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....

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.

Wednesday, December 21, 2016

Captain Janeway Sucks

white background - red text 'captain janeway sucks' - a saturn-like planet with rings sits below the text next to earth - on the right side of the photo stands a pleased Janeway, hair in a bun, with her arms crossed in her starfleet uniform

Growing up, I always loved Captain Janeway. It was one of those naive baby-feminist things - finally, there is a female captain! I felt like she was the epitome of sassy and strong, just what a starship captain with a vagina should be naturally.

Earlier this year, I wrote a post entitled The Raven about the Star Trek: Voyager episode of the same name. We were in season four of the seven season series and Seven of Nine was just going through her initial Post-Traumatic Stress fun. This was especially important as I had finally been diagnosed with PTSD in 2015.

I started to identify with Seven, the hot chick, for the first time in my life.

I never identified with Seven before. She was the unattainable hot girl with more logic than a Vulcan. She had these amazing outfits and cool face makeup. She was out of reach. Because of our shared diagnosis, though, she became incredibly relatable.

The small child in me - the one who was going through all of these PTSD episodes while Voyager was on - cringes so much at all of this. As soon as The Raven hit our television screen earlier this year, I knew she had PTSD. I said it before the Doctor even did once given both her reactions and the findings of his scans.

Poor T, watching all of these with me. I like to think these episodes helped me explain some PTSD things. I'm sure it really wasn't fun to watch with me, though.

In the following episodes, most people on the ship are helpful with Seven. They understand that some of her reactions aren't things she can control and go out of their way to help when they can. It takes a while for most, sure, but the adventures Voyager faces seem to speed up this acceptance. The Doctor, a holograph, becomes both her biggest fanboy and advocate.

Captain Janeway does not advocate for Seven, quite arguably the most vulnerable person on the crew. Instead, Seven finds herself used and abused not unlike she did with the Borg. One could argue that, on Voyager, using Seven in these ways makes their actions even more reprehensible than the Borg - at least with them, Seven wasn't really conscious of what was going on. She didn't have rights to be taken away.

In Retrospect, Seven's PTSD is even further defined by a violation from a trader. Instead of really championing for helping Seven, Janeway takes the offender's side of things pretty quickly. In addition to this, Janeway removes Seven's free will in several episodes, using Seven to accomplish whatever means she wishes.

I'm not sure why this is. Is there a female jealousy component here, that Seven is logical, intelligent, and beautiful? Does Janeway feel threatened? Or, like some parents, does she feel as though Seven's entire life and being should somehow be hers?

I don't know.

I do know this is all in stark contrast to Captain Picard who works tirelessly to help the members of his crew understand life. I can't help but wonder how Data would have done on Voyager instead of the Enterprise. I'm sure Janeway would have been proud of him, but it seems as though she would have also manipulated him where possible, too.

Picard isn't without his faults, but it certainly seems Seven would have done better had he discovered her during his time as Locutus of Borg.

Picard stares at a Borg being transported onto the Enterprise and says 'Seven of Nine' as the Borg, in fact Seven, responds 'Locutus'

As a child, I so loved Voyager. I didn't really pay attention to the plot, but it was Star Trek - my favorite. I paid much more attention to The Next Generation episodes we sometimes watched as a family. 

It's hard for me to admit how much I dislike Janeway now. It's interesting the number of things that I had to endure to get me to the point of stating how awful she is - religious/philosophy studies, ethical ideals, finally putting a name to my PTSD and getting away from abuse, etc. It's really hard to stomach from an intersectional feminist point of view, too, that Janeway would be so dismissive of a fellow female.

It's not unlike our current political fun. Slightly off-topic, but this week alone several of the anti-Trump groups have perpetuated stigmas against us disabled and chronically ill people. Because they have degrees, they assume they're knowledgeable in marginalization and don't think they're doing anything wrong (or, on the flipside, some don't care).

What we really need - us anti-Trump cripples - is for people to listen. Hear us when we talk about what we are dealing with. Support us and give us a platform to talk about what's happening, what may happen, and what we can do to avoid the worst of the worst. 

That's really not different than what Seven needed - or what I need during PTSD time. It doesn't seem as though that is something Janeway is capable of providing, at least to Seven.

Have you ever encountered a television show that depicted one of your diagnoses? How did they do? How did this make you feel?

Monday, December 19, 2016

5 Questions to Ask a New Doctor

We've all been there - you're sitting at home the night before seeing a new physician and trying to prep. You're not sure what questions you should ask them and, frankly, you're more concerned with trying to express your entire medical history in half an hour.

Fear no more! Here are my 5 most important questions.

Do you believe in XYZ diagnosis?

Fibromyalgia has a history of not being believed as a diagnosis. There are, unfortunately, many doctors who still believe this is a fake diagnosis essentially for female hysteria and hypochondria.

If you encounter an older male doctor especially and have fibro, ask this question.

Do you feel comfortable taking on my case?

This is more applicable than the above for most people. Humans are complicated beings. We have multiple medical/health issues, sources of stress, medications, and more. For those of us with rarer conditions, this is a pivotal question to ask.

When I was investigating new rheumatologists this time two years ago, I called an office and asked if they could see if this doctor would be comfortable seeing someone with my conglomeration of fun things. I expected to get a call back from a medical assistant during a lull or maybe the nurse, but doc called me back. She wanted to ask more and we have a pretty long conversation.

She outlined for me right away what she would do, what she would avoid, and more. She was upset that I wasn't on one of the SJIA-approved medications and wanted to try Kineret/Anakinra right away.

Needless to say, the amount of care she took in speaking with me before I was even her patient led to my decision to see her.

What is your communication style like?

I think it's important for people to at least be aware of communication preferences or styles that we each may have. This is important in any relationship but can be vital in healthcare.

I mean, this stuff gets into life and death sometimes y'all.

My rheumy and I utilize the electronic medical record system known as MyChart. It's a widespread EMR system that is fully customizable and happens to be local-ish for us, too. It winds up being like sending an email and is pretty secure. In her office, I usually get same-day responses or (rarely) may have to wait until the next day.

In other offices, it can take up to a week for a response.

This is definitely a part of why it's important to see what your doc wants to know in what way(s).

When XYZ happens, do you prefer I contact you or another physician?

This is one that I frankly need to ask all my current healthcare peeps. 

I see my rheumy and related healthcare providers most often. This means that I sometimes am not sure who I should alert about certain things. Sure, things like sinus infections, etc, usually wind up warranting a trip to urgent care since I'm on immunosuppressants. Injuries do, too, due to their severity, like when I split open my foot.

But what about a new symptom that could be a rheumy thing? Do I go GP first, even though she's really inaccessible as far as schedule?

Some people really rely on their specialists due to the crummy quality of their primary care selection. I once had an old PCP tell me 1) this abscess I clearly had was a pimple, and, 2) to take my biologic as scheduled.

He also laughed literally in my face during that, so he was definitely fired.

The point is, we have to start asking this. It's just as important as who to contact first in an emergency.

Are my medications ones that you feel comfortable prescribing?

This is one that I wish I had asked before seeing my new rheumy. The non-steroidal anti-inflammatory (NSAID) and Lyrica that I take several times daily aren't things doc feels awesome about. That said, she knows I might not be alive without them, so she prescribes them but always with a goal of lowering them eventually.

The supply muscle relaxers I had 'just in case' is currently dwindling and she's not down with prescribing those like my last doc was.

This is something that I will have to ask my primary care doctor about instead. I believe that she would be down with that, especially if I were to tell her how long this last bottle has really lasted.

What questions do you ask new healthcare peeps? Are there any you've learned to ask the hard way?

Saturday, December 17, 2016

When in Oregon

I grew up in Oregon but have not visited since 2010. T and I went out there for two weeks after I graduated college as his gift to me. It was a really nice visit, even though we had to see family that I didn't much care to see.

I'm sure Uncle Jim doesn't realize how harmful his words were that Thanksgiving he brought food over for my grandma but not for my sister and me. We missed turkey day at his place because I was throwing up. I wanted to stay home and sis wanted to stay home to take care of me. Grandma freaked out and, in a huff, decided we wouldn't go at all.

There are so many reasons I don't talk to most of my family.

Anyway, I really haven't had a reason to be back, seeing as I couldn't make my ten-year reunion earlier this year. I have had a few friends I wanted to visit, but not enough to spend money on a ticket just for that when I'm not working.

You can read more about why I was there over on Chronic Sex. I'm sensitive to the fact that not everyone is interested in my adventures as a budding sex educator and icon (not my words).

One thing that has come about in Oregon is the legalization of marijuana for recreational use.

One thing I had never tried, despite growing up in Oregon? Pot.

I visited a dispensary whose website was really focused on helping those of us dealing with pain in addition to the average consumer. When I told the gal I had no idea what I was doing there - and explained - she really took to educating me a lot about pot and the various products there are for pain relief.

I picked up a salve - which I threw out because it smelled a lot danker than the test model in the store - and some edibles. Edibles are when pot has been put into another item like candy or brownies.

When I was sure that I was done traveling around for the night, I ordered some pizza and popped an edible. 

The only effect I really noticed was feeling loose and maybe a little giggly. Mostly, though, I was tired and probably should have tried this not at my internal clock's midnight.

Enjoying the soft sheets was definitely a highlight, too. I live-tweeted a bit of this first try which was fun.

I did have a nightmare that felt very real. However, the way I handled it was much differently than I have sober. I woke up, texted T (who I knew was likely still asleep), and then snuggled back down and went back to sleep.

I didn't stay up crying or freaking out at all.

The next night, I set up a lot earlier for my foray into pot. I made some food, worked on packing a little bit, and continued my habit of watching Adult Swim.

Last night, I slept like a goddamned baby. I got the longest uninterrupted sleep I have had in a very long time. I was comfortable, cozy, and enjoying texting my loved ones positive and affirming things.

I felt very grounded, very sure of myself, and very present. I also felt like I was owning some of the positive things my friends have said about me and the work I do. I really began to feel like I was important and that it was okay to accept these compliments.

That's not something that I've really been able to do before this trip.

My body slowly became comfortably numb. The few pains I had dissipated. My body felt loose in a positive way. 

I really didn't feel any mind-altering stuff at all.

This is because of the kind of edible I got. It had 5 parts CBD to 3 parts THC. For those of you unfamiliar with pot-lingo, THC is what gets you high. CBD, though, doesn't; it decreases anxiety and short-term memory issues - along with having amazing pain-relief benefits. It's known to have anti-inflammatory properties, too. 

I consumed something much more medicinal than recreational, though it was available without a medical card - which still is a thing you need for some of the stronger stuff.

So, what's my verdict?

It's hard to give a full verdict when I have been having less pain lately, etc. I recognize that I cannot necessarily say exactly how much pain was relieved through my using pot two nights in a row.

I did get a little sick to my stomach, having to visit the bathroom a bit more often. The second night, I really got hit hard with that pot taste in my edible and nearly threw up because of it. 

I'm not really good at this drug thing.

I had fewer side effects with pot than I have had with opiates. I was less high with pot than with opiates.

If people want to look at cracking down on opiates for chronic pain, they need to begin offering us an alternative. Frankly, pot seems like it could be one for some of us. Maybe someday, when Scott Walker is no longer in power in Wisconsin, they will join the states around them and - and the very least - allow us to have medical marijuana. If they do, I will probably be one of the first people to sign up.

Until then, I know that I will have ways to manage my pain when traveling to states like Oregon, Washington, and Colorado for conferences and more.

Is pot legal where you are, at least medically? Have you used it for pain relief? What did YOU think?

Friday, December 16, 2016

Review: The Healthcare Cure

This is a book review of The Healthcare Cure: How Sharing Information Can Make the System Work Better by Jeff Margolis. I was not compensated in any way for this review.

If you've ever wanted to understand how the healthcare system works, systems thinking, and more, this is a book you need to pickup. The first part of the book goes over current-state and the problems we encounter in healthcare.

It's also a great primer on the economics of healthcare, something that people tend to pay big money to better understand.

Terms are defined so that even some of the most complicated parts of healthcare are understandable. Comparisons to the auto industry, parables, and more are made. 

In chapter 5, the author goes over the perspectives of all involved in healthcare - consumers, providers, employers, brokers. One could argue that this doesn't necessarily touch everyone in healthcare and they'd be right, but this works for the author's purpose. 

After going over key terms and explaining the current-state of the system, the author begins to talk about what he sees as the cure: Integrated Healthcare Management (IHM). One reassurance Margolis gives us that we need right now is that IHM will be achievable even if the Patient Protection and Affordable Care Act bites the dust. 

IHM helps to further what we patients want - better decision-making opportunities supported by our healthcare teams, eliminating unneeded variation in our care, and making the whole system run more smoothly.

I can tell you this is what providers and administrators want, too. The system is so broken and no one is happy with it. 

What is IHM?

It's a form of healthcare that helps to promote better health and quality of care over more care in general. By helping to eliminate the silos within the system, we will be able to better participate in our own care. With the silos gone, it also helps us access our data! And, ideally for Margolis, healthcare plans would be customizable according to what we need.

I'm not sure about that last part. Sure, it would be nice for me to not have to pay for prenatal coverage knowing that I'll probably not have kids, but what happens if I do get pregnant then? Insurance plans generally don't let you change quickly enough to get the right coverage. Plus, frankly, I don't mind paying for that coverage because I know it helps cover those who do utilize those services.

Really, though, IHM helps us all to focus on the same thing - value. Right now, each piece is focused on different things. 

I fear, though, that with the new administration coming in, this won't be anywhere near the focus for our healthcare system... especially because it will eliminate overhead and unneeded spending.

Some of the personal responsibility touched on in the last chapter was... unnerving, mostly because it was ableist in nature. Yes, taking responsibility for our day-to-day health and the like will lead to better healthcare outcomes, etc, but that leaves out those of us who can't get in front of our health fun and the like. 

Sure, it helps for us to take care of ourselves, too, but we have to do that to stay alive - not for better outcomes.

All in all, I found this book to be an informative look at what is currently ailing our healthcare system and a potential for a cure. Like many other purported cures, this needs much more research and tweaking.

Favorite quotes:

"Not only are we humans unable to access our medical records when needed, there is also a tremendous degree of variation in the treatment we receive, even among people with the same conditions and similar health backgrounds. Treatment of humans... is not consistently based on 'best practices' (the treatment that research has shown to be most effective for a particular condition given a patient's age, overall health and family history of disease). Studies shoe that although healthcare experts have researched and documented best practices for a wide variety of medical conditions, patients often receive treatment that is different from what is proven to be most effective." (38)

"Hoping that other people are going to solve the healthcare crisis for us, either at a national, or individual level, is not a plan." (195)

Wednesday, December 7, 2016

Review - Chronic Christmas: Surviving the Holidays with a Chronic Illness by Lene Andersen

When my pal Lene asked me to review her book, Chronic Christmas: Surviving the Holidays with a Chronic Illness, I was like YES. It took me a while to get to it because I haven't been as good at priorities lately - or, perhaps, I've been too good. After all, part of it was cause I was doing self-care stuff.

The whole point of Chronic Christmas can be boiled down to these great lines from the intro:

Each chapter will start out with a section dedicated to you, the reader who has a chronic illness, sharing something you can do to help yourself enjoy the season. And then there will be another section for those who'd like to help you, with some tips along the same theme (Kindle Locations 50-52).

So much of the time, items are for us OR our loved ones. There is little to no crossover which, frankly, is sad. We need more of those kinds of things that we can enjoy with our loved ones or share with them without any empathy or compassion training needed.

In addition to recommendations such as online shopping for us sick peeps, Lene weaves in ideas like our friends helping us out by going shopping with us or even for us. She even includes family recipes that look heavenly.

One of my favorite parts is where Lene talks gifts - specifically what our non-ill pals can get us for holidays. Gift certificates, subscription boxes, books, and even helping with our medical expenses make the list. We often don't think of giving gift cards like those pre-loaded Visa cards, but I can't help but think that those would be so much more helpful for us than our loved ones know.

I mean, I'd likely wind up buying the guinea pigs fun things, but they are a part of my life with illness, too. They aren't as expensive as other pets, but they sure do love to eat!

In the end, what Lene gives us is a sense of hygge, or that coziness that comes with connection, love, and support. To truly do this, we must embrace how things are (or good enough) while learning to ask for and receive help.