Saturday, July 28, 2012

Why Batman is the best superhero for the chronically ill

It's no secret that I like my superheroes. Spiderman and Batman tend to be my favorite and to be honest I think my love of Spiderman is more due to carrying on the memory of a friend who died tragically in high school... almost 10 years ago now. I think it's safe to say that I've never felt invincible because of Arthur, but her death was very hard on me. We weren't great friends, but still.

Thanks to pred, I could probably eat this whole cake right now.

But I've always loved Batman, from watching Adam West kapow bad guys to coloring books to Michael Keaton beating up the Joker. Naturally, I think that Heath Ledger was a much better - albeit very different - kind of Joker. The Nolan trilogy of Batman films I think shows a deeper side to Batman than we tend to see in other variations. He thinks more and honestly has some little existential crises. I love it.

Yesterday, I treated myself to a date now that I'm mostly over this damn C-diff infection. I went and saw The Dark Knight Rises. It was a great final piece of the trilogy and it ended exactly as it should have in my opinion. But as I was watching it and getting pulled in emotionally, I realized something.

Batman would make the best rapper ever, rhyming kapow with allow?

I realized that Batman is the perfect superhero for chronically ill people.


Many superheroes have sad stories in their past - Peter Parker's uncle was killed because he didn't see fit to intervene in a crime, Superman was basically an adopted alien, and Aquaman is just plain useless.

"I'll just use my abilities to summon seahorses to help save the world!"

Despite being privileged and growing up rich, Bruce Wayne had all he could ever want... except that all he wanted was his parents back. He wanted to end the pain that someone cause by pulling a trigger. Once we lose control over how our bodies react, that is all we ever seem to want - a normal body again. I live in the US and because of that I have a quality of life that I know many others will never experience. I want to change the world and make things better for people in worse situations, but often I am blinded by my issues, my pain. We also deal with inadequate pain control, insurance woes, and obesity - a lot more than other first world countries...

That cake is sounding really, really good right now.

Batman is who we want to be. We want to help fight injustice, to right the wrongs -  some of us focus on this by trying new medications or raising awareness. We all have times where people think we are out partying, when in reality we are working our butts off to do good. And I'm sure many of us can identify with the fact that Batman has existential crises. Seriously, he's like the Hamlet of the superhero world.

Through it all, Batman loves his Gotham - his home. He loves the people there and he wants them to be safe and happy. Despite all the wrong the city has done to him over the years, from persecuting him to using him as a scapegoat for the actions of others, he takes care of Gotham like it is his duty. I do my duty to protect and care for my body, despite the fact that it clearly continues to attack itself. If only I had some back-up...

I guess where I'm going with everything is that Batman knows pain, he embraces it. He uses the anger from his pain - and his desire to protect others - to mobilize himself and sometimes others to do the right things. Even though he faces deadly guns, he refuses to use them against villains because of his disdain for that kind of violence and his appreciation for life. In this third Nolan movie, he has basically no cartilage left in his knees and there is severe damage to his other joints to the point where he is using a cane and has become a hermit (well, that and the emotional pain of losing people you care about...).

Throughout the movie, his body takes more and more of a beating. He loses the crutch, instead opting for knee stabilizers and more. Despite the pains, he bounces back. He winces and he screams, but he always gets back up to fight no matter the odds.

And if that's not the meaning of the term spoonie, I don't know what is.

Thursday, July 19, 2012

Clostridium difficile

It's not some latin word for a treatment for arthritis. Oh no. It's an infection and it is currently residing in me :(

What I thought was food poisoning lasted entirely too long, so on the boyfriend's birthday we headed to Urgent Care. I felt pretty bad about that but I needed to go. And I'm glad I did, because this beast can actually cause this thing called mega colon - which, aside from sounding like a laxative or fiber supplement, is kind of dangerous and can lead to not fun things... including colostomy and, erm, even death.

So there's that.

I ended up getting two bags of fluids via IV - my first. Hooray! But then they weren't sure what it was so I had to take home this kit and then capture my poo. So that was disgusting.

Honestly, it made me feel like I was in a movie with hookers. Basically I felt like Mila Kunis. In related news, I want a Ted bear and I can never look at Giovanni Ribisi the same again *shudder*

Last night I started antibiotics that I get to take 2 times a day for two weeks. Hopefully it kicks this infection, because I got to tell you the pain from this is ridiculous... but on top of it, I can't do my enbrel until this clears up... and taking my NSAID makes my tummy naturally upset so I'm basically on no meds right now. For like two weeks.


Thursday, July 12, 2012

So you have a dragon: living with Still's Disease

Hooray for dragons!

Dragons are illusive creatures, but when you find one you have to really put your all into the fight. It's no wonder why Still's Disease is also referred to as 'the dragon.'

There are two forms of Still's disease - systemic onset juvenile idiopathic arthritis (SJIA) or adult onset Still's disease (AOSD). Both are considered fairly rare so it can be pretty hard to get an accurate diagnosis.

I live with SJIA, and in November I will have been doing so for 19 years. I barely remember what it was like to be 'normal' but I consider this a gift - why? I have watched so many people be completely blind sided by a diagnosis later on in life, after they've established running or weight lifting as their favorite activity. To watch them struggle with learning their new limits just breaks my heart. I didn't have to go through that falling ill at 5 years old - I learned my limits while I learned how to do normal things. My limitations, for the most part, are about what they have always been. I am very lucky.

So what is Still's anyway?

SD is a form of autoimmune arthritis that is named after a pediatrician, Sir George Frederic Still. His doctoral thesis was actually about Still's, and he was the first to describe the phenomenon. He noted that the children afflicted with the disease not only presented with arthritis, but also high grade fevers and a funky rash. Over the years, people starting also noticing these symptoms in adults, thus 'creating' AOSD as a classification.

About 95% of children with SD present with the rash but only 85% of adults do. The rash can itch, or it can just be there. It also seems to present more with the fevers, though the rash can be brought about manually - by clothes, rubbing against things, and even hot temperatures and water (i.e., showers).

This wasn't post shower, but you get the idea.

In addition to these symptoms, those afflicted with Still's also face more organ involvement, particularly those involved in the lymph system like the spleen and tonsils. Children with SD also face a much higher rate of disability and disfigurement due to the severity of the disease. However, unlike the poly or oglio forms of JRA, Still's affefcts all genders equally and actually has a lower chance of causing uveitis (about 1%). Still's makes up about 10% of the 300,000 children with JRA.

What do you mean by autoimmune arthritis?

In all forms of autoimmune arthritis (AA), the primary cause of the illness is a malfunction of the immune system. The body controls this system via the lymphatic system which circulates lymph fluid throughout the body similarly to how the circulatory system pumps blood. Instead of using arteries, the lymph system uses lymph nodes and trunks.

I don't think the system is green though.

If you have ever gotten a nasty cut or scrape, you have seen your lymph system work in producing scabs. Mmm scabs.

Wait, ewww.

Essentially, the lymph system cleans up the body. At lymph nodes, lymph fluid is filtered and cleaned before it is returned to the blood stream. Nodes are also responsible for the production of lymphocytes which attack toxins and viruses in the body once they reach the nodes. The thymus, located above the heart, also helps in the production of certain lymphocytes known as T cells (those of you familiar with HIV/AIDS might recognize T cells - we'll come back to this later). The spleen also helps in the function of the lymph system, filtering blood similarly to how nodes handle lymph fluid.

In a regularly functioning body, all these pieces of the lymph system help to protect one from illness, infection, and some tiny foreign objects. However, in a body with a malfunctioning immune system, immune response is - as you might expect - crappy to say the least.

Instead of filtering and removing toxins, the system instead can introduce even more crap at any given point into the system. Think of it like a combo garbage and milk man but on crack. Instead of leaving healthy milk and removing garbage, this wasted dude gets all turned around. He misses stops, drops off garbage instead of picking it up, and steals all the milk. Ass. Here's the best part - since the lymph system involves bone marrow, blood, lymph fluid and more, there is no point of refuge from the crazy garbage man. No spots are left untouched by AA in a general sense.

Your body keeps getting these messages that something is wrong, and sends T cells and white blood cells out to protect and serve. They're on like super secret protection status, like a super protective parent. Anything that a normal person might do - like running for example - is seen as a huge problem. Your immune system says "Whoaaa, hold up there! We got an invasion on our hands!" and calls for reinforcements to protect your knee... but then they get there with all the troops and the only thing there to attack is the knee itself. Swelling leads to immobility of the knee, which can be painful because then you rest the knee not realizing that the knee is a self-lubricating joint - resting too much then makes it hurt more. Voila, welcome to joint damage!

It all sounds kind of easy to explain, but the problem in finding a cure lies in what causes the immune system to freak out. And this brings us the different classes of drugs we have to treat different kinds of arthritis, from TNF alpha inhibitors to interleukin 6 inhibitors to chemotherapy medications.

Mmm bio-hazards.
This brings me back to HIV/AIDS. In autoimmune arthritis the body has an overactive immune system, going so far as to fight its own body. In HIV/AIDS the immune system starts shutting down causing the white blood cells and T cells to deplete. A slight cold could turn into pneumonia very quickly. If only we could share immune systems! Many of the medications in the collage above actually do try to cause the same kind of immune system damage on a much smaller scale that HIV/AIDS causes as a way to control disease symptoms. And this is why many can experience complications from these drugs - they open us up so much to infections.

Side note: I need to get some mice and a research lab stat.

There is only one medication actually approved by the FDA to treat Still's right now and that is tocilizumab, or Actemra. It is an IL-6 inhibitor given by infusion usually about once a month. However, because SD is a form of autoimmune arthritis it can be treated with other medications like enbrel, methotrexate, humira, etc.

Some very very lucky people get to experience remission with Still's. However, the only statistic I have found - for AOSD - isn't very comforting. Only about 20% are expected to reach remission. Even then, once you get there, you might not keep that for very long.

Seriously you guys? Seriously.

There are a number of theories for how to make a cure for autoimmune arthritis diseases, probably the most common one involves the use of stem cell therapy. There has been at least one study done with stem cells - in some other country obviously, thanks to crazy right-wing stem cell hating in the US (every new study on SC keeps getting shut down). A large percentage of people experienced a flare up and worse disease from the process while a slightly smaller number did achieve eased disease activity - for how long is yet to be seen. A very small portion actually... well, they died. The process is very involved and difficult for the body to go through. While I maintain hope that stem cells will hold the answer to a cure, the odds are just not in my favor right now.

I'm not going to sugar coat it and say that living with Still's is easy or super awesome because it is entirely too far from the truth. With the right mix of medications, physical therapy, and a great support system living with SD can be manageable.

The best advice I could give someone with SD would be to value yourself. It is so so easy with how society treats the disabled - and the invisibly disabled is even worse, holy crap - for us to devalue ourselves. We clearly deserve our 'fake' illness. But you are worth so so so much more than you might think.

Next time I'll be writing about the importance of assembling the...

Well, of medical care at least :)

Edit: If you're looking for picture of rash, you can find them here. Onset stories can be found here.

Monday, July 9, 2012

July is Juvenile Arthritis Awareness Month!

Ahh, I have had a lot of craziness going on you guys! I'm so busy this summer. It's great, but it also means my fatigue monster is super strong so I've been letting things slip over here. I'm sorry :(

But hey! July, huh? Did you know it's juvenile arthritis awareness month? Well, you do now!

At 24 years of age, I know I'm not a juvenile anymore... at least physically ;) That still doesn't change the fact that I have a form of juvenile arthritis. So understandably, this is something that I really support. The word arthritis entered my life before I even had a chance to learn names of bones or even my colors in Japanese. It is very tough to grow up with one of these illnesses and not know how to explain how it feels to others. I still find myself running into this problem, often making up ridiculous (though accurate) descriptions like how it feels sometimes that my bones are filled with gel they use to make ice packs instead and it can't decide if it wants to be a hot pack or an ice pack. I know how it is to get teased through school, to be bullied because you are different and physically otherwise capable. And I know what it's like to transition into the grown up world - finding your own healthcare, navigating employment options and collegiate activities. It sucks. But you know what? The other kids that I know that grow up with these diseases too... well, they're the toughest bunch of kids I know.

The rest of this month, I have some great things to share with you guys. All that time on hiatus hasn't been exactly spent not thinking of you :)  Coming up, I want to focus on children dealing with juvenile arthritis - posts on dealing with schooling, with bullies, etc. But I mostly want to focus on the awkward transitiony stages - transitioning from child care to adult care, navigating insurance on your own, explaining your illness to jobs and professors, etc. I'll also be posting tips on how to do every day things easier, like dry shampooing instead of hopping in the shower on high disease activity days. And I'm even working on a video! Or maybe a few. Whoa!

For now, I'd like to share some great books and further sources of information on arthritis in case you are interested. These might not just be juvenile centered, but I have found them to be helpful for me.

  • A Primer on Rheumatic Diseases by the Arthritis Foundation - This book covers essentially every disease in the rheumatology field as you might expect. It has some great information on Still's diseases as well as other forms of arthritis that I didn't even know but that made so much sense. Very very helpful, but keep a dictionary handy. Plus, um, did you see you can buy it for like a cent used? Seriously, get it.
  • A book on anatomy - Just find a generic classroom copy, preferably one that focuses on the whole body and not just the skeleton. Did you know that your tonsils are a part of your lymph system? I didn't until I did my anatomy research and now I know why I get sore throats!
  • Out of Joint - This book is about the journey of a young mother who falls ill with rheumatoid arthritis. Her story is not only comforting for its honesty and truth but also inspiring for her strength and character.
  • Partners in Healing - This book can be very helpful for those who need care as much as care givers. It offers care givers a unique peek into our minds though, and helps them to understand what they can and cannot do in order to help us on our journey with chronic illness.
  • This website has a few documents on making the transition from a child to an adult when it comes to healthcare.
I'm going to try to keep things more generic this month instead of focusing so much on Still's just in light of JA awareness but I will probably have a post specific on Still's research I've done and a comparison between AOSD and SOJRA.