Saturday, March 28, 2015

You need to watch The Unbreakable Kimmy Scmidt

I've got a new obsession - The Unbreakable Kimmy Schmidt. The show follows Kimmy as she tries to start living a normal life after being trapped in a bunker for 15 years by a doomsday reverend. In the first episode, she and the three other 'mole women' appear on the Today show. As their shuttle leaves the set and is driving to the airport, she has them pull over and decides to stay in New York. Everyone back in Indiana, she's afraid, will always see her as a victim. She wants to be someone other than that.


Throughout the show, Kimmy has a number of PTSD episodes. They, and her social awkwardness, interfere with work, her love life, and more. She takes a job as a nanny for a rich family and moves in with Titus, a fantastic singer whose life-long dream of hitting Broadway keeps getting smashed.


I actually started watching this show mid-PTSD attack. I couldn't get a sexual assault experience out of my head. I knew that this show, while funny, also addressed PTSD issues. I thought it could snap me out of the flashbacks, and I was right.

This show is funny, but it also deals with some hard topics. She mentions a few times that there was 'weird sex stuff' when she was being held, but the show doesn't focus on that. It doesn't focus on her having to live with strangers or the logistics of girls mentally handling captivity. The whole show focuses on her life afterwards. She's working to move on, fit in, and make something of herself, even though she's still got so much growing up to do.


There is a scene in the first episode that resonated with me really well. She hasn't told her roommate about her past (and really doesn't tell anyone) because she wants to be normal. She goes through being robbed and then losing her job, and comes back to the apartment freaking out. She goes into a rant talking to herself about how she'll never be normal.


It resonated with me so well because I have these often - not as often as I used to, but still at least once every day.

I also try to rap far more than this white girl maybe should.


But, I mean, clearly Kimmy and I both got skills so why hide them. Am I right?

We're so similar though - it's almost creepy.

I wasn't kept in a bunker for 15 years, but I was homeschooled and cut off from others for about seven years - and not allowed to do much even after that. I wasn't abused by Reverend Richard Wayne Gary Wayne, but I was abused by another little girl growing up in addition to my mother's (now finally) ex-boyfriend (whom she continued to see after I told her about the abuse). I didn't just magically have to start living on my own with no skills whatsoever - I did have some. I am, though, incredibly dorky just like Kimmy.

I don't know that I'd have it any other way though.


I do still believe in good, in the fact that people are inherently good but we're all just so preoccupied with ourselves and our take out, instant gratification culture to see it. I love bunnies and my piggies and every single animal - even snakes. Most of all, I believe Sandra don't need a man. You can do this all by yourself girl!


And I know that we can get through anything if we just take it tiny steps at a time. You know why? Because we're tough!


And if you still don't feel like you can handle something, you can always try to fool yourself.


I just finished watching the first season, exclusively on Netflix, who was smart enough to order a second season before filming even started. My therapist said she started watching it as well and she definitely appreciated the parallels between her patients' lives and what this girl goes through.

Have you watched it? I'd love to hear what you think about the show!

Friday, March 27, 2015

Welcome to the world Sammy Jay!

Today, my sister gave birth to her second kiddo - a boy named Sam.


He's healthy, vocal, and very into snuggling his momma. He's also very alert and into looking at you! So adorable!

I can't wait to meet you in person in a few months little buddy <3 nbsp="" p="">

Freakout Friday: problems with respect, empathy, and compassion in the chronic illness community

Lately there has been a good amount of frustration within the chronic illness community. Much of that surrounds a level of bullying that shouldn't exist for us. After all, most of us are working towards the same goal - raising awareness and promoting research opportunities to get closer to remission and to cures. Why does it feel like everyone is turning on each other?



Why is it okay to give condolences to parents who have lost their children several times a year until the end of the world, but we feel open to telling those who've lost their friends to get over it at some point? Or that no one cares?

Why is it okay for people to tell you to just 'get over' incredibly huge events in your life? Or move past them? There's a HUGE amount of work involved in that.

Why do some bloggers think it's okay to use your information without asking, and then get upset if you ask for it to be removed? And then badmouth you to others in your specific disease community? (yeah, that happened a while back)

Why is it okay for people to dismiss your feelings?

Why is it okay for people to push positivity in ways that end up bullying those of us who don't?

Why is it okay for people to discuss their own mental health issues and then belittle others for doing so?

Why do we demand explanations from each other?

Why do we make each other feel like explanations or issues aren't worth crap?

Why do we talk to each other with disdain or in short sentences or dismissively instead of supportively?

Why are those who are physically active bullied for being able to do so? Why are those who aren't able to be physically active told their contributing to their disease and essentially being called lazy?

Why do we treat each other poorly enough that some give up advocacy or blogging or being active in our communities?


I feel like this all boils down to a lack of respect, empathy, and compassion. Honestly, I'm so tired of it.

Maybe there are a lot of people out there who don't know what these words mean?




These are all terms we expect our doctors to have and to utilize with us as patients... so why aren't we treating fellow patients accordingly?

We demand these character traits not only in our doctors, but also with our co-workers, our families, and our friends. People like to tout how they don't see their 'friends' in the chronic illness community as any different than their real life friends... I honestly kind of hope they do, because treating your friends in the ways described above isn't alright. It isn't alright to be so dismissive, judgmental, and inconsiderate of any living being's feelings that way, but I would hope that people treat those close to them a little better than that at least. Being a bully on top of lacking these qualities is just sad, especially in this day and age.

And treating one friend like crap and then another super great doesn't make up for the crappy treatment.


Step it up you guys. Seriously.

The only way that we can change the health care systems in the world is to band together, to be a cohesive - and supportive - unit. So let's everybody take a step back and examine your actions towards others and make sure you're not contributing to the problem.

Thursday, March 26, 2015

Therapeutic Thursdays: music as therapy

Music plays a huge role in my life.

When I was very little, I loved our piano. I sang non-stop until I was snapped at so badly by several adults that I stopped singing and became very self-conscious about it, as did my sister. I taught myself to play the piano and immersed myself in that instead, singing quietly.



Music has always been an escape for me, even now. I loved throwing on my headphones and dancing or brooding, depending on my age. As I've gotten older, teaching myself to play the ukulele has been one of the best things I've ever done. I love to play around with songs you don't normally associate with the uke, like Nirvana, Foo Fighters, and hip-hop. (wanna check out some of my music? vids are here and music is here)


Growing to where I am okay with others hearing me sing or even play music has taken a long time. I used to not sing in front of T even, and that's only changed in the last 2 years. Last year I even played in front of complete strangers! It was scary, but also very worth it. I've already got a concert set up for this year!

My journey with music has been very healing. Getting the confidence to play in front of people was scary, but it also pales in comparison to some of the other things I did last year.

I've made a few playlists on Spotify that I LOVE. The biggest though is my Spoonie Fighter playlist (also the reading music to the right of this post!). It not only has songs to match the moods we may go through, but also has uplifting songs to try to get us moving or to cheer us up.

I also have a playlist I've lovingly named 'Bad Bitch' because it makes me feel empowered. It's my feminist bad ass playlist - the one I listen to on my way to appointments, to work, and to big meetings. In short, it's 75% Beyonce and Nicki Minaj because they're both amazing feminist icons. It also helps me get my white girl rapping on.

I actually made this! Artsy me!
I also enjoy watching some of my favorite artists cover other songs:



What are some of your favorite songs? Do you have a playlist to pump you up on a bad day?

Wednesday, March 25, 2015

Wacky Wednesdays: fandoms & chronic illness

Fandoms can play a huge role in how we approach our lives. They can give us motivation or the will to push through the hard times, commiseration and consolation, or help us celebrate and laugh. They are also wonderful for figuring out how to express ourselves in unspoken or unrevealing ways to the right people.


Even if you don't know what a fandom is, you're likely a part of more than one yourself. Are you a Trekkie who named your son after your favorite captain? Would you enjoy a visit to the danger zone? Are you always ready to run in case you encounter a mysterious person with a blue phone box? Is part of you still waiting for your acceptance letter to Hogwarts? Would your dream job be working at the Ministry of Silly Walks?


No matter the fandoms you're a part of, you no doubt agree that they can influence our lives from the type of clothing we wear to our kitchen gadgets and bumper stickers to how we act towards other beings.


When I'm not feeling well, I reach for shows and movies (and music, but that's for a different day!) that I know will cheer me up or guide me through things. With Netflix, DVRs, Hulu, and other technology, we can so readily have these wonderful films and shows at our fingertips.

For much of my life, I've identified with Batman.


I believe that a lot of that stems from feelings of abandonment and neglect. I'm not an orphan, but growing up it sure was easy to feel that way. Batman uses his anger and his frustration for good instead of taking the easy way out and harming others for the hell of it. He struggled with his inner demons, his emotions, and his grief.

As I grew older and time passed, I became very interested in the Harry Potter series. I'm sure that it has to do with the same reasoning.


I was praised as a child for being smart, but then picked on for being naive. There were many similar experiences - and that's just at home. When I went back to school, it got even worse. Harry's story, not dissimilar to Batman's, finds an abused child with some issues saving his friends and protecting others. Not only is he able to make friends, which was a comfort to me reading the fourth book the summer before returning to school, but he's able to stand up to institutionalized norms that don't make sense or refuse to deal with reality. Honestly that helps to fuel some of my patient advocacy work.


Harry's family situation continues to comfort me. There are two terms that I've used in the past to describe my family issues - family of origin (FOO) and family of choice (FOC). Harry's FOO would be the Durleys just as mine wasn't the best. There was a long time where, like Harry, I did most of the things around the house from laundry to cooking to cleaning at a very young age. You get no say in your FOO, and that can be really hard. Your FOC on the other hand is all based on choice. It can definitely include people in your FOO - I like to imagine Harry reconnected with his cousin after the final battle in the book. My sister would be that person for me. My FOC includes so many amazing people (and many of YOU!). It wasn't until really going through the HP films after they'd all come out that I really understood those terms.

HP got me through a lot of hard times. I knew that I could make it because he did. I won't pretend like I can save the world as he does, but I know that I can make an impact. I also know that the impact I have will be greater with my loved ones around me to help. HP encourages me to keep going, to keep pushing, even if I don't feel like it. To make that reminder even more permanent, I got a tattoo referencing the stars from the pages of the HP books. They help serve as a reminder of the tough things that HP and I both went through - that things really did happen. They also help me remember that I'm writing the pages of my book right now. In May of last year, I finished a hard chapter and turned the page.


I could write about Doctor Who, but I just don't have the words. There is so much out there on DW and philosophy and I feel ill prepared to tackle that at the moment.

Being chronically ill can be so isolating. We often feel like we don't participate well in 'real' life because we aren't as healthy in body or mind which puts certain limitations on us. I don't have much of a social life where I live because I'm often low on spoons and/or just ready to go home and not deal with other people at the end of my work day. Sometimes it's because I get sick so easily that I worry about going places at the height of flu/cold/etc seasons.

One of the nice things about fandoms is that no one judges you for spending a whole weekend binge watching episodes of shows on Netflix while hanging out in your PJs, eating Ben & Jerry's or other horribly unhealthy comfort food, and not getting much sleep.


No one judges you for devouring a book and ignoring 'real' life because that book was too good to put down. No one judges you for playing zombie video games from the minute you wake up to the minute you go to sleep.

Most importantly, there are no requirements to fandoms. You can like Orphan Black even if you're not a clone. You can enjoy traveling the 'verse with Mal and the Firefly gang without having an orange hat. You can even find joy in leaping with Spiderman from building to building or fighting baddies with Batman despite the fact that you can't walk.


There *is* a problem with representation though. Disabled people in fandoms generally are the ones in a victim role or have magically overcome their disability in a way to be a hero.


It's not representative of real life. You could argue that it doesn't always need to be, especially as fandoms are often very out there, but some more accurate representation would be nice.

I asked my friend Felix Quinn to write a piece on fandoms as well:

Fandoms as a whole can be a therapeutic thing for people who feel isolated and trapped by their illnesses. For me, they have given me a platform to speak without being cut off due to someone believing I didn’t have it in me to connect dots, etc. My favorite fandoms to participate in are In The Flesh and Steven Universe. But to keep this short, I’ll stick to talking about ITF.


The “In The Flesh” fandom is extraordinarily open about exchanging ideas that would typically (in the mainstream fandoms) be shot down without a second glance. When a show focuses around characters that have to medicate daily in order to function within their realities, it’s going to draw in a certain group. And that group has be amazingly comforting, accepting that we all view this one small piece of media in a different way. And all these conglomerations are right. There is no wrong answer with them, and that’s why I’ve enjoyed participating so much. There is no pretentiousness, no “fandom famous” blogs. It is incredibly accessible to all who want to participate.


The ITF fandom has helped me see it is okay to be comfortable with who I am, and how I am. I think, especially with chronic illnesses that tend to get worse instead of better, there are parts of us that feed into the ableistic idea that, naturally, we are monsters. We are flawed. And for that, we should resign ourselves to a quiet life where our interactions with others are kept to a minimum. To view a piece of media that tells us otherwise about anyone who dares to venture from societies view of “acceptable”, brings people together who feel quite the same. I am very thankful for the small fandom and the beautifully diverse and sometimes complicated conversations that take place. I am thankful, even if I am quiet now and again.

Tuesday, March 24, 2015

Terminology Tuesday: DMARDs (and a warning about antibiotics and C. diff)

DMARD stands for Disease Modifying Anti-Rheumatic Drugs. These drugs help to slow the effects of rheumatic diseases and are often the first lines of defense against further joint damage, especially in adults.


DMARDs include drugs like methotrexate, plaquenil, minocycline, arava, sulfasalazine, imuran, cyclosporine, xeljanz, and the biologics (Enbrel, Humira, Cimzia, Kineret, Orencia, Rituxan, Remicade, and Simponi).


These are likely drugs that you're used to hearing about. For children diagnosed with juvenile arthritis, they often try to stick with an NSAID first (check out next week for more information on that term). Steroids can also be used, but should be used more in the short term to limit side effects.

Someone with a rheumatic disease can end up on a combination of several of these medications, all of which impact your immune system. Steroids even do that!

Many of these drugs are used for other diseases as well, from autoinflammatory/autoimmune to cancer to more.

Rituxan, Remicade, and methotrexate are all used as treatments for some types of cancer in higher doses than a rheumatic patient would receive. Minocycline is an antibiotic, but has been used to fight RA and related diseases. Treatment with antibiotics doesn't work for all and there can be serious risks in that treatment, including C. diff which is horribly painful in addition to easily transmittable and potentially fatal.


I had C. diff in July of 2012. I let it go for nearly two weeks before doing anything because I thought I was just sick to my stomach or had food poisoning. The process to diagnosis involved collecting my own 'output' and taking it to the clinic.

So gross.

Honestly, with how long I let it go, I'm lucky that I didn't end up in the hospital - and that I didn't give it to my pregnant-at-the-time sister!

Moral of the story? Don't take antibiotics unless you have to.

Monday, March 23, 2015

Maddened Monday: Unikitty, Lego, and Anger

Have you seen The Lego Movie? Because you really really should for many reasons.

My favorite character in the whole movie is Unikitty. She's a unicorn kitty.

She's also like literally me as a Lego. If you have time for a video, check out one here with her best moments, some of which are in gif form below.


She's generally very happy, but has a wee bit of an anger problem. That also, in the end, turns out to be a great thing because she's able to save her friends thanks to going on a rampage.


Another nice thing is that I've also learned that some anger can be healthy and even protect us from events or people: 
Put another way, anger is to be respected and heard. It shows us where our boundaries are, and when they have been crossed. It acts as a guide, letting us know when we’ve taken a wrong turn in life, or need to try a different path. Anger is a compass, pointing us in the next right direction.
All that said, I try to not be angry. It bothers me to have more negative emotions like that because they often take a toll on my physical well-being too. A large part of that is because I hold things back instead of expressing emotions because it isn't always polite or proper - or because I'm worried what I will do with that anger if I try to express it. Physically, I generally end up hurting myself if I work out angry because I ignore my body's warning signs and don't stop when I should.

I think I'm also very fearful of turning into any of the adults I grew up with because they all were far too expressive of their anger, physically and verbally. I don't want to turn into that, so I hold everything inside. Because I don't express my feelings readily, I end up in denial about a lot of things. I've always felt that the denial balances out the potential to turn evil. I try to tell myself that anyway.


All of this is a huge part of why I meditate. I really honestly need to meditate more than I do right now, because I'm falling behind. Thich Nhat Hanh has a great quote about mindfulness and anger here:
Mindfulness does not fight anger or despair. Mindfulness is there in order to recognize. To be mindful of something is to recognize that something is there in the present moment. Mindfulness is the capacity of being aware of what is going on in the present moment. “Breathing in, I know that anger has manifested in me; breathing out, I smile towards my anger.” This is not an act of suppression or of fighting. It is an act of recognizing. Once we recognize our anger, we embrace it with a lot of awareness, a lot of tenderness.
He goes on to say that we should approach these negative emotions like an older sibling would an angry younger sibling. You let that little one experience those emotions without trying to downplay or stifle them, then you help him or her to rebuild.

All of this is honestly a huge part of my fight for self-care and self-love. If I loved enough and thought highly enough of myself to practice more compassion towards myself, I could be able to process my feelings more easily - especially the negative ones like anger.

I'm getting there, but hey I'm a work in progress.


So why am I talking about all this?

I had a moment last night where I learned and remembered more information on the things my mother has done to abuse others, from neglecting to get them care to flat out hurting them and not understanding when she's not received as warmly afterwards.

It was really bad. I was shaking with anger, but then got creepy-calm angry. I'm not sure which was worse, but both bothered me immensely. I was too sleepy to think too irrationally thank goodness, because my awake self would've wanted to go to my mother and chew her out. There are things as a parent that you don't share with your children or expose them to or withhold from them. What I learned last night violated all three of those things and more.


I had literally the same reaction as Unikitty does here. I'm obviously still upset about it this morning.

I refuse to break my no contact with my mother. I know it'll do no good, and that it'll just stir up more depression and anxiety on my part. My therapist and the amazing friends I have in my life all agree. I feel upset that there will never be justice though. My mother will never have to pay for the abuse she doled out, nor will her mother or grandfather. None of them will get a trial or face a night in jail. They'll never face charges for the sexual abuse that they learned about and did nothing to help with, save in some cases removing the abuser (oh hey, fyi, carrying on an intimate relationship with the abuser after that nullifies the removal).


Meanwhile, my sister and I are left with the remnants of lives, trying to pick up the pieces and figure out how to be real people. It's always been her and me against the world. I'm grateful that we have some amazing friends who are now a part of our real family now, giving us help, guidance, and validation when needed. I'm even more thankful that we have great partners in our lives to help both of us work through all of this.

There are people who obviously aren't happy about this situation - about how open I'm being with the things I endured growing up. There are people who think these things are best reserved for closed door conversations if they're talked about at all - you know, family secrets. I believe in being open with this situation just as I have with my disease, because I know that it will help someone. If I can make it so that someone doesn't feel as alone and as tortured about their family life as I have, then it'll be worth it.