Monday, October 12, 2015

My #MedXHangover

You may have noticed I haven't been writing as much lately. There's so much I can say about Stanford's Medicine X conference, and so much I still can't put into words, that it is hard to sit here and try to write about such a life changing time.

Photo courtesy of Kristin Coppens
How do you even put into words how amazing it was to spend time with these awesome patients and parents? How do I try to explain the vast amounts of information that I'm honestly still trying to soak up? Timeline it?

A few days before the conference I met with Gilles Frydman who takes amazing pictures.

I mean, seriously though.

I wish I could pay Gilles to follow me around and catch great pictures all the time! We talked patient engagement, religion, Middle Eastern politics, and changing healthcare obviously.

The day before our involvement in MedX began, I picked the amazing Kenzie up at the airport and, after some goofs, we made it down to Palo Alto. We were both exhausted - Kenz from traveling and me from staying up all night working on a paper - so we retired to our rooms and enjoyed the amazingly comfortable beds. I also may have eaten a delicious pizza while watching Harry Potter.

The next morning we excitedly headed on over to Stanford.

My inner child was screaming. I always wanted to be here at one of the best schools in the nation. But to be here with some of the coolest people? I can't even.

We got to participate in the Design for Behavior Change workshop with Dr. Kyra Bobinet.

We broke up into design teams and worked on ways to improve healthcare. My group came up with a great idea to get an international database of expert patients similar to health coaches that we can refer others to for help, along with a way to get patients certified as experts. Lots of organizations are interested in the idea and I'm excited about the possibility that it could happen. I think right now it's a matter of organization.

That night, us ePatients met and enjoyed each other's company. It was wonderful to spend time with some of my heroes, and to meet new ones.

Friday started MedX proper. Like at any good camp, Dr. Chu reminded us all to take a breath at the beginning. We recapped last year via Symplur stats. There was discussion on telehealth, on-demand medicine, rare diseases, the importance of community and health, misconceptions, and more.

Throughout the conference, We learned about the patient revolution and heard from patients working towards that state.

One of those speakers was my amazing roommate Cyrena, who spoke on her experience with mental and physical issues. There wasn't a dry eye among the patients when she was done.

And rightfully so.

Then it was time for more pictures.

Courtesy of KERN

Then I utilized the wellness room, which I *so* miss being back at work.

I made lifelong friends among all this amazing medical chaos, like Danielle, mom to a sweet girl with a congenital heart defect like our Sammy.

I heard about organizations like RateMyHospital which is giving the university I work at new ideas on collecting patient feedback in real time unrelated to the federally mandated surveys. There was a discussion on sex and intimacy issues, something that I'm hoping to do more with #chronicsex and CreakyJoints.

Afternoon Napper, Karolyn of #hospitalglam fame, and other amazing peeps
Together with Roni Zieger and others, I designed kits to help learners know what it's like to live with an illness.

Just hanging out with Roni Zieger, Chris Snider, and @ALSadvocacy. NBD.
I was able to attend a masterclass Roni put on as well on the role of peer-to-peer support, and I hope that we changed some minds in the room. And so many patients attending this session to hear from Britt on why she started #ChronicLife.

We spent time trying to forget whatever crud was going on in our lives and just enjoy each other when we could.

Leslie Rott & Joe Riffe = love
We traveled in packs.

Photo courtesy of Ally VeryLightNoSugar
We took silly selfies.

Maybe just me...
We had a patient pizza party Saturday night organized by yours truly which included charades and more. I talked with Dr. Chu on his Madison roots and how we love the same Venezuelan place. Cyrena and I stayed up designed weird experiments in our heads when we were far too tired to be functioning.

That's so much to go over, but it isn't everything.

The one thing I can explain is the before and after of MedX. Before attending, I wasn't sure I was worthy of being there - something that seems to be echoed by other patients as well. Participating in the Design for Behavior Change workshop helped cement some of that, in that my group came up with an amazing idea working together.

Meeting some of my friends from online groups helped a lot - putting faces and voices to names, exploring philosophical debates and weird instagram accounts, and just being hella silly while medical at the same time. We could discuss changing healthcare over pizza and gin & tonics while playing charades and taking medications.

Where else in the world could that happen but MedX?

Photo courtesy of Danielle
Even more than that, I met people who were excited to meet ME. I'm just a funky girl who lives in Wisconsin and has weird diseases. Why in the world would some amazingly influential people be excited to meet little old me?

And then I realized, partly due to Charlie's speech, it's because I *DO* belong here.

I do a lot more I think than I give myself credit for, and that's been echoed by people I've met now afterwards to discuss MedX ideas to apply here in our HC system. I think I needed to be reminded that I matter, that what I do matters, and that it all makes a difference.

Perhaps one of the best ways to explain the experience is to describe what the X stands for in MedX, and expand on that: "The 'X' is meant to encourage thinking beyond numbers and trends - it represents the infinite possibilities for current and future information technologies to improve health." It helped me, too, as a patient and as a person, learn that I too have infinite possibilities - that I can change the world. For now, I'll start with the University of Wisconsin health system... but who knows where it'll go from there.

I want to say thank you to the Kadry Foundation, the amazing sponsors that help with MedX every year, Gilles & Kern photography for taking great pictures of me, and of course the other ePatients, volunteers, and the executive panel as well as Dr. Chu. This conference blew my mind in the best way and helped me refocus on my local community.

Note: My attendance at Stanford's Medicine X conference was in part funded by the Kadry Foundation, but all opinions here are my own.

Also also I apologize if I left you out of this post! My brain can't handle the awesome.

Thursday, October 8, 2015


Death is a difficult subject to approach for many. I think a lot of it has to do with beliefs or fears about what happens to us and the loved ones left behind when we pass.

Last October I was lucky enough to visit a medium. It was an interesting experience. I'm unsure how much some of the changes the medium asked me to make have really improved my life, but the visit gave me a new outlook on things - and helped me feel more comforted by the loved ones I've lost, namely my great-grandma Katie Mae and Laura. They didn't have much to say via the medium because, as it turns out, they communicate directly with me a lot. Laura shows up in random butterflies when there shouldn't be any, and grandma gives me random hugs and smells we loved.

If you're thinking about seeing a medium, make sure to prepare.

A mortician recently wrote a piece on why it's important to start thinking about death early on - and why death isn't something to be feared... though some things associated with spreading a loved one's ashes somewhere could be.

When I die, I want my funeral or wake to be a party. I want people to enjoy each other's company and love each other. I love the idea of incorporating an ice cream truck or my favorite cocktails into that supposedly somber day. The last thing my loved ones need is more mourning and grief displayed publicly. 

And if I die before Theron, he's gonna need love, hugs, dad jokes, and support.

Sunday, October 4, 2015

Self-Care Sunday: eating well with illness

It seems like every few weeks I get this thing where I can't really eat. I just have no appetite. The first time this happened I was six... and lost a lot of weight in the middle of already being tremendously sick at the time.

You could see my bones. It was bad.

The most recent event happened to coincide with starting kineret and getting back from the JA conference. I'm not sure if it was from starting the drug, the traveling, or just because I hadn't been on meds for a while. My guess would be the latter because my theory is that I get swelling somewhere in my digestive system because I often feel bloated too.

Next time this happens I'll definitely pop off to the doctor.

But in the meantime, how was I supposed to eat and get any energy? I stopped by Whole Foods and took a gander, finding Probar Base. I already had peanut butter (and have since switched to a healthier PB - Peanut Butter & Co's Smooth Operator) so I figured I should try it.

This dairy free meal wound up being over 40 grams of protein which was great!

Living in Wisconsin, being dairy free is a little more than awkward. I've decided that I'll do minor dairy but try to do so at home... mostly because I have a lactose intolerance and it sucks. I've found I can tolerate dairy up to a certain point - or more, depending on the brand. There's a local farm that we get our dairy from and I've never had a problem with it.

I wasn't a huge fan of that shake, so I've switched to rice milk with my coffee instead.

When I can't eat a lot, I try to make sure that I get a good amount of protein so I can fuel my body. I tend to supplement with things that I love to eat but don't always let myself eat then - potatoes, lots of sweets, etc. Getting enough calories means more energy - and hopefully not falling asleep at work!

What are some things you do to make sure you eat well even when you aren't feeling the best?

Thursday, October 1, 2015


Growing up, I was sure I wouldn't really live long enough to do the parenting thing... now I'm 27 and married.

It's weird.

When I was younger, it was jammed into my head that my mother was clearly why I got sick. I think that in our family there is a genetic component to these diseases. I was adamant most of my life that having kids would just get them sick and they'd have to deal with crap like I did.

I'd never want a child to go through this disease if I could help it, so why increase the chances by procreating?

Since we got the guinea pigs a year ago, I've had a wee bit of baby fever. The piggies have certainly helped with that thank goodness. They are every bit as much my babies as any little humans could be. I love spending time with them and making sure they feel safe and loved. I know a lot of that has to do with the background we seem to share - some level of abandonment and neglect in our histories.

Jaq, who has always been skittish, will even let me pet him while he's in the cage occasionally! He and Gus give me kisses, and Oreo loves getting pets.

I just want them to be happy and healthy and safe. I think they are.

Still, I've been considering the idea of little people in my life. Now that the kineret is really helping, this is becoming more of a possibility.

So I was a little sad to read another reason for me to be cautious... trauma can be passed down through generations. Thanks epigenetic inheritance!

If you think about it, the idea makes sense. We would want our children and grandchildren to know about trauma we've been through so they can better prepare their bodies for it. It seems like an evolutionary trait. Knowing that trauma can also set off autoimmune or autoinflammatory diseases, though, gives me extra pause.

That's just another layer of crap any children T and I have would inherit. I don't know if that's fair.

T and I did have an interesting conversation the other day where he said he's always seen me as the foster/adoptive parent type. I'm sure seeing me with the piggies doesn't hurt that notion.

The more I think about it, the more I like it.

That isn't to say that we won't have a child of our own. Right now, though, working on my health and helping my niblings is a little more important than thinking about all this.

They're entirely too adorable.

Tuesday, September 29, 2015

Terminology Tuesday: chronic fatigue syndrome

Before we get to what CFS is, let's make sure we all know the names it goes by: Myalgic Encephalomyelitis (ME), Post-Viral Fatigue Syndrome (PVFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), and Systemic Exertion Intolerance Disese (SEID). You may see it called CFS/ME too.

There isn't a test to diagnose this, nor is there a known cause (except for PVFS kinda). Basically your doc has to rule out other things like sleep disorders, other autoimmune/autoinflammatory diseases, and some mental health illnesses (mostly because they think everyone is crazy).

Symptoms include fatigue (NO WAY), difficulty with memory, having a hard time focusing, sore throat, muscle pain, joint pain, headache, swollen lymph nodes, sleeplessness or sleep that isn't restful, and extreme exhaustion or fatigue from doing something physical.

You can treat some parts of the disease, like using sleeping pills to try getting more restful sleep and pacing yourself during activity. Some people even work out with a trainer to keep themselves active but not overdoing it.

Monday, September 28, 2015

30 Things About My Invisible Illness You May Not Know

1. The illness(es) I live with is (are): systemic juvenile arthritis, fibromyalgia, patellofemoral arthralgia, psoriasis, anxiety, depression, post-traumatic stress disorder, food intolerance (dairy & gluten), and suspected Raynaud's.
2. I was diagnosed with it in the year: 1994, 2012, 2014, 2010, 2011, 2011, 2015, 2012, and not yet respectively.
3. But I had symptoms since: 1993, 1993, 1993, 1995, 1995, 1994, unsure, unsure, 1993
4. The biggest adjustment I’ve had to make is: learning how to deal with the health/insurance/care world very quickly
5. Most people assume: I'm ill because I'm fat - it's actually the other way around.
6. The hardest part about mornings are: actually waking up is hard.
7. My favorite medical TV show is: House, as always.
8. A gadget I couldn’t live without is: my iPhone. I used to be an Android person but the iPhone 6 won me over.
9. The hardest part about nights are: getting to sleep.
10. Each day I take 12 pills & vitamins. (and one syringe!)
11. Regarding alternative treatments I: am really skeptical. You have to do your research because a lot of alternative treatments have their own interactions, risks, and side effects.
12. If I had to choose between an invisible illness or visible I would choose: invisible. I've always felt lucky that my illnesses are mostly invisible because I can get by 'as normal' if I want or need to. I can't imagine how hard it is to handle the more visible issues.
13. Regarding working and career: I enjoy my current job but it will be nice when I can start doing more of my own thing.
14. People would be surprised to know: that I'm sickeningly sweet. I tend to use my blog and twitter account to get out all my frustrations and upsets so that they don't contribute to me feeling icky.
15. The hardest thing to accept about my new reality has been: probably how uncaring some people are. I am a super hippie and way into compassion, so I'm sure there's a disconnect there too.
16. Something I never thought I could do with my illness that I did was: run again, and I'm getting there!
17. The commercials about my illness: well there really isn't one for SJIA. The fibro ones make it seem like it's all women and we're all kinda whinny. No thank you!
18. Something I really miss doing since I was diagnosed is: ... since I've been sick my whole life, there's not much, but with the gluten intolerance, I would say not having to plan my meals so much... OMG and Olive Garden breadsticks.
19. It was really hard to have to give up: OG breadsticks...
20. A new hobby I have taken up since my diagnosis is: mostly everything! I taught myself to play the ukulele and I'm getting really good at singing.
21. If I could have one day of feeling normal again I would: get a bunch of things done around the house - and do!
22. My illness has taught me: that even in the worst situations you can find blessings. I hate being sick and I hate that many people I know are sick - but I'm grateful that our illnesses have brought us together.
23. Want to know a secret? One thing people say that gets under my skin is: when they make comments about my rashes. Thank you. I know I look like a cherry popsicle.
24. But I love it when people: ask what they can do to help. Even though I don't really take people up on it, it's nice to have people who are willing to make food or some hang out during crummy days.
25. My favorite motto, scripture, quote that gets me through tough times is: Living with Still's is still living.
26. When someone is diagnosed I’d like to tell them: to learn as much as they can about their illnesses and remember that they are the expert in themselves.
27. Something that has surprised me about living with an illness is: how many awesome people are out there to connect with.
28. The nicest thing someone did for me when I wasn’t feeling well was: to text me and calm me down during a panic attack.
29. I’m involved with Invisible Illness Week because: the vast majority of my issues are invisible!
30. The fact that you read this list makes me feel: happy :)

Thursday, September 24, 2015

Next week (September 28-October 4) is Invisible Illness Awareness Week!

I'll be utilizing the #ChronicLife tag on twitter from Britt 'Hurt Blogger' Johnson to share what it's like to live with an invisible illness in order to raise awareness.

What will you do?

You know what I'll do? Live tweet flying home from MedX! Join my journey Sept 24-27 and my journey home on the 28th! I'll be live tweeting the whole time so hit me up @kirstie_schultz, catch the live streams at the Medicine X website, and join in the conversations using the tag #MedX.