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.

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.

 

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!

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?

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!

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.

 

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?

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.

 

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.

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)

Kineret:
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.

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.