The Dark Knight Rises

Posted on by Grayson

As I write this, I’m enjoying The Dark Knight Rises, by far my favorite Batman movie. I’ve written a little before about how Batman is such a great metaphor for fighting our illnesses, and this movie just proves the idea further.

Towards the end, Bruce is stuck into a pit – a jail supposed to be in a Middle Eastern country that no one can escape due to the nature of it being a pit. People can make the climb with a rope to hold them while they fail and fall back down into the pit.

It’s not ideal for anyone to escape, let alone Bruce in the state he arrives to the pit in. His body is broken literally, with vertebrae sticking out of his back. Other bones are broken and cartilage is missing from his knees and elsewhere.

He tries a number of times and fails, until a doctor gives him the advice that he must fear death again. In order to do this, he must climb without the rope – meaning if he fails, he will perish.

Bruce accomplishes his task, doing all of this while training his body to do this.

Eventually he makes it back to Gotham, fighting Bane who he eventually does incapacitate, leading to this great line from Bane: “I broke you. How have you come back?”

The whole exchange between Bane and Bruce/Batman is not unlike that I’ve had with my illnesses. I have fought hard, exhausting myself against something I cannot beat. I have been broken and down, having to learn how to do things all over again and – once again – starting PT with the very basics. I have climbed out of my own jail pit and returned stronger to fight my foe.

That doesn’t mean I always have a Batman mentality with these illnesses. Sometimes, with my anxiety, depression, and PTSD especially, I hear the negatives about myself. I tell myself how horrid I am, how unworthy I am of the things I’ve participated in. My mental health issues convince me that they are the necessary evil, that they like Bane are here to liberate me from believing in false idols.

It’s amazing the parallels one can find with Batman stories and our illnesses.

Here are a few of the others quotes from this particular film that resonated with me:

Bruce Wayne: Why didn’t you just… kill me?
Bane: You don’t fear death… You welcome it. Your punishment must be more severe.
Bruce Wayne: Torture?
Bane: Yes. But not of your body… Of your soul.
Bruce Wayne: Where am I?
Bane: Home, where I learned the truth about despair, as will you. There’s a reason why this prison is the worst hell on earth… Hope. Every man who has ventured here over the centuries has looked up to the light and imagined climbing to freedom. So easy… So simple… And like shipwrecked men turning to sea water from uncontrollable thirst, many have died trying. I learned here that there can be no true despair without hope. So, as I terrorize Gotham, I will feed its people hope to poison their souls. I will let them believe they can survive so that you can watch them clamoring over each other to “stay in the sun.” You can watch me torture an entire city and when you have truly understood the depth of your failure, we will fulfill Ra’s al Ghul’s destiny… We will destroy Gotham and then, when it is done and Gotham is ashes, then you have my permission to die

Bane: Ah, yes… I was wondering what would break first… Your spirit, or your body?

John Blake/Robin: Not a lot of people know what it feels like to be angry, in your bones. I mean, they understand, foster parents, everybody understands, for awhile. Then they want the angry little kid to do something he knows he can’t do, move on. So after awhile they stop understanding. They send the angry kid to a boys home. I figured it out too late. You gotta learn to hide the anger, practice smiling in the mirror. It’s like putting on a mask.

#raeganswish #rake – pass it on!

Posted on by Grayson

It’s been a hard year for the SJIA family. We’ve lost some fighters, and nearly lost others. Raegan has had a particularly rough year with long hospital stays, various infections, and complications from her illness.

She was granted a wish from Make A Wish! Part one of Raegan’s wish is to head to the Caribbean, which she’ll do soon, but part two? Get everyone participating in Random Act of Kindness Everywhere (RAKE).

Please help do what you can to support Raegan! I paid for breakfast for the person behind me the other day and had the checker hand the card below to them.

What random acts of kindness will you commit today?

 

What is #MedX doing in Wisconsin?

Posted on by Grayson

Don’t worry – I promise MedX will stay in sunny and amazing Northern Cali!

Since I’ve returned from MedX, I have presented information on and from the conference to people in quality, patient experience, and the docs I work with here at the University of Wisconsin.

The first presentation didn’t go as well as I had hoped just because I wasn’t prepared for some of the questions. On the other hand, I know I’ve made an ally in one person involved in patient experience due to her personal life living with a chronically ill partner. We commiserated on unkind doctors, lack of emotional support, and more. I even brought up #ChronicSex which she was pretty stoked about.

Side note: they’re hiring for her boss so if you’re interested, hit me up.

I’ve been asked to write something up for the healthcare wide internal communication here, which is pretty badass.

Perhaps the most rewarding thing was to speak to the docs I work with about all this. Very few of them knew previously how active I’ve been in health activism and, I think, it was refreshing for them to know they have patients on their side.

I discussed handing out resources for patients and brought up tags on social media that are well known and not always illness specific like #ChronicLife. I brought up connecting new patients with local chapters of national disease orgs like the Arthritis Foundation – something that seemed pretty well received by my local AF peeps and our docs. I even brought up this idea that came from my group in the Designing for Behavior Change workshop on some way to certify patients in their illness as well as mentoring/leadership so you always have a local patient that might be able to help others.

I’ve never seen a room so awestruck before over me as these docs I work with every day.

It was awesome.

The organization-wide stuff will take a while to get going, to push through, and it’ll take more allies. It seems, though, that my docs and the clinic managers really are embracing some of these ideas.

I can’t wait to see what the future brings.

Death

Posted on by Grayson

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.

Self-Care Sunday: eating well with illness

Posted on by Grayson

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?

 

Terminology Tuesday: chronic fatigue syndrome

Posted on by Grayson

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.

 

30 Things About My Invisible Illness You May Not Know

Posted on by Grayson

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 🙂

11 Health Care Mistakes You Don’t Know You’re Making (and how to avoid them)

Posted on by Grayson

It’s really hard to be a patient. There are many things that we have to deal with, physically, emotionally, and mentally. When we’re facing chronic illness issues that could have us afraid, it’s even worse.

One way to help yourself is to become an engaged patient in your own care. It’s easy at times to paint a picture of someone who is an engaged patient like Britt from Hurt Blogger. But if you don’t know Britt, it may not be as easy to paint that picture.

Below are 11 mistakes that patients can make. This is not an exhaustive list, nor is it in any sort of order. If you’re looking to be engaged in your care, these are issues you’ll have to work on tackling.

Not disclosing all information

When we go to the doctor, it’s easy to not disclose certain things. Maybe you had chlamydia in college that’s been cleared up and you don’t think anyone needs to know about it. Diseases or issues – even when cleared up – can still have after effects and all sorts of similar things, so it’s important to disclose these issues.

Likewise, if you had a really bad cold and you practiced religious healing or drank 10 gallons of honey lemon tea and ate hot chili to get rid of it, let your doctor know. If you get a lot of upper respiratory infections like colds, it could mean something important.

Avoid this by sharing things with your doctor! Certain things, especially pertaining to sexuality and intimacy, can be difficult to share. We live in a Puritan society still in many ways. That combined with having a disability makes us feel as though we shouldn’t be sexual beings. Docs are there to help you, though, so please discuss everything affecting your life with them.

Downplaying or exaggerating symptoms

One of the issues I ran into when getting diagnosed with fibromyalgia was that my doctors didn’t realize how badly the pain was affecting me. Without emphasizing that, they didn’t realize some of the symptoms I had were connected.

Likewise, exaggerating symptoms of the abscess I had (that my PCP at the time thought was a pimple) led to me being laughed at and some harsh notes in my chart.

To fix this, make sure that you highlight the impacts symptoms or illnesses are having on your life as well as any fears you may have. If I had gone over my fears about the abscess, perhaps my former PCP would’ve treated me a little better.

Not following up

Have you ever had an appointment where you’ve been asked to follow up and you just didn’t?

Don’t do that.

Following up allows your care team to see how things are turning out. Sometimes we may have a side effect to a medication that we don’t realize is one… because we haven’t reconnected with our doc!

At the very least, send/leave a message with your care team to let them know how you’re doing.

Not bringing up big issues in your life

While I did change rheumatologists, I really do value the care I received from the nurse practitioner Kathy at my last office. The doc didn’t often have that much time for me, but Kathy always did. I cut contact with my mother in the middle of planning my wedding, moving, meeting my dad, and my sister moving to the other side of the country. Any one of those things is a big deal and can affect our lives in a huge way. Kathy was great in that she always asked about these things.

I needed help and didn’t really have time to meet with a therapist. She followed up with me and checked in with me during the wedding planning process and everything.

That’s how my new care team is.

That is how your care team should be. If they don’t ask these things, bring it up. Say “Hey, I know this may not be important, but I’m having a lot of drama in my family and it could affect my disease.” That can lead to a conversation about lowering stress, boundaries, and could lead to a therapist appointment.

Not tracking factors in care like pain or side effects
Your doctor isn’t with you every day. They don’t live inside your body. You have to do a little work at a minimum to help with your care.
A great way to do this is to track your pain levels and what tasks you find hard or easy. There are some great apps out there that can help. I’ve talked a bit about Arthritis Power before so check out this link to learn more.
Myra is another great app developed by Crescendo Bioscience to track rheumatic disease symptoms. It tracks your joint pain, morning stiffness, fatigue, daily functionality, medications, labs, and also gives you the big picture summary of it all. It’s pretty great.
I use both of these apps to track how I’m doing. It honestly really helps me check in with myself. Sometimes it gets me focusing a little too much on the pain, but it happens right?
Some people use excel to track their symptoms and meds and side effects and all sorts of goodies. Do what works best for you and fits in well with your life. For me, apps on my phone really help because I’m on it more than the computer when I’m home.
By tracking your symptoms and the like you’ll be more prepared for your appointments.
Not preparing for your appointment
Life is super busy. It gets hard to keep track of everything we’re doing sometimes. I’m really decompressing finally from meeting Emily and the JA conference and I already have to start thinking about MedX!
There are always going to be times where we aren’t quite settled down enough to accomplish everything we have to do. That means our appointments may not be as helpful as they could be. Docs have this happen too, trust me.
Tracking your symptoms will really help prep you for your appointments. Other things you can do are keeping a diary or taking pictures and writing a short blurb or just making a note about how you felt on your calendar. Bring those things in so you can discuss them. It helps the appointment go more smoothly but also really helps your doctor know you’re engaged and dedicated to your health.
Medications
Oh medications. Medicine. Good ol’ pharma.
I hate taking medicine. The fact that I’ll have to keep taking it until the day I croak doesn’t help. I have had times where I just need a break from medicine. Early in March was one of those times. The fact that I rushed to California for Sam and my sister gave me an excuse to keep that up. I saw my rheumy shortly thereafter and my labs were gross, but I felt good, so we kept up with not keeping up with my biologic…
And then came the flares.
This was the first time I was 100% honest with my doc about the medicine issue. I just needed a break from the side effects and it didn’t feel like it was helping much. Now that I did my last Cimzia shot, I can say that it aggravates my fibromyalgia too much to really help with Arthur. It sucks big time.
The point is that being honest with my doc allowed us to start looking at other meds early, before I needed them. I got comfortable with the idea of a new med and we figured out when to start it due to my busy traveling schedule this year.
There are certain meds I just cannot stop, and probably never will be able to. I can’t imagine what would happen if I forgot a Lyrica dose right now. Holy crap. BUT that also helps me be on top of refills and other things related to those meds.
The fact that I use Pillpack really helps too!
Seeing the wrong doctor
This can be really hard for chronic pain patients. Sometimes I don’t know if the issues I’m dealing with are rheumatic in nature or a new thing, so I don’t know if I should see my rheumy team or my PCP.
One great thing that can help with this is sending a message via my EMR to my rheumy. That team is friggin’ amazing at helping me out with this stuff.
So when in doubt, ask.
Not paying attention
It can be really hard to pay attention in a medical setting, especially if it’s emotionally charged. Here are some ways to fix this problem.
Bring someone with you! Bring your mom or spouse or best spoonie friend along to discuss what you’re going through. It helps to get an agenda set up at the beginning of the appointment, listen throughout, and summarize too. Having someone else there can help.
Most docs now have to print an after-visit summary, which can be helpful as long as you ask for them to be detailed in their summary.
Not knowing anything about your illness

 

Honestly this one bugs me the most. I know others with Still’s who don’t really know anything about the disease or the treatments. This can create a paternalistic environment where your doctor controls everything and you may not have much of a voice in your care. This can frustrate docs too. They have a required number of patients to care for and sometimes being so involved with one patient gets to be really hard.
You certainly don’t have to go as far as I have with checking out medical textbooks from work and learning clinical immunology in your spare time… but learn. Check up on lab terms you don’t know or read some medical studies about your illness and meds. Learn how to spell the medications and what the common side effects are.
Of course there are always great places to ask questions when you don’t know or can’t find the answer. It’s important, though, to recognize that as a patient you are an expert in a part of your care – what affects your body and how you feel. That counts for a lot, so get involved.
Not engaging in care
This goes along with the section above a lot, so there may be some repetition here.
When my rheumy and I initially talked in October, I brought up Kineret. I wanted to start it or another one of the FDA approved SJIA medications but my former rheumy team wouldn’t do that. My current rheumy was astonished that I’d not been on those at all. We decided that would be a goal once I failed Cimzia.
I recognized I was failing Cimzia and held the med to see how I would feel. In doing the most recent shot a few weeks ago, I know this isn’t a medication that helps me more than it harms.
We discussed this via MyChart once I had asked for a boost of prednisone, and she sent me some journal articles. I did my own research too and felt most comfortable with Kineret over Actemra and Ilaris.
We discussed when would be the best time to start this drug as the JA conference was approaching. We decided together that I would do this last Cimzia shot to hold me over and start Kineret once I’be gotten back. We came up with a schedule for labs to see how that helps and decided to check in with each other via MyChart.
Engaging in your health care is incredibly important. It’s your body and your life – you need to figure out what works with it. You also need a doctor or care team that gets that. I’m lucky that my doctor right now does.
The idea of patients engaging in their own care is gaining more and more popularity. More health care systems are emphasizing this via their quality and compensation measures. That doesn’t mean all doctors are subscribing. If you find a doctor that’s still more into his white coat than taking care of you, get out! Make a call to docs in the area. Use Health Grades and other rating sites to find docs to check out. Treat a new patient exam like an interview.
Again, you live in your body. You’re the expert on your allodynia and other pain. You know how medications put you out of it for three days – and when you can’t handle that. Take control of your health!
Just, um, don’t take my spoons.

You know what isn’t a mistake? Joining me on my MedX journey Sept 24-27! 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.

 

Terminology Tuesday: adverse event

Posted on by Grayson

Have you ever been reading material about or listening to an ad for a drug for your disease and wondered what ‘adverse event’ even means?

You’ve come to the right place!

This one is really simple. An adverse event is just a fancy term for when someone experiences something negative from a medication or product that you wouldn’t want to have happen. So, really, it’s a side effect without the larger number of patients affected.

An adverse event is considered serious when things like disability, hospitalization, something life-threatening, or death occurs. They also generally count birth defects if the mother was taking the drug or using the product while pregnant.

If you ever have a serious adverse event, obviously get help. That’s the first thing. Then you and/or your doctor can report the event to the FDA.

I’m sure you could also unofficially bring up difficulties during MedX (Sept 24-27) and the struggles to get your HCPs to hear you! 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.

 

Munchie Mondays: how to get enough protein

Posted on by Grayson

One of the tough things that those of us with chronic illness often get into is dealing with eating issues. We don’t always eat well, whether that’s the quality or the amount of the food we take in.

Personally I seem to go through periods of time where my body says nope and won’t really eat much. This poses a problem, especially with me being overweight, since my metabolism doesn’t move then and my body holds on to the fat I do take in during the day…

Yup. Not eating makes you fatter.

Hooray.

One way I’ve encountered that is to eat stuff with high protein and a good amount of nutrients – protein bars.

A probar with peanut butter? Holy cow!

Except not, since it’s all dairy free.

I wind up with about half of the protein I need for the day with this combo which is great.

Until I found this combo, Larabars and Luna bars were my go to. They’re still good, but Luna tends to have a little more dairy than my body is being able to handle lately, so they just can’t be my every day bar right now. Larabars aren’t as filling as this probar is.

Others find that soy based products are good for them. It seems like my body isn’t in favor of those right now which, combined with my gluten issues, will be a big reason why I won’t go vegan… Well, that and I love pork too much.

Nuts and other foods can be helpful but, yet again, my body seems to have issues with these on their own. In the Larabars, I can do nuts, but they’re also not the nuts I would go for on their own. I’m not a big date eater.

I try to make sure that I eat lean proteins – fish, shrimp, chicken – when I can.

What are some ways you make sure you get enough protein?

Does your mind need brain protein? Some interesting things to ruminate over? Then join me on my MedX journey Sept 24-27! 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.