Tuesday, February 28, 2012

Still's Disease Community Project


Okay, maybe that was a little much ;)

But seriously, super excited.

Laura over at Still's Life had a brilliant idea. And I'm not using the word brilliant just because she's from the UK and I love the way that word sounds in that accent. It is actually a bloody brilliant idea.

In her latest post, Laura spent time documenting her Still's rash and what kinds of symptoms present systemically when her rash appears. She had the wonderful idea to create a kind of Still's Community project. If you've been keeping track of your rash, or you're interested in doing so for a bit to help out the community, please contact her! I, for one, will be monitoring my symptoms a little more closely and trying to capture pictures of my rash in order to help with the project.


When I was first diagnosed waaaay back in 1995ish, there was literally nothing online about Still's Disease. Even now, there are some support groups and some of them have pictures, but you have to dig for them. In fact, I've actually noticed a lot of my pictures show up if I search images for SD. Go figure :)

But I digress...

Imagine a family who has an ill child and they're desperately trying to find the answer. They go online and they find a ton of pictures, complete with lists symptoms and pains that present with the rash. Imagine a child not having to wait over 6 months for a diagnosis, but instead being diagnosed early on enough that medications can give him or her hope of remission. Imagine what we could do for others who go through this pain - how we could help stop some of that pain for others. Imagine you taking part in that, and how awesome you'll feel when you know you've helped people like that.

So pleeeeaaasssse, please, please consider hooking up with Laura or myself on this project so that we can help raise awareness and understanding!

Saturday, February 25, 2012

Love songs to my arthritis

No, I don't love Arthur. But I have some songs that definitely remind me of him. And I thought I'd share some lyrics with you (read: I really want to blog but have no ideas and also very stiff hands so I need something easy).

What doesn't kill you makes you stronger
Stand a little taller
Doesn't mean I'm lonely when I'm alone
What doesn't kill you makes you a fighter
Footsteps even lighter
Doesn't mean I'm over cause you're gone
-Stronger, Kelly Clarkson

Cause if it wasn't for all that you tried to do, I wouldn't know
Just how capable I am to pull through
So I want to say thank you
Cause it 
Makes me that much stronger
Makes me work a little bit harder
It makes me that much wiser
So thanks for making me a fighter
Made me learn a little bit faster
Made my skin a little bit thicker
Makes me that much smarter
So thanks for making me a fighter
-Fighter, Christina Aguilera

I can't tell you what it really is, I can only tell you what it feels like
And right now it's a steel knife through my wind pipe
I can't breathe but I still fight while I can't fight
As long as the wrong feels right it's like I'm in flight
-Love the Way You Lie, Eminem and Rihanna

They say the whale swallowed Jonah
Out in the deep blue sea
Some days I get that feeling
That same old whale has swallowed me
The sun rise in the east
Goes down in the west
Sometimes I get that feeling
Every creature needs some rest
I believe the whale got sick
That's why I have this blues
I do believe one day
He will finally turn me loose
Now if I live
I pray I don't get killed
I do believe one day
I will crawl out of here
-The Whale Has Swallowed Me, Hugh Laurie (yes, THAT Hugh Laurie - do yourself a favor and pick up his album, Let Them Talk, it's amazing!)

Something is not right with me
Something is not right with me
Something is not right with me
How was I supposed to know? 
Something is not right with me
Something is not right with me
Something is not right with me
I'm trying not to let it show
-Something is Not Right with Me, Cold War Kids

I've got one friend, laying across from me
I did not choose him, he did not choose me
We got no chance of recovery
Joy and hospital
Joy and misery
Joy and misery
Joy and misery 
Put out the fire boys, don't stop don't stop
Put out the fire on us
Put out the fire boys, don't stop don't stop
Put out the fire on us 
Bring the buckets by the dozens
Bring your nieces and your cousins
Come put out the fire on us

-Hospital Beds, Cold War Kids

I'm not afraid to take a stand
Everybody, come take me hand
We'll walk this road together through the storm
Whatever weather, cold or warm
Just lettin' you know that you're not alone
Holla if you feel like you've been down the same road
And I just can't keep livin' this way, so startin' today
I'm breaking out of this cage
I'm standing up, Imma face my demons
I'm manning up, Imma hold my ground
I've had enough, now I'm so fed up
Tryin' to put my life back together right now
-Not Afraid, Eminem

I got my feet on the ground and I don't go to sleep to dream
You got your head in the clouds, you're not at all what you seem
This mind, this body, and this voice cannot be stifled by your deviant ways
So don't forget what I told you, don't come around
I've got my own hell to raise
-Sleep to Dream, Fiona Apple

Oh it's so evil my love
The way you've no reverence to my concern
So I'll be sure to stay wary of you, love
To save the pain of once my flame
And twice my burn 
So I'm a shadow boxer, baby
I wanna be ready for what you do
I been swinging around me, 'cause I
I don't know when you're gonna make your move
-Shadow Boxer, Fiona Apple

Find the one song, before the virus takes hold
Glory, like a sunset
One song to redeem this empty life 
Time flies, and then no need to endure anymore
Time dies
-One Song Glory, Rent

Look, I find some of what you teach suspect
Because I'm used to relying on intellect
And it's hard to open up to what I don't know 
Because reason says I should've died three years ago 
No other road
No other way
No day but today
-Life Support, Rent

Will I lose my dignity?
Will someone care?
Will I wake tomorrow from this nightmare?
-Will I?, Rent

Don't be a drag, just be a queen
Whether you're broke or evergreen
You're black, white, beige, chola descent
You're Lebanese, You're orient 
Whether life's disabilities
Left you outcast, bulled or teased
Rejoice and love yourself today
Cause, baby, you were born this way
-Born This Way, Lady Gaga

So make your siren's call
And sing all you want
I will not hear what you have to say 
Cause I need freedom now
And I need to know how
To live my life as it's meant to be 
And I will hold on hope
And I won't let you choke
On the noose around your neck 
And I'll find strength in pain
And I will change my ways
I'll know my name as it's called again
-The Cave, Mumford and Sons

-Wonder, Natalie Merchant (lyrics here)

-The Laying of Hands (The Mass Hysteria), The PAper ChAse (lyrics here)

I'd like to come home to see you
And embrace your illness under soft light
But then you'd know how much I really need you 
All the love in an instant makes my life stop
But then my hate for you makes my feelings altogether drop
-Drop, Red House Painters

-Infected, Repo! The Genetic Opera (lyrics here and scene from the movie here)

-Genetic Emancipation, Repo! (lyrics here and scene here)

But of course the best song for any condition like RA, Still's, Lupus, etc is by Rob Thomas

Thursday, February 23, 2012

Arthur, the boyfriend nobody wants

I have a habit of calling my disease "Arthur" and though I'm not sure how exactly it started, I know I'm not alone. Several of us use the same term to describe our life partner, the ever-asshole-ish RAD/AA.

Here are some of the least favorite things about Arthur:
  • He's not sexy
  • Always sleeps in late
  • Doesn't listen
  • He's needy
  • Ruins the best times
  • Doesn't let you have any fun
  • He feeds you fat food
  • He always wants to cause a scene
  • Plays with your emotions
  • Controlling
  • Hates your other boyfriend
  • Is way too attached to that couch
  • Always looking for ways to get you into bed
Feel free to share your least favorite things about your boyfriend, Arthur!

Some of us even feel so strongly about our painful lover that we can't even put it into words. I will say this though, if he existed, I would have gunned him down mafia-style YEARS ago.

Essentially, living with autoimmune arthritis is like starring in your own Lifetime special. Your abusive boyfriend won't let you do anything without hurting you, and you're trying to slowly kill him with a medical cocktail you're putting in all the food - poisoning yourself while you're at it. If you're lucky, you'll have built up an immunity to things like iocane powder... and if you're not so lucky, the poison will get you too.

I know one thing though - this girl is ready to beat the crap out of Arthur. Who's with me?

Wednesday, February 15, 2012


Yesterday started out awesomely enough. Got to snuggle before I had to take the boyfriend to class, gave out some kick ass Vday cards, had some delicious ginger ale.

Then I got to work and found out that the way something had been explained to me about attendance was not correct, or I misunderstood, whatever. It's not in the manual so it's not like I could look it up if I had questions. Long story short, I'm one really bad day away from being fired - one bad day in a month and a half. Yeah, right.

Oh, I thought I was pissed then, I really did. So I decided to talk to HR.

Either that was an awesome idea or a really, really bad one because I totally found out where people with disabilities stand apparently.

I was met with a scoff, with a question of do you even want to work or are you even capable of working, and with an explanation that they will not rewrite everything for me.

Which is not at all what I was asking. I was asking for some leniency on attendance. I was assured that what I was asking for would be looked at, but that had this happened during my first three months instead of my second that I would have had a better chance to get leniency. Nonetheless, I held my cool (despite feeling like shit and like he was stomping on my face). I suggested that I could get a doctors note to explain why I would need some leniency there. Who knows if that will really help.

He kind of seemed to think that I was lazy and didn't want to work. That's not the case at all. I want to work, but sometimes my body needs a break.

In the meantime, I'm looking for other jobs because I'm pretty sure they're not going to help me out. And I'm pretty sure when they fire me, I'll be filing complaints left and right on how I felt discriminated against the second I walked into his office.

I'm feeling pretty pissed off still. It gave me the motivation to finish up my taxes so I could have that extra money.

And I started looking at disability. I don't think I'm bad enough to get it. But I also know that if my back doesn't calm down, I'm gonna choke someone until I get some medication that works, an MRI, someone to shoot me - something.

If it comes to that, I'm hiring Archer.

Monday, February 13, 2012

Diversions from pain!

Pain sucks. It really, really, REALLY sucks.

My back isn't really feeling better, can you tell?

Anyway, I've had roughly 18 years experience trying to detach from pain. Sooo here are some of my favorite diversions when I feel like death! Or just what I like to do with some of my days!


Because it's midnight and I have heartburn and am not sleeeepy!

Enjoy this horrendously long list!

  • Mahjong
  • Refreshing Twitter/Facebook 90 times in 5 minutes
  • Playing Lego Harry Potter. Gamefly might not get it back.
  • Playing Mario. But the Wii Super Mario is super hard :(
  • Looking at silly tumblr pictures
  • Dinosaur Comics
  • The Adventures of T Rex from Dinosaur Comics
  • A Softer World
  • Adele
  • Archer, South Park, Family Guy, Futurama, I like cartoons...
  • Jazz music, The Decemberists, Say Hi, Crazy girls like Nicki, Ke$ha, Britney (I know :( ), Katy, etc.
  • Alan Rickman *Sidetrack - how did Neville Longbottom end up the hottest HP kid???*
  • Star Trek: TNG
  • Finding kick ass recipes
  • Tabatha's Taking Over
  • Pizza
  • Potatoes - wedges, jojos, fries, crisps, deliciousness
  • The Rolling Stone
  • Working at the best place on earth (the other one!)
  • Decorating my apartment even if the BF thinks I'm silly sometimes with it
  • Yoga
  • Emailing awesome people LIKE YOU!
  • Zebra designs
  • Zooborns
  • Reading
  • Snuggles!, This minus the baby
  • Movies, Netflix, on demand, recording shows
  • Reeses. Eggs are my favorite. Also, they give me heartburrrrrn :'(
  • Orange juice and maple donuts - best things ever invented.
  • Bison dogs
  • Maple cornmeal pancakes. Mmmmmmm.
  • I like food. That's why I'm chubby. I gained four pounds AGAIN. This isn't a list anymore is it? I should stop rambling... maybe?
Golly, that was a fun five minutes :-p

I'm tired, but not sleepy enough to be sleepy. DISASTER YOU GUYS.

Maybe I will turn off the computer and that will help! Maybeeeee!

Wednesday, February 8, 2012

(Expletive Deleted)

I tried to come up with a snazzy title for this post, something about pain being the same and not making petty comments to other ill people. But I just couldn't find the right one.

Lately, several groups that I'm a part of have begun to experience a rash of attacks on others from members of these groups. To be honest, it's gotten me to a point of frustration where I was about to delete my blog, unjoin these groups, and quit volunteering for the organizations I work with.

I'm not kidding.

In the past week, I've had some people comment that others with RA shouldn't have children because of how much of a burden we already are on our families and how in the world were we going to take care of kids? You might remember my super angry rant at the horrible insensitivity here.

Well, the latest thing in another group is that the community is super negative. The person making the comment was diagnosed at 13ish. I disagreed with her post initially, because everyone needs a place to vent and ask honest questions. That's what that group is supposed to be, and what it is for me. And then...

This is my favorite part...

People began to berate her and say that she must not know what real pain was. Whatever, people hating more, but I let it go.

Until someone said she couldn't possibly understand what everyone else is going through because she got diagnosed so young so she just need to shut her face.

Wait, WHAT?

Why the fuck does it matter when you're diagnosed? You're still dealing with horrible pain, with horrible drugs, and with terrible self-esteem problems.

If you have read my blog for a while, you might be thinking I'm a hypocrite.

In the past, I have said that, yes, I feel lucky for having been sick since such a young age (HA!). Sometimes it's true that I don't know what I'm missing, and I do feel lucky for that. I also believe that I've gotten 'used' - as much as anyone can - to a certain level of pain being the norm. That shouldn't be reality, but it is for me.

By no means, though, does that mean that my suffering is any less real, any less painful in truth.

Who gets to decide whose live is worthy of ruining with pain the whole way through, or who to rob everything from by striking them with disease?

Certainly, I'm glad, no one in that damn group.

It just made me so mad. I wanted to hang up everything and give up. If the rest of the community can't even accept the pains and horrors of being an ill child with these kinds of diseases, then how am I supposed to get the rest of the damn selfish world to listen?? It's impossible.

And then something wonderful happened.

I got a message back from a parent of a young boy with Still's. We've been talking back and forth for a few weeks, and her son is having a real rough go of things. He is so sick, and other people don't understand him :(

And then I learned about another friend's daughter and her recent health issues. She's got an infection or something, they're not sure, that antibiotics haven't been touching. She can't take her JRA meds right until this goes away. Not to mention, she feels so horrible :(

Just because some people who should understand what it's like, who should be mortified that children are this sick, don't get it doesn't mean that others won't. These kids make me want to fight when I'd rather give up. They're truly amazing, and I feel so touched that they are a part of my life.

So I'd like to dedicate this post to Jordan and Zack, for fighting so hard in the face of adversity. You guys are heroes to me, without even knowing it. And you do it just by being you. You guys get gold stars in my book, pretty much for forever.

Gluten Free Living

I know I've touched on here a couple of times about the fact that I am on a gluten free diet. My blood tests recently came back and I do not have celiac disease. However, everything on my body feels horrible after I have gluten - especially my hands and anywhere else my disease feels like hitting that day.

I started this back in September and October, and I feel as though the boyfriend and I have learned a lot about how to live GF. Well, he still has gluten, but not as much. Anyway, I felt like it was a good idea to share with y'all, mostly because I keep seeing questions from people on tips for GF living.

First, get a stand mixer. The bf's mom got us a beautiful kitchen aid for Christmas and it has really helped our recipes turn out better - and saved our hands!

Second, learn how to make GF breads and pastries. This could be the best thing you've ever done. I missed eating pizza, cake, cookies, and everything. But now I just experiment with delicious GF versions. If you'd rather, Betty Crocker (I've found so far anyway) makes the best GF cake mix. Otherwise, there are a ton of mixes you can find if you look for them. This is true not only for cakes, but cookies, breads, and even (YES) cinnamon rolls.

Now, baking bread with GF flours is pretty easy. It's getting the mixing right that's tricky. Again, get a stand mixer. Also, it doesn't mix together like 'normal' dough. It's supposed to, instead, look more like spackle. The rules are a little different. Why?

Gluten acts as a bonding agent. It holds breads and things together. When you don't have gluten, you have to use another bonding agent - usually xanthan gum. Because of this, the chemistry gets thrown off. So just watch yourself! And if you don't get a recipe right the first time, please try again!


Seriously. Things you expect to be gluten free might not be, mostly because of seasonings. Arthritis Ashley recently had some nuts that for some horrible reason had gluten in it. She was lucky and was able to not really eat the food, but sometimes that gets really tricky.

Also, sometimes gluten tends to hide. The FDA made it necessary to list wheat in the ingredients on things, but gluten isn't just found in wheat - it's also found in things like barley, rye, spelt, etc. Learn the other hidden ways gluten can pop into your diet by familiarizing yourself with the hidden sources of gluten in your foods. I have found this site helpful for that.

For example, I have a potato problem. I love fries, crisps, jojos, wedges, baked tatoes, tater tots - pretty much all things potato... except au gratin. Ew.

Anyway, you have to be really careful, because a lot of fries - which you expect to be not gluten-ful - do have seasonings and things that make them so. Again, please, please, please read labels!

Get rid of all your seasonings and condiments that have gluten in them, even if there are people who can handle gluten in the house. There are still some things in our apartment that have gluten in them, but it's pretty much limited to when my boyfriend gets pizza from the not GF places or his regular bread.

Make friends with other people who ditch the gluten, whether it's online or in person. That way you can swap recipes and experiment with foods as a team!

Speaking of, here are some of my favorite GF recipes:

Maple Cornmeal Pancakes - These are HEAVEN. I'm not even kidding you. It's like a mouth-gasm. They're SO filling that having sides isn't even needed. Seriously, you need to make these, like yesterday.

Chocolate Chip Cookies - My mom makes killer CCC. They've always been the most delicious things I've ever tasted, in the fields of cookies. When I realized gluten was making me want to die, I immediately knew I was going to miss these cookies. Alton Brown sir, you are a saint!

Pizza Dough - Okay, Spelt has gluten, so don't use spelt. But once you learn more about GF flours, you can modify this recipe. We usually use all purpose GF flours and such.

Mmmm lasagna. Enough said.

Cinnamon Bread - We've found that it works better if you put about half the topping in the mix right away, and then put the rest on the top about 10 minutes before it's done.

Cornbread - Mmmm.

There are a ton more recipes out there, so start looking!

And here are a couple of my favorite GF brands.

Envirokidz - Not only it is Nature's Path's answer to GF, it's geared towards kids so they have freaking adorable animals like koalas and lemurs. And they taste amazing. They have cereals and breakfast/snack bars.

Glutino - The entire company is gluten free. Bread crumbs. Yogurt covered pretzels. All purpose flour. Bread. Oh, and FREAKING FREEZER PIZZA. The feta is the best by the way.

Pamela's Products - Sometimes you want delicious things like cookies but don't want to have to put dough in the fridge for HOURS. So I reach for these awesome lil guys. Chunky chocolate chip is the best, especially with vanilla soy milk.

Lundberg - GF couscous, and now super awesome pasta. Mmmm.

Annie's - Mac & Cheese and fruit snacks. Heaven!

Amy's Kitchen - GF soups and chilis and all sorts of goodies.

Like I said, there are a TON of options available. Going GF isn't as hard as it used to be. It doesn't just mean eating veggies and fruits. You can enjoy normal foods, with a little twist.

If you have questions about going gluten free, or about the kinds of recipes and foods to try, please shoot me a message!

Tuesday, February 7, 2012

Did you notice something new?

Did you?

Look up at the URL bar. Did you figure it out yet?

I bought my domain name, so you no longer have to add blogspot on the end of the name!

I'm pretty sure that was the best ten dollars I've ever spent, EVER.

Monday, February 6, 2012

How is Still's Disease different from 'regular' RA?

While Still's Disease is very similar to rheumatoid arthritis, there is a lot that is different between the two diseases. As much as I hate to say it, Still's patients experience more side effects as their disease is systemic and can affect so much more in the body.

I tend to do a horrible job of distinguishing between the two, and use the terms interchangeably. But they aren't the same disease. The same treatments can be effective, but then again they may not.

Here are some videos from Creaky Joints about Still's Disease.

Just as a correction to BOTH doctors, (Sir) George Frederic Still is the one who discovered Still's Disease. He also was one of the first - if not the first - doctor to describe ADHD. It's probably tricky to remember how to say someone's name right ;)

Still's is the least common type of JRA (if you consider it that). Less than 20% of JRA patients have Still's. Many go undiagnosed. Still's affect boys and girls equally, where JRA affects girls more than boys. Onset often occurs before age 10, usually after an illness like Strep Throat or Scarlet Fever, etc. I got it after Strep and MMR immunizations, as did my sister.

Still's presents with a fever and a rash. Both usually get worse at night, improving in the day time. The rash can be present one second, and gone the next. It itches like a bitch, and it doesn't care if you're at work or out with your friends - it shows up where and when it wants to.

The joint pain can be more intense than 'normal' JRA - I'm not making this up. Unlike JRA, Still's doesn't usually present with positive ANA (antinuclear antibody) or RF (rheumatoid factor). Neither of those are positive for me.

ESR, or Erythocyte Sedimentation Rate, measures the swelling in the body. Usually, this number is very high. Right now, I'm at 25 mm/hr. The normal range is 0-20. But at onset, this can be VERY high, like 50 or more.

It's also hard for the body to keep holding onto proteins. For example, I've been losing protein in my urine since before I was diagnosed.

This last time, my labs are came back pretty awesome. Aside from protein in my urine and a slightly elevated sed rate, everything else was within acceptable levels.

So, why am I still in so much pain? And why do I have swelling?

I just don't know.

Sunday, February 5, 2012

Wii continued

Okay, um, I overdid it. Today I'm hurting, stiff, but I absolutely have to work. Dammit.

Saturday, February 4, 2012


Back in December, I learned that you could do layaway at Sears but start your layaway online instead of having to be present in the store. You can then make payments online and pick up your items after 8 weeks. You could pay it off sooner if you wanted to, but most people I've dealt with in layaways don't.

I've wanted a Wii for a long time, but I'm finally in a position where I have a little more disposable income to do fun things like that. Plus, it's been tough for me lately to head off to the gym and not overdo it, so I thought that the Wii Fit Plus would really help me out.

I picked up the Wii yesterday, and I spent about an hour and a half today working out between Wii Fit Plus and Grand Slam Tennis.


I felt good today, and that is pretty amazing too. Hopefully, this week will be easier to get through with work and not taking the MTX this weekend.

Wednesday, February 1, 2012

Another Chapter in MTX Land

I had a doctor's appointment today. Well, a nurse practitioner.

She was awesome.

I did labs, including peeing all over my hand in a cup, and an x ray of my lower back. I'm holding my MTX dose this week to see if the back pain and hand pain subsides. If there is something wrong with MTX and me, then I'll move onto leflunomide. From what she says, it's essentially MTX but less crazy.

That's pretty good, because at this point I'm about ready to not work ever again with the pain I've been in the past few days. Yesterday was easily one of the worst days of my life. And I still worked. Because I called in the day before.

I already arranged to have Thursday and Friday off this week as well. Last night, I felt a break in the pain, and then things got a lot better, but I just want to take it easy here for a few days. I'm exhausted after working through that pain.

I'm just hoping for some answers on what's going on here. It's imperative that I get them, so that I know how to proceed at this point.

In other news, my celiac tests came back negative, so that's good. And I've discovered Spotify, so my love of jazz is growing exponentially.

Mmm blues and jazz.