Friday, December 26, 2014

A Beginner's Guide to Self-Care and Self-Love

With the holidays around, everyone tends to overextend themselves whether it's purchasing too many presents or cooking a lot. We often don't get much thanks for the tasks we complete, because everyone is so busy helping out. Christmas especially can be overwhelming. For myself, I think a lot of it is centered on wanting things to be perfect - wanting to fit in, wanting to avoid fights or awkward moments, etc. It can also be overwhelming because you receive many gifts and don't have enough time to give thanks or truly appreciate each one.

For those of us with chronic illnesses and a lack of spoons (read the Spoon Theory here), taking time for ourselves in any aspect is very important. We need time to recharge, to get refreshed. It is very hard to deem ourselves worthy of that time for so many reasons. Our society sees downtime as lazy and unproductive. We often feel we are not worth the work because we have other things or other people to worry about and help. We put others first. We don't have the energy.

You can name your own reasons.

This year for me has been an exercise in learning and practicing not only self-care, but self-love. The two are intertwined, but not always connected. You can practice one without the other, like going to the doctor. That is an act of self-care, but may not be an act of self-love. Sometimes if you're in enough pain, it's more an act of desperation - wanting to be rid of the pain - than loving yourself enough to take care.

The first thing to know about both of these is that YOU ARE LOVED. You matter. The space you take up isn't wasted. You bring something to the world that doesn't exist without you, be it your quirky personality, cooking skills, or the compassion you have towards others.

The second thing to know is that you are not alone. There are so many people out there struggling with these concepts as well.

If you only do one thing for yourself for the rest of 2014, visit Blessing Manifesting or Buddhify.

Dominee over at Blessing Manifesting has created an amazing amount of resources (including some of the beautiful pictures on this post) for practicing self-love and self-care. She even has a planner and a calendar out right now to help with that. I've completed the winding down 2014 sections, and they've been immensely helpful. She also has a private facebook group for people to discuss issues, get help, and think happy healing thoughts for each other.

Courtesy of CNET
I've talked a little bit about Buddhify before. It's an app available in the Apple store and on Google Play. It guides you through meditation, giving you an ability to appreciate the little things we encounter every day, from riding public transit to taking a bath (okay, not always things you do every single day).

There are of course a number of other people you should check out, from Julie at It's Just A Bad Day, Not A Bad Life to Kenzie at Life According to Kenz to Healing by Holly. And of course you can always follow me on instagram or other social media and see all the cool people I've found elsewhere as well. There are just too many to name!

The most important step is to realize that your self-worth is not defined or muddied by your illnesses, your history, what you look like, or whatever you are facing in this moment. You matter because every person, every living thing matters. You matter because you are loved and you love.

I hope to share more of my journey practicing these concepts in the new year, and I invite you to join me on this path. It will not be easy by any means, but it will be worth it.

Today, though, I want to challenge you to do something good for yourself. That could mean anything from going on a little drive and picking up your favorite coffee (hello egg nog latte!!!) to shopping the dollar section at Target to giving yourself a hug (yes, I'm serious!). Treat yourself like you would treat your best friend, sibling, or child today.

Monday, December 22, 2014

Gee, if I could only get my flare to end, then I could wish you "Merry Christmas!"

It's been an interesting week.

Thursday morning, I woke up to a very sore hip. It was bad enough that I grabbed my cane and took it to work with me... and then had to even use it.

The nerve!

It really is though, OMG

Listening to my body, I had to stay home Friday. I spent most of my day with my legs up, which helped with the pain. I went to Target for important supplies.

Buddha was a necessity!

Saturday I napped a fair amount, but I was able to be up a little more. Sunday was a different story though.

I wound up at urgent care when keeping my joints up wasn't helping with the pain or with my ability to walk. X-rays determined that my hip was structurally fine, which determined for sure that I'm dealing with a giant jerky flare. I also got two prescriptions - one for Zohydro and another for a massive prednisone boost... 60 mg Mon-Wed, 40 mg Thurs-Sat, and 20 mg Sun-Tuesday.

Despite that, driving to work instead of busing, and working a shorter day, this is where I've ended up as of Monday night:

My sweet couch set up above blanket

Thank you FXX for your Simpsons binging days!

I was reminded of a few great things in the past couple of days through all of this though.

I'm making the right decision to move to my new job. It's less of a hike for me, in the medical field, and will hopefully therefore not result in coworkers mocking my cane. Yes, that happened on Thursday, and oh my god.

I've dealt with crazy pain like this before without meds. I can make it through with the wonderful meds I'm happy to now have access to.

I WILL EAT ALL THE THINGS THIS WEEK... but one spoonful at a time :)

During a convo with one of my favorite people today, I got some awesome advice from this amazing newly diagnosed lupus and raynaud's patient: Life give you things that are great and not so great. Think about what you can control when things are bad.

I'll be resting a lot more this year for the holidays. I hope that you all spend more time listening to your body and doing the same!

Happy holidays!

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


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.

Tuesday, November 11, 2014

Reflections on 21 Years of Illness, Part 2: New Medications

This coming Friday will mark 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 hope to write 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 two in the series, documenting the breakthroughs in rheumatology over the last 21 years.

Enbrel [TNF alpha inhibitor]:
Approved to treat RA (Nov 1998)
Polyarticular JIA (1999)

Psoriatic Arthritis (2002)
Ankylosing Spondylitis (July 2003)
Plaque psoriasis (April 2004)

Approved to treat RA (Nov 2001)
While not FDA approved to do so yet, this is a drug of choice for SJIA/Still's

Humira [TNF alpha inhibitor]:
Approved to treat RA (Dec 31 2002)
Psoriatic Arthritis (2005)
Crohn's Disease (2006/2007)

Orencia [T-cell inhibitor]:
Approved to treat RA (Dec 2005)

Cimzia [TNF alpha inhibitor]:
Approved to treat Crohn's (Apr 2008)
RA (May 2009)
PsA (Sept 2013)
AS (Oct 2013)

Simponi [TNF alpha inhibitor]:
Approved to treat RA, PsA, AS (Apr 2009)

Ilaris [interleukin-1 beta inhibitor]:
Approved to treat CAPS (Oct 2009)
SJIA (May 2013)

Actemra [interleukin-6 inhibitor]:
Approved to treat RA (Jan 2010)
SJIA (Apr 2011)
Polyarticular JIA (Apr 2013)
New SubQ form approved for RA (Oct 2013)

Xeljanz [JAK (Janue kinase) inhibitor]:
Approved to treat RA (Nov 2012)

As you can see, there has been a ton of improvement in medications in the last 21 years. In 1993, the go-to was methotrexate if you weren't going to go into a medical trial for one of the above medications (namely Enbrel).

With these new medications, we have a better chance of finding a medication that works for each patient. We also have more options for harder to treat patients, especially those of us with SJIA/Still's.

Sunday, November 9, 2014

Reflections on 21 Years of Illness, Part 1

This coming Friday will mark 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 hope to write 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 one in that series, about the random things that have happened since I fell ill. For the sake of limiting my political views from coming in here, I'll stop at 2007, when I began blogging and dating my hubby. Personal events will be bolded.

  • 1993
    • I fall ill (Nov 14)
    • NAFTA agreement (Nov 21)
    • Toni Morrison won a Nobel Peace Prize for literature (Nov 30)
  • 1994
    • Nancy Kerrigan attacked (Jan 13)
    • Four convicted in World Trade Center bombing (Mar 4)
    • Hutus in Rwanda began their genocide against the Tutsis (Apr 6)
    • South Africa held first interracial election and elect Nelson Mandela (Apr 29)
    • OJ Simpson arrested in connection with the murders of Nicole Brown and Ron Goldman (June 18)
    • I am finally given a real diagnosis that fits (summer)
    • MLB players went on strike (Aug 13), which caused owners to end the season and cancel the World Series (Sept 14)
    • After a month or so of first grade, I am pulled out and homeschooled (Nov)
  • 1995
    • My sister Kelsey also falls ill (last year or this year? I can't remember but she was 2 or 3), presenting the same symptoms as me. She is diagnosed by the family we were raised in and receives no medical treatment. I quickly am relieved of my access to medical care as well as the home we grew up in becomes increasingly abusive. The homeschooling we were both to receive turns into us trying to teach ourselves very quickly as the adults decide it isn't their problem to teach us.
    • MLB strike ended (Apr 2)
    • Appeals court upheld a woman's plea to enter the Citadel military academy (Apr 13)
    • Oklahoma City bombing (Apr 19)
    • Israelis and Palestinians agree to transfer the West Bank to Palestinian control (Sept 24)
    • Ceasefire reached in Bosnia (Oct 5)
    • Yitzhak Rabin killed (Nov 4)
  • 1996
    • FBI arrested suspect in Unabomber case (Apr 3)
    • Ella Fitzgerald died (June 15)
    • TWA Boeing 747, Flight 800, crashed (July 17)
    • Bomb set off at the Summer Olympic Games in Altanta, GA (July 25)
    • Madeline Albright becomes first female Secretary of State in the United States (Dec 5)
  • 1997
    • Hale Bopp comet proximity to Earth (Mar 22) inspired Heaven's Gate cult group to commit suicide, bodies found (Mar 26)
    • US spacecraft began survey of Mars (July 4)
    • Princess Diana killed in car crash (Aug 31)
    • Mother Teresa died (Sept 5)
    • Rituximab (Rituxin) approved by the FDA for use in non-Hodgkin's Lymphoma (Nov 26). It would later be used for RA and other rheumatic diseases as well.
  • 1998
    • President Clinton accused in sex scandal (Jan 21)
    • FDA approved Viagra (Mar 27)
    • Good Friday accord reached in Northern Ireland (Apr 10)
    • Infliximab (Remicade) is FDA approved for treatment of Crohn's disease (Aug 24). It will later be used to treat rheumatic diseases.
    • Matthew Shepard beaten to death for sexual orientation in Laramie, Wyoming (Oct 6)
    • Enbrel approved by the FDA for use in Rheumatoid Arthritis (Nov)
    • My brother Matt was born (Nov 20)
  • 1999
    • NBA ends labor dispute (Jan 6)
    • First nonstop balloon flight around the world completed (Mar 20)
    • Joe Dimaggio died (Mar 8)
    • NATO began airstrikes on Serbia (Mar 24)
    • Dr. Jack Kevorkian convicted of second-degree murder in assisted suicide/death with dignity case (Mar 26)
    • Columbine massacre (Apr 20)
    • First woman graduates from the Citadel (May 8)
    • US women's soccer team beats China for World Cup win (July 10)
    • JFK Jr died (July 16)
    • World population reached 6 billion (Oct 11)
    • Tobacco companies admit smoking is dangerous (Oct 13)
    • Elian Gonzalez debate starts (Nov 25)
  • 2000
    • Y2K Scare  (basically all year longggg)
    • Hilary Clinton enters senate race in New York (Feb 6)
    • The IRA missed their disarmament deadline, so Britain came back in to rule Northern Ireland (Feb 11)
    • Vermont approves same sex unions (Apr 25)
    • August Pinochet lost immunity granted by Chile, which leads to a trial for years of torture and abuse while he was dictator (May 24)
    • Israeli troops withdraw from Lebanon (May 24)
    • Britain leaves Northern Ireland again (June 4)
    • Yugoslavia overthrew government and president Milosevic (Oct 5)
    • USS Cole explosion (Oct 12)
  • 2001
    • George W. Bush sworn in as president (Jan 20)
    • Bush abandoned Kyoto Protocol (on global warming), pissing off like everybody (Mar 30)
    • Former Yugoslavian president Milosevic delivered to The Hague for his war crimes trial (June 29)
    • After years of begging, I am allowed to go back to public school (Sept 10 is my first day of 8th grade)
    • Terrorist attacks on the United States hit the Pentagon and take down the towers of the World Trade Center, while another plane reportedly headed for the White House crashed into an open field in Pennsylvania after passengers acted to stop the plan (Sept 11)
    • My immune system figures out how to get sick quick, and I'm home with the flu for a few days (Sept 12)
    • Anthrax letters find their way to several government agencies, killing a dozen people (Oct 5 and on)
    • Bombing campaign against Afghanistan began (Oct 7)
    • IRA finally began disarming (Oct 29)
  • 2002
    • The Euro began to be used in European Union countries (Jan 2)
    • East Timor becomes a new nation (May 20)
    • US Catholic bishops finally institute a zero tolerance policy of child abuse after several high profile cases come to light (June 14)
    • I start high school (Sept)
    • Vatican calls for softening of the above zero tolerance policy (Oct 18)
    • DC sniper attacks (Oct 2-24)
    • EPA relaxed Clean Air Act (Nov 22)
    • Department of Homeland Security created (Nov 25)
    • Humira approved by the FDA for use in RA, JIA, PsA, AS, Crohn's disease, ulcerative colitis, and plaque psoriasis (Dec 31)
  • 2003 
    • North Korea withdraws from nonproliferation treaty (Jan 10)
    • Space shuttle Colombia exploded (Feb 1)
    • Tons of demonstrations around the world pleading with US Government to leave Iraq alone (Feb 15) and then everyone in the UN tells the US to not invade Iraq (Feb 24)
    • We invade Iraq anyway (Mar 19)
    • First Palestinian prime minister sworn in (Apr 29)
    • Massachusetts Supreme Court ruled in favor of gay marriage (Nov 18)
    • Sadaam Hussein captured (Dec 19)
  • 2004
    • Enron CFO admits being bad (Jan 13)
    • Al-Qaeda terrorist attacks in Spain  (Mar 11)
    • Abu Gharib scandal photos released (Apr 30)
    • Chechen terrorists take over school, killing 340 in total (Sept 1-3)
    • Christmas tsunami caused by a 9.3 magnitude earthquake kills an estimated 225,000 (Dec 26)
  • 2005
    • Mahmoud Abbas wins presidency of the Palestinian Authority (Jan 9)
    • Saudi men are allowed to vote in municipal elections (Feb 10)
    • Pope John Paul II died (Apr 2)
    • Benedict XVI becomes the Pope (Apr 24)
    • Mahmoud Ahmadinejad wins Iranian presidential election (June 24)
    • Sandra Day O'Connor retires from the US Supreme Court (July 1)
    • London hit by terrorist attacks (July 7)
    • Central American Free Trade Agreement (CAFTA) signed (Aug 2)
    • Hurricane Katrina hits the Gulf Coast killing more than 1000 people and leaving many more homeless (Aug 25-30)
    • Angela Merkel becomes Germany's first female chancellor (Oct  10)
  • 2006
    • John Boehner is elected House Majority leader and most likely to be orange (Feb 2)
    • I graduated from high school with honors and a full International Baccalaureate diploma (June)
    • We move to Wisconsin (Aug) and I get my first job at the end of the month and start college with Sophomore standing (Sept)
    • My sister Ella was born
    • South African parliament votes to legalize same sex marriage (Nov 14)
    • Gerald Ford dies at age 93 (Dec 26)
  • 2007
    • Virginia Tech massacre (Apr 16)
    • The transition of Northern Ireland to self-rule takes final steps (May 8)
    • After several months of fighting and other issues, Palestinian president Abbas dismantles much of the government and declares a state of emergency (June 14)
    • Bush vetoes a bill that would've eased restrictions on stem cell research (June 20)
    • A bridge in Minnesota collapses while full of cars, killing 13 (Aug 1)
    • I start dating Theron (Sept 19 + 20)
In the last seven years, several new treatments for rheumatic diseases have come out from Ilaris to Actemra to Orencia and more. Several of those are FDA approved to treat SJIA specifically. We've also discovered that aggressive treatment within the first 6-9 months of diagnosis yields the best chances for remission.

Monday, October 27, 2014

I'm back to the old me again - or, how a medium helped me figure out my life

If you've followed me for a few years, you know that the last few have been really hard on me. At the end of 2011, I made the tough decision to stop going to graduate school because I just couldn't function well enough to go to school and work. I began to grow really bitter, sad, and angry with the world. There were multiple occasions where depression was really high just with that decision. And then in December of 2012, Laura passed away of complications relating to our disease - complications a good medical team should have seen coming and caught. Any sadness I had left turned into fear and a burning anger. That anger became directed especially at those who believe in going all natural and stopping (or not starting) treatment that is life saving. I did some really great and meaningful work as a result with different organizations, but that anger never really went away. More stressful life changes happened - some of them sucked and some of them were amazing. I've had a few breakthroughs in the last several months where I've been able to be the real me again, but they never lasted too terribly long. I always went right back to huge amounts of anger, anxiety, and overwhelming fear. There have been many nights where I've cried myself to sleep because I get stuck in a loop of what ifs and whens and thinking about what will happen in the future. In the last few weeks, it really hit me that I've become a super unhappy person.

A large part of that was explained within the last several months as I began to learn and remember more how I was raised and the things I went through or witnessed while growing up. Everything just really came to a head at once, even though it came on slowly.

On Monday of last week, I got some news that someone close to me was diagnosed with lupus. Her symptoms started about the time we connected, which made me think of Laura. I won't go into specifics because that is something I hold sacred, but she gives me signs pretty regularly that she's around in some way. In death, she connected me with some amazing friends who have continued to give me support in her absence. I've been wanting to see a medium for some time, but this experience was just too close to let pass by. Thursday afternoon, I went and saw a medium. I wasn't really sure what to expect. I'm still not sure how much of what she told me I believe. She encouraged me to incorporate some more natural aspects into my care, which I'm taking steps to do. She also told me some things about my future that have really helped to put my mind at ease, some of it coming from Laura. That alone was worth the trip to see this medium. To have some of the issues I've faced validated by another woman who grew up in a very similar home situation was just icing on the cake.

I don't know how much the steps the medium asked me to take will help me improve my health. Some of these are things that I've fought against for a long time, and others are things that I just don't know will help at all. However, I've gotten back to the point I was at several years ago, where I'm willing to try, to make the effort. I'm ready to fight this with all I've got again, instead of being as passive and go with the flow as I've been lately in my care. There wasn't a whole lot she shared with me that I hadn't heard before in some way, but this time I was open to it and ready to hear it. This is a part of a major set of lifestyle changes for me. I've made some dietary changes and started making a lot of healthier changes in general. This, of course, on top of what I've already done this year to cut out toxic and abusive people from my life. I'm looking at changing rheumatologists as I've found one here in town who knows this disease and doesn't understand why I'm on a TNF drug. She's excited to work with me, and I'm excited to get a little more focused care. I'm eager to see what will happen as a result of all of these changes.

So, say hello to the new (old) me? I'm writing more, working on more projects, and eager to get started on making these changes. I hope you'll join in on this new journey with me.

In 2012, during a really hard day for me, Laura said that that year was going to be my year as I was accomplishing a lot - writing here and there for a few different big name places, giving a speech for the Arthritis Foundation, getting engaged, etc. I honestly think she was a couple years too early. I couldn't have written my life the way that it's played out so far, and I'm ready to start the next chapter.

Wednesday, October 15, 2014

Interview with a Pediatric Rheumatologist

A while back (okay, a year), I sat down and had a phone conversation with Dr. Alexei Grom at Cincinnati Children's Hospital. For those of you who don't know the name, Dr. Grom is one of the experts on Still's and MAS in children. He also focuses on Juvenile Dermatomyositis. He was super nice, and we discussed a lot more than I'm putting here, but a good amount of it was related to my current level of care and medications, so I won't necessarily put that info here.

One of the first questions I asked was about how Dr. Grom got into pediatric rheumatology, and why he focuses on these diseases. During his fellowship training, he worked with a pediatric rheumatologist. He found the field intellectually stimulating. Then, a SJIA patient died due to MAS. He knew he wanted to help focus on why MAS occurs in SJIA so often, and wanted to work with JDM children as well. He's definitely not in it for the money!

In 2006, the rheumatology world reached a turning point as far as these diseases are concerned. New papers were released on SJIA, which brought about a new treatment algorithm. Kineret came out. Now, we have ideas and more treatments centered around interleukin inhibitors.

We discussed the question of whether remission or just getting the disease under a bit of control should be the goal, and remission is definitely what we all want. Dr. Grom believes that pediatricians need to learn more about these diseases and really think about them. Six to nine months post-onset is the golden window to starting aggressive treatment with the best chances of remission, yet we have children waiting over a year to get a diagnosis at all. It has to change.

I brought up methotrexate, which I had just failed for the second time (first go was pill form, second was injection). He doesn't favor mtx for SJIA. There is some response, but poor control for us specifically. And 10-15% of JIA kids don't respond to the medication.

I wanted to know how physicians tend to get information on pain from children, because I didn't go through that due to my issues surrounding access to care. The biggest issue docs face (and parents too sometimes) is that it's hard to gauge what normal is in children, especially in younger kids. He encourages parents to use pictures to illustrate the differences in how their child is doing.

Many parents and families that I know have wanted to know what doctors wish they did differently when it comes to appointments and disease management. He wants his patients and their families to understand the courses the disease can take - complications, morbidity, etc. He also wants us to be well versed in side effects on our treatments as well as treatment options. Compliance with medications is always preferred, but if that can't happen, note why. Is it a side effect? Does the medication wipe your kid out for a week, so you change up shot days when there are big events coming up? We should have folders or binders of this kind of information. Kids should also be learning about their disease and all this as they grow with age appropriate information.

Finally we touched on a more recent theory - that SJIA/Still's shouldn't be lumped in with the other JIA types. Studies out there are hinting that SJIA/Still's are both more related to the periodic fever group of diseases, which makes sense with the fevers we get!

It was a great discussion, and he really helped me get a hold on what is going on today from the provider standpoint with SJIA. He also helped push me to seek out some different medications and, if that doesn't work, different care... which I may be doing soon.

Thank you Dr. Grom for talking with me and for all you do for SJIA kids!

Tuesday, October 7, 2014

Light: A Window to Pain in the Brain?

I have GOT to tell you guys about this new study seeking funding... with a little back story of course!

I grew up out in Eugene, Oregon, home of the Oregon Ducks. It's a great place - very progressive and full of actual, real hippies. Side note: I'm actually super stoked to try going out there for my ten year reunion in a few years.

ANYWAY, one of my friends from high school works in the healthcare industry. She knows Doctor Omar Halawa at the Oregon Health and Science University, who just happens to be working on this fascinating new study focused on chronic pain, specifically fibromyalgia.

You can read the details above, but basically here's the lowdown: fibromyalgia patients have been found to be a lot more sensitive to light than normal peeps. This study is going to utilize results from that study to see if changes in light can affect pain centers in the brain, and they'll measure this using a fMRI (functional MRI).

This is fantastic news for anyone dealing with chronic pain, as this could have HUGE implications for us. It's also super news for us fibro patients, because the medications used to treat fibro don't work for everyone and can have some funky side effects. I just found out the med I'm on can be a depressant - they gave a girl with a history of anxiety and depression a depressant!!!

Sigh. At least it's working okay for me. I digress.

My friend got me in touch with Dr. Halawa and he was kind enough to answer some of my questions on this study:
Briefly, chronic pain is a huge stigma in our medical system and society at large. If someone gets this diagnosis they're often labeled as "weak" "narcotic seeking" "whiney". What supports this erroneous view is that our current diagnoses aren't able to "find pain". For example, if you image a patient's lower back and find nothing pathological you imply to them that the pain is "in their head". This is harmful to the patient as they start to feel that their pain is a character flaw and often become isolated/hopeless. The reality, though, is that most chronic pain conditions are a malfunction in the neurocircuitry in the brain and spinal cord that we can't see with conventional imaging.
Our hope with this study is that we will be able to detect this abnormal/sick nervous system using functional MRI and light.
These doctors actually get it, so I figure we need to do what we can to help them help us, right? There are 24 days left for Dr. Halawa and his colleagues to raise the $12k needed to complete this study. If you're in the position to donate, please do so here. If you can't, please try to share this so that others can try to help.

Sunday, September 7, 2014

30 Things About My Invisible Illness(es) You May Not Know

It's Invisible Illness Week!

1. The illnesses I live with are: systemic juvenile idiopathic arthritis (SJIA or Still's Disease), psoriasis, fibromyalgia, general anxiety disorder, depression, and patellofemoral arthralgia of both knees (yeah, the last couple are newerish)
2. I was diagnosed with it in the year: SJIA - 1994; psoriasis - 2010; fibro - 2012; GAD, depression, and the knee thing - 2014
3. But I had symptoms since: SJIA - Nov 1993; psoriasis & fibro - 1995ish?; GAD, depression, and the knee thing - who even knows, but since I was pretty young.
4. The biggest adjustment I’ve had to make is: having to look at my electronic medical record to remember everything I have!! Nah, but really the biggest thing has been to take care of myself and put other things on the back burner.
5. Most people assume: that my problems are because I'm overweight, but I'm overweight because of my problems!
6. The hardest part about mornings are: waking up. I could hit snooze forever.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: I used to say my laptop, but now it's my phone. I have so many apps on there, from anxiety calming apps to snapchat and instagram to tumblr, twitter, and facebook to keep my advocacy up on the go. It also helps me connect with and talk to the most important people in my life, so that's pretty baller.
9. The hardest part about nights are: the inconsistency in my energy levels. Sometimes I get home from work just half dead and can't do much. Other days, I can't sleep because of too much energy. Other times, it's because of too much pain.
10. Each day I take 10-14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: embrace those that have scientifically been proven to help my various conditions, but also don't follow those a lot (read: I need a massage y'all).
12. If I had to choose between an invisible illness or visible I would choose: invisible. The problem with the invisibility issue will not go away if I just had a visible disease, but only is us invisible peeps band together to raise awareness. Also, as frustrating as it is, I am privileged to not constantly be inspiration porn for people.
13. Regarding working and career: I don't even know what to say. I'm good at my job and I like it, but I don't love it. There are definitely more advocacy related fields/positions I wish I could go into. It's just a matter of getting those people to bite.
14. People would be surprised to know: that I grew up in an abusive home. Abuse is actually one of those things that's been studied and found to increase likelihood of having fibro, so it shouldn't be that surprising, but I'm nice haha.
15. The hardest thing to accept about my new reality has been: the shifting parameters. Look, I've been sick since before I had the chicken pox, so there isn't so much a new reality... but I've learned to do more self care. The frustrating thing with that is that my body's definition of okay and shitty consistently change, along with my energy and pain levels. I just wish it was more predictable.
16. Something I never thought I could do with my illness that I did was: to be otherwise healthy. I've been able to have some great role models lately, and I'm definitely working on it.
17. The commercials about my illness: are total BS. I don't go golfing. The good news is that pharma is listening to patients say that, and is trying to make changes.
18. Something I really miss doing since I was diagnosed is: coloring all day? Really though, I think one of the toughest things is not being able to go and do what I want without thinking about it.
19. It was really hard to have to give up: running. I was told by my physical therapist earlier this year that I'm not allowed to run for a while. I love the feeling of pushing myself to do more than I could before, and I'm feeling a little bummed about this. However, my knees are getting stronger and we can soon start running rehab.
20. A new hobby I have taken up since my diagnosis is: I'd like to think my music stuff is a good hobby, but I also consider my advocacy work to be a nerdy hobby.
21. If I could have one day of feeling normal again I would: use it for my wedding day, and I did. I'm so glad. If I had another one though? I'd want to go on a long hike or run or go be super active without bringing the cane just in case.
22. My illness has taught me: to fight for what I need.
23. Want to know a secret? One thing people say that gets under my skin is: when they give me advice on what herbs to try or give reiki healing a shot. Y'all, I've been sick for 21 years now. I know what works for me and what doesn't.
24. But I love it when people: do thoughtful things like ask if stairs are okay today when we're walking or when someone walks slower than the group to match my pace or when I get texts from people to check in on me while I'm flaring.
25. My favorite motto, scripture, quote that gets me through tough times is:
"When we are no longer able to change a situation - just thinking of an inevitable disease such as inoperable cancer - we are challenged to change ourselves. In accepting this challenge to suffer bravely, life has a meaning up to the last moment, and it retains this meaning literally to the end." -Victor Frankl
26. When someone is diagnosed I’d like to tell them: to do their research. Learn as much as you can as quickly as you can about your illnesses. Doctors aren't unable to make mistakes, and being an informed patient may just save your life - and it'll connect you with others.
27. Something that has surprised me about living with an illness is: how much more of a family I have in the chronic illness community than with my large extended batch of relatives. I feel there is less judgment, less frustration and agony over decisions. There's an understanding there that other people often cannot have.
28. The nicest thing someone did for me when I wasn’t feeling well was: just hold me while I cry and assure me that my feelings are valid - and that everything will work out.
29. I’m involved with Invisible Illness Week because: all my illnesses are invisible to people who don't know them. We have to raise awareness.
30. The fact that you read this list makes me feel: good. Somethings have changed since the last time I did this, both for the better and for the worse. I think it's interesting to track those changes.

Wednesday, September 3, 2014

Wedded Bliss & A Crazy 2014

I can't believe I've been married over a fortnight. It's all a little weird. Aside from feeling more comfortable in my relationship, I didn't think anything would really change. And yet, here I sit feeling like a very different me than I expected. Some of that, no doubt, comes from the fact that I spent so much time thinking about and planning this wedding that I feel a little empty now. I'm not sure what to do with myself, other than to mother our new guinea pigs Gus Gus and Jaq... which means they're kind of possibly spoiled piggies.

The wedding went so much better than I could've ever expected. There was no drama. Things did actually stay pretty close to our schedule. I got to spend time with each of the important people in my life, and those people all got to meet each other. I danced most of the night, but what can you expect when they send a DJ who could be your musical twin and teaches you how to do the dances? I got to dance with my sisters, even the ones who aren't related to me at all, and with the awesome men in my life. I also got to spend some time with some of the cool spoonies I know, for which I'll always be grateful.

One of my favorite parts was being able to dance with my dad, even for a short time. For most girls, that's a no-brainer. Personally, I wasn't sure that would ever happen. You see, up until the beginning of August I had never gotten to meet my dad, and I had only talked to him a few times. I feel like I share an awful lot with you guys, but I haven't been able to share everything lately. One of the big things I learned this year was that there was a reason my little family seemed askew, and it's definitely been a part of the lack of new posts here. I really don't want to go into too much detail, because it's hard and I'm still recognizing a lot of it, but I learned that abuse comes in many forms. Dysfunction and abuse are different. Unfortunately, most abusers do not change and we have to cut off contact to live our lives safely and happily. My dad didn't even know I existed until I was five, until this disease had hit and brought with it too many bills to handle. A custody battle ensued. They were told I was fine and happy where I was, while I was told he only wanted custody so he didn't have to pay child support. I was told growing up that the lack of insurance was why I couldn't try new things or get hurt, when dad had to keep insurance on me the whole time. I didn't see a doctor or dentist from the time I was maybe eight until I was a senior in college, due to that supposed lack of insurance, and now have spent a very large amount of time and money to try to fix those things... which I'm still working on. My dad gave us money so I could get a hot tub to do water therapy daily. The money was spent elsewhere, and that was always a dangling promise *if* I did well enough or acted nicely enough. I've already talked a little about the abuse I've gone through due to people outside of the family too, and I've realized a little more about who knew things about that and didn't do anything. I could go on, but I won't, mostly because it's hard. I don't want to be a bitter person or focus on the past, as much as it seems it would be good to get a lot of it out.

I won't lie - I'm having a hard time dealing with everything. Dealing with coming to terms with how I grew up is being very difficult, and part of me is so very angry. I feel like I'm having to discover who I really am now too, and that's not an easy thing to do when you're in the middle of living your life! It's a lot to take in a very short amount of time, especially when I'm physically feeling okay. I wish my physical pain matched my emotional turmoil. It usually does, and the fact that it really isn't is both great and unsettling since I'm so used to it.

I think one of the most comforting things to know is that I am not alone in anything I do now like I felt I was growing up. I'm so grateful to have a sister I've known since she was born, and now to add a brother and another sister onto that is amazing. I have a dad and a stepmom who are more amazing than I could've hoped for. I don't know that I could be their kid more than I am if they had raised me. I have T's family, who are so caring and so helpful. I have some of the best friends in the world, including other spoonies and the person who helped me to really open up my eyes to the abuse I've gone through and has really and truly helped me get through all this without going bonkers. And, of course, I have T too.

All these great people make up my FOC, or Family of Choice. I couldn't be happier to have them as a part of my life going forward.

Tuesday, July 15, 2014

One in a million? Try one of two-thousand.

Juvenile arthritis affects roughly 300,000 kids in the United States (or 1 in 250). Of that, 10% of kids end up with systemic. Of kids with SJIA, only 2-6% get uveitis. That makes me one of roughly 600-2000 (if I still count my 26 year-old self as a kid). That means I'm one in 42,000-125,000.

To put it into more perspective, that's about 7-20 kids in the whole state of Oregon or 10-31 in Wisconsin.

Everyone loves the thought that they're special, but damn, not like this.

Tuesday, July 8, 2014

Wedding Crunch Time!

I get married in *checks phone* 38 days (side note: HOLY CRAAAPPPP). My to do list, while shrinking, feels quite large. Stress is rising and, combined with constantly changing humidity, my body is pisssssssed right now.

I'm actually home sick today thanks to that lovely humidity. T had to wash my hair for me on Sunday because my hands were so painful to really even move. There is definitely an embarrassment that comes along with this. I know it doesn't matter to T, but it has to do both with dignity and frustration with my own body. To be honest, the fact that we're a little over a month out from the wedding and I'm feeling that poorly is frightening to me - and makes me glad I have people to do my makeup and hair for me.

I keep meaning to write more, to talk more about what's going on in my life, but wedding stuff has me busy and/or panicking soooo probably not going to happen until September. That said, I definitely will be updating the facebook page with stories I find, how I'm feeling, and perhaps even a little bit about the wedding!

I'll see y'all on the flip side of my name change!

Tuesday, June 3, 2014

A lot of changes

Fun things I've been up to:

  • Moving this week (until Monday)
  • Unpacking and getting organized (forever)
  • Skipping my Cimzia because I'm bad and didn't want to do the shot in the middle of moving so I'm on my fourth week post-shot. The med is working well for me though, so that's happy news.
  • Practicing my ukulele because I'll be performing in public for a few performances later in the month (WHAT)
  • Finalizing a bunch of the wedding planning - alterations and a hair trial at the end of the month and I still have to buy a good amount of stuff for decoration, etc. Shower and bachelorette party are coming up too!
  • Cutting toxic people out of my life. I may elaborate in the future, but I've come to realize who I want to spend spoons on and who sucks the life out of me. Life is too short, especially with limited spoons, right?
  • Starting PT again because my left knee just sucks. He's got me doing a lot to strengthen the left hip, because he thinks that is where a lot of the issue is coming from. He also thinks that my leg length discrepancy is actually caused by my scoliosis and not the other way around - laying down it's only maybe 1/8 of an inch, so that makes sense.
  • I want to revamp the site a little bit, so please feel free to share information on what would be helpful for you to have easy access to (journal articles? doctor lists? JA resources?)
All in all, I'm feeling like a chicken without a head haha. Things will improve at the very least after the move is over, and I really get down to business on the other things.

Hope you're all doing well!