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.

Monday, September 21, 2015

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

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.


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.

Saturday, September 19, 2015

Bring on #MedX!

Right now I'm on a plane, heading out to San Francisco. My first order of business is spending time with these rascals.

Then I get to hang out with all the cool peeps at Stanford (which honestly I'm freaking out about because STANFORD) and discuss the thing we're all passionate about - changing healthcare for the better.

I hope that you'll 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.

Also, since I'll be doing all the things, I've toned the blogging back this week (even though this was all written in July... I've been ahead) so look forward to more writing next week!

Thursday, September 17, 2015

Therapeutic Thursday: books inspired by mental illness

When someone mentions mental illness and books, probably the first things that pop into your mind are One Flew Over the Cuckoo's Nest or Hyperbole and a Half.

Definitely read the latter by the way. Allie is amazing.

There are a lot of varied books, both fiction and non-fiction, on mental illness issues that I think are great reads. Now, I haven't read all of these, but they have great reviews and look interesting for sure.

Do you have any favorite books on mental illness?

I hope that you'll 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.

Tuesday, September 15, 2015

Terminology Tuesday: adverse event

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.

Monday, September 14, 2015

Munchie Mondays: how to get enough protein

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.


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.

Sunday, September 13, 2015

How being on the beach helped me feel amazing

While T and I were in Florida, we tried to hit beaches when we could. It wasn't just because these beaches actually bordered an ocean instead of a lake.

I was almost six when we got my misdiagnosis of leukemia. I had to make a bucket list during that time - nothing that a child should have to do, but I'm glad I had the opportunity to do so. At that point, my list consisted of things like going to the fair, seeing a movie, and going to the beach.

Part of the reason I loved the Oregon coast so much was that it is where the Sea Lion Caves are. If you're ever in the area, it's a must see.

Regardless, the coast was always my happy place. The coast in the Northwest is almost always cold and windy, but beautiful nonetheless. I loved walking in the sand, exploring the caves, and playing in the water.

We never did get to go too much growing up, so one of the things T and I did when we were out in Oregon in 2010 was spend the better part of a week on the coast.

Getting back to the bucket list idea... I never really thought I would make it out to Florida. Of course there's the draw of Disney World and the other parks, but we were poor and that family couldn't be bothered to drive an hour to the coast. I doubt any trips to Florida would've been in our futures.

Oregon will always be home to me, but there is something so beautiful about traveling and exploring the amazing things in the world. We hit up a couple of beaches in Florida and got to catch some great pictures.

It was interesting though. Many of the days we visited the beaches, we went later in the day because we had done something big earlier in the day. I should've been exhausted and passed out in my bed, but here I was at these beaches seeing turtles and turtle nests and beautiful storms roll in.

It reinvigorated me. It gave me the energy to keep going so we could go get dinner or drive more or whatever it was that we had to do.

Maybe that's why I wanted to go so much when I was little and so sick. Maybe, somehow, nature helped me to feel my best even when nothing else could.

While I'm in California next week, I definitely want to visit at least one beach. I hope that you'll 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.

Thursday, September 10, 2015

Mental Health and Arthritis #WorldSuicidePreventionDay

Today is World Suicide Prevention Day. On Sunday I'll be participating in an Out of the Darkness Walk with the American Foundation for Suicide Prevention in honor of those with autoimmune arthritis and autoinflammatory diseases that we've lost in recent years to depression and mental illnesses.

One of the biggest reasons I have this tattoo on my wrist is to remind me to believe in many things - that remission is possible, that I'm worth the effort of self-care and self-love, that I'm enough... and that this pain we go through is worth it.

When things are their worst, it isn't always possible to remember that.

Recently RA Guy and the great people over at Joint Decisions put on a webinar about mental health and arthritis. Several things stuck with me, especially the fact that you're twice as likely to have depression when you have RA as someone who is normal.

The stages of grief - denial, anger, bargaining, depression, acceptance - are things that those with chronic illness tend to experience in a cyclical rather than linear manner. Maybe today I'm angry about being sick and tomorrow I'm fine with it and the next day I bargain with an unseen Arthur to knock it off.

RA Guy talked about things that he's found helpful like humor, breaking down tasks, asking for help and being open to accepting it, positive or motivational thinking, etc. The biggest thing that he touched on that really resonated with me was to allow yourself to process and feel. I think we often try to ignore the sadness or other emotions (like in Inside Out) to be happy all the time.

When the shit hits the fan, we really need to work on savoring the good we experience, connecting with resources, practicing self-compassion/love/care, and, perhaps most importantly, advocating for ourselves. It's easy to let others make decisions, especially about your care, if you're depressed or dealing with some tough subjects. Just don't forget to add in your voice and speak up for what you want. It can help you feel better about yourself.

Another thing that was good to be reminded of is how important our emotional and mental health is. These things are just as important as physical health, so please remember to take time and address issues you have in all areas.

A few times, RA Guy and the doctors on the webinar remembered to hammer home the idea that you have to feel comfortable bringing up these issues with your doctor. If you don't, you have to figure out how to get to that point, even if it means changing your health care team members. You have to be able to be open with all your providers and make sure they know about your health issues, physical or mental.

Other tips from this webinar were to be adaptable, write or blog, practice mindfulness, remember you can't change others, get realistic with your daily goals, and to become educated about your disease.

These changes won't make things perfect. Life still might suck a lot. But a change in how you handle yourself, no matter how small, can really help and have an effect on many other parts of your life. As RA Guy said, "I'm prepared to deal with how I'll feel tomorrow." Maybe that'll mean you feel like crap physically or mentally - but if that happens, you can open up your toolbox full of tips.

On a more personal note, I want to share a story about my struggle with mental health issues.

Depression isn't the same as being sad, but is more the absence of happiness and enjoyment. It's when things that you love and enjoy and are passionate about no longer bring you joy. You think irrationally, only realizing it if you have to explain things to someone else.

Three years ago I was *finally* diagnosed with fibromyalgia, though I'd likely been dealing with it for most of my life. I had recently started seeing a therapist after having to call a hotline because I was on the brink of self-harm or worse. I was missing more and more work as a result of my pain and was on the brink of losing my job and, this combined with continued emotional abuse from my mother, other illness issues, and having to stop graduate school... I became very depressed, both from the pain and the feeling of not being in control of my life and my destiny. More than once, I thought about crashing T's car into a pole or something. If I didn't die, I'd wind up in the hospital and at least get some relief from pain medications. I look back on that time now and wish that I had spoken up or made changes sooner.

For the first time in a long time, my pain from my SJIA and my fibro are both, mostly, under control. It took me three years, trial and error with different medications, and making major changes in my life to get to now - literally.

If you know someone who struggles with depression know that, while you can't directly help their illness, you can be supportive of that amazing person. One of the things that has helped me the most is knowing that T and I have similar struggles with our mental health. Because of that, he and I are very good at helping each other, which can be as simple as snuggling or as involved as calling the other's therapist to warn them when things aren't going well.

Regardless of whatever else you do today, give someone a hug. Tell someone you care about them or love them. Ask how they're doing, not as a formality but because you really want to know the answer.

You know where else you can find more talk on mental health with chronic illness? At MedX! I hope that you'll 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.

Wednesday, September 9, 2015

Do you love Lucy? Click to find out ways to help her!

Last week, we found out that there is a Lucille Ball biopic in the works. And why not? She's AMAZING in so many ways.

One of the awesome ways she stands out is her ability to be hilarious despite her rheumatoid arthritis.

Her battle with RA was quite intense in the beginning as she remarked in her autobiography "Love, Lucy."

I was worried that her battle with RA would, yet again, be swept under the rug. I hoped that Aaron Sorkin and Lucy's children, Lucie and Desi Jr., would listen to someone and figure out a way to depict what happened in Lucy's youth.

I realized that, instead of waiting for someone else to decide this was a worthy task to take on, I needed to head up the effort. After all, Lucy has helped me nearly all my life as I share in my latest post over at CreakyJoints.

I hope that you'll join me in signing and sharing this petition asking for Lucy's rheum battles to be included in the upcoming film. I'm sure that Cate Blanchett would do an amazing job of portraying the pain we all face every day.

Tuesday, September 8, 2015

Terminology Tuesday: brain fog

While brain fog is a term that a lot of health care practitioners will kind of understand, it isn't necessarily a diagnosis in and of itself. It's a symptom for many diseases, including many autoinflammatory and autoimmune disease.

For those of you who've never experienced brain fog, I'll try to define it in ways that can make sense for you. Imagine that you've been out of work for a week with the flu. It's your first day back and you're already exhausted and not focused, but then you hit that slump time of day when you normally might reach for a soda or go for a walk. Your brain stops processing things. The focus issue gets worse and worse. You can't find words you're looking for in your head or, if you do, you can't actually speak them. You have the inability to access memory so you'll go put your coffee in the microwave and two hours later realize you left it there.

And that happens just almost every day for many of us.

It sucks.

What sucks even more is that there isn't really much to do except to treat the underlying cause of the condition and, if needed and possible, the symptoms. You may see a chronic illness patient on an ADHD medication because it helps them focus and helps with a lack of energy for example. That doesn't completely kill the brain fog though.

For those of you living with brain fog, what are some ways you deal with it?

To combat brain fog, write yourself notes to 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.

Monday, September 7, 2015

Medical Monday: link roundup

There are SO MANY new things to tell you about and links to share.

Shout out to the younger adults dealing with chronic illness and pain! Here are 15 things no one tells you about chronic pain as a 20-something. #7 is my favorite because bunnies, duh. And navigating college while sick? UGH.

And as a woman? It sucks.

Oh hey, and juvenile arthritis is getting more and more defined. Speaking of JA, did you know Miss Teen Minnesota has it? And so does Miss Tennessee! And did you hear about this uveitis fighter in the UK? Have you seen this letter to healthy people?

Here are 17 things only people with autoimmune diseases understand (I'd add most chronic illness, especially as SJIA/Still's is autoinflammatory). I love #4 though. I would apply that same caveat to 29 things only someone with RA would understand. And hey, while you're at it, check out the results from the Early Symptoms of Autoimmune Arthritis study and AARDA's recent study on fatigue.

Speaking of autoimmune illnesses, have you ever wondered why the majority of sufferers tend to be women? It may be because women's immune system genes operate differently than men's.

Having an invisible illness sucks because people can be really mean, doing things like calling us lazy without knowing what we've been going through. And even when they aren't, we often don't feel like we can answer simple questions like "how are you?" because of what we need to say. Sometimes even doctors don't believe we're sick. Here are some of the other things we're tired of hearing or dealing with... including that old saying, "We're all patients."

And that's on top of dealing with things likes morning stiffness (check out these tips to ease it) and driving three hours to the rheumatologist. We grieve past versions of ourselves and have to throw out our fancy things in exchange for things that are more easily used.

Let's talk a little bit about disability services and issues, like why the ADA is beautiful... or the slightly more scary ways to protect yourself. We can also see the very real effect the ADA has on lives all over.

On a similar note, Congress recently passed a bill requiring hospitals to disclose when the patient hasn't been admitted but instead is under observation. This change could save patients TONS of money.

I met with my dietitian the other day and ugh. I need to start getting more into exercise but I'm not sure where to start, because I constantly get too excited and overdo it. Maybe I need to look at these questions and do some soul searching.

If you're heading to the emergency room and have chronic pain, take a look at these awesome pointers. I usually do Urgent Care over the ER since we live right by a UC spot, but I think this can still apply there. We're often treated like drug addicts, so watch out for that too.

A lot of people in health care need reminders about how harmful slurs and putdowns are.

Part of the stigma associated with mental illness is that things like depression make you this black hole of a person. In reality, you're still you, but just dealing with really heavy things. I've had other patient advocates sadly call me out about how I can still do great things despite depression, as if I'm maybe not depressed. THIS is how.

Anxiety is also a biggie for those of us with physical illnesses.

Love someone dealing with a mental illness? Check out these ways to be an ally. You may also want to share the free Crisis Text Line with them too. If your loved one deals with PTSD, check out this post.

Interested in more sciencey stuff on mental illness? Check out this study on the role the brain plays in stress-induced anxiety.

Bottom line? We HAVE to change how we talk about mental illness. And being positive all the time isn't going to help.

Do you talk to yourself a lot? You're a genius! No, seriously!

In drug news, there could soon be a drug that targets cells directly responsible for cartilage damage! There is also research going on into biofilms and their role in lupus. New rare disease treatments should be coming down the pipeline too, though that may take a while. Stem cell treatments for people with MS are hella effective at least three years out.

You may want to take a look at these cool sleep products. The spoon me pillow was practically made for us.

Do you have an MRI coming up? The Malleable Mom recently did and, to be even cooler, she wrote up tips on how to ace yours. Speaking of scans, there's a new brain scan that can see pain!

Did you see that Cyndi Lauper has psoriasis and is on a biologic? And did you know Elvis would likely now be considered a fibromyalgia patient? Noah Syndergaard of the New York Mets is a very tall starting pitcher and he's raising awareness of Sjorgren's Syndrome.

Yelp has long been known to house reviews, but now they're adding a lot more as far as the healthcare world goes. Patient feedback is critical to change, so don't stop there! Contact patient services/relations with your local health care group if you're having a negative or super amazing experience. Get involved in advocacy.

One thing that ends up being a barrier to care is transportation. It can cost a ton and not really be helpful in that the patients end up waiting around forever. In Nairobi, oddly enough, disabled transport is kind of awesome.

If you have a fitbit, check out this RoadID that can fit right onto your wristband!

The FDA just approved the first printed drug. That's right! You can get a seizure medication printed in 3D! (There's also this cool smart watch that can detect seizures) Watch out for pharmacy benefit managers!

There's some pretty cool new biomaterial that may change how we handle crappy bones.

Did you hear that birth control pills can prevent endometrial cancer??

Thanks to electrical stimulators in their spines, some paralyzed patients have begun standing again!

Check out this video and try not to tear up:

Jehovah's Witnesses are changing medicine. Check it out!

On behalf of the #MedX community, I want to ask you to sign a petition eliminating the restriction of access to prosthetic limbs.

And finally, since you've made it through all of this, check out these cute animals and their 3D printed helpers!

Oh and don't forget to 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.

Sunday, September 6, 2015

Why we should all be more like Amy Schumer

Amy is SO cool for SO many reasons.

She's a comedienne who doesn't take people's shit, which she gets more of being a woman AND being pretty awesomely filthy. Her dad has MS and she's big into raising awareness about that.

In fact, the above quote is taken from her recent speech at the MS Foundation for Women's Gloria Awards and Gala.

Perhaps one of the greatest things we can learn from Amy is to be unapologetically US.

It's easy to get caught up in being perfect, whether that's for the general outside world, a community of people, or one other person.

But do we need to do this? Do we need to be anything other than who we are? And why don't we have jets?

All we need to do is to be the best versions of ourselves that we can be. If that means we make filthy jokes or have a lot of sex or sleep in every day or meditate or play video games all night, so be it. If you're happy and achieving all you want to achieve - and not hurting others - you deserve your jet to do your thing.

I've talked a lot about how humor plays a role in my life. It releases endorphins, eases tension, and makes us happy. It is an incredibly important thing in the lives of many chronic illness sufferers, and I'm sure that Amy knows this with her father's issues.

I had a chance to go see Amy last week with Melissa of 710.9 and a few of her friends. I also recently saw Trainwreck. The amount of humor and hilariousness she brings to what she does is unparalleled.

If you're looking for more medical humor, 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.

Thursday, September 3, 2015

Fear of success

I've never watched Breaking Bad, but this quote hit home
In the last few weeks, I've done incredible things that I couldn't see myself doing a few short years ago. A lot of them are things that I wanted deep down but couldn't imagine myself doing... and yet, here I am.

I did have a lot of issues that I had to work on to get here. Timing wasn't great for working on those things earlier in my life. My depression sucked the life out of me.

I can list a million and one excuses or explanations, but I think a large part of things was a fear of success.

I think that I've wanted to play with the big kids but didn't think I was old enough if that's a good example.

I've been working on self love and care and all that good stuff for a while now. I think that it has helped me to see myself as worthy of love, attention, and being a bigger player in things than I've been before. It's also helped me start school again (though having a million deadlines within the first three days has murdered my sleep).

It's also helped that I've been hand picked to do some things and work on some projects - and go to MedX in a few weeks. I'm excited, but nervous for sure. I'm not entirely sure that I'm prepared for the experience or the aftermath. This new blog on sex and such on CreakyJoints has taken off already and I've got some other exciting things coming out soon.

I finally feel like I'm ready. I have no more excuses and I'm not afraid.

Speaking of fear (haha) I hope that you'll 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.

Wednesday, September 2, 2015

Barriers to Patient Engagement

I never said I was an artist y'all.

As a chronic illness advocate type person, I talk an awful lot about being engaged in your care. There are, unfortunately, a lot of barriers that can keep someone from doing so. This post is to see what barriers exist. By identifying them, we can hopefully move to a point where we can work on getting rid of them to get everyone over to engaged patient land.

Here are, in no important order and not exhaustive whatsoever, some of those barriers:
  • Authoritarian or paternalistic doctors
    • Some doctors do not want to engage you in your care which sucks
  • Denial about illness or necessity for medical care
    • If you don't think you need treatment, why would you really access health care?
  • Presumptions about health care
    • White coat syndrome - we don't question the degree
    • Worried about being labeled (troublesome, drug seeker, difficult, etc)
  • Access to care
    • If you live in a rural area and physically can't get to the doctor, you can't engage in your care
    • Same if you can't get child care, get off work, etc
  • Education level
    • It's been shown in several studies that people with higher education and socioeconomic status engage in their care more
    • Even more than this, you have to be educated about your illnesses specifically
      • You're already an expert on your body so learn what it's doing wrong
  • Racial disparity
    • This could mean between anyone in the health care process or the system and the patient
    • This can be especially true in larger cities 
  • Sexuality
    • If your doctor doesn't agree with your sexual orientation, it may be hard to bring up quality of life issues
  • Gender
    • It's honestly a travesty that more women wind up with autoimmune disease because women (especially of the younger ages) are often treated as hysterical when they report pain, etc
  • Age
    • If you're young, you may be dismissed as being silly/hysterical/etc 
    • If you're old, doctors may not give you the best treatment due to you insurance or thinking you may not be worth the time
  • Cognitive function
    • If you aren't neurotypical or you're having a bad brain fog day, it's not only sometimes more difficult to engage but also to truly be heard
  • Background (ie abuse)
    • I've found that it can be hard to handle new providers if they don't know your background
    • Something like abuse or PTSD should be brought up right away
  • Terminology used
    • Sometimes I think we all feel like we need a dictionary to be in an appointment
  • Experience in HC setting
    • If you've had an awful experience with health care, especially a particular system that you're still in, you're not going to be as inclined to utilize their facilities
  • The perfect patient is passive
    • We get this idea in our heads that the perfect patient is passive and complies 100% with what the doctor wants us to do
  • Undervaluing own opinions
    • This is really a part of the white coat syndrome
    • We don't feel qualified to question or make decisions in our care
  • Insurance
    • Insurances often only cover a certain number of visits, especially with specialists, so how do you get the care you need and stay engaged?
What are some barriers you've seen or dealt with?

I hope that you'll 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.

Tuesday, September 1, 2015

Terminology Tuesday: spinal stenosis

Spinal stenosis sounds super painful.

It's basically where the open spaces in the spinal canal start narrowing causing lots of pain. This usually happens in the neck (cervical) or in the lower back (lumbar).

In addition to the pain in the area of the stenosis, it can cause tingling or weakness or numbness in the extremities, balance problems, cramping, stiffness, and even paralysis!

A lot of different issues/diseases can cause stenosis from herniated disks to tumors to osteoarthritis, and autoimmune arthritis damage.

Older people tend to be affected more, but that all depends on many factors.

Treatment can include PT, injections, and surgery.