Tuesday, June 30, 2015

Terminology Tuesday: fatigue


I put a call out for some terms y'all would like to see defined further and one of the first responses I received was fatigue.


Despite the above, fatigue is hard to define. We might say we're tired but that doesn't quite cut it does it? Sometimes I'll tell T I'm tired and he'll tell me to lay down. I rebut with some iteration of 'well, it's not sleepy tired though.' I might go on to talk about my lack of spoons.


It can be hard to recognize what is fatigue versus things like drowsiness for some. Personally it isn't, but it can be hard to distinguish drowsiness for regular sleepy tired.

Monsieur Fat-i-gue doesn't come to a party alone. He usually brings his pals like muscle soreness or weakness, joint pain, headaches, sore throats, and more. He's really a popular guy. The fact that he has so many friends makes it hard sometimes to get to the root cause of the issue. Sometimes it's just that we've spent our spoons. Other times it might be a sign of a flare up or worsening disease. For others still, this could mean a new diagnosis is on the way or that medications are having more side effects than they used to.

It can be easier, depending on what's causing the fatigue, to get help. If it's a thyroid issue, starting on medication for this will help. Some of us are anemic or vitamin deficient and bumping up those levels can really help. These are all things that need to be discussed with your doctor though, as vitamins and that fun stuff also have interactions, contraindications, and side effects. If it's a medication issue, you might discuss starting a different medication or changing dosages.


There are a lot of things that can aggravate fatigue, from alcohol to caffeine dependence to weight to inactivity or working out too much to depression and grief to our medical conditions and medications. It's important to learn how to take a step back and check in with yourself to see if any of the non-medical things could be the cause to your fatigue.

For some, fatigue is its own disease. Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis or by the new name, Systemic Exertion Intolerance Disease) can be really devastating.


Generally this is a disease of exclusion where your doctor will make sure things like fibro, lupus, other autoimmune arthritis types, diabetes, and more aren't the culprits. That said, many with CFS/ME/SEID do have a lot of overlapping conditions like fibro so it's a hard one to diagnose.

Unfortunately CFS/ME/SEID is like fibro in that there are many doctors out there who don't believe these are very real and concrete medical conditions. They think, instead, that there is some psychosomatic issue at play. It's unfortunate because you then wind up with a lot of people who need medical attention and help but aren't receiving it either because their doctor hasn't brought up the disease due to their beliefs or because they refuse to treat a patient with anything more than therapy.


If you or someone you love has fatigue, it's important to fight to find the root cause. If you already have an autoimmune disease, that may be the culprit but isn't always. Track how you feel, especially if things like weather play into it. Track your medications and physical activity so you can see if you may be overusing your spoons or having a reaction to meds. Most importantly, seek second opinions if you run into a doctor who isn't listening to you.

As always, you really have to be your own advocate with these things. Know that myself and others are here if you need help.

If you have suggestions for terms you'd like to see defined or other posts, shoot me an email at kirsten-at-notstandingstillsdisease-dot-com.

Monday, June 29, 2015

The surprise is out!

I've been alluding to a couple of cool projects that I have coming up. The cat's out of the bag on the first one at least - I'm blogging on sex and relationships over at CreakyJoints!



Check out the first post here! And feel free to shoot me any questions you might want answered or the like. I can't guarantee I can answer it on the blog, but I can help you get an answer no matter what.

Oh and if you want to ask questions on twitter, use the hashtag #chronicsex!

Medical Monday: link roundup


You guys should totally pick up this awesome shirt and donate towards Megan's ride!

I wish that so many people weren't mean about handicapped parking. Sometimes it seems to throw others off if you're nice. I've noticed I don't get as many pissy looks now that my hair is so short. Speaking of disabled things, I'm really not sure why therapy and service are both being used to describe this kangaroo. I thought you could only be one or the other.

Vermont just removed their philosophical exemptions for vaccines! You've probably heard by now that CVS is buying Target pharmacy. I'm a little concerned what this might mean for me, as Target is my go-to, but we'll see what happens. Apparently RA has been linked to solar cycles?

Dude, badassery on crutches here and more in the form of like this cartwheeling turning into a split here.

Make sure you always stay engaged in your care. Push when you don't think something is right. Don't be afraid to say no or to get other opinions. It may just save you from pain - and worse.

If you use wheelchairs or other assistive devices, you may want to avoid using Uber. If you need accommodations at work and the like, you can check out this site on Accommodation Information by Limitation.

Singapore has a new card that will let those with chronic illnesses skip to the front of the line for the bathroom. Do you have issues with staying hydrated? Soon there will be a water bottle that reminds you to drink! I think I definitely need to get this. Would you like to start a business but don't know how to get started? This new program at the University of Illinois-Chicago can help! It's all about entrepreneurship for those with disabilities.

Have you heard about people who want to be disabled? I feel like they should read pieces like this on living with all the pain or this one on feeling like a junkie. Maybe if they knew diseases like fibro carry a 48 hour recovery period, they'd reconsider.

If your caregiver or loved ones need a little more of a peek into what you deal with, please have them read this. It addresses some issues both in chronic and terminal illnesses - and many of these things overlap. Another thing that is always good is to have an ID card with you medical information on it. Other people like having more electronic things like RoadID. I personally have a handwritten ID card in my wallet along with emergency contact info that scrolls along my phone's lock screen.

Don't forget to breathe.



Sunday, June 28, 2015

Self-care Sunday: embracing the weird that is me


My word for June was 'embrace.'

I'm excited to say that I think I have done that on so many levels for myself.

Over Memorial weekend, I went to the Arthritis Introspective National Gathering (G8) in Milwaukee. I got to hang out with good friends - and finally MEET some of them!

I'm still reeling over meeting Britt! LIKE OMG
That gathering was amazing. It felt like home to me and that was something that I've been looking for for a long time.

It also has gotten me started on some really exciting projects that I can't wait to tell you about - but I have to for now! GAH. As a preview, one of them has to do with the sexytimes.

Oh yeah.

I also embraced what my true calling is and made the decision to go back to school this fall for my MS in Health Care Administration with a focus on Health Care Advocacy and Navigation. What can I do with that degree? Move up in my current workplace or even be a professional patient advocate and go to appointments with people!


Part of why June was about embracing for me was because I needed to embrace who I really am. I still haven't figured it all out, but I don't think any of us do before we shove off this mortal coil.


In order to really embrace myself, I've had to deal with some hard things in therapy. It's going to get worse I know, but it's worth it. I'm not going to let go of my past, but I am going to OWN it.


I will no longer be a victim to my disease or my mother or anything else. I am what I make of myself, shitty past or not. I am a funky ukulele playing guinea pig parent who had a baseball wedding and believes in ghosts - and talking to them. I am a bomb ass wife, learning how to really be a sister and a daughter. I am a chronic illness patient and volunteer who loves talking openly about silly subjects.

Most of all, I'm a silly optimist.


Friday, June 26, 2015

June 27th is National PTSD Awareness Day


Tomorrow, June 27th, is National PTSD Awareness Day. You can learn more about what you can do to help raise awareness here.

There are, unfortunately, so many of us living with PTSD. Sometimes we don't know it, or we do but can't access resources we need.

If someone tells you that they don't like certain things and are very reserved about why, please be patient with them. It could be PTSD related and you could be triggering a bad memory. Be kind and ask them what things you can avoid doing or what you can do to help them feel safer. Oftentimes, it's just being around, caring, and being aware of triggers.

One thing you can do is wear teal (one of my favorite colors btw) in solidarity tomorrow.

Thursday, June 25, 2015

Therapeutic Thursday: high pain, bye pain


Back on the 15th, I left work early because my crip hands were spazzing out and I was hitting 8 and above on the pain scale. I tried to be patient first with it being the first day off pred, but nope.


Driving home sucked because my hands weren't wanting to bend. I parked slowly and walked up the steps to our apartment while pain just kept getting worse and worse. Finally, I practically collapsed in front of the guinea pigs and pet them while I just bawled.

I kept thinking the following in an endless loop:

  • Useless fucking crip hands
  • I wish it was my legs - at least I can be productive without really using those!
  • Why did I think I could still work?
  • Why did I think I could amount to anything?
  • I can't parent these piggies well let alone a fucking child
  • What the fuck was I thinking getting married and thinking about a family and starting school soon and what the fuck??
  • I don't want to die, but I just don't want to *be* with this pain anymore
Save the first one, none of these were really my thoughts, but the last one scared me. I got up and took my NSAID and a zohydro - a precious narcotic that I only reserve for the worst pain. 

I brought it up in therapy that week and my therapist was insistent that there were ways to visualize in a way to help myself feel better. This includes thinking happy thoughts like petting the piggies or watching Jaq popcorn everywhere. It helped for my mental anguish but didn't really do anything to help with the physical pain.
I don't know what to do about this. It was the worst day I've had in a long long while pain-wise. I need to start kineret like NOW. Otherwise I'm worried this will keep being the norm.


Tuesday, June 23, 2015

Terminology Tuesday: cytokines


Cytokines are crazy little buggers.


Basically, cytokines are molecules or proteins that help communication in your immune system. If you scrape a knee, for example, the pro-inflammatory dudes say "HEY YOU GUYS" and get cells moving to help protect and heal the area.


Cytokine is basically the umbrella term, with lymphokines, interleukins, TNF, and chemokines included among others as more defined types.


This could get very technical very quickly, but I want to keep it basic. These terms aren't easy to understand sometimes and, to be honest, it could take a long time to really learn everything there is to know about cytokines.

These are cells related to an inflammatory response, so if you have certain diseases these guys aren't always helpful. However, they can and have been manipulated to create some of the medications to treat autoimmune or autoinflammatory diseases. For example, we have TNF alpha inhibitors like Enbrel and Humira that suppress that specific cytokine to help lower inflammation in the body. Actemra similarly suppresses IL-6.

Monday, June 22, 2015

Turning the tables on awkward things patients have said to doctors

I try to not get too uppity about articles on silly websites like Buzzfeed... but this one was both funny and thought provoking.


I so get it. Patients often ask weird things of their doctors.

Instead of taking this as a moment to laugh, though, shouldn't we be examining the things that are clearly lacking in our communities? For example, one patient asks in this article if the doctor can help them to write a CV. This could indicate a few things - local schools have not done their job of preparing us for the real world, local occupational assistance is either non-existent or not well known, or many other things.

Doctors are, due to the idea of the white coats making them experts, often the first place people look to for help. I have talked with my former rheumy's NP about wedding planning or other things that don't seem related to my health, but are. Perhaps in the above example what the patient really needs help with is having stability in their job and living situation so that they can access better care. Why are these things to laugh about?


As someone who wasn't raised getting health care and had to transition - or even start - all by myself, this is a subject I'm a little sensitive about for sure. I didn't know what things were relevant. I still sometimes am unsure, but I will share what may be needed just in case. A bird pooping on me may not be relevant, but if that's caused some sort of skin reaction it could be.

Some of these are no doubt things I've gone in for. We don't know the backgrounds of these patients thanks to HIPAA, but that also means we don't know what's prompted these things. Have some of these patients been in the same situation as me growing up? Are they from areas with socioeconomic issues and as such don't have access to mental health care or other needed services? Do they have underlying diseases that make things like sore throats a big deal? Are they first time parents concerned about how well they're doing? Have these patients lacked some basic education on their bodies?


Instead of taking time to laugh at these, let's take time to look at why these questions could be asked. Patients should never be people to be laughed at. After all, we know our bodies well. Some of us may not have certain advantages, which makes communicating things hard.

Let's turn the tables though. What are some things that our doctors have said that are laughable?

I had a doctor laugh at me for an emergency appointment, thinking my dental abscess was a pimple. He told me to continue my biologic medication, which no doubt would've landed me in the hospital.

What laughable things can you add?

Friday, June 19, 2015

Freakout Friday: concert time!


Do you live in the Wisconsin area? Do you have like no plans for father's day?

Come watch me play music!

That's right! For the low price of free you, too, can experience what it's like to live in my apartment having to constantly listen to me sing and play on my ukulele.


Listen to such favorites as:

  • Shut up and dance
  • Push
  • There she goes
  • Riptide
  • I really like you
  • Seven nation army
  • And more!
Interested? Shoot me an email or message on FB and I'll send you deets!

If you can't be there, I'll have T around to record some bits and put them up on the youtubes :)

How the Charleston shooting is like chronic illness and musings on racism


Last night Jon Stewart spoke frankly as he often does about tragedies and terrorist attacks.

That's exactly what the Charleston shooting was and we need to call it as such. The shooter himself has admitted that he wanted to start a race war. Instead of labeling him as mentally ill, we need to treat this as a hate crime and terrorist attack.

It floors me how we handle race in this country. We like to act like we're this great melting pot and that we let people do what they desire and we protect each other. None of this is true and we need to deal with that.

Other countries have had attacks like these that have completely changed laws across the board on mental health, gun control/access, education, and even the labeling of those like white supremacists as hate groups. Germany and Australia are great examples of these measures.

How many more lives will be lost before America gets over itself and DOES something?

I can't help but think about those left behind and the grief they - and the community - are going through. I'm much more spiritual than religious, but those affected are on my mind. I wish that the shooter's heart could've been touched as he stayed for the prayer service. I wish the words and community bound would've helped him realize how wrong he is.


Racism is a disease - a disease that's taught, but a disease nonetheless. Like my juvenile arthritis, I can pretend it isn't there until an event or a flare happens. I can go off my medication and pretend I don't need to keep working to eradicate my disease - until Arthur shows up to remind me he hasn't gone away. The difference is that I don't try to create sympathy for him depending on his race.

Have you ever noticed that white terrorists are always called shooters and mentally ill? African Americans who may do similar things are thugs and gangsters. Muslims are the one group we somehow feel okay calling terrorists when these things happen.


We have to stop pretending racism is gone and start working together to make it happen. The question is can we? Can a country based so much more on individualism and the notion of every person for themselves really change enough to care about others in a way that we can end this? Can a country so steeped in racist history that it likes to deny actually work to heal itself and move forward?

We whitewash our history books in so many ways. We make it sound like the civil war was so noble, being about freeing slaves from the start. It wasn't.



We can see this even in some of the days we celebrate as a country. Columbus Day? You want to glorify and celebrate a man who not only didn't find America first but also wiped out a whole island full of people? No thanks.


Let's take a note from other countries. Let's put tighter restrictions on guns, increase mental health care funding, label white supremacist groups rightly as hate groups and ban them, or even have real conversations about race in our country.

We have to stop lying to ourselves, confront our past, and work towards a better future. When we start to address the racism in our systems, we can work to end a number of issues that go along with it.


Dr. King did so much for his country and people use the holiday in his honor to have sales on mattresses. His dream of having African American children judged on the content of their character isn't happening. People are constantly being judged based on stereotypes and racist ideals instead of by how good of a person they are.

As a white girl who grew up in poverty, I can't really in honesty speak to a lot of this and I realize that. As someone looking in from a point of privilege though, I think Dr. King would be angry at the lack of progress. To know one of the coolest, hardest working people would be disappointed in me makes me want to work harder to end the systematic persecution of minorities, whoever they may be.


To get even more political...

With national elections coming up shortly, or at least the beginning of campaigns, it's important to keep these things on our minds. Do we want someone in charge who will undo progress we've made, who has a discriminatory nature/past, and who won't take us forward? We need to keep this event and others from the past few years in mind as we look at our candidates for president especially. I encourage you to go through not only the issues that affect you but to find out stances on gun control, mental health care, and other reforms that could make this event a thing of the past.

We can do this. It will be hard but I know we can end racism.


Thursday, June 18, 2015

Therapeutic Thursday: interesting dreams and ruminations on my brain


I have been having some weird ass dreams lately.

Some dreams involve awful people in my family realizing the enormity of what they've done and admitting fault (AHAHAHAHA) and then offing themselves. It's weird because in my dreams I never see the bodies despite being near the scene but I know what they've done in order to kill themselves without being told.

I think my mind is trying to protect me. I kind of wish it wouldn't though. I get so angry sometimes and it might be therapeutic. I dunno.

Other dreams involve some members of my extended family randomly showing up to throw a party for me, which makes no sense especially with some of them who show up. The people I remember most at the party are the people I do NOT want to see because of how shitty they treated me when I was a child. (If you're in my extended family and we haven't talked in like three or four years even on social media? It may include you. #sorrynotsorry.) I was able to stand up (literally) and say I don't want you here, pushing these people away. I also called people on their shit when they tried to act holier than thou.


Everyone has stinky, stinky shit. Enough.

I don't like super unplanned interactions especially on that level (my extended family is HUGE) or involving the crappy people. Now that I'm an adult and am learning I have a say in things, I know I don't have to be around them. It's so nice.


At the same time, I feel bad. Most of those who treated me poorly likely didn't realize or notice that there was abuse... and yet, shaming a child for being sick around a holiday or some of these other things aren't necessarily things you'd need to know about the abuse to not do.

There are well-meaning people who want me to heal the wounds and start speaking to everyone again. I do so very much understand that notion. To me, though, that's living a lie and I can't do it. I can't pretend all of this hurt isn't here.

Some others in the family are so on board with what I'm saying. There are even people I knew in middle and high school - friends, acquaintances, etc - who have messaged me saying that they knew my immediate family was some kind of weird but not that there was abuse and that they're sorry they never helped out. A lot of people have stopped talking to certain people in my family completely or at least scaled back the communication.


I never started telling my story to get others on board with what I'm doing. I simply needed to get it out and down on some sort of record so that when I doubt myself I can read the belt story and remember why I'm doing this.

I can accurately say that anyone who has altered relationships based on my story is doing so because they have the truth and not because I'm berating anyone.


I would be lying if I said it wasn't an awesome feeling to know that others saw or see it now too. Validation does amazing things for those in recovery.

On top of those amazing people in my family, I am blessed to have friends who are crazy supportive. It's so interesting to me how many other chronically ill people have been in similar relationships with their parents as I have had with my mother and grandmother. That is another validation for me.


Don't get me wrong - I don't need validation. For the last year, I didn't have very much because I was more quiet about all of this. It doesn't mean it's unhelpful or that affirmation is wrong. Sometimes, honestly, it brings with it something that I need to hear, whether that means knowing I'm not alone or that other people care or that I'm not the insane one.

I think the fact that I'm dreaming about these kinds of things instead of flashbacks means that I'm making progress.


This taking risks thing is actually pretty cool. Maybe my brain is rewarding me for it with these dreams, showing me that I can handle these things.

Wednesday, June 17, 2015

Frustrations on the lack of patient inclusion

Today I saw two things that spurred this post.

One is that the American College of Rheumatology has, once again, refused to create a registration section for patients - let alone ideas surrounding implementation of scholarships, etc.

In the last few years, some patients have been able to go and have not been treated well at all at this event FOR RHEUMATOLOGY PROFESSIONALS. Some people had off-color remarks made about their assistive devices even. It was bad.

It's really sad especially as it seems that the more patients I speak with, the more often the problems they have in engaging in their own healthcare come from specialty docs and very specifically from rheumatology offices.

I had a number of other complaints, including the lack of programming last year on dealing with younger rheumatic patients. This is frustrating as I've had conversations with their VP of education who told me she'd get back to me and, clearly, has kind of blown me off on this. Eventually I may post my original email with suggestions to her on here. It would be worth a look at least.

The other is that a doctor (little d not physician) on Twitter said the following:
I learned of these two things within seconds of each other, which of course prompted a Twitter rant.

One of Niam's arguments is that he has a PhD which makes him an expert in his field - which happens to involve health care IT by the way.

Yup.


It was fun to take a look at the tweets being hurled at this man on his lunch break. I felt like I needed some popcorn.

Here, for your enjoyment, is my twitter rant plus some:

It's really unfortunate when you have people who work in any aspect of health care and do not give one crap about the patient's perspective or experience. The amount of people working in medicine with this viewpoint literally sickens me, because it leads to less action to remedy issues the patients are facing as doctors or other medical professionals downplay these issues - if they listen at all.

Would it make a difference if patients were given some sort of certification, since some seem to think a PhD or other high degree makes them more important or better suited to be an expert? This raises all sorts of problems and often eliminates those who need

Here's my biggest problem - patients know their bodies more than anyone else ever could. We know when something is off and feels dangerously so. It took a month, for example, before my abscess was diagnosed as so and treated - AFTER my primary care doc at the time laughed literally in my face and told me it was a pimple and to continue my Enbrel shots.


We also know your systems or offices better than you ever could. We encounter every person in the clinic from registration/check-in to reception to your MAs and RNs/NPs to you. The NP at my last rheumatology office was the only reason I stayed. She cared enough to really talk with me, to spend the time with me that I needed even if it meant staying late. THAT is the type of care patients with multiple chronic illnesses need.

I realize that I'm lucky in working for a set of docs who, generally, appreciate and value the patient voice and experience. Our boss doc is amazing and I cannot say enough about the things she's trying to accomplish in the community and for our patients. More than that, she asks me for my opinion on these things because I am a patient - but I also know these systems.


If you're not a doctor who truly values patient input, then you are not truly in it to care for us. That would be like having a conversation about gender equality or abortion or reproductive rights without any women...


Organizations and individuals working in health care have GOT to stop with the paternalistic view of doctor knows best. I hate to break it to you but that isn't always the case. If I listened to that PCP and injected my biologic, I could've wound up in the hospital or worse.

If you work in health care or know someone who does, I challenge you to connect with patients in your area. Ask them for opinions on the changes you're making or the systems you use or the employees you have are working/will work for them. Ask patients about their daily lives or events in their lives, because those things could help show why their BP is still high or other things.

You cannot work in health care without valuing the patient period. You need to include patients as well - whether you're in IT or a doc or a scheduler or a national organization. If you can't bring them in utilizing empathy or other skills imperative in HC, then maybe it's time for you to retire or change jobs.



Wacky Wednesday: DINOSAURS!


I have a problem.

A dinosaur problem.


And an Ian Malcolm problem, but that's besides the point.

Or is it?
Jurassic Park is the first movie that I remember watching at home when it first came out. My family picked up the VHS the day it was released, ordered pizza, and gathered around to watch.

This picture was taken around that same time. We were so little and cute and liked dinosaurs.

Oh how we'd learn.

In the first few minutes, a dude gets eaten and my mind was like WHAT.

I watched the rest of the movie curled into a little ball, getting crazy excited and then freaked out and then worried.

It was amazing.

It's been 14 years since the last JP movie came out and I'm suddenly six years old again. The TV channels are on board and showing the first movies, which means I wind up sitting on the floor or laying in silly positions on the couch being a doofus and yelling at the TV or singing to the tune of the theme song.


It also means that for the last, oh, two weeks, I've been dino-crazy.

See my lunch-themed video with the above soundtrack here. The next day, I ate the same tasty sweet potato nuggets again...


I dragged a not super enthusiastic T to the movie theater with leather recliners (note: spoonie necessity) at 9:45 in the morning. It was SO funny on top of the action. We both loved it. I don't want to say too much to ruin it.

This past Monday I just felt rotten. T took forever coming home after I left work early with my pain in my hands hitting 7s and 8s on the pain scale. I petted my piggies and cried, which they didn't like very much - so much so that Oreo is constantly checking on me.

It's adorable.

T finally got home with the LEGO Jurassic World game and YOU GUYS YOU CAN PLAY ALL THE MOVIES.


If you like LEGO or the JP franchise or just silly video games, get it. I've gotten all the way to the new movie now and I'm loving the cool things they included like BEING some of the dinos.


Have you seen Jurassic World yet? Or played the game? What are your thoughts?