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.