Thursday, July 26, 2012

Surviving Arthritis - Newly Diagnosed Part 1

    I thought that for my next post, I'd do a little reflection of how to survive arthritis in creative ways, specifically juvenile arthritis. This post is mainly for the newly diagnosed, but also for those of you who have not let your creativity shine yet (dramatic stare into the sky). Keep in mind that this is not a medical approach (which I will do next), but actually a more humorous approach.
    Stage One: Let's start with arthritis tools, shall we? A lot of us have to use braces, special grips, splints, you name it. Do not be afraid to bedazzle. Haha, I've actually never bedazzled anything (it's not my personality), but hey, if you're going to have to live with these things at least make them look cute. When I had to wear wrist splints on both arms every night and look like a blue velcro monster, I pulled socks with Tweety Bird and other cute designs over the splint. This was useful, because otherwise the exposed velcro would cause my arms to get stuck together and that was a pretty miserable situation to be in at 2 a.m. Mainly though, they were as adorable as possible. Or, you can just embrace the blue monster. That's a good option, too. 
    Stage Two: Okay. Now you've completed stage one. Next, you must learn how to joke about your arthritis. Because, as not-funny as it is, you need to learn to laugh it off. The quicker the better. If you don't feel that you're ready for this type of thing (it can take time), then go ahead and jump to Stage Three. For the rest of you, who have stayed, acknowledge that by joking about your arthritis you are sort of giving others a pass to do the same. Good friends will laugh with you and make casual jokes; bad friends will joke about it when you're collapsed on the floor crying. Are you willing to take this risk? I was. There were times when I regretted it, but for the most part it's been beneficial. Now go think of some, new patient!
    Stage Three: Experiment with painting or crafting as a way of expression. Personally, I really like abstract art and three dimensional/textured art. Try that, it can really help. Paint your story. 
    Stage Four: Learn how to lighten any mood. If you're struggling with writing, and your peers ask you why you can't, engage this conversation:
    Peer: Why can't you write fast?
    You: When I was little, a walrus came and a piece of his tusk got lodged in his wrist but he made it back to the arctic before we could capture him to give him the piece of his tusk back so he wouldn't look weird.
    Peer: Why can't you walk?
    You: A couple months ago, I met this guy who was trying to recreate "Cloudy With a Chance of Meatballs". We were up in the aircraft, trying to get the machine to dispense spaghetti all over (city name), and then the spaghetti started to go out of control and kind of crushed my legs.
    Peer: Why are you using a heating pad?
    You: Back in March, I was outside in the cold waiting for the bus when the cold-ninjas came and attacked my joints and invade them so now they're always cold.
    I can guarantee that you'll get a pretty strange look from your peers. This is the goal. But you can't leave it at that or they will seriously think you're crazy. So then explain that you really have JA and they'll realize how awesome you are, which will block out the sick-kid stereotype.
    Stage Five: Get involved with Arthritis Advocacy. It can be something like giving a presentation in school, keeping a blog, or even going to Congress. The Arthritis Foundation (www.arthritis.org) is a great resource for getting involved in that type of stuff.
 
The medical post for the newly diagnosed is coming next!

Love,
Rachel

Wednesday, July 25, 2012

Musical Therapy

    I have a pretty specific playlist that I utilize whenever my arthritis is causing me to feel crushed. I decided to share some of these song with you all, in case you ever find yourself in need of some musical therapy.

Slow:
  • "Try Again" by Keane
  • "The Scientist" by Coldplay
  • "Does Anybody Hear Her" by Casting Crowns 
  • "Somewhere Only We Know" by Keane
  • "Untitled Hymn (Come to Jesus)" by Chris Rice 
  • "Hallelujah" by Jeff Buckley 
  • "Blessings" by Laura Story
  • "Chasing Cars" by Snow Patrol
Upbeat:
  • "Is It Any Wonder?" by Keane
  • "Where I Belong" by Building 429 
  • "Nobody's Home" by Avril Lavigne 
  • "Cough Syrup" by Glee Cast
  • "How to Save a Life" by The Fray 
  • "You Will Find Me" by Andrew Ripp
  • "Be Ok" by Ingrid Michaelson 
  • "Strong Enough" by Matthew West
    Well, that was a REALLY long list of suggestions. But all of these songs are really great, so check them out sometime. My personal favorites are "Does Anybody Hear Her", "You Will Find Me", and "Nobody's Home" (especially the bridge). "Be Ok" is pretty much the chronic illness anthem, so I would suggest that one too.
    My arthritis has been pretty bad lately. I don't know what to do with it. We still have a couple months to allow the Enbrel to kick in, but it has done absolutely nothing so far. If anything, my arthritis has gotten worse. I'm ready to get on top of my arthritis. Maybe that's the first step, or maybe it's empty wishing.
    I hope this list helps a day or two, because it has helped me a lot.

Love,
Rachel 

Monday, July 23, 2012

St. Louis

    Last night, I got back from St. Louis, Missouri, where I attended the juvenile arthritis conference, which is run by the Arthritis Foundation. (I will post the link to their webpage at the bottom of this post.) It was a really good experience. I made several friends with JA (or with siblings who have JA) and met a lot of families. I was with my younger sister and my dad, so while my younger sister and I were in our grade-appropriate activities my dad was in the parent sessions, learning about medications and treatment options. It was really great to talk to some other pediatric rheumatologists for more perspectives and to meet other kids dealing with the same horrible condition.
    The conference was definitely helpful, and I'm coming back with much more information and even hope. Next year, the conference will be in Anaheim, California, July 18-21st. I would strongly recommend that you attend if you have a form of juvenile arthritis, because it is worth it.
    I was somewhat surprised that a lot of the kids have the same story as me of being misdiagnosed. It was sort of a relief to know that there are people who understand and people who I can relate to. At the same time, it is quite tragic to think that there are so many kids that have to go through this. It's not right.
    By donating to the Arthritis Foundation, you can help with research and funding for medical students going into pediatric rheumatology (it's one of the lowest paid specialties). I would strongly suggest that you consider this if you are in the financial position to give.
    I know this is a short blog post, but I'm working on several others as well right now, so more will be out soon.
    Thanks!


Love,
Rachel
Arthritis Foundation Webpage

Wednesday, July 18, 2012

Hot Air Balloons

    Prepare for one of the strangest analogies ever. There are reasons behind it, I swear.
    To completely understand this analogy, we're going to have to briefly review the different parts of a hot air balloon.* At the very top, you have the balloon itself. Apparently though, this name is not adequate, because the correct word is 'envelope'. So anyway, the envelope is going to represent life here. 
    At the very bottom, you have the basket. That is where the people ride. The passengers can control the elevation of the balloon with the burner. Attaching the envelope to the basket are ropes (yes, there's probably an official name, but I can't find it).
    So you can think of the envelope as life itself. The heartbeat keeping your blood pulsing. The breath your lungs are sucking in for the purpose of delivering the ever-so-important oxygen. The signals running from your nerves to your brain. However you want to think of it is fine.
     Then, there is the basket. That's just you. Pretend that you are not only riding in the basket, but you are the basket. You and the basket are one.
     The problem is that we are thrown these obstacles that threaten to snap apart the ropes. So we hold on as tightly as we can, and pray for some strength, and hope that things will recover, that our broken lives will one day be pieced together again.
     As you already know, we're on some strange journey that everyone labels "life". But if it is a journey, that means that we are moving. Sometimes, our balloons must pass through clouds, and everything is foggy and distorted and we don't know what to do. In these situations, we must keep steady, and keep going through, because if we stop nothing will ever get better. But are we just going deeper into the cloud, or out of it? Is it worth taking a chance?
    Of course, when we're in the midst of the cloud, everything looks the same, so it can be hard to tell if we're really moving or not. I think that's probably one of the hardest things of all. It's what I sometimes feel like, living with arthritis and more generally chronic pain. Am I really getting anywhere?


Love,
Rachel 

*I only included the major parts, so don't depend on my very limited knowledge of hot air balloons for anything of importance. 

Saturday, July 14, 2012

Drawing the Line

    Where is the line drawn between strong and weak?
    Is it strong to push your limits? Or is it a sign of weakness, that you cannot respect your medical and physical boundaries?
    I don't like it when people say I'm strong. I've had mixed feelings about this for all of my arthritis-life.  Most of the time, though, I don't like it. I was put in a situation where I am forced to be as tough as I can. That is not strength on my part, it is just the situation. 
    Which brings me to when people call me an inspiration. I'm still sitting on my sofa, under a heating blanket, tears welled up in my eyes, medication coursing through my veins, knees and ankles and elbows pulsing with pain. What is the definition of an inspiration? How am I qualified? 
     Strength and inspiration are two things I have accepted that I will never understand. I think I have trouble seeing myself in the same medium that I see the world. 
     Will I ever heal completely? Will I go into remission? Will a cure be found? Will I ever go an entire hour without it on my mind? Will I always have to feel this pain? Will my life ever go back to the way it was in fifth grade? Will it prevent me from doing more things I love? Will there come a point where my fingers cannot press down piano keys? Will I ever be able to run a half-marathon? Will I stop others from doing the things that they want to do?
     The forecast is cloudy today. 
     I've had to teach myself positivity. It's not that I'm a natural pessimist - I'm just neutral, lurking in the in-between. I think about both outcomes of a situation but don't expect one over the other most of the time. However, everyone said that positivity was going to help me. That sounds pretty dishonest, as I'm sitting here two years later in the same kind of pain (if not worse). 
     I am, of course, appreciative of the opportunities and the people I've met (Stacie!) and the person I've become. At the end of the day, is it really worth it? To live in this type of pain?
     I may never know.

Love,
Rachel

Monday, July 9, 2012

Pages

I updated every single page on this blog. Please click the links and check out some of the new stuff on them.
More About JRA
How You Can Help
Poetry Page
About Me

Ta-da!!!!!!!
    I'm open to making a new page on my blog, so if you have any suggestions as to what this page may be, email me by clicking here.
    Also, I'm going to try to do a regular blog post in the next few days. Tomorrow should be rough, because I have an ear piercing and orthodontist appointment, so prayers would be appreciated! Gracias!

Love,
Rachel

Wednesday, July 4, 2012

Searching a Life

*This blog post was written about a week ago and edited today.*
   First of all, forgive me. We've been busy and I've been a thinkin', and I decided that I'd rather combine all of my ideas in one larger blog post than write a bunch of separate, shorter ones. So now's the time where I satisfy all of the emails by writing this.
    As we've been in circumstances that call for increased amounts of walking (in this case an amusement park), we use my wheelchair. We purchased it about a year ago, and I have a love/hate relationship with it. I know I need it, but I hate having to use it. I love that it keeps me out of pain, but I hate how it makes me dependent. I don't like feeling dependent. 
    So let us discuss wheelchairs a bit, shall we? 
    First of all, they are super hard to get around places where roads and sidewalks have indentations, which brings about a considerable amount of frustration and even stress. Thank goodness for my father, who has smartly tackled and conquered the situation. You have to go over them at a 45 degree angle, because if you try to do it parallel, you'll fail, and if you try to do it perpendicular, it will get stuck. You have to make sure that the brakes are off when you're moving and on when you're sitting on a hill. For kids with hand (finger and wrist) arthritis like me, it is virtually impossible to wheel yourself around so you always have to make sure that someone is there to push you.
    Also, you have to make sure that your friends don't try to run over squirrels *cough cough Taylor*.
    One of the worst parts of riding in a wheelchair is that people stare at you virtually nonstop. It's not just little kids, either. Adults are most definitely including in my little staring-population. First, they look at your face, then they scan your body up and down, looking for a deformity or a brace or a cast or something that they can put their finger on.
    I've been curious as to why people do that, and I'm pretty proud of the little theory I've come up with. I think that everyone knows that everyone has struggles in their life. But we look at people and we cannot tell of the drugs, or the jail time, or the death, or the depression. However, when we look at someone who is in a wheelchair, we feel as though we are tapping into a life. We can finally peer our heads through, and in the mass of unreadable people we have found clear words.
Sick.
Disabled.
Weird.
    So it's usually pretty awkward when I look around and people think I'm looking at them and turn away frantically. But I've figured out how to use these annoying situations to my advantage. After all, one of the things that can brighten someone's life is a simple smile. It doesn't have to be huge, energetic, prolonged, any of that. It just has to be a small and gracious gesture.
    And if everyone is looking at me anyway...
    I smiled at so many people riding around in that wheelchair. Sometimes they look absolutely horrified. As rude as that may seem on the outside, I've learned to laugh it off. I don't know why I don't care more, but I guess I'm learning to prioritize.
    Then there were those people who smiled back. Bingo! That's two days brightened: mine and yours. I'd like to represent the wheelchair-dependent population here by saying thank you to everyone who smiled. It was better than you thought.
    Recently, someone asked me what I think about. I didn't have an answer for that, so I pretty much just shrugged the question off. I know now. I don't think about things, facts, and the obvious. I think about the why's and the how's. I don't care that everything we toss upwards drops back to the Earth. Instead, I wonder why it does that. Most of all, I wonder how we can make such a huge assumption as the theory of gravity. If we can make an assumption as large as that one, maybe we're more dangerous than we think.

Love,
Rachel