it on my second NYC trip!

I got to attend some great conferences - ePharmaHealtheVoices, Self Care Mvmt in Toronto, both Juvenile Arthritis Conferences, Women in Pain, Stanford MedX, Joint Decisions Empowerment Summit, and more. I've traveled all over lately and I am loving it. 

I even got to spend time with one of my favorite humans, Kate McCombs, in Portland running some of her amazing Tea & Empathy workshops. The Arthritis Foundation chose me as the adult honoree for the Walk to Cure Arthritis in May, too.

Meeting some great people has definitely been a part of my list this year, too, from David Tennant and Alex Kingston to Vice President Joe Biden to Kate McCombs to Karen Duffy and more.


My blog over on Creaky Joints (which has been a little neglected lately) was voted one of the '10 Arthritis Blogs We Can't Stop Reading' by Everyday Health! I've been featured several places this year, too - Kids Get Arthritis, Too, Kinkly, BlogHer, and more.

Chronic Sex is up and running with a podcast, chats, affiliates, and more. I've been getting some international attention for that and it's really surreal. A few weeks ago, Kate and I went and heard Dan Savage and some colleagues talk. Instead of feeling unworthy, I felt like I belonged. These people knew who I was and the work I was doing and were excited to meet me.

It was hella weird and validating at the same time. 

Some of my favorite products ever got tested by me like healing CBD lotion, Axon Optics migraine glasses, and the Oska Pulse. I also wrote my first e-book on self-love with chronic illness fun.

Our family went through some loss this year - Aunt B and Oreo. Because of Aunt B and her graciousness, we had enough money for me to leave my day job and really focus on what I want to do with my life. Because of leaving my job, I was able to focus on spending time and loving every second of every single day with our boys - especially Oreo.

It's not like my relationship with T has ever sucked, but we've definitely both made strides this year to connect in new and different ways. A lot of this has to do with me learning to let him in a little better, but also ironically with my journey to being a sex educator. I find that we're both more open to questions and not as hurt by answers. Consent-based communication rocks.

New adventures await me in 2017, from conferences to friend vacations to hard work and more. I only hope we can all make it to this time next year unscathed.