Monday, May 28, 2012

Lost

It's how I feel. I should have been graduating with my master's this year. In reality, that wouldn't have happened cause I didn't have enough Arabic under my belt and it would've taken 4, but most people get those done in 2 years. I should have graduated, should have gotten a kick ass job. Instead, I play games on my computer when I'm not at work and not playing ukulele. Instead, I research and read medical shit like my malfunctioning brain will find a cure that experts have missed, hoping against all odds that I'll magically find a cure for all this shit that is arthritis.

If I was okay with all this, it'd sound a lot like a John Lennon song. I thought I was okay with it, I really did. I mean, I just tried out to be on Jeopardy. Clearly I'm smart... but I feel like I'm not using my smartness and it's starting to fade away, never to be heard from in short bursts again. It's been like this since I came back from Chicago. Yay, I can recite meaningless trivia. But what am I actually doing?

Other people my age (and younger, oh heavens) are well on their way to career-dom, to further schooling, to a big house with a 2-car garage, 2.5 kids, a pool and a dog. And I... I'm just sitting here half-assedly watching a baseball game and commenting on the newly changed facial hair of one of my favorite players. Is this how it's going to be forever? Am I going to feel like I do nothing ad infinitum? If so, shouldn't I be happy with that? I've pushed and pushed myself so hard for so long, shouldn't I feel like I need a break? Like I deserve one? Should I be like Ron Livingston in Office Space and just not give a fuck anymore?

I just dunno.

I know I do things. Clearly, I do things. Every weekend this month has been full of doing things, of WAAD and Chicago, of walking for arthritis and hitting up the Enbrel pusher, of vomiting from migraines and seeing friends. I pre-write blog posts and don't post them. I should be raising more money, raising more awareness, doing something more meaningful and helpful for the population at large.

In happier news, I went running twice this weekend. The bursts didn't last long, but I did it. I ran. And I didn't feel like death afterwards. Yesterday I ran for over a minute straight and could have kept going if it were not for my damn chubby thighs meeting each other unpleasantly. Maybe working out more can make its way into my busy schedule of the House MD game on facebook and ukulele chords. Maybe then I can feel a little more like I'm doing something.

I probably won't though. Sigh.

Someone, anyone - light a fire under my ass and get me going?

Tuesday, May 22, 2012

Why every couple dealing with illness needs to read The Time Traveler's Wife

And no, I don't mean see that movie. The movie is horrible and leaves out the best parts of the book and damnit it all, Eric Bana is not Henry DeTamble. He's just not. /rant/

This was the first book I ever read at the suggestion of the boyfriend. I read it not too long after we started dating, and he read it not too long before that. I decided now that I'm done with WAAD things, I could focus more on reading through my vast library of crap... but I really wanted to read this again before I did all that.

The Time Traveler's Wife is a novel by Audrey Niffenegger that came out in 2003. The story centers around the relationship of Claire, who has grown up very well to-do despite some oddness, and Henry, who is kind of the cause of the oddness. Henry has a genetic malfunction that causes him to time travel randomly, without control of when or where he goes. He meets Claire while time traveling when he is in his late thirties and she is 6 despite a real-time age difference of only eight years. Claire grows up waiting for him to visit, falling in love with him before tracking him down finally in real-time when she is around 20. The book is written from the point of view of both of them, giving a sneak peak of how it feels to be in each person's shoes.

And this is what makes the book important.

It is so easy to forget how hard it is to be the sick person or to be the normal person in our relationships. Sometimes we need a reminder. Our reminder might not be as bad as hearing about our ill loved one returning to the night his mother died, or being the person always living in a disjointed, separate world. Thankfully, we don't have to go through the realities of this relationship. But we do need reminders on the realities of our own. For me at least, this book helps with that.

Claire is always waiting for Henry, always worried about Henry - where has he traveled now? When will he come back? Will he be around for their wedding? Will he be able to be there when she needs him the most? How does she explain his absences, sometimes very sudden, or his changes in appearance (aka which age Henry it is) to friends and family? Will she be able to handle family life virtually on her own without someone dependable there? Are the moments of happiness worth the hours and days of waiting and worry?

Henry is always somewhere else. Even when he is around, he deals with depression from his mother's death or issues speaking with his father. He keeps running into himself, keeps revisiting days. He has to lie to people so they don't know what is going on with him. He even lies to Claire, past and 'present.' He does not want to be a worry, to be a burden on her. He sees how his illness impacts what they do and he hates it. He wishes he was normal so badly. He can't even drive because that is too dangerous.

Despite their relationship the two of them are isolated so much from each other. Sometimes that difference is physio-spacial and sometimes it is emotional. There is nowhere else that this is more true than in a relationship with an illness that makes a minute seem like hours of agony.

And now after all that, here are some of my favorite quotes from the book along with pictures of me with quotes:

"Don't you think it's better to be extremely happy for a short while, even if you lose it, than to be just okay for your whole life?"

"I won't ever leave you, even though you're always leaving me."

"I wish for a moment that time would lift me out of this day, and into some more benign one. But then I feel guilty for wanting to avoid the sadness."

"But you make me happy. It's living up to being happy that's the difficult part."

"I'm living under water. Everything seems slow and far away. I know there's a world up there, a sunlit world where time runs like dry sand through an hourglass, but down here, where I am, air and sound and time and feeling are thick and dense."

"I sometimes end up in dangerous situations, and I come back to you broken and messed up, and you worry about me when I'm gone. It's like marrying a policeman."

"The hardest lesson is Claire's solitude. Sometimes I come home and Claire seems kind of irritated; I've interrupted some train of thought, broken into the dreary silence of her day. Sometimes I see an expression on Claire's face that is like a closed door. She has gone inside the room of her mind and is sitting there knitting or something. I've discovered that Claire likes to be alone. But when I return from time traveling she is always relieved to see me."

"The pain has left but I know that it has not gone far, that it is sulking somewhere in a corner or under the bed and it will jump out when I least expect it."

"I still feel like a castaway, the last of a once numerous species. It was as though Robinson Crusoe discovered the telltale footprint on the beach and then realized that it was his own. Myself, small as a leaf, thin as water, begins to cry."

"The cure might be worse than the problem."






(Oh no! Now you know what the boyfriend looks like! Ahhh!)



Tuesday, May 15, 2012

House Quote of the Week

"Life is pain. I wake up every morning, I'm in pain. I go to work in pain. You know how many time I wanted to just give up? How many times I've thought about ending it?"

Oh House, I do.

It's so weird to think about House ending. I have learned so much about the practice of medicine and about my own health in general as a result of this fake person, this character that has been in my life for so long now. I started watching because it was a medical show with Hugh Laurie. I kept watching because I really felt so similar to House in odd ways. I knew what perpetual pain was like and I felt like we all had a crutch that we used - visible or not.

Alone, it is really easy for me to get cynical and to act like House. With others in my life, like Wilson, I could be the real me and be more calm.

House is just a character on a show. He's not real and he's never been real. But to me, House represents so much. I think ending the show is the right move now, but that doesn't mean that I like it at all.

I'm holding my breath until I can see what happens next week in the finale. But I'll miss House and all that he has represented.

Monday, May 14, 2012

MIA

I might be MIA for a little bit. Why?

Well...

I have an infection. Don't know what it is, don't really care. It has turned my adorable face into a poofy, poofy mess. I'm on antibiotics now, thankfully, but I'll also be without Enbrel and Arava for the next little while so the anti-b's can get to working and not be impeded further.

I feel like I look like I need a Phantom of the Opera mask... but that would add pressure so I don't really want that. My gums are swollen too, which means all my teeth are squishing together. Yeah, not fun.

I need to sleep some more. It's been really hard because this is super painful and laying down is... well, probably the least comfortable thing I can do right now.

I guess for right now I'm just grateful that I felt bad enough that I knew I needed to go into Urgent Care since my rheumy was in appts all day. Seriously, I called them at 8am about this right when their offices opened... and it took the Urgent Care doc getting in touch with them about the seriousness of what I'm going through to get through to her directly.

I didn't get any additional pain meds. I didn't ask for any, but they certainly also were not offered... which seems like a dick move, right?

*sigh*

Tomorrow will almost certainly be a day to stay home from work again, with Wednesday already a designated day off.

I just hope this clears up before Jeopardy next weekend.

Wednesday, May 9, 2012

Oh Enbrel, Where Have You Been All My Life?

I have had kind of an amazing day in general. I picked up my ukulele again after a week of craziness.

Someone got to go get their Enbrel today from the pharmacy. I was super excited. I drove home. I blasted some 'At Last' by Etta James. I may have danced around in the living room with my Enbrel package.

I'm sorry you guys, I didn't manage to take pictures of that. Super lame.

I took my time with it tonight and finished a lot of thing I've been meaning to do. I made mac and cheese from scratch, folded laundry, and even cleaned up around here! Whoa!

I pulled out the Enbrel pen from my little package and grabbed my ice pack from the freezer. Then, I settled in for a lovely bit of light reading. I actually read all of the information that comes with the pens.

I feel like maybe if I had read all of that when I started Humira I would maybe have rethought my decision. I don't care that it's less than a tenth of a percent, I don't like knowing the anti-TNFs have caused multiple sclerosis in some people. I mean, what the fuck? I watched my great grandma die from that and now I gotta worry about that from a med? FUCCCCCK YOOOUUUU LIFE'S HEALTH CARD.

But okay, whatever. I've been on Humira for like a friggin' year. So I mean, I might as well keep going.

I had been told I was getting syringes and so didn't feel like I needed a teaching because it's like injecting MTX. I actually got the sure-click auto pens. Maybe it was an insurance thing? Oh well, whatever.

My pen and my handy dandy how-to sheet

Once I figured out how to use the pen, the shot was so quick. It was so painless. I was able to watch the plunger on the pen push the solution into my body, which I think helped as a distraction. I also was hanging out for like half an hour reading all that shit before injecting while icing my belly. The needle felt so much smaller than the Humira needles. They were so much more gentle. How come you guys never told me???

I'll keep you guys all up to date with how this goes. I really feel like it could really be something amazing for me - and maybe for you or your loved one.

Enbrel, I think you and I are going to be a great fit. Help me keep that bastard Arthur away and I'll always keep you in the fridge in my heart.

Saturday, May 5, 2012

Arthritis Awareness Month, or Why IAAM and WAAD Are Important

Having an invisible illness is really difficult. It is difficult, also, when that invisible illness has a stigmatized word attached to it like 'arthritis.' Thankfully, the International Autoimmune Arthritis Movement (IAAM) is working on changing the stigma by explaining to people that Still's Disease, Rheumatoid Arthritis, and other diseases are forms of autoimmune arthritis.

I have talked a bit about the differences between osteoarthritis (OA) and autoimmune arthritis (AA) in the past, but just to recap AA is caused by a malfunctioning immune system while OA is caused by aging, repetitive movements and injury. Both can be extremely painful and no one wants to downplay the pains of either kind. AA though is a systemic issue, which means for many of these diseases there can be effects on organs, skin, eyes, and even mental issues like brain fog. OA stays in the affected joint and doesn't have the ability to cause these extraneous issues.

The reason it is important to distinguish is to raise awareness of what those of us with autoimmune arthritis do go through. This is not the same arthritis that your grandmother faced - it is much different and can, without the correct treatment, cause permanent deformities, extra illnesses and issues, and even death. Despite the pains that OA causes, that is something it cannot cause.

On May 20th, IAAM will be hosting the first ever World Autoimmune Arthritis Day (WAAD)! This is a 47 hour long event covering all time zones where there will be live presentations, on-demand presentations, and chat sessions hosted by IAAM volunteers and prominent bloggers.

Including me! Whoo! I'll be presenting, in an on-demand presentation, tips on how to maximize your healthy time living with AA. I am really excited about my presentation and I hope that you all will join WAAD to learn more about autoimmune arthritis!

I know I have totally shared information on IAAM and WAAD recently. But it is an issue and a project that is very near and dear to my heart. I know too many children with autoimmune arthritis who shouldn't have to suffer the stigma and the misunderstandings associated with juvenile arthritis.

So please look into WAAD! It's going to be an amazing event with take away handouts you can access to help you remember the tips and tricks that IAAM and other contributors have to help make things easier.

Wednesday, May 2, 2012

To House & Wilson, My Favorite Bromance

Monday's episode of House featured Wilson, House's best friend, dealing with his newly discovered cancer. Wilson opts to go with a dose of chemo drugs so high that he has a 1 in 3 chance of surviving the very aggressive treatment. House decides that Wilson should do this at his place, and so House uncharacteristically takes time off to take care of Wilson.

It was a really hard episode to watch for a few reasons. The main case going on was a little girl who was crazy sick and two parents (one a doctor) trying to figure out what really matters and how to help. Having been a little girl crazy sick, it was not easy.

But even more, watching Wilson be so frustrated at his illness and willing to do whatever to defeat it... It was so real to me. Wilson's pain, hallucinations, chapped lips... It all reminded me of MTX and how horrible I felt on such a low dose. I know I shouldn't complain, because relatively speaking - especially in this case - my dose was sooo low. His realization that he wishes he was more of an asshole because then he'd feel like he at least deserved to be sick is something I've definitely dealt with too.

Wilson realized that the pain he goes through during this procedure is so similar to what House goes through every day and yet House gave up his pain meds to help him. I totally lost it.

Before Wilson starts the chemo, House makes a martini for each of them and does his version of a toast. I went ahead and removed the parts that Wilson interjected and have re-posted the speech below. Oddly enough, I think it pretty well captures what autoimmune arthritis can do.

To stupidity. Not quite done. To muscle aches, spasms, to your joints feeling like they're being ripped out and replaced with shards of broken glass. Your stomach fills with bile. When you vomit, it feels like someone is forcing a really hot hammer down your esophagus tearing your flesh, blood dripping down the back of your throat choking and gagging you with the slick coppery taste of burnt pennies.
Day 2: white blood cells are gone opening up your system to attack. Your temperature skyrockets - one second your skin feels like it's on fire the next second it's entombed in ice. Every pain sensory in your body is firing at the same time until agony isn't even a word or a concept. It's your only reality. You hallucinate. You dream of death. And then the race begins. Can your body claw its way back in time before the organisms and parasites claim you permanently? Win - you live. Lose - you die.

You Know You Have Autoimmune Arthritis When...

So in thinking more about May being Arthritis Awareness Month, I decided that it would be a great idea to start sharing some of the real things that we go through.

If you follow me on Twitter, you may have already seen some of the things that I'm sharing. If not, you can check them out by searching the hash-tag #youknowyouhaveautoimmunearthritiswhen. You are also definitely welcome to join in using this hash-tag!

Tuesday, May 1, 2012

Recap #HAWMC

Oh that was a fun month right? I don't think I have ever, ever written that much. Holy cow. Let's take a look back at the last month!

Okay, so while not actually part of HAWMC, I managed to do two awesomely fun interviews with two wonderful people - my boyfriend and author Carla Jones.

I shared some of my favorite quotes in Quotation Inspiration and managed to write some sad haikus!

I also shared some of my favorite music, whether it's comparing illness to the Phantom of the Opera, or sharing my theme song, or sharing my parody of Air Supply.

I think that some of my favorite posts, though, were some of the most difficult and yet fun to write. I got so much positive feedback on Learned the Hard Way, where I shared my battle to come to take control of my health. I also enjoyed picking and writing about My Dream Day hanging out on the coast with the boyfriend. I think a tough thing to narrow down my dinner guests to just 5 amazing people!

I shared my challenges and victories with you throughout the month, like I try to do on a normal basis. Everything we do is a struggle - one that takes a lot of time and energy to fight.

I enjoyed writing and sharing these things with you, and I hoped you enjoyed reading them!

PS: Don't forget about World Autoimmune Arthritis Day! And this month is also Arthritis Awareness month!