Monday, December 15, 2014

Qualities of a good nurse - go!

Not everyone in the chronic illness world is a fan of The Fault in Our Stars. Is it perfect? Nope. Is it improbable? Yup. But hey, it's more probable than The Notebook or other books with white kissing couples on the front.

The movie was great in my opinion, but I read the book first and would encourage everyone to do so. One of the big reasons is for this deleted scene I'm about to show you - kids talking about problems in health care.

(Watch from 0:40 to 1:29 for the more relevant bit)

Nurse to the newly blind Issac: "You'll get over her Issac. It just takes a little bit of time. You'll see."
Issac: “Is he gone?”
Hazel: “Yeah,”
I: "Did he seriously just say 'you'll see'?"
H: "Yes he did."
I: "Nice."
H: “Qualities of a Good Nurse: Go.”
I: “1. Doesn’t pun on your disability, that would be the first one.”
H: “2. Gets blood on the first try.”
I: “YES. Oh man, I'm always like 'dude, I'm not a voodoo doll. Stop poking me.'"
H: "3?"
I: "No condescending voice, that would definitely be 3”
H: “Ugh. You mean like, 'Hi sweetie I’m going to poke you with this extremely sharp object. You might feel a tiny little pinch.'”
I: "Exactly. Good voice."

Let's add to this list of qualities a good nurse has:

  1. Doesn't pun on your disability
  2. Gets blood on the first try
  3. No condescending voice
  4. Has empathy and compassion
  5. Respect for all patients
  6. Attention to details like, you know, what you're allergic to
  7. Actually listens to you and takes down what you say
  8. Can do small talk without seeming too annoying/annoyed
  9. Isn't afraid to integrate technology into taking care of you
  10. Appreciates patients who may know more about their condition than they do
What would you add to this list?

Monday, December 8, 2014

Has it really been two years?

Yup, it has :(
As I write this right now, the physical copy of this picture that I took along with me to the medium is sitting here just staring at me. I wouldn't have it any other way.

Part of me doesn't understand how it's only been two years since Laura passed away, and another part of me wonders how it hasn't been longer. I'm sure a large portion of that has to do with the changes that one goes through over the course of two years - especially the two years that I've lived through.

I have a completely different job and, barring anything crazy, will have another one. I've planned my wedding and taken that plunge. I've dived into pet parenthood. My sister is pregnant again - and I have a whole new (to me at least) sister and brother to get to know. I've let go of one set of family for another set while beginning to explore my spirituality. I've participated in panels, met with politicians, and traveled on my own to Washington, DC. My hair has been a couple of different colors.

Laura's death was hard in so many ways, but two most notably.

Losing one of your closest friends is always hard, but Laura was also the first person who really understood how I was feeling. She knew what I was talking about without any explanation needed. She accepted me for who I was and tried to help me through whatever I was going through, whether that was illness related or not.

Her passing was also a huge wake up call that this illness can take a turn for the worse at any moment. That should've forced me into a mindset of 100% compliance and going to PT every week, etc. Instead, I freaked out at the realization of my own mortality and kind of dropped everything. A bit of survivor's guilt in there you say? Perhaps.

At the same time, her death has done some things that have really benefited me. That seems wrong to say, but hear me out.

I met and got close to a number of people, namely Emily at Chronic Curve along with Laura's mother in law (almost). The two of them have helped see me through a lot and I can't imagine my life without either of them.

I became aggressive in my activism, to the point that I was able to go and speak with politicians several times about the dangerous diseases in the arthritis umbrella and how we MUST fund research for a cure. Now I'm balancing the aggressiveness out with optimism and love, which were both much needed.

I miss her like you wouldn't believe, especially knowing that she would soon be getting married. The fact that she didn't give to have her perfect day is incredibly hard to know now that I've been through it. She deserved that day - so did Matt. I also know that she helped with my day and the people involved in it, too though, and for that I'm forever grateful.

Maybe someday I'll stop marking these next two days more with sadness and reverence, swapping those out for celebratory wake-like days. I know one thing this year - I'm glad to be in a place where I can practice self-love and compassion... and have tissues!

Monday, December 1, 2014

Best.weekend.ever

Wait, we need some reading music.



Side note: you so need to check out Saints of Valory even if you don't listen to this playlist. I've had the pleasure of seeing them in person, and definitely need to again.

This weekend was a long time coming. It was everything I could've asked for and more.

The peace I feel now as I come back to work and back to the things I love to do is incredible. I'm finally seeing myself doing things I've always dreamed about - and along with them come new opportunities. I think a big part of it has been my change to looking at the positive more often. Don't get me wrong - I'm still a realist. However, I'm not using that or anything else in my life as an excuse to be sad or grumpy or angry with the world anymore.

I'm done letting other people or fears or pain run my life, and it feels amazing.

I also got to eat some of the most delicious turkey I've ever had in my life. Next year, smoke your turkey and pair it with a nice cabernet sauvignon.

Friday, I was offered a new job - one that allows me to assist the director of the pediatrics division in bringing technology into the division in addition to helping keep things patient centered. I'm waiting on a few things to be finalized there, but I'll hopefully get started before the end of the year.

In the midst of playing Cards Against Humanity with my family, I also got the email that I've been selected as one of Medicine X's 2015 ePatients! That means come September of next year, I get to spend a weekend out at Stanford telling y'all about all the amazing things being brought to the table at this coming together of designers, patients, and health care providers. I couldn't be more excited to attend in person this year and to meet some of the amazing people who have been so influential in me finding my voice, getting care, and making changes for the better.

This year has been fantastic, but I know this next year will be even better.


Wednesday, November 26, 2014

Thankful for 2014

My awesome friend Julie just posted about the 10 things she's thankful for this year. It got me thinking about what things I'm grateful for this year. It's always a good thing to think about before you wind up doing that round table during Thanksgiving dinner right??

This year has been unreal. Seriously, pinch me.


1. My husband



This year could’ve very well been the worst year of my life given a lot of the things that have happened. I could’ve spent a lot more time stressing out and upset and had a nervous breakdown. Instead, I got married to my best friend – someone who always makes me laugh, even when I’m ready to cry or throw punches.



He calms my nerves, helps me with my struggles, and celebrates my victories. In every sense of the Aristotelian idea of people having been two and then split by Zeus, Theron just completes me. He pushes me to do better when I can, to rest when I need to, and to do amazing things I never thought I’d be able to do. Honestly, he's also the most constant thing in my life, and it's been amazing to have that.

2. My family

I don’t even know where to start.

Side note: need to take more pics
Kelsey, you are the coolest person and I am so incredibly proud of you. I’m so happy that I get to be your big sister, and I hope that I’m as helpful for you as you are for me. I'm so excited for your baby on the way and for Missy to be a big sister.



This year, I get to spend my first Thanksgiving with the family Kelsey and I both should’ve grown up with. I wish she could be there, but I know my phone won’t be far from me! I’m nervous and excited all at once – I want to make a good impression on the extended family, but I also know that they’ll love me just as I am.

There are other people in what I call my family of choice, from Theron’s family to the extended family I grew up with to people in the next 3 thankful bullet points. I am so incredibly blessed to have people in my life that are so amazingly awesome.

3. My friends



I have the coolest friends ever. There are people I’ve known most of my life that I’m still friends with. Sometimes we lose contact, but it always seems like we pick right up where we left off. I have amazing friends from college, from jobs, from being sick (more on that later), and from random craigslist ads. No matter how we found each other, I am so grateful to have you in my life y’all.

4. Our guinea pigs

Hallo! I am Gus Gus!

I am Jaq, king of the dad!


Ah, to finally have pets again. It’s been so long! I love my little buddies so much it’s crazy. They’re so much fun. I know I’m not a mom (yet?) but they give me joy just like I could be. And they’re so stinkin’ cute!

5. The spoonie community



You guys, I have a really hard time putting into words what you all mean to me. You’ve helped me grow, be safe, learn self-care and self-love. Everything that I am today has so much to do with everything that each of you has done for me or helped me do. I hope that I’m doing enough to give back and to help. I will always feel indebted to you all for your help and your love. Everything I've done this year would be impossible without it.

6. My trip to DC in March



In March, I was able to go to DC as a part of the Arthritis Advocacy Summit with the Arthritis Foundation. That trip helped get a lot of things in my life moving. It combined with my connections with national politicians on a local level jumpstarted my advocacy again. I was able to travel to one of the biggest cities in the US by myself without any big problems. I got to visit historical sites, see a Shakespearean first folio and a Gutenberg Bible, and hold my own. We were busy, but I was able to spend time by myself doing something I loved, and that hasn’t really ever happened on a large scale. It started as little Kirsten in the big city, and wound up confident Kirsten heading home.
I can’t put into words how helpful that was for me. Hopefully this time next year, I can talk about MedX in the same light.

7. Ridding my life of toxic people



Honestly this could be the biggest one. Realizing how negatively toxic people impacted my health and removing them has been huge. When I’m alone in a room, everything is quiet for the first time in forever. There are no longer inner dialogues about things to worry about or having to prep myself for fights. I can focus all of that energy on myself, my family and friends, and my advocacy work.

8. Exploring religions and the metaphysical again



I was a religious studies major. I studied amazing religions and got glimpses of how they made others feel. For the last couples of years, I closed myself off to that feeling. I think a lot of it had to do with grieving for the self who wanted to change the world, who was going to graduate school and somehow ceased to exist.

I’m done grieving something I didn’t necessarily have. I had a dream to change the world, just now the audience and methods and circumstances and focuses have changed. I’ve moved from the theoretical to the practical, and I’m beginning to embrace that.

9. Buddha Doodles



Seriously you have to go check out the site. I love the daily emails with new doodles that help keep me focused on compassion and loving kindness. I love the author's story.

10. Technology



Without technology, I wouldn’t be able to do any of the things I love. Talking to my sister across the country would be so difficult with our schedules. Sending silly pictures to my friends to cheer them up – or receiving them! – would be near impossible. And I wouldn’t have connected with so many people in my life all around the world.



I’m so incredibly grateful for you, dear reader. I hope that your weekend is amazing and everything you want it to be.



So what about you. What are YOU grateful for?

Monday, November 24, 2014

Priority Seating Doesn't Include My Lap!

I am sitting here feeling pretty miserable today. Humidity is at 94% and outside it's alternating between snow and rain. We're supposed to get up to 3-5 inches of snow, but it's also been warm the last few days so I doubt that's how much will be on the ground.

On top of the humidity, I had a fun bus experience today.

Okay, it wasn't fun at all.

Despite being deserving of the priority seating on the bus, I generally sit towards the back. It's warmer back there and is often easier to navigate due to seat arrangements and whatnot. It also usually basically empties out at the stop before my stop for work, so that's always nice.

Today, the little old lady that rides our bus wasn't around, so I took her usual spot in the priority seating area. She usually sits on the side with three seats, which means she can rest her bag in the middle until/unless someone wants/needs to sit there. I made the decision before I really realized how much pain I was in. As I sat there, I swear I could hear my hips and knees crying out in agony. I was so grateful for that seat.

And then, he got on the bus and decided to sit in the middle seat on me.

I'm against a short wall, so there's really nothing I can do to get over. As soon as he sat down, I basically had to stand into a short squat and sit down again to even get him off my lap. Like, somehow he didn't notice he was practically sitting on me and the gal in the third seat. And it was pretty obvious.

I spent the rest of the bus ride (about half of it) debating whether standing would be more comfortable. I knew there was no way that would work.

I get that I'm a bigger girl. I take up more space. But I'm also a woman who is generally forced to make herself smaller than she really is, on the bus or elsewhere. I shouldn't have to sit sideways to ride the bus to work.

I thought my body was screaming at me before. Now it had a megaphone. I ended up getting off at the stop before mine because I just couldn't take it anymore. Even then, I had to pull myself out from under him a bit.

Is there a nice way to say to someone that they're hurting you? Or that priority seating doesn't include my lap? Or squishing someone who is sitting there specifically TO NOT BE SQUISHED??

Honestly, I don't know. I love riding the bus and, save a few weirdos, it's a good experience generally speaking. Perhaps I just need to find my voice and stand up for myself. I can't help but wonder, though, if he would have sat there if I looked more disabled.

On a happier note, I am excited to go spend the holidays with some family. More to come on that soon!

Thursday, November 20, 2014

Secrets and Society's Love of Blaming the Victim

A few people have asked about why I'm being so straight forward about regarding some of the issues I've gone through recently, so I wanted to address those.

It's a popular notion that many things are too personal to discuss. Two of the biggest categories in my opinion that are kept quiet are ongoing/chronic illnesses and abuse.

On the illness side, I talk about it because I had no one to reference growing up. If I can help just one family or one person deal with this illness, then I'll consider this blog and the crud I go through worth it. Some of my favorite people in all of time and space are those I've met because they were brave enough to discuss their illnesses. As I said in my last post, I hate this disease and the others it brought along, but I love the people I know because of it (side note: did you see the new page all about resources like other bloggers? Check it out here).

I figure I've written about my sex life. You guys know enough about me that I also feel comfortable sharing my journey coming to terms with the abusive household in which I was raised. There was a point in time where I was ashamed or confused about a lot of it. I held it in and that contributed to how ill I felt. Now that I'm getting things out in the open, I feel better physically and mentally.

I also figure that many more people grow up in abusive situations than they realize. I had inklings, but never had equated my experiences with abuse until a friend asked me questions and led me to answers. I finally have peace in my heart and my mind. If I can bring that or the feeling that you're not alone, not the messed up one, to anyone else, then I will be happy.

I think interestingly enough that these two issues I have talked about more recently both are due to society's love of blaming the victim. Those of us with invisible illnesses are often met with phrases of passive aggressive judgment on how we handle our illnesses. We're told yoga or going paleo will cure us by people with no information, no handle on what we go through. It is made to seem that we either caused our illness - like smokers getting lung cancer (which is another story, because that's not the only contributing factor) - or we don't do anything to get ourselves better. Neither of those are fair judgments to pass on people, because we have no idea what they're going through or have gone through. You see the same thing in abuse or assault situations - the girl could've said no or the kid could've told a teacher. These phrases release the real culprit of any blame, and instead turn it to the victim who internalizes this message and tries to do everything to not cause waves. You don't want to excel in school, but you also know failure isn't an option because you'll be ridiculed or worse. You do just enough to pass through things, not shining but not failing either. There are some, like me as a high schooler, who throw everything into academics or other activities as a means of escape.

I've recently been berated for sharing what's happened from a couple of people as well. It seems that secrets are treasured in 'families' and we should be quiet about things that have transpired. That kind of thinking just perpetuates abuse, and makes it okay for us to ignore. If you don't like what I have to say, then don't listen.

I refuse to stop sharing things that will help other people while helping me heal. I refuse to stop talking about self care, self love, and self worth. I refuse to keep the majority of my life a secret. I don't care if the world knows what my secrets are, because I will always continue to be true to myself and my loved ones.





Friday, November 14, 2014

Reflections on 21 Years of Illness, Part 3: Happy Birthday Arthur!

TODAY marks 21 years of living with this disease for me. It's not necessarily a day I want to celebrate, but it is also a day that I cannot let go by unmarked. I have written a few different blog posts this week reflecting on the live I've lived so far, the lessons learned, and the amazing steps that have been made in chronic illness and rheumatology care since 1993. This is part three in the series.

Yesterday, I logged into my facebook account and saw a post from another adult living with JA in a JA support group that's generally frequented by parents of children with JA. She discussed some of her frustrations having grown up with JA - the limitations she's always had, the things she's missed out on, the anger she feels when an older person complains about what they're suddenly unable to do now that they have RA, etc. She reflected on how she just left all the adult RA support groups, because she couldn't handle the complaints about giving up high heels and such anymore.

Last year, I was very much this young woman. This year, everything in my life has changed, and I hope it does for her as well. There is a place for anger, but there is beauty in moving past it and using it as fuel for change.

When I first got sick, things happened quickly and yet slowly at the same time - medical tests, doctor appointments, my kindergarten class sending 'get well' and 'we miss you' cards, eliminating certain foods, changing detergents and soaps, getting chicken pox on top of my itchy then-unknown rash, etc, etc, etc. Nothing helped. I was just so tired of being poked and prodded and not being a normal kid. When the misdiagnoses of leukemia was brought up, and I was given six weeks to live, I made a bucket list.

I still haven't done everything that was on it. I don't even remember what all was on there, not that it matters now. My priorities are different and I've done things I never dreamed would be possible.

When I was finally diagnosed a few months later at age 6, medical literature stated that I'd be in a wheelchair by age eight. There was other literature that stated just how difficult SJIA in particular was to treat, and that disfigurement and life threatening issues popped up for every one of the afflicted children. I had already thought I was dying, and the household I lived in sadly encouraged that because it increased both my panic and my attachment to the women I was raised by. As my eighth birthday approached, I cried myself to sleep every night thinking that I would magically wake up on April 26, 1996, unable to walk - that I would be unwrapping a wheelchair instead of Lego sets. When that didn't happen, I was not relieved. Instead, my anxiety increased, and I began to go to bed with fear in my heart. I was pulled out of school and left to school myself. I was isolated from friends and adults who could've helped see the negative issues in my household and get us help. I was refused a medication that could've gotten me into remission or my disease under control, avoiding the disfigurements my bones now have. In fact, I was refused all medical treatment period within two years. I wasn't really even allowed to learn about my disease - that was never a curiosity fostered in my home. My sister had it even worse with the things withheld from her and the issues she endured - and is still going through - because of it.

I begged to go to school every single year. Some years, it was that I 'didn't ask early enough' so there was no way I'd be able to get into a school. Others it was that I clearly was too sick to go. When I was finally allowed to go back, I was overweight, overdosing on Aleve, and incredibly socially awkward. I was picked on and bullied - even by teachers. Middle school is always hard, but damn. I'm lucky enough that I fell in with a great group of kids as friends.

In high school, things in the household got worse. Violence escalated in newer ways at home, and being there sucked. I loved learning about the different cultures and religions in the world. I loved escaping my body when I could. I had been meditating and doing yoga since I was 12, but this gave more meaning to it all. My pain escalated and I thought that I could lose weight by starving myself, and that made things a million times worse. I then threw myself into my academics, and excelled, but still felt crummy more days than not.

In college, my pain escalated with the lovely new cold of Wisconsin I was being exposed to. I tried to get help on campus, but instead of knowing how to help at all, I was told that I knew my body better than the medical professionals at the health clinic - that I was a big girl and that I should know how to take care of myself. I couldn't find any medical records to help myself. I began to blog, and I found others like me! I met amazing people over the internet, who along with my now-hubby helped push me to get care. I began medications, moved to a new city, and tried to take graduate classes while working. I was able to keep it up for a while, but not long enough. I've been removed from school for three years at the end of this semester. I miss it, but I also no longer need it for the purpose it once served - escape and a doorway to freedom.

This past year has been amazing. I've finally put names to what my sister and I both went through growing up. We're understanding it, and others are as well. Friends are asking, not to be nosy but to help and to learn - heck, a wonderful friend is how I really learned about these forms of abuse in the first place! I've cut out toxic people from my life, knowing I owe them nothing simply because of genetics. I've also welcomed people into my life who really deserved to be there all along because of genetics. I've gotten married - something that the small scared child I once was thought would never happen - and it was the best day of my entire life. Arthur stayed calm - stayed away - until everything was wrapping up. He let me have my day, and so now I am more patient with his days. That bucket list lil K made has far been dwarfed by what this year alone has brought.

A lot of feelings come up in each of the paragraphs above. I've dealt with depression issues since I was young - partly because of this disease and partly because of the family I was born into. I've dealt with a lot of anger dealing with the issues surrounding both too. Strong and negative emotions tend to affect my disease more. Stress makes it worse. Because of this disease, I have spent a long time hating my body because of what it cannot do, and hating others because of what they are able to do. I've spent most of my life being isolated, in one way or another. This blog has been, and continues to be, a way that I can open up. It has led me to meeting other sick chicks and health activism and patient advocacy. It has even led me to apply for the Stanford Medicine X conference (cross your fingers!!) and to Washington, D.C. this past March to hobnob with politicians.

I still hate this disease. I hate what it's done to this body I live in. I hate what it continues to do while only kinda under control. I hate that it often controls what I do. I hate that it makes me look like a poor job candidate or a poor worker. I hate that it's brought little buddies like fibro into the picture too. I hate what it has done to others that I know, from disfigurements to overwhelming medical debt to death. Without it, like the girl on facebook earlier, I don't know who I would be or what I would do. I wish I could change the pain levels and the lack of treatment that caused much of those.

On the other hand, I know so many people around the world that I can't imagine life without. They help push me to fight harder, to be a better person, and to change the world - but also to remember to take breaks when I need to and practice self care and self love. Like my hubby does, each of these people remind me that anything is possible when we put our minds to it.

This weekend will not be a sad one lamenting Arthur as last year's kind of was. Instead, I plan on practicing some self care and love. T and I are heading to a hockey game this afternoon, baking some treats, spending time with our guinea pigs, and finally finishing up with our wedding picture edit requests.