Saturday, December 29, 2012

I Won't Surrender

     "I won't surrender, I will fight better." - This is War, by Ingrid Michaelson.
      The first time I heard this lyric, I immediately thought about my arthritis. Now, I will admit that a lot of things make me think of my arthritis. But that is only because I live with it, deal with it, and feel it every moment of every day. It really kills me when people think that the best way to handle a chronic illness is to ignore it. I have arthritis. It's there. And yes, I do think about it. But I don't dwell on it. I cannot ignore it when I am in a lot of pain, but it's not the center of my world; in fact, it's far from it.
      I am not done in my fight against arthritis. My strength has been depleted and most days leave me feeling beaten down and somewhat conquered, but I am more than arthritis. I play piano, I am a Christian, I am head-over-heels in love with biology, and I have a little bit of an obsession with tea parties. I am not juvenile arthritis.
I am fighting this disease.
     I do not plan to stop now. It would simply be unfair to stop fighting. It would be unfair to myself. I would be discrediting all of the work I've done so far. It would also be unfair to my friends and family who have been soldiers in the battle. Even if I lose nine days out of ten, I'm not stopping. 
     I'm very interested in whether or not my JA and RA friends find that their joints hurt worse when they're sick or not. I've been sick since Christmas night with a coughing, headache, stomach, and fatigue thing, and I've been running a fever too. My body has just felt really terrible even aside from the arthritis. But the sickness has caused my joints to be ridiculously unbearable. They are constantly stiff and I woke up many, many times two nights ago with a throbbing wrist and freezing from my fever. However, some people that I've spoken to have said that they experience great relief from their arthritis during unrelated sicknesses. The thought behind this is that the immune system gets "busy" working on attacking the sickness and doesn't worry about the joints. I sure do wish I was one of those people! 
      I'd also like to use this post to say welcome back to my back. After some really tough rounds of methotrexate and Enbrel, my back pain pretty much disappeared. This was wonderful, as I gained back some flexibility and it stopped bothering me so much. As of about two weeks ago, my back pain has slowly been creeping back in, and now it's like the pain-free period never happened. It's at its worst in the car. I'm just thankful that I don't ride the bus to or from school! I can't even imagine the kind of discomfort that would bring about. Even cars hurt, so larger vehicles would probably be brutal.
     I don't want to be the blogger or friend who tells the world that chronic illness is easy, or that optimism isn't a struggle. I don't want to dress up arthritis and make it seem like less of a problem than it is. I want this blog to be honest. Arthritis does hurt, and very much so. Arthritis is the kind of thing that can pull you down further and further until you realize that you're Alice, sucked into a hole that you stumbled over. Some days, the hole is dark and frightening and you simply wish that you'd never fallen in. But until we get out, we might as well discover Wonderland.
     "A cheerful heart is good medicine, but a crushed spirit dries up the bones." (Proverbs 17:22). This verse has been at the bottom of my blog (along with a couple of others) for a while now, but I felt that it was necessary to bring it up in a post. We have reasons to be cheerful that have nothing to do with our health.

Love,
Rachel

Friday, December 21, 2012

I Do What I Want

       Every day feels like a year.
       But flares can be pushed through, and battles can be overcome, and good will prevail. It's just been a long week. The kind of week that leaves me miserably exhausted. Predictably, I replayed my stupidity and didn't get my methotrexate.
       "I do what I want."
       I don't know how I got to using this phrase so much, but I do know that it's SUPER helpful. If you ever can't think of a response for something, just throw out an "I do what I want" and you're set, I promise. This started for me in school. I have a terrible habit of walking out of a class and forgetting what my next class is. Not wanting to stand stupidly, I pick a direction and just walk until I can remember. Most of the time, life likes to mess with me by making the decision that I randomly picked completely and tragically wrong. So I do what I have to do; I turn around. Of course, then I'll walk up to a friend and start talking with them and they'll say something along the lines of, "What were you doing, cause you, like, turned around right after you started walking." 
      "I do what I want." It honestly works perfectly. How can anyone argue with that? People just give an uncomfortable nod and another topic works itself into the empty chamber of conversation. I've discovered that this works well in a medical sense, too.
      "Why did you stop your Enbrel?"
      "I do what I want."
      Yeah, I stopped my Enbrel. It was giving me headaches and just making me feel generally crummy.  My pediatric rheumatologist said that it usually doesn't come with side effects, but it did this time! He's actually going to contact the FDA about it, because apparently he had another juvenile arthritis patient who stopped Enbrel because of headaches as well. I'm glad to be off the Enbrel, because my headaches vanished and I sure don't mind not having to be stuck three times (now it's only once for the methotrexate). If anyone else has had headaches along with Enbrel, please send me an email, I'd love to discuss it more and try to do a little detective work.
      I was a teensy bit worried (okay, a lot-a-bit worried) that my doctor would be frustrated with me for stopping the Enbrel. I have a sort of "silence" problem in hospital rooms. I go into appointments angry and desperately needing to explain my current situation, but then once I'm in there and in pain I just don't say anything. Then, I walk out without the results I want just because I couldn't bring myself to speak up. At my last appointment though, I was clear and articulate and he was not upset at all (probably since stopping the Enbrel has not affected my joints at all). Actually, he was very understanding.
     I hate medication. It is a terrible and ungrateful thing to say, but I really do. I oppose the whole "baby aspirin a day" thing and only take my medicine when I feel like I need it. I'm not one of those people who completely rejects all medications and believes that herbal leaves or a special diet or more self-confidence or God will cure me, but I just don't like extra stuff floating around my system. Especially if it's not crucial. Of course, that ends up backfiring a lot, when I take NSAIDs too late and feel awful because my arthritis is not being controlled.  
     Sometimes, with my arthritis, I wonder if I'm good enough. I often don't have the energy to go out with friends. Does that make me a bad friend? I don't always feel well enough for church activities. Does that make me a bad Christian? I have to email all of my notes and do a lot of things with accommodations. Does that make me a bad student?
     There are so many things about arthritis that I never prepared for.


Love,
Rachel

Saturday, December 15, 2012

Flaring Up Once Again

      I barely ever use my full diagnosis. My full diagnosis is acute polyarticular juvenile rheumatoid arthritis (or acute polyarticular juvenile idiopathic arthritis). Five words is four words too many. I only use that diagnosis when speaking to medical professionals or my teachers. Here are all the terms I use to tell people what my disease is:
- Acute polyarticular juvenile rheumatoid arthritis
- Polyarticular juvenile rheumatoid arthritis
- Juvenile rheumatoid arthritis*
- Juvenile arthritis
- Arthritis
- JRA
- JA
     When people ask me a question that points to my arthritis (eg. "Why do you wear braces/splints?" or "Why do you bring your laptop to school?") I usually say, "I have this disease called juvenile rheumatoid arthritis." I then tell them a little bit about the disease and refocus on whatever I was doing before the question was brought up.
      People often ask me which term they should use. I tell them that it's fine just to call it "arthritis". There is really no point in making it more complicated than it has to be. But in all honesty, I prefer "JRA". I have a form of arthritis, but more significantly, I have JRA. I do not have injury-related arthritis, ankylosing spondylitis, or osteoarthritis. I have JRA.
      It's still fine with me if you just use "arthritis". Just something to think about.
      I feel like a lot of my life is telling myself a lie over and over again to try and make myself believe it. The only lie that has worked so far is "if I keep lying to myself I will believe it". That's really quite pathetic. Anyway, a few of these lies relate to methotrexate. It starts on Friday. On Friday, I tell myself "I will get my methotrexate tonight. I will not procrastinate it. This is a serious medication, and I will keep myself on a schedule with it." Anyway, that almost never works out. I get tired and I don't feel like being poked with a needle and sometimes I forget about it. Then I wake up on Saturday thinking "what in the world have I done my joints hurt so bad". I finally get it (most of the time) on Saturday nights. Then I convince myself that I will have enough energy on Sunday and Monday to be productive. I never do. Sundays are pretty brutal. After MTX, all my body wants to do is sleep for the next two days.
     I do not want to sleep for the next two days. Sleeping makes me feel lazy and useless. I like to think that I have some amount of worth and purpose. So I lie to myself again, saying "I will have enough energy for everything I want to do." At the end of the day, I just don't. 50% arthritis fatigue and 50% methotrexate fatigue gives me 100% fatigue; that's simple math. What's even worse is that people don't understand that I'm actually trying. When I say that I'm tired or exhausted, I really am. I'm not using that as an excuse to not have to do something. My body literally feels like it is collapsing on me. I have fallen asleep at church (not IN church, AT church) and at the lunchroom in school. I am exhausted and fatigued and I need to hibernate.
     Every Tuesday, Wednesday, and Thursday, I lie to myself by saying "I am strong enough to go without methotrexate. It just makes me feel terrible anyway." I'm not strong enough. I need that medication like I need orange juice (I really love orange juice). I'm flaring up again, and it's just a real bummer. I got out of my summer flare and was doing pretty well except for side effects, but not so much anymore. I had to go home after only one class period Monday because pretty much all of my joints were hurting, especially my elbows. My elbows and knees have been the worst lately. Did you know that elbows are the hardest joints to treat? That's what my pediatric rheumatologist told me at my last appointment.
      My elbows have also lost a lot of range of motion. It's really insane how fast things can go downhill. This last week has been miserable. I summon all my strength for things that are important to me, but sometimes it doesn't work out.
      There are things about my arthritis that I will never be okay with. Things that will never fail to disappoint me, even when they happen a million times over. I don't know if that is a weakness of mine or if it just goes along with having JRA.
      Never knowing won't kill me, but it sure is tough.

Love,
Rachel

  *You cannot say only "rheumatoid arthritis" because that's an adult disease that is separate from JRA. 

Thursday, December 6, 2012

Break The Rules

     The more I think about it, the more I think that "Don't Speak" was a bad post. However, I still think that it's accurate. I'm still going to leave it up, I'm still going to refer back to it, and I'm still going to be okay with it. But I want to use this post to dive a little deeper into it. Hopefully this will bring about more understanding. Please go ahead and accept that this is going to be a perfectly honest post, whether you like it or not.
     I have a theory that the title of "Don't Speak" has been taken very literally by many. Sometimes people just don't say anything because they don't know what to say. I understand that. But I think that sometimes people don't say anything because they're afraid they will say the wrong thing.
    To be honest, sometimes you are going to say the wrong thing. Sometimes you're going to be talking to me and I'm just going to be thinking to myself "stupid, stupid, stupid" or "are you seriously saying that" or "haven't you learned anything". I do appreciate the effort though, believe it or not. I am level-headed enough to comprehend that you are trying, and that you're giving it your all. So please, just say something. You don't have to be generic either. Just say things that you mean. I would hate to think that I missed out on a piece of insight by writing a judgmental post.
    As people with arthritis, we need to understand that others don't understand. How could we expect them to? Also, we have no right to lash out at others when they do say something stupid. We simply keep our grace, educate, and forgive. There is no need for harsh words or a long lecture. This is something that I would say that I do well. I do not get overly angry, I just get a little aggravated. For example, here is a typical conversation:
    Me: "My knee hurts because I have arthritis."
    Other Person: "Really? I think I have that too, my hands hurt when I write."
    Me: "Actually, that's a little different. I have polyarticular juvenile rheumatoid (or idiopathic) arthritis. It's an autoimmune disease."
    There is no point in being like "actually you have no idea what you're talking about" or "would you just shut up already because you don't get it". Grace. Class. Patience. We deal with arthritis; we can deal with other people. We do not raise our voices or lose our dignity. We press on with that much more gentleness. We are sick, but we will not let our sickness affect others. Perhaps that is one of the most important things to think about. We will not let our sickness affect others. 
    I'll be the first to admit that I'm not the nicest person when I'm in pain. However, pain is never an excuse for lashing out at someone. Pain shortens my temper, rips away my sense of humor, and shatters my happiness. Pain is no fun. But everyone has struggles, and if everyone lashed out, the world would be a very sorrowful place.
    I've heard everything on the "Do Speak" list before. That's why it's on there. There is really no need for everything to be repeated unless it is truly meant (though I suppose it could be helpful if dealing with someone who is newly diagnosed). Before you want to talk to someone with a chronic illness, you have to accept a crucial fact:

There is nothing you can say that will fill the void in a sick kid's life.

     No matter how hard you try, your empathy or comforting words can never balance out the pain. Broken relationships can be repaired with enough effort, time, and commitment. Mistakes can be forgiven, because God is just good like that. Most stress can be talked through and resolved. But words cannot fix a body that is constantly attacking itself.
     I'm now officially recommending that everyone stop trying to follow the rules and start following what they feel. Of course, you should probably still keep in mind what could be idiotic. But remember, every person that I've spent a decent amount of time with has said something stupid about my arthritis, something that did not help me at all, something that made me really question how clear I was being. Get over it. I'm not keeping a tally here, or replaying every little dumb comment in my head. Believe it or not, I have better things to do with my time.
     You can't be there for someone if you don't speak up out of fear of saying the wrong thing. If you really know someone well enough to the point where you're having a conversation about their arthritis with them, you ought to at least say what you're truly thinking and stop going over the mental checklist. You are not a robot.
     It is okay to mess up. People mess up all the time. Us JA kids are not expecting perfection out of everyone. We simply desire sensitivity and a genuine effort. It is exceedingly tough to talk to someone about arthritis who never brings up the arthritis themselves. No sick kid/teen wants to introduce such a painful and upsetting topic. Chronic illness patients just need someone to say something.
     In an email from one of my arthritis friends, Corrine, she wrote, "The best people don't wait for you to run to them, they run to you knowing that you need them."*

Love,
Rachel


*Thank you for letting me quote you, Corrine.

Friday, November 30, 2012

The Good in Hospitals

      I'm the type of person who cannot deal with those little annoyances in life. One of those little annoyances for me was going to be having a whole month without a post (the first time this would have happened since the start of my blog in March 2011). With the original plan of leaving in October and returning on the first of December, November would be left completely empty. I just cannot deal with that right now, and so I figured I'd go ahead and post early. I don't want to leave November behind, especially since it's my favorite month of the year.
      I have decided to continue with the bloggedy blog. I got a ton of really, really, REALLY sweet emails from a lot of my blog readers, and I just can't bring myself to make the conscious decision to quit. I am not a quitter. So that's that.
      Along with all of the super sweet emails, I got a LOT of feedback on favorite posts, post suggestions, and etc. I hope to incorporate a lot of the ideas sometime soon, and if you were one of those people who emailed me - thank you! On the same note, it's really amazing to me when I think about all the friendships I have all over the world with people because we all need someone to discuss arthritis with. Personally, I feel like it's kind of ignorant to say "the world is a small place", because in reality it's not at all, but I love making it more and more familiar everyday, even if it is just by emails.
      As far as what's next to come with my blog, I'm not completely sure. I know there will be a post on tea parties, and a post on heroes (still accepting personal definitions for what a hero is if anyone is willing), and a post on fatigue. I have about twenty drafts, but they're not complete and I kind of hate all of them. Who knows how far that will take me...
      Well, I guess this post should take an actual direction. I'd like to discuss some of the good in hospitals. I find that a lot of people with chronic illness constantly bash hospitals and how they operate and doctors and all of that, but there is more than a ton of good, also. At my hospital, it starts on the way to the pediatric specialties ward. First of all, my hospital is beautiful inside. The ceiling in the main area is just stunning, especially at night (no matter what time your appointment is, you'll always end up leaving at night, I promise). There are palm trees inside even though I do not live in a tropical area. The floors have recently been done and have been changed from ugly, speckled tiles to elegant hardwood.
       Then there's the actual rooms. As I've stated before, the pediatric specialties rooms have butterflies on the ceilings. Also, the physical therapy room was redone when I went last week, and there are now a few trees with lovely birds painted on the walls and outlines of kids playing.
       Of course, we can't forget about the people. Confession time: I have a favorite nurse. She's super affable and nice but it never seems like she's faking it. Anyway, we're kind-of sort-of besties, haha. And as much as I get frustrated with the whole experience of rheumatology, my rheumatologist is a good man. I also happen to very much like his nurse practitioner. Often times, there are volunteers (almost always college-aged people) in the pediatric specialties waiting room, offering seasonal crafts and coloring sheets. To top it off, I've rarely been without a supportive, understanding, and efficient phlebotomist.
      The best people in the hospital are the other patients. When you walk into a pediatric specialties waiting rooms, there are a lot of kids who are in pain and have disabilities and are sick. There is no judgment in that room. There are no eyes ripping you apart just because you flinch a little every time you take a step. Stares are simply nonexistent, because everyone is busy enough with their own lives. When you walk out crying, everyone understands. All of the other kids and teenagers are sick too, and they get it. There is no need for an explanation or babbling.
       That's the good in hospitals. There is no one from the outside world pushing you to be something that you just can't be because of your illness. As much as I try to deny it, I can't be everything. But I can take comfort in knowing that whatever I'm meant to be I will be. If someone offered to make every experience I've ever had with JRA disappear, I would say yes. I would be grateful and I would say yes and I would let them take it and I would probably run a thousand miles around the world with perfect knees.
       I have arthritis. It does break me down, but I can use it in good ways, too. I understand chronic illness. One day, no matter what I'm doing, I'll have this experience to relate to others with. If I'm a pediatric rheumatologist, I will be able to use my arthritis to prevent more pain. And knowing what pain really is, it would be completely awesome to be able to end that for someone else. That's something to be excited for.
   

Love,
Rachel

Monday, October 8, 2012

Taking A Break

     I'm sorry that I haven't posted recently. I've decided that I am going to take a break for a little while. My next post will be on December 1st, 2012. On December 1st I will either continue posting regularly or write another post like this one.
     I am more than happy to continue with email during this time, so keep them coming! I'll even have more time for email since I won't be writing blog posts, so if you take a second and send me a quick email we can be sure to keep up.
     I'd like to leave you with the link to my friend Kenzie's blog. Kenzie is an amazing girl and we've become really good friends through our arthritis. She blogs about her arthritis, her life, her faith, and fashion. Definitely be sure to thoroughly go through previous posts of her's as well, as there is a lot to be gained from reading her blog.

http://lifeaccordingtokenz-xo.blogspot.com/

     I'd also like to leave you with what is pretty much the JRA (and even chronic illness) anthem. Even if you've listened to it before, I would ask that you listen again, because it's worth it. It's an insanely beautiful song and it's pretty darn truthful. If you don't have arthritis, this describes a good portion of it. Because at the end of the day, we all just want to be ok.


     Even though I won't be posting, I will be putting a lot of thought into the future of this blog. I would love to know what your favorite post on here is, because that helps me to take things in the right direction. If one sticks out to you, please post the title as a comment on this post, send me an email, or text me if you know me personally. If you're not sure of the title, just give a brief summary of what you remember about the post and I'll be able to find it.
     I am also open to writing topic suggestions. It's sometimes difficult for me to know what other people need to know if I'm not getting adequate feedback. Again, comment or email me with any suggestions or ideas!

Love,
Rachel

Wednesday, September 12, 2012

The Little Things

    I've been meaning to write this blog post for a while, but I feel that it's especially necessary now.
    I'm not going to specify my location at all, but I live near a very wonderful hospital. Now you're probably thinking great doctors, wonderful specialties, exceptional care, etc. But I'm thinking butterflies. In every rheumatology room I've been in so far, there have been one or two butterflies painted on tiles on the ceiling. They give me something to look at every time I'm laying down having my joints essentially ripped apart by Dr. Rheumy.
    I looked up the butterflies and later discovered that employees, patients, children, and volunteers painted those butterflies. I think that's really great, because in the midst of the awfulness that goes hand-in-hand with rheumatology appointments, it provides a way out. A reminder that the outside world still exists even if the world of health is crumbling. I'd like to just take a second and say thank you to all of these volunteers for all of their hard-work, and not just at my hospital, but at all of the hospitals around the world. It's not just butterflies, either. It's the brightly colored walls, the people playing with the toddlers in the waiting rooms, and the many pieces of paper scattered throughout the hospital with the names of ordinary citizens who have donated money in hope that a life could take a better course.
   All of these brings me to one point, which is that the little things matter just as much as the big ones. You don't have to be a pediatric rheumatologist, a fellow arthritis-bearer, or a saint to help a sick kid. It's the little things that really count. The friend that calls just to say, "How are you doing?", the card in the mail, the answering questions about your arthritis for you when you're having a tough day, the smile  that comes from hope and not happiness.
    People underestimate how important they are.

Love,
Rachel

Thursday, September 6, 2012

Laughing Knees

*Written about one week ago*

   "Why do you think I roar?" I asked my eighth grade geometry class last year.
   "Why?" asked some skeptical friends. 
   "Because I'm a dinosaur!" This was my little catchphrase for a couple of weeks, and I still use it every once and awhile. It's stupid, but I was proud that I could think of something that rhymed on-the-spot like that. For those of you who don't already know this, I am a really terrible rhymer. Last year we had to make simple, basic-level rhyming poems to prove that we could rhyme and I had to redo mine because it was a "near rhyme" and not an "actual rhyme". 
    At least for me, I take pride in the things that I can do that don't come naturally to me. For example, social studies comes pretty easily for me. I'm just good at that type of thing. But I'm much more proud of my mini, on-the-spot rhyme than I am of an 'A' in social studies. That rhyme took some brain cells.
    I hope to improve upon things that I am not doing so well and stay consistent in the areas that I'm doing fine in. I hope not to get too caught up in goals in the process, and I hope not to slip through any cracks. I must have enough energy in reserve to be able to pick myself up when I fall. I mean this literally and metaphorically. 
    Speaking of meaning that literally, my knees have been giving out a lot lately. Sometimes I'll stand up and one of my knees practically laughs at me and I know that I must sit down again before things get worse. Oh, and apparently I've picked up some habits of when my arthritis is flaring up. My friend pointed these out to me when she declared to me that I was having a bad day with my pain. I was told that I rub my joints, rest my head on my chin, and mess with my eyes a lot. I am often astounded by how much my friends actually know about me. Even I didn't know that was true. 
    I'm not stupid when it comes to my JRA, and I know that the cause is my white blood cells attacking my joints, but I still feel like my joints are the evil ones in the situation. As crazy as it sounds, I get mad at my joints. A mix of mad and frustrated and disappointed. But where do I go with that? 
    School. Full of people who look at you like you're an alien when you say the words "polyarticular juvenile rheumatoid arthritis". People who ask you why your pencil grip is so huge. People who bump you in the hallway without realizing how much that will kill your hips. People who don't understand why you take stairs so slowly. People who ask you why you "get" to bring your laptop to class. People who think that only old people get arthritis. 
    About a year ago, I remember really considering whether I wanted to refer to my arthritis as "JRA" all of the time as opposed to "arthritis" so that people wouldn't associate me with an old person. Then I realized something crucial. The way I word my arthritis does not deserve that much of my time or thoughts, and I will call it whatever I want. 

Love,
Rachel

Thursday, August 30, 2012

I'd Rather Have Blood Drawn Than...

   One thing that I know a lot of newly diagnosed sick kids worry about is getting blood drawn, especially for the first time. I made a list (I've been into lists lately) of things "I'd Rather Have Blood Drawn Than", and maybe it will give a bit of comfort, because they really aren't that bad.
   Blood draws are seriously my favorite part of rheumatology, because I can't think of any other good part. I could not care less about having blood drawn, and I've never worried about it or tensed up right before the needle went it. I just think, Yep, I'm about to feel this needle, while I'm texting with my other hand.
   Oh and while we're on the topic, ask for a butterfly needle. After you get to be a teenager (literally the first time I had blood drawn after I turned 13), they start using straight needles. Straight needles hurt. Butterfly needles don't hurt. Plus, they always say yes, even if they're a little annoyed. Seriously, if you take anything away from this blog post, let it be to ask for a butterfly needle.
   So without further ado, I'd rather have blood drawn than...

  • Rip off a Band-Aid
  • Take a test
  • Go to the state fair*
  • Have a shot or injection
  • Go to the dentist 
  • Touch the tip of a hot glue gun
  • Watch "House Hunters"**
  • Get a paper cut
  • Watch just about any movie 
  • Have water stuck in my ear
  • Make just about any decision 
  • Get stuck on an elevator
  • Have a rheumatology appointment


Love,
Rachel

   *I don't like the state fair. The smell, the crowds, the uncleanliness, the lines, the activities, the dust, and the general obnoxiousness of it all. 
   **"House Hunters" is seriously the only show that I am just completely unable to watch. It's not a simple dislike (in the way the state fair is), it's pure hatred. 

Monday, August 27, 2012

Rheumatology

    I have rheumatology tomorrow.
    Anyone want to speak on dread, or anxiety, or nervousness, or fear? Yeah, I hate these appointments, but they're necessary. The day after is always the worst because he has practically ripped my body apart at that point, and the next day is pretty much an arthritis reunion. All of the different joints that hurt at different times come together and kill me all at the same time. So Wednesday should be lovely. I'm trying to get exempt from my exams this year, too, but I need three or less absences, and that will not click with my arthritis, because I miss a lot of school. That's kind of a bummer, but I still think I'll try. Might as well.
   My joints have been pretty bad lately, so this is one of my more important appointments. And I do realize that this is a boring post, but I've gotten emails questioning my six-day-disappearance, haha.

Love,
Rachel 

Tuesday, August 21, 2012

The Unknown

    When people think of arthritis, they think of joint pain. Rightfully so, if I may add. After all, arthritis literally translates into "joint" (arth) and "inflammation" (itis), and that equals pain. But what most people, even well educated people, don't know is the hidden side of arthritis. I thought I'd speak a little about that today. This post is more aimed towards people who don't have arthritis and could benefit from a better understanding, but also for people who have arthritis and can stand with me and go, "I know, right?"
    Haha, so to the point.
    First of all, let's talk a little about immunosuppressants. If you don't know what an immunosuppressant is, it is a medication that attempts to break down your immune system, which fights off germs and viruses and basically the "bad guys". When someone has an autoimmune disease, their immune system is attacking the wrong thing (in the case of JRA, the joints). To slow the attacking, immunosuppressants are given to weaken the immune system. While it can make autoimmune disease better, we also have less germ-fighting ability.
   Being on two immunosuppressants, I have to constantly sanitize and wash my hands, be careful what I touch, and avoid people who are sick. Petting zoos, hugging a person who's not feeling well, and sharing drinks/food are all off limits. Even if I'm in the petting zoo vicinity and not touching anything, I must still be very careful to wash my hands really well afterwards. If I want to share my food, another person's utensil cannot touch anything that I am going to eat. For example, if I'm having pasta, they either need to get a clean fork or I have to use my fork to put it on their plate. It just goes along with being on immunosuppressants. People on immunosuppressants tend to get sick more easily and get sicker than a normal person would.
   You know, it sounds like I must always be thinking about this, but it's just a way of life now in the same way that being a vegetarian is. I'd rather be safe than be sick.
    Secondly, we shall talk some about medications in general. Let's take two examples: NSAIDs and methotrexate. These are the two most common JA medications, so we'll skip biologics right now and just stick with these. NSAIDs tend to rip the stomach apart when taken consistently for long periods of time. Whenever my stomach hurts, it's usually from NSAIDs. They suck, but they reduce the pain about a one or two points on that 10-point pain scale, so I guess that's worth it. I don't know how many other kids with JA experience this, but I've tried a lot of NSAIDs that gave me severe and annoying ringing in my ears. Meloxicam was the worst about this, but I'm on Naproxen now. I remember one time in sixth grade when I was in science class and it was just awful, the ringing and everything. It was giving me a headache and it was sooooooo loud! I'm so glad I got off that terrible Meloxicam, but if it works for you, so be it. Naproxen seems to be working out alright for me. I still have the ringing, but it's not quite as bad.
    Then there's methotrexate. If you ever find yourself in a scary situation in life, when someone asks you to give an example of a love-hate relationship and you can't think of anything, say methotrexate. Seriously, it's the best example ever. First of all, methotrexate is pretty much the only medication that makes my JRA most of the time livable (which really stinks, since there's a shortage and everything). Let's begin with the injection (some kids take it orally, but most of us get the weekly injection). Injections are not fun. I don't freak out and I don't think they're the worst thing ever, but they're not fun, and that's just that. Then, the next day, I usually feel pretty darn crummy. Some days, I feel like going into Dr. Rheumy's office and screaming that if I am ever prescribed more methotrexate I will run to Antarctica, grab some icebergs, run back, and start destroying things and launching ice chunks at people. Then, on other days, I feel like giving him the biggest hug ever because I know my pain could be a gazillion times worse.
    Third, we have the ever-so-popular fatigue and exhaustion. Fatigue affects a lot of patients with JRA. I don't have fatigue, but I do get exhausted really easily. I use my wheelchair when we're in situations that require prolonged amounts of walking, but if I even get up to walk around a single store, I am extremely exhausted afterwards. The littlest things suck away all my energy. We arthritic people have to use our time wisely. This goes along with the spoon theory (which I'm not a fan of, but I understand).
    Lastly, we'll take a trip down Uveitis Avenue. Uveitis affects an alarming percentage of kids with JA. It can even lead to blindness, which according to Arthritis Today happens in about 45% of cases of uveitis. I don't have uveitis myself, but a lot of my friends from the JA Conference in St. Louis did. Kids diagnosed with JA will usually see an opthamologist once every six months to check for warning signs and symptoms of uveitis. Catching it early can make all the difference.
    I hope this blog post provided some insight on some of the more hidden things that come along with arthritis, and if you can think of any more please leave a comment or email me at thekidwitharthritis@gmail.com!

Love,
Rachel 

Wednesday, August 15, 2012

Heat Patch Fail

   I am ashamed of myself. 
   If you happened to read my last blog post, I mentioned that you should never, EVER, under any circumstance stick a heat patch directly onto your skin, because it WILL burn and I HAVE tried it before. So you'd think that being human and connecting actions to consequences, I wouldn't be stupid enough to do it again. 
   I did it again. 
   Okay, okay, let me explain myself. I usually get my heat patches at REI (link at the end of post), and they're really great, but I was in Las Vegas and headed to Alaska and I didn't have any more. So we bought these things that are supposed to go directly on your skin. I didn't end up wearing them in Alaska, but my back was flaring up today so I decided to try them. I read the instructions. I did what they said. So I get a little credit, right?
   Nope. 
   Because even when I specifically told others and also myself that that is a very poorly thought out idea, I did it. I feel like I do that with many, many things. 
   There I am, sitting on the edge of my bed, sticking a heat patch directly to my skin. It didn't hurt at first, but then I discovered that I could barely bend down without getting it all wrinkled and messed up. Of course, that would be the moment when I needed to change my cute little studs with some awesome Canadian earrings. If there is one thing in this world that I am just pitifully miserable at, it's changing out of studs without dropping the earring or the back. Predictably, I dropped the backs twice and had to get my sister to pick them up. That is a heat patch fail if I've ever seen one. 
   It wasn't very hot at first, just uncomfortable, but then good gracious did that puppy heat up (for readers who translate, ignore the last sentence). All of the sudden, my back was burning hot and I was trying to put up with it. It's one of those decisions where you have to be like, "What's worse, arthritic back pain or the red burn that's about to appear on my back?" Well, I decided that arthritic back pain was worse and put up with it. 
   Then during Youth I was just about scalding my back so I took it off immediately afterwards. My back pain was nearly gone and my back stayed warm for a good hour or longer. I have to say, I'll probably do it again, even though it's a wee bit stupid.

Love,
Rachel 

Tuesday, August 14, 2012

Cold Weather Tips

    Starting in September, it will start to get colder where I live. And I know this post seems out of place, because on my side of the world we're in summer and it's quite hot, but it's best to plan ahead.
    Cold weather is a flare-up trigger for most people with arthritis. To stay healthy (or prevent your arthritis from getting worse) during the fall and winter season, I've created a list of tips. I have personally experimented with all of these suggestions and found them useful. Remember that everyone is different and stay safe!
  1. Heat up your socks with a hairdryer. It sounds stupid, but it will keep your toes, ankles, and feet warm which prevents a flare-up. The same can be done with gloves. The thicker the sock, the longer you should blow-dry it. Make sure the warmth is appropriate and safe before putting them on your feet - they heat up quickly! 
  2. Wear braces on your knees or any other joint. This helps with stabilization and with keeping your knees warm. Don't get ones that prevent too much flexibility, as we don't want to stiffen up! 
  3. Set two alarms - one for thirty minutes before you need to get up and one for the time you need to get up. Have a heated blanket ready. After the first alarm, plug it in and turn it on. Sleep more. Second alarm goes off a wah-lah! Your joints are not quite as stiff! 
  4. Sleep with your socks on. Sounds annoying, is annoying, really works. 
  5. Hot tub time. Okay, so as some of you already know, I absolutely HATE hot tubs. But in the cold weather, they can do a good deal to keep your joints in motion. You don't have to stay in too long for relief. I hate being wet and I hate hot water (I've been known to get cold showers), so this is a tricky one for me. It actually doesn't help very much unless you've just gotten out of the cold, in my opinion. 
  6. Henry to the rescue! Henry = Rachel's beloved heating pad. (Did I seriously just speak in third person? Didn't I learn my lesson about that in geometry?) Anyway, Henry can be extremely beneficial. Opt for him or a heated blanket to help you when you're doing a sitting-still type of job or chilling out or whatever. 
  7. Prepare yourself. Look at the forecast ahead of time. If there is high humidity, a rain shower or storm, or especially cold weather ahead, make sure to follow these tips and any more that you may find very diligently. Arthritis has been known to trap people on-the-spot with flare-ups, including myself. Trust me, it's best not to let it get to that point. 
  8. Get heat patches. I have found these at athletic stores, and you can buy an adhesive kind that will stick to the outside of your clothing. I frequently use them for my back. No one can tell, if you're wearing two layers and you stick it on the first. YOU CANNOT STICK THESE DIRECTLY ONTO YOUR SKIN. I cannot emphasize that enough. I was stupid enough to try it once, and boy did that get painful. 
  9. Keep ibuprofen close at hand. This is a pretty dumb tip, because you should be doing it year-round unless your arthritis is in remission or doing significantly well, but it is extra important in the chilly months. 
  10. If you're waiting, wait inside. There is no point in standing around in the cold, because that will only make your joints worse and you WILL become irritated with every single person in a 3-foot range. 
  11. Don't follow these tips. I know, I know. Right now you're like, "Rachel, what in the world, why would you tell me all of these and then say don't follow them?" Well, that's not actually what I mean. You should follow the tips as much as you can. But don't let them stop you. You can still go outdoors and get cold if you don't have any ibuprofen or heat patches, but you need to understand the consequences. And if you're the type of person who always takes it too far, like I am, then maybe you're best just sticking to the tips. Just don't let them be deciding factors. 
     Sorry that these posts haven't come very frequently lately, we were busy with traveling. If you have any additional tips, comment on this post or email me!
    Also, I've been really behind on email lately, but I'm going to attempt to at least partially catch up. Thanks for being patient with me!

Love,
Rachel

Wednesday, August 1, 2012

Surviving Arthritis - Newly Diagnosed Part 2

Here is the Part 2! For this portion, I tried to focus more on the medical aspect of being newly diagnosed.
Stage One: Do your research. You'll feel much more in control and comfortable if you are knowledgable about your arthritis, specifically your individual type. There are plenty of good resources out there to help you. A lot of times, the pediatric rheumatologist who is treating you will provide information. Another great resource is the Internet, as long as you are finding reliable sources. Education is the first step to control.
Stage Two: Talk to your doctors. Every kid with arthritis has a medical team, often consisting of a pediatric rheumatologist, a physical therapist, a pediatrician, and even a psychologist in some cases. It is important that all of these people stay informed about how you are doing.
Stage Three: Think about your joints. I don't mean just lingering on the fact that they are kind of screwed up. I mean thinking about how different activities in tour everyday life will affect them. For example, we went bowling a few days ago. I have to think about the best way to bowl that will cause my wrists and knees the least amount of pain.
Stage Four: Make sure the people who need to know know. You don't have to share your diagnosis with everyone (though every situation is different), but it is important that your teachers at school and other adults who have responsibility over you for some period of time know. The worst time to be explaining that you have arthritis is when you are close to falling in the hallway or struggling to write on the board. Trust me, you do NOT want to go there. This is medically important because you need to be able to limit yourself and take your medications without being questioned or interrogated by adults.
Stage Five: Know your medications. You never know when you will need this information.
Good luck!

Love,
Rachel

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

Thursday, June 28, 2012

So Sorry

    I know I owe you all a post.  But I just can't write right now, and I'm sorry.
    I'll post by July 6th, I pinkie swear.
   

Thursday, June 14, 2012

Let's Not Relate

    Making an attempt to relate to people with chronic illnesses doesn't always help. Sometimes, it works. Sometimes I'm very appreciative and people have good intentions. Most of the time, it is a sign of a miscommunication.
    "I had that when I was a kid," or "Yeah my mom's grandma has that," or "I got arthritis when I started playing sports too," doesn't really do me much benefit. People don't understand how different juvenile rheumatoid arthritis is from injury-related arthritis, osteoarthritis, or even just regular ol' growing pains.
    Let's have a little medical lesson, shall we? A little mind refresher? 

Autoimmune diseases as defined by www.Wikipedia.org:
"Autoimmune diseases arise from an inappropriate immune response of the body against substances and tissues normally present in the body. In other words, the immune system mistakes some part of the body as a pathogen and attacks its own cells. This may be restricted to certain organs (e.g. in autoimmune thyroiditis) or involve a particular tissue in different places (e.g. Goodpasture's disease which may affect thebasement membrane in both the lung and the kidney). The treatment of autoimmune diseases is typically with immunosuppression—medication which decreases the immune response."

And a definition from www.dictionary.com:
"A disease resulting from a disordered immune reaction inwhich antibodies are produced against one's own tissues, assystemic lupus erythematosus or rheumatoid arthritis." (See that? Already making my point for me.)

Now let's get a definition for osteoarthritis (from www.dictionary.com): 
"the most common form of arthritis usually occurring aftermiddle age, marked by chronic breakdown of cartilage in thejoints leading to pain, stiffness, and swelling."

And finally, a definition from www.dictionary.com for rheumatoid arthritis: 
"a chronic autoimmune disease characterized by inflammation ofthe joints, frequently accompanied by marked deformities, andordinarily associated with manifestations of a general, orsystemic, affliction."


     Do you see the incredibly remarkable difference??????
     I'd like to think that some of you just learned something. For more information on JRA, click here.And don't worry, it opens in a new window so you can still read the rest of this too.
     People annoy me. That's terrible to say, especially since people are what much of the interesting world is made up of. I think it's more specifically people my age. I communicate and get along with adults much better. Which is not to say that I don't have friends or that I don't love my friends to death, because I do. There are most definitely exceptions. The past six sentences are probably why my teacher has announced to my class that I am an anti-social person and I did my best to talk to as few people as possible on the last day of school. 
     Oh yeah, the last day of school. I was pretty anti-emotional until the last fifteen minutes, when I got a little sad solely because everyone else was sad and it was sort of an unspoken obligation. Plus, emotions are contagious. Who could blame me? It's odd to think that it has only been a week since the last day. It seems like it has been an eternity. 


Love,
Rachel

Monday, June 4, 2012

Script and Sculpt

   I'm so sorry for not blogging for awhile. We had a lot going on. Sort of. I suppose that I still could have blogged.
   My two favorite words in the whole wide word are probably "script" and "sculpt". Obviously, I love the "pt" sound and the unfinished look of the words. I love how deceptive the word script can be. It's as if everything is planned, but every human knows that nothing ever goes exactly as planned. And then sculpt. It's so beautiful because it's hands-on art. You know, I can't really explain exactly what I like about that word. But I really, really like it.
   I've actually been getting excited lately! Even though it was only about visiting a children's museum, maybe things are changing. Maybe I'm changing. My joints have been worse in the past couple of days, but I've been happier. Positivity, much?
   I really cannot stand it when people don't have vegetarian options, or when their vegetarian options are terrible. Like, "Have this apple, it doesn't have meat." (I do really love apples, but they need to have something related to the meat dish, like veggie dogs or veggie burgers or non-meat sauce or something.) People can be so inconsiderate. Then some freaks say, "Here, try a piece of meat and see what happens!"
          NO
I do not want to try meat. I'm not a teenager going through a phase. I've been a vegetarian since I was seven years old and felt bad for the chicken in my chicken nuggets. It's been more than a few years, and I'm pretty sure a lot of it has to do with my stubbornness. I can say with absolute confidence that I am and always will be a vegetarian. 
   We had our End-Of-Year Formal recently. All of my friends and I put on pretty dresses and did our makeup and hair and all and then it turns out the dance was completely dark with colorful, spinning lights and loud. I was not amused, but everyone else seemed to have fun. 
    First of all, in every one of my classes I'm in a seat where I can see almost everybody. The largest number of people I can't see is in chorus and strings class, where I can't see like one or two people. Even that drives me a little insane sometimes. I have to be able to observe. I would consider myself both an observer and an engager, so don't ask me which one I am. I like to know where people are, who they're with, and what they're doing. Otherwise my stress level skyrockets. That's coming from someone who pretty much never gets stressed.
    Second of all, I avoid specific restaurants that are loud. My family knows this too. There are places they try to go only without me based solely on the noise and activity level. I like a quiet but still busy atmosphere. 
    So there I am at the dance, sitting outside in one of the little circular tables talking to a few of my friends. People kept coming out and asking me why I wasn't dancing and I just replied, "That is NOT my environment." They probably all think I'm crazy, a teenager who doesn't enjoy dark places with seizure-inducing lights and a bunch of people cramming into each other. 
    The end of the year is quickly approaching. I'm not very sad about it. I feel almost ready to move on. There are only two classes that I know I'll miss. And I still have the memories. Plus, me and my friends have a pretty darn good system for if we start to feel sad. We're just going to think about this one terrible class and BAM! we'll be happy again. 
    I have played so much guitar lately. It's probably going to kill me one of these days. 
    There are so many good-byes and thank-yous that I have yet to save, even this late in the year. Three words: cards and letters. Talking is not my thing and it's not worth trying because I have great assurance that it won't work. 
    I think the main key to living a happy life with chronic pain is just to get up. It's not worth staying cramped up in your house all day and wasting the days away. Get out there and help yourself and others. Pack food bags for homeless people and drive around and give them out and talk to people. Or just go to the mall to get yourself moving. Go to church regularly or as much as you can. Even just get up and cook a super-nice meal. It's all about not sitting around and sulking in the pain. 
    Rule #1 of Being in Chronic Pain:
    Never let the monster take over. 
    After all, losing isn't nearly as fun as winning. 

Love,
Rachel

Tuesday, May 29, 2012

Birthday Post

    Remember when I mentioned that over twenty different countries were viewing my blog? Well, now I'm up to forty! This is so exciting :)
    Plusssss today is my birthday. Which makes me feel like forty different countries is like a blog-present. I think I'm going crazy. And while we're on the subject, thank you for all the singing and the cards and the presents and the love today!!!!!!!!!!
     Everyone was asking me if I feel any different being a year older now, but honestly I don't. I'm still just me. I'm still just a person. I'm still going to write on this blog, I'm still going to play guitar until my fingertips are numb, and I'm still going to reread things excessively. So no, I do not feel any different. I still feel like me.
     I feel pretty neutral about birthdays. They're fun, sure, but I don't like how people get sad about them, especially older people. Who cares how old you are? Just have fun. Don't stop having fun. We were talking about retirement in geometry, and I casually mentioned that I don't ever want to really retire. Because the thing is I want to be a medical missionary, and it's not like I'm ever going to stop doing that. "If I did retire I'd at least be doing things," I told my friend, seeking a compromise.
    "Retirement is when you just sit and wait to die," he replied.
    "Why would you ever wait for it?" I laughed, "Trust me, it will come fast enough, it doesn't need to be waited for!" We laughed some, but really. I hope I'm never to the point where I'm not doing anything productive, whether it's traveling the world as a medical missionary, folding clothes for a homeless shelter, writing a book one finger tap at a time, or being an ear to listen.
    So happy birthday to me. I have to go to my chorus concert soon, and I am seriously debating about whether to curl or straighten my hair. It's naturally very wavy, so I'm thinking more along the lines of curling as that should be easier. But I don't really know for sure. Life's hardest decisions are the small ones.
     One more thing about birthdays: enjoy them, because you only get one a year.

Love,
Rachel 

Tuesday, May 22, 2012

A Chariot to the Sun

     Apollo's chariot skimmed the sun. My chariot dove straight into it. 
     My chariot is better than Apollo's, to put it simply. I built my chariot off of dreams with weight and substance*, not empty visions. Apollo built his depending on four horses to pull it. I built mine pulled by hope and even fear. 
     Things are much more amazing when you take a chance to see the fire, to feel the heat layering up on your skin. Apollo saw the outside and got a simple taste of the sparkling fire but never felt it. But how can someone convince Apollo to just go for it? Isn't that the tiniest bit impossible? Why can't Apollo just "let his hair down"? 
     I feel sorry for Apollo. 
     On a completely different note, I haven't had biofeedback in a really long time. I don't really miss it, I was just thinking about it. I'm pretty darn proud of myself for going ahead and agreeing to try that out about a year ago. It hasn't helped my arthritis at all, but it's made me better at coping with the pain. I've gotten to the point where I'm willing to try anything, even if it's something that I think is crazy. When you're truly in a lot of pain, you don't shut down ideas before trying them. 
     Not that the pain isn't still excruciating. My wrists and knees have been the worse lately. I know it's bad when I go into a zone where I almost don't feel it. My head spins a bit and audible things aren't quite as clear and precise, and then there I am, soaring my chariot into the sun.  
     It's a tricky situation, telling someone that you're in pain. If you say yes, you come across as weak. If you say no, you're setting yourself up for failure when you later have to explain why you couldn't get all of the notes down. If you say just a little, they look at you suspiciously. People see past lies like that. Took me an awful long time to learn. 
     I wish there was someone to talk to, even if they wouldn't understand. 
     So in response to my occupational therapist telling my mother that I was "traumatizing and wearing out" my hands by playing five different instruments, my mother said that she thinks that playing and writing music is good for me psychologically. I wonder if that's true. I don't really see it as much of a stress reliever because I scarcely feel stressed. I see it as an anger and frustration outlet type thing. I'm always better at piano when I'm mad/aggravated and when it's early in the morning (I don't know why, so don't ask me). 
     Anyway, I had an amusing conversation with my occupational therapist. 
OT: What do you normally do when you get home from school?
Me: Play piano. 
OT: What do you do if that hurts?
Me: Play guitar. 
OT: What if that hurts, too?
Me: Practice my cello. 
OT: But wouldn't that be painful, too?
Me: Then I'd play ukelele. 
OT: (Disappointed sigh)
Me: I sing, too. 

The singing part seemed to comfort her a little bit. (Until I mentioned that I sing while playing guitar...I'm evil.)  Makes me feel a little better too. Singing is probably up there with piano as one of my favorite things to do. Plus, it doesn't even hurt! Not even my jaw, usually! It's pretty perfect, huh? Except of course when I decide to play an instrument at the same time...
    Clearly, my fun level is more important than my pain level. That's something I'm pretty proud of. I've grown up fast, but I still have my young-person priorities very set-in-stone.
    A lot of people ask me what my favorite instrument to listen to is. Honestly, I really like listening to singing, but I also love to listen to piano. But I like to watch the pianist while the piece is being played. Because if there's some depressing moment going on and the pianist looks like they've just been offered a super high-paying, easy job, then I can't enjoy the music. If it's glorious, look like it's glorious. If you as the musician are not invested, then I am not going to be invested, either. Of course, I'm not the best at this. My lack of facial expressions does not offer any assistance. 
     It never feels good to get something you didn't work for. I mean, it's nice and all, but it's when you get something that you really worked for that it counts. 
     A lot of arthritis blogs talk about the importance of getting a lot of sleep when you have a chronic illness, to help rejuvenate your body. This has never been an issue for me, because I am pretty incredible at sticking to a 9:00-10:00 bedtime. This is just my personal rule; my parents don't really have any rules about what time I go to bed (not that they would let me go to bed at 1:00 a.m. or anything). I have discovered that I'd rather wake up and feel great (except for some serious aggravating joint stiffness) than stay up late and wake up sluggish. Still, I'm convinced that if I went on a wacky sleep pattern my arthritis would be worse. So I'm going to be your mother right now and tell you to go to bed early and take naps throughout the day. 
     My birthday is in a week! I don't tend to get as excited about birthdays as most people do. It's not a real measurement of your age. It's simply the number of laps you've run around the sun. As far as I'm concerned, my chariot's already been to the sun and back. So how are you going to judge my age now?

Love,
Rachel 
    
*See that, youth people?