Saturday, September 21, 2013

Rights and Wrongs and In-Betweens

     I honestly do not think I will ever be sure what the right thing to do is in the fuzzy world of disease. Is it right to try to let my body heal itself without medication? Is it right to inject poison into my arms on a weekly basis with no guarantees? Is it right to load myself down with drugs? Is it right to try to "pray it away"? Is it right to keep on disappointing myself by going to doctors?
     I do not know what is right. I do not think I will ever know. I do not think it is possible for someone as ordinary as me to know such large, grand things. I have no problem admitting that in the world of healthcare, I have absolutely no idea what is right and what is wrong.
     However, I have a moral sense of what is right and what is wrong, as well as a physical sense. I instinctively know, as all humans do, that pain is wrong. Pain is wrong and bad and no fun. Feeling good and healthy is right. Healthy is right and sick is wrong.
     What very much bothers me is when people who do not share my experiences criticize me on my choices. Right now, I am medication free. I am not proud to say that, but I am not particularly ashamed either. I know what my doctors want. My doctors want me to be on medication. But last time I checked, they do not have arthritis. So I get a bigger say than they do.
     When someone criticizes my medication choices, it is as if they are saying, "you are not trying to obtain what is morally and physically right by not going the path I would go in". We all see the end result the same way: pain is bad, healthy is good. However, we see different paths to healthy. But heaven forbid I do not choose your path, that would be such a crime!
       Also, if I have gone off of something that is scientifically proven to work, I think it is safe to bet that there is a reason I did it. I like to think of myself as at least a tiny bit intelligent. Intelligent at least enough to not do something completely stupid.
       I do not know what is right and I am willing to admit that. Trying to tell someone what is right in the world of in-betweens is an arrogant thing to do. It comes off as parental and harsh. It is better, when talking to a friend or family member with a chronic illness, to focus on the end goal, the goal of no pain at all. This end goal is often the only thing that unites me with my friends. They might not understand why I am not on any medication, but they do understand that I am "sick and tired of being sick and tired".
       I would not understand me either if I were on the outside of this. I would not understand why someone would quit a medication that seemed to be helping. I would judge me and think of me as not particularly bright. But now, having this terrible disease, I cannot bring myself to judge another person's choices. One of my friends recently stopped seeing doctors and is now on a tea diet to try to cure her arthritis. She has not even tried traditional medications yet. And miraculously, I can understand that. Because at the end of the day, we both want the same thing. We both want to be able to keep up when walking crowds, and never have to ask for help. We want to be able to sleep at night and to run around and to fulfill all of our life goals. We both want to stop hurting. I cannot judge her for wanting desperately to "be ok", because I want the exact same thing. Some people are already ok. And that's great, but you cannot judge those of us who aren't.

Love,
Rachel

Friday, August 16, 2013

Silence

     There is an ongoing joke within my youth group that I hate fun. I personally don't mind this joke at all, because at the end of the day, I completely agree. I'm in the minority of teenagers who do not like loud music, dancing, chaos, messiness, and large groups of people. In fact, I cannot stand crowds and lots of noise. I've been thinking about why this is lately, and I have come to some conclusions.
      First of all, I place immeasurable value on one-on-one or small group conversations. I feel ten times more comfortable in a small setting than with a lot of people. I'd rather have a really good conversation with one other person dealing with arthritis than be placed in a room with one hundred people with arthritis. At church camp, where this "Rachel hates fun" joke came about, my mission site involved interacting with children. By the end of the week that we were there, I knew about 4 kids really well. I was familiar with all of them, but I knew those 4 children significantly better. I feel like that is where God calls me a lot of the time. I feel like a lot of the time I am meant for one-on-one conversation with people. Of course, in a lot of ways, this turns into a weakness. But sometimes it is a very good thing.
      Secondly, I am completely comfortable with silence. I do not feel awkward when a conversation, car ride, meal, etc. becomes quiet. I have a theory that more words are said in silence than in speech. I think arthritis has really made me this way. A good friend doesn't always speak or know the right thing to say. Sometimes, a good friend just shuts up. Silence is very wonderful and is perfect in some situations. It is time for our society to overcome the notion that silence is bad, awkward, and unnecessary. Silence is as crucial as sound. It was only after a long time of sitting against the wall with our legs crossed that one of the little boys from the mission site at camp began to tell me why he was so upset. What he needed was not only a fix to his problem, but someone to care. He needed someone to wait with him until he was ready to explain; someone to care enough to be willing to sit there in silence with him. Even if he never told me what was going on, I still think just being there with him would have meant something to him. Because I have been exposed to the beauty and the kindness of silence, I hate lots of noise and loud sounds and commotion. I like the quiet moments much better.
       My idea of fun has been drastically different ever since I got arthritis. I like going to quiet little restaurants, listening to people play guitar, and writing. I like getting on the elevator at school and having a normal, happy little conversation with whoever else is on there. I like listening to other people's stories and reading. I like curling up on the couch with my sister and watching Grey's Anatomy. And my favorite thing in the world to do? I like to go to the church playground all by myself and swing. I like being able to hear the birds and forget about everything else going on.
       I firmly believe that the reason I appreciate silence so much is because I have arthritis. In moments of intense pain, you find that the most important thing to do is breathe. You find that no words anyone can say will make anything better. Silence is essential in those moments.
       I like having fun, but I like my kind of fun. My kind of fun is not loud. My kind of fun is rather quiet.

Love,
Rachel

Sunday, July 7, 2013

Marginalization

      Let's get something straight. Marginalizing people because they have a disease is not a thing of the past. In fact, it happens every day. Every day, people are looking down upon, spat upon, and isolated because they have a disease. A disease that they have no power over, a disease that they cannot control. Even children are marginalized due to illnesses.
      I have felt marginalized before. It is not fair. It is not fun.  I am the type of person who is much more likely to be upset about something than angry about it. I am aware of that. So when I am marginalized, or when I see other people being marginalized, it makes me very sad. I do not think of that as a bad thing. If I were not upset about it, I would be some sort of monster with no compassion. 
       Along those lines, our society also marginalizes people who are very compassionate. People who want to change the world are looked at as lunatics. It is frowned upon to become too "emotionally involved" in practices such as medicine, counseling, law, teaching and more. I agree that there are ways to become too emotionally involved. If we ignore our instincts and logic, we end up in dangerous and vulnerable situations. However, if we do not become emotionally involved at all, or if we only let ourselves get involved to set degrees, what good are we really doing? Sometimes, people just need someone to care enough to be willing to become emotionally involved. People need someone willing to sacrifice and risk heartbreak for them. I think we forget that all too often.
      We are human beings. We are meant to become emotionally involving. We are destined to be sympathetic and understanding. By the grace of God, we care about each other. We mirror each other. People laugh together and people cry together, but rarely does one laugh while the other cries. 
       So it all comes back around. We marginalize people, yet we are not willing to invest in them, to become emotionally involved to help turn their lives around. We regard disabled and sick people as the lower groups of society, yet we have no interest in even asking them their names. We do not want to raise them up, because that would bring us down. 
       One of the advantages (and disadvantages) of having an invisible illness is that you lead a sort of double life. One day you are fine, strolling through the mall like any other teenager. The next, you're struggling up the stairs and asking your best friends if they can open your water bottle for you because your fingers won't move. I live both lives. I see both sides of the story. One moment I'm in the "normal" group, the next I'm marginalized. And you know what? It's awful. 
       The reality of it is even worse. I never change as a person, whether my joints are pulsing with pain or they are doing relatively alright. My attitude changes. My happiness changes. But I never change. The heart that beats inside me when I am in pain is no different than the heart that beats inside me when I feel okay. My DNA doesn't flip around. My name never changes. 
       No one deserves to be marginalized. 

Love,
Rachel

Saturday, June 29, 2013

Aim High

      In elementary or middle school (I can't remember which), I watched a video on smallpox. That video changed the way I think.
      I haven't told many people about this, but that video really hit me. First, we saw all of these pictures of people infected with smallpox. It was horrifying and hard to look at, but more than anything, it was saddening. Many of them were only children. Children like me. That could have been me. It really hurts to see things like that. But then the laboratories took over the screen. They showed the creation of the smallpox vaccine. Then, they showed all of the epidemiologists and health organizations working together. You know what the goal was? The goal was the eradicate smallpox from the entire world.
      I was stunned when I saw this. Their goal was the whole world! I cannot imagine shooting for a goal that big. I mean, isn't the world all we have, at least right now? There isn't a bigger goal! How in the world did they think they were going to completely eradicate smallpox? Plus, doesn't that seem kind of unattainable? Isn't that just setting themselves up for failure?
      Nope. They did it. They eradicated smallpox. There are no more cases.
      If they can eradicate smallpox, can't I set high goals, too? After all, they were only human. This is the perfect example of what teamwork and aiming high can do for you. I find it bothersome that some people think I'm crazy when I aim high.
      On top of many other things, I am aiming for remission. I am not putting a time limit on it, because that will upset me if I don't reach it, but I want it very badly. I don't think it is unreasonable or stupid. I think remission is something I will one day have. I truly do. Of course, I hope that remission arrives sooner rather than later, but I know it will. I think that is the Christian hope that everyone speaks so highly of: knowing that this life is not the end of things. So even if I never go into remission in this life, one day everything will be lovely and pain-free and I will be able to run and chase fireflies without tiring or hurting. However, that doesn't make today much easier. Because today, it hurts. And today, I was limited by it.
      People always used to tell me that I could use my juvenile arthritis to relate to other kids with juvenile arthritis one day. I'm pretty confident that I'm no longer headed down the pediatric rheumatology path, but I really do think it will be an experience I can use to relate to others with. When people first suggested that I will be able to speak to other kids with arthritis one day, I was a little overwhelmed. I mean first of all, I'm nothing special in dealing with this. I'm pretty darn average. Secondly, how in the world will I be able to talk to kids with arthritis? Won't it make me upset? It's hard at the arthritis conference to look around at the conference area and know that all of the other kids hurt too. It's hard to walk up to the kids of a mom whose blog I read and know how much they have been through. I don't go through as much pain as some of the kids there, and it's hard to think that they have to deal with the same pain or worse pain. In fact, it is hard to know that they have to deal with any pain at all. It is not okay with me.
      But now it seems so clear that even though I don't believe my arthritis is a blessing or purposeful "gift", God will be able to use it. I will be able to look in that child's eyes with empathy and I will be able to know how badly it does hurt. I may not be able to fix it, especially since I no longer have my heart set on being a doctor, but I will be able to understand. I cannot even begin to count how many times I've wanted someone to understand.
      I will aim however high I want. If human beings can eradicate smallpox, then I can live an extraordinary life.

Love,
Rachel

Sunday, June 23, 2013

Never Defined By Disease

      I'm the girl writing the angry blog post at midnight on my bed in my room. Honestly, I was about to go to bed. In fact, I want to go to bed. I don't even need to write this, as terrible as it sounds. I have an idea for another post separate from this one already, and I wrote a post yesterday that I was planning on publishing Monday. But for some reason, I get my best ideas late at night. Tonight is one of those nights.
      It really, really bothers me when people tell me that my JRA does not define me. I know that sounds very odd.* But hear me out. I never thought it defined me in the first place. In fact, I'm sure it doesn't. However, I think sometimes my JRA is all people see of me. Wrist splints and a slight limp can be the first thing people notice. But that doesn't mean it defines me, that means other people don't look past it.
      When people tell me that JRA does not define me, even when they're trying to be encouraging, it is somewhat offensive. It implies that I act like it does, or thought it did. I mean for goodness sake, half of the people who say that read this blog. Clearly they never read "Defined".
      Also, by saying, "Your juvenile arthritis does not define you," when we are not even talking about juvenile arthritis tells me that it does define me. What if the last thing someone told you was that your disease does not define you? Is that the last thing you would want to hear from that person? It obviously defines me if someone brings it up randomly! Was there really nothing better to say, nothing about who I am as a person and not as a disease?
      Additionally, no one ever tells you what does define you when they say that arthritis doesn't define you. If my arthritis doesn't define me, what does? Is it Jesus? Is it music? Is it writing? No one ever tells me. I want to know. If you don't think arthritis defines me, what do you think does? After all, what does define you is more important than what does not. If you look up a word in the dictionary, it doesn't tell you what it isn't. It tells you what it is. So if you are going to try to tell someone that they are not defined by their arthritis, you better be ready to tell them what they are defined by.
      I do not mean to be so angry. I just get really worked up. I'm truly infuriated right now, because I see this happen so much and I see so many broken hearts because of it.
      As with all things, there are exceptions to this. If someone says something along the lines of, "I am no greater than my disease,", then it is perfectly acceptable and even admirable to say, "Your disease does not define you." It is when it is random and spontaneous that it stings so badly.
      Writing this, I debate whether I bring on this "encouragement" myself. Do I focus too much on my arthritis? Should I even be writing this blog? Why not just keep to myself and pretend my pain doesn't exist? Why do I allow my phone to buzz with new emails, texts, tweets, and alerts relating to my arthritis? Why not block it all out? Am I shaping my identity around my arthritis?
     Personally, I think I should be able to keep a blog about juvenile rheumatoid arthritis without being told every five seconds that my arthritis does not define me. Because I know that, and I always have. I'm just scared that I'll let it, intentionally or unintentionally.

Love,
Rachel

*As much as I hate it when people tell me that my JRA does not define me, it is NOT better to tell someone that their arthritis does define them. In fact, it's a million times worse. Luckily that has never happened to me.

Monday, June 10, 2013

Two Hours and Fifteen Minutes

     3:40.
     What kind of first-time rheumatology visit starts at 3:40? Don't labs usually close at 6? How in the world are we going to get everything done with so little time? 3:40 is so late for a first-time rheumatology appointment. I don't even know what to think about it.
     I have been to this hospital before, where I had a not-so-great rheumatologist. I was diagnosed with juvenile rheumatoid arthritis there. They promised me they were as sure as they could possibly be about my diagnosis, then retracted it a few weeks later. When I was diagnosed, I got all sorts of fun things. They gave me a whole backpack, which my family now refers to as the "arthritis backpack", and a pen that looks like a syringe. I got tons of pamphlets and amusing trinkets. It is sort of to make you feel better, I guess, after you've been diagnosed with a life-altering and incurable disease. While no material possessions can stop the ache of being chronically ill, I did appreciate the fun things. I have a feeling this appointment will not involve any fun things.
     I've got to stop thinking about it, or I will go crazy. Or maybe I already am. Not even a swingset could cure this kind of panic, and that is saying a lot. 
      I like to listen to music while I'm in the shower (and sing along, that is a must) so I turn my phone on shuffle. Then I put it in this giant can I have (don't ask, it's very odd) as a makeshift speaker and hop in the shower and jam out. Yesterday morning, the first song that came on the shuffle was "Unwell" by Matchbox 20. The lyrics are, "I'm not crazy I'm just a little unwell / I know right now you can't tell / but stay awhile and maybe then you'll see / a different side of me." My plan is the break into this song during the appointment if it is suggested that everything is in my head, as it often is with chronically ill patients. I'm totally kidding.
      As far as I can remember, the waiting room at the hospital I'm going to is pretty nice, with high-tech little play computers and colors and it is big and open. I'm pretty sure there are more glass walls than opaque walls, which is always nice. I love to be able to see outside. It is a perfect reminder that my world is much, much more than hospitals.
      I really don't feel the need to make this post any longer, so I'm just going to end it here.  I have about three hours and fifteen minutes until my appointment. 3:40 is coming way too fast.

Love,
Rachel

Thursday, June 6, 2013

Hoping For a Miracle

     I have got to get my life together.
     I've been off methotrexate for a few weeks now, and I would just like to say how nice it is to not always feel sick. I ate dinner a few nights ago - a Sunday night, mind you - and didn't feel like I was going to throw up. If that's not a miracle, I don't know what is. I even had cake, people. CAKE. 
     Obviously there are tradeoffs with cutting your medication like that. For example, I cannot lean my head on my left hand without excrutiating pain in my wrists. My joints are all stiff, and it is surprisingly tough to type. My right knee is extremely painful. But can I just say that I feel great overall? I don't feel like I constantly have the flu. It is so liberating.
      My last day of school was Monday, and I have been so happy these last three days. Everyone was talking about how upset they are that freshman year is over, but I do not have a single ounce of sorrow in my body. It is all pure joy. I like learning, I really do, but I am ready for summer. And honestly, I think I learn a lot on my own time. I have a whole plan of books I'm going to read and things I'm going to do. As Mark Twain famously said, "I have never let my schooling interfere with my education."
     But these past few days, my focus has been pure relaxation. I've been waking up late and sleeping much better than I had been. I've been going to the pool with a close friend of mine. It is so much fun to feel like a normal teenager. I haven't had very many appointments (though that changes starting next week) and besides my right knee and wrists, I feel well enough to move around a lot. Sometimes my friend and I just lay on the pool chairs, intent on getting a summer tan, and talk about the oddest things. It is lovely. I love the pool, I love not going to school, and I love the summer heat.
     Last night, I went to a "Handbell Polishing Party". Basically, my handbell group is taking a break over the summer, as we always do, so we polished the bells to make sure they stay nice and clean. We finished about fifteen minutes early, and I offered to take our trash out to the dumpster (the bell polish stinks). The dumpster at my church is temptingly close to the swingset. Naturally, I could not resist venturing over to the playground. It was quiet and no one else was there.
      I. LOVE. SWINGS.
      It is a dream of mine, a radical, never-going-to-happen dream, that everyone will one day have a swingset and a guitar. I often think about ways to incorporate music and swingsets into mission work. If you think of anything, let me know. I'm interested.
      Seriously, I was in heaven for about ten minutes before my dad came to pick me up. It was wonderfully quiet. The only sound was the chirping of the birds in the trees. The temperature was probably in the mid-70s, which is perfect. It was the most peaceful I've felt in a really long time. Honestly, I only find true peace like that when I'm not with other people.
      These moments of peace are nice of course, but they don't last. On Monday, June 10th, I have my first appointment with a potential new pediatric rheumatologist. Things are at a standstill with my current rheumatologist, and though he has gotten me far in my treatment, I think he has helped me as much as he can. I'm excited for the appointment Monday, but I'm also terrified. I try not to be too hopeful. If I go in expecting too much, I will leave disappointed. I am praying for a miracle, as outrageous as it seems. I'm praying that I'll go into the appointment and she'll be able to pinpoint the exact problem, and give me an alternative to methotrexate, and be willing to offer new suggestions and try new treatments. But most importantly, I am hoping that she will see the person in me. I am hoping that she won't see me as a case that belongs in a medical textbook, but as someone who breathes and cries and screams and laughs. I am hoping that she will understand how much pain I am in and how much I would like to be free. I feel trapped in my arthritis. I long for freedom, but it is like I am stuck behind jail bars.
      I am not expecting a miracle, but I am hoping for one. I am hoping that this will be a breakthrough.
      It is actually really hard to write about this appointment, simply because I am so nervous. There are so, so many things that could go wrong. Of course, I'm not supposed to worry or be anxious about these things, but how can I not? How can I put it all aside? There is no assurance that everything will go well.
      Underneath all the thick layers of scars I have from bad experiences with doctors, I still cannot help myself from wanting to view them as a very young child does. I want to believe I will go to the doctor and s/he will make me feel better. Unfortunately, that is not how the real world works. I hate that every day. I'm frightened beyond belief for this appointment. I could really use some prayers.

Love,
Rachel

Saturday, May 25, 2013

Alternatives

     Arthritis is really tough. I am sure that I've made that clear through every single post on this blog. When arthritis is tough, we have to be tough in response, or else we will simply drown in the misery of it all. I think one way to be strong is to change our minds. The way we think about things is vital to our overall well-being. It isn't a cure for arthritis; it is not even close. But it does count for something.
      That being said, I would like to use this post to give alternatives to things I often hear people with arthritis say (and things I've said myself). I hope this post helps you to reconsider the way you think about things.

     "Why me?"
     I have talked before on this blog (click here for the link to the post) about this question. A lot of people with chronic illnesses claim to have asked God this question before. I have not. I strongly believe that the better alternative is: "Why not me?" I mean, look at the world a little. There are people much, much more worthy of healthy bodies than me that are sick. I am nothing special. I have yet to find a single reason why I would be any more deserving of health than anyone else. However, I have deeply contemplated why it is that God doesn't heal everyone who cries out to Him for mercy. I will be the first to admit that I have no idea about a lot of those deeper questions.

     "I don't need help."
      We do need help. We all need help. We may not all need physical help. But if you have rheumatoid arthritis, you are going to need help, and when someone offers to assist you, "I don't need help," is never the right response (though I believe it is the response I give most often). I cannot even tell you how many times I've said, "I don't need help," when I actually do. I want to provide two alternatives to this statement, because there are two different situations this statement goes along with. If you actually do not need help, choose a more appreciative and kind form of "I don't need help." Just say something along the lines of, "I'm doing alright on my own right now, but thank you." Or, if you really do need assistance, something as simple as "yes" will do the trick.

      "Physical struggles are much harder than any other struggles people go through."
       I hate this because you really don't know. Unless you've experienced every other non-physical struggle in the world, then you have no right to say this. So the alternative I would choose is: "I find my physical struggles to be more challenging than other struggles I have." No one can argue with that.

     "Optimism is the key."
     I am about to say something that will go against almost every chronic illness blog out there. I do not believe in optimism. I used to. I used to think it was a good idea, and seeing the bright side will be the key to happiness. But you know what? It's really not. I am a realist. Optimism has left me with scars, scars from expectations higher than reality could meet. I think being honest with yourself and coming to terms with things you don't necessarily want to face is a much better strategy. For example, I had to recognize and admit to myself the fact that I am frequently jealous of my peers, especially at school and in my youth group, who are more physically abled than me. That was something I could not begin to improve on until I was able to recognize it, to say, "God, this is not good at all." So my alternative for "Optimism is the key," would have to be "I'm just going to be real."

     "I can't do anything until my arthritis gets better."
     Time for a harsh reality. My arthritis may never get better. It may very well greatly improve in the next few years, months, or even days. There is a good chance that I will go into remission, at least at some point. But I may always be in pain. It may get worse with time. A better alternative for this statement is: "I will do the best I can." Whether my arthritis improves or worsens does not change that God has a plan for me. God is bigger than arthritis and pain and fears. Nothing in the plan He has for me can be altered by the presence or absence of arthritis. 

Love,
Rachel

Monday, May 13, 2013

Music Therapy II

     If you recall, I wrote a whole post back in late July entitled "Music Therapy". In it, I talked about some of my favorite songs to listen to when my arthritis is flaring. I'd like to do that again in a part two, because there are a lot of songs that I would like to add and suggest. My last Music Therapy post received a lot of positive feedback. I find a great amount of comfort and peace through music, and it has become evident to me that a lot of other chronic illness patients do as well. To me, the most comforting music is Christian music.  In the post from July, I organized the songs by pace, with two categories: "slow" and "upbeat". However, I find it challenging to discern which of those two categories songs fit into, so I've decided to organize them instead by whether or not they are Christian songs.

Christian:

  • "How Great Is Our God" by Chris Tomlin
  • "Worn" by Tenth Avenue North
  • "Show Me What I'm Looking For" by Carolina Liar*
  • "By Your Side" by Tenth Avenue North 
  • "Whom Shall I Fear (God of Angel Armies)" by Chris Tomlin
  • "Where I Belong" by Building 429
  • "The Old Rugged Cross" by Chris Tomlin

Others:

  • "Cry" by Jason Walker
  • "Dream" by Priscilla Ahn
  • "Down" by Jason Walker
  • "Open Season" by High Highs
  • "Wavin' Flag" by K'naan
  • "Far Away" by Ingrid Michaelson
  • "Tied Together With A Smile" by Taylor Swift
  • "Fix You" by Coldplay 

     I hope you enjoy these and find them helpful in times of extreme pain and agony. Please feel free to email or comment with any suggestions!

*There are debates as to whether or not this song is religious. I think it is, and I often use the chorus as a prayer.

Love,
Rachel

Friday, May 3, 2013

Coping (Whatever That Means)

      If this knee doesn't kill me it will be a true shocker.
      Seriously, SO much pain. I've been lucky the past few days in that I've been able to move around pretty well and act normal, but it all sweeps in at once sometimes. That's when I am grateful for Henry (my trusty heating pad) and ibuprofen.
      Something people often ask me is how I cope with JRA. I have very little idea how to answer this question. How do I cope with JRA? How do I live sick in a healthy world? Well, I just do. I mean that with full honesty and sincerity. There is no sarcasm in this. I just do it because I have to. God didn't tell me any special secret for dealing with all of this. I just am.
      Arthritis is unavoidable in my life. It's there. And because it's there, I do talk about it. It is a big part of my life. Sometimes I like to joke about it and sometimes I cry about it. I just deal with the blows as they come in the same way that anyone else would. I'm nothing special in coping with this. I don't do anything new and innovative. I'm not harboring some brilliant secret in the crevices of my mind. I'm just a typical girl dealing with a disease that I hate a little more every day.
       However, I would like to share with you today three Bible verses/passages that I often read and think about in regard to my arthritis. I think reading the Bible could be considered a way of coping for me. Frankly, I'm not 100% sure what I think of as coping and what I think of as living. I'm still working on making that distinction.

       "The Lord will fight for you; you need only to be still." Exodus 14:14
       This is one of my favorite verses. You know, we rheumatoid arthritis patients often find ourselves in situations where we literally cannot move. Of course, I know that I'm guilty of trying too hard and overdoing it. My knees will be killing me and I'll still be trying to keep up with everyone on the stairs. I don't tend to have the mindset that allows me to think that being "still" is okay. But in those situations when I really just can't function, it's alright to be still, because God is still fighting for me. When I am weak, He is strong. Obviously this verse isn't commending laziness, but when I have to take a break from my ongoing battle against arthritis, God is right there, waiting and willing to step in for me.

       "A cheerful heart is good medicine, but a crushed spirit dries up the bones." Proverbs 17:22
       Honestly, I added this one for humor. I laughed the first time I read it. When someone has arthritis, they have too much fluid in their joints. So drying up the bones would actually be very nice and pain-relieving. Maybe if I had more of a crushed spirit then my joints would not feel the need to constantly ache. Totally kidding. Again, all humor.

       "How long, Lord? Will you forget me forever?
            How long will you hide your face from me?
        How long must I wrestle with my thoughts
            and day after day have sorrow in my heart?
            How long will my enemy triumph over me?

        Look on me and answer, Lord my God.
            Give light to my eyes, or I will sleep in death,
        and my enemy will say, "I have overcome him,"
            and my foes will rejoice when I fall.

        But I trust in your unfailing love;
            my heart rejoices in your salvation.
        I will sing the Lord's praise,
            for he has been good to me." Psalm 13

        This is by far my favorite Bible passage of all time. It's an entire chapter, but it's lovely. Psalms is my favorite book of the Bible by a landslide. Besides the beautiful and poetic nature of psalms, they are so brutally honest. Psalms are just you and God. The main focus of any given psalm is not the people writing it. It is not their story and doesn't make you think, "Gee, I wish I was that guy, he was really cool." God is the only focus of the whole thing, and it is very direct. There is not much inference making to be done. The psalmist is always very clear. With the exception of Jesus, people we read about in the Bible aren't perfect. Psalms let you see these imperfections. They show us that they struggled too, and they prayed too, and they felt hopeless too.
        That being said, I would challenge you to find anything more beautiful than Psalm 13. Psalm 13 is how I cope some days. I don't really know what coping means, because how can one ever accept and adjust to something so tragic? I don't think I should have to cope. But I know I do it sometimes, because I am human. I need something to cling to. That "something" happens to be Psalm 13. And when clinging to something like Psalm 13, I'm clinging straight to God.

Love,
Rachel

Monday, April 15, 2013

Prioritizing

      I would happily accept a little more control over my life. Actually, a LOT more control. This post is a suggested post from a friend who would rather remained unnamed.
      Dealing with autoimmune arthritis takes a whole lot of patience. I don't have a large or small amount of patience in my opinion; I would consider myself average. Of course, I strive to be patient, but I just think I'm pretty typical when it comes to that trait. I find not being able to participate in activities to be extremely frustrating. Luckily, people are fairly understanding, especially my teachers. I've heard many horror stories about teachers who are cruel and ignorant to other kids with arthritis, but I'm fortunate enough to have never had a major problem with any of my teachers, though some are quite aggravating. 
      Having autoimmune arthritis means that I have to be conscious of how much I am doing. I cannot afford to overdo it (which I constantly do) or I will feel completely exhausted and defeated later. I've gotten better at this over time, but I generally want to do what seems fun to me. I think this is perfectly normal, because what human doesn't, but I have to remember that what is fun for fifteen minutes has the potential to throw me into a flare lasting many days. 
      A lot of times I go to things and push myself to try new things because I genuinely think I can do them. I'll show up somewhere (take school, for example) feeling relatively fine. The pain is not unmanageable and I still feel able to accomplish what needs to be accomplished. However, I wear out very quickly and I'm stupid enough not to anticipate this. I often start out feeling half-okay and then go downhill. I mean, I've fallen asleep several times in the cafeteria. It's a problem. 
      For this reason, there are few things that are more helpful than a schedule. When I have a schedule (or even just a general outline) of what is going to be happening at an event or in class, it takes about a thousand pounds of weight off of my chest. If were are doing major activities, I prioritize a certain one, like activity 3 for example, and then I know to take it easy on activities 1 and 2. I can space out my energy levels to make sure that I get to do everything I want to do. I can also know ahead of time whether or not and when I will need to sit out. That said, it is important to keep in mind that autoimmune arthritis has some patterns but is also very unpredictable. I may feel better than I expect or worse in a single second. Even with proper spacing and taking it easy, my arthritis can flare. Sometimes I do more than I thought I would be able to and end up feeling not too shabby. 
      People don't tend to realize that juvenile arthritis takes a toll on my whole body. Not only do my joints hurt, but my stomach aches from medications and I'm severely fatigued (speaking of that...I promised myself I would take a nap today....and I didn't...). It is really hard for me to do a lot of "normal" things, and that is beyond frustrating.
      Prioritizing has become astoundingly important as my disease progresses. Prioritizing my physical activities has taught me a lot about prioritizing my life. At the top of everything has to be God, and then my family and my friends. Grades are important, but they aren't everything. I personally think adults put too much stress on school. School is not the world. In fact, it's a very small portion of it. Everything can wait if someone you love needs you. Everything. I think that's really easy to forget, but worth remembering. 
      
       Now, I'd like to share with you one of the best pictures I've ever taken. This is one of the bookshelves in my house. No books were rearranged in the production of this photograph. 



       Just take a moment and let that sink it. The "Raising a Child With Arthritis" book is in between four books about raising dogs. I think I laughed for a good ten minutes straight after observing this. 

Love,
Rachel

Monday, April 1, 2013

Forgetting the Words

     "It's like forgetting the words to your favorite song, 
      You can't believe it, you were always singing along.
      It was so easy, and the words so sweet, 
      You can't remember, you try to feel the beat."

      I just found Regina Spektor's song "Eet" a few weeks ago, but I can confidently say that it is one of the best songs I have ever heard in my life. It isn't thought to be a particularly sad or depressing song, but I find it tragic. To me, it's one of the saddest songs I've ever heard. I'm not even going to try to lie; I teared up the first time I heard it. The lyrics encompass so many different things. 
      Since I am basing this blog post off of the song, it would probably be beneficial for you to listen to it first. If you don't listen all the way through, then shame on you, because it is absolutely beautiful. 

      
    This song, at least to me, is about change. Something that changes so drastically that you can barely remember how it felt before. I was different before all of this set in and flipped my life around. It's like when I try to remember how it felt to run around freely with my friends, or play games in the gym at school. For a long time, that was my "favorite song". No matter what happened during the day at school, when my friends and I had our short recess break in middle school we ran a mile. Consistency is what gives us our favorite song. I was so used to singing it, so used to it that I failed to realize how much I loved it. 
     However, when much of my physical ability was torn away from me it became harder and harder to sing the words. And whenever someone else sings the song, in this case runs around and participates, I feel horribly alone and left out because that used to be my favorite song, too. Now I've forgotten the words. 
      I don't remember exactly how it felt to not be in constant pain. I lay awake many, many nights trying to "feel the beat" because I just can't believe that I can't quite remember. Of course, one of the biggest questions in my life is whether or not I will ever be able to remember the lyrics. Will I ever be able to run and jump and dash up the stairs again? Or is that song forever lost? Do I need to pick a new favorite song? I sure don't want to. I don't want to let go of the old one. 
      I don't want to let go. 
      I wish I could sit here and write that I have finally achieved remission. But I haven't. Right now, I'm not on an uphill track with my arthritis. So far, none of the chemicals they've forced into my body have helped me remember more than a few lyrics. However, I am hopeful that things are going to get better. They either get better or worse or stay the same, and I don't see any reason why they shouldn't just get better.
       Every time something big happens in our lives, we think back to our "favorite song", or how things were before. No one warned me that I would be forgetting the lyrics. No one gave me a heads up. Above all, "Eet" reminds me that most things in my life will go from being a reality to a memory. The experiences I have, the people I know, even things like my health that I didn't expect to go so quickly. It's all here one day and the next only a memory. 

Love,
Rachel

Sunday, March 17, 2013

Being a Better Friend

      Oh, how I love receiving post requests! It makes me so happy to write these, because I know that they will be useful to at least the person who asked!
       The question was this: "How can I be a better friend to a person dealing with a chronic illness?" I am SO glad you asked this question (not using your name for your privacy). I am more than happy to answer it. I've touched on the subject a bit before but here goes an intense and heartfelt post. 
       Now, by the wording, we are talking about someone who is already your friend. So you already know them, which is quite helpful. If you knew them before their diagnosis, then you are beyond lucky. I would even say that you don't fully know someone unless you knew them before their symptoms began. Disease changes people. However, if you met them after chronic illness was a part of their life, then you still have hope, I promise. 
        The number one most important thing to do is to listen. Listening does not mean just having them text you their issues. Listening means setting aside time in which you will have no distractions. This is best done face-to-face or over the phone (at the least). Listening also means focusing and caring. Actually, some of the most meaningful moments to me are when people call me to ask how I'm doing. People do not do that very often because let's face it, no one wants to listen to someone talk about something so depressing. But that is what makes it amazing. When someone calls you, it basically says "I am okay with taking the time out of my day to talk to you about something no one but you wants to talk about without any delayed response or needing to look up what to respond with like some robot". Listening is absolutely the best thing you can do to be a better friend. 
        A lot of the time, people end up giving you advice, which is very nice. At least for me, I really appreciate and value advice (from the right people) because it gives me another perspective on everything that is happening. But you have to be careful and mindful when giving advice to people. The major mistake people make is turning into a pediatric rheumatologist all of the sudden. You just needed someone to listen, and you end up gaining another "doctor". I understand if you agree with my doctor and not me. Everyone is entitled to their opinion. But with a chronic illness, it is easy to feel like everyone is against you. In some ways, everyone is. People dealing with a chronic illness just need someone to be on THEIR side. They already have enough people working against them, and they certainly don't need you stepping in and adding to the number. It is fine to state your opinion, but do not push it. While I definitely don't want anyone to lie and say that they agree with me if they don't, I don't want to hear that the person I'm talking to about my frustrations with doctors agrees with my doctor. It makes my point seem invalid and worthless. The best thing to do if you disagree with your friend is to just say, "I can see where you're coming from". However, so many people don't. 
        I feel like I just over-covered listening. But maybe listening is the kind of thing that deserves to be over-covered. 
        To be a better friend to someone with a chronic illness, you need to understand that you don't understand. No matter how many times someone talks to you and attempts to introduce you to their world, you are not going to get it. You will probably wonder how it is possible that a person could be so sad and so frustrated at the same things time and time again. But no matter how much, how well, or how thoroughly someone explains chronic pain and chronic illness to you, you will not be able to comprehend it. You can go home after talking to someone and concentrate on something else. It doesn't stick with you. But it sticks with us. We can't just wake up and not have to worry about it anymore. It does not leave when the tears are (temporarily) over. It lingers. Painfully. 
       When offering physical help or assistance to someone with a chronic illness, the best thing to do is to demand that you help. I know that sounds stupid, but it is so much better than asking. I've talked with my online support group about this too, and they agree. Saying, "Do you need help opening your water bottle?" is much worse than "I'm helping you open this water bottle." The latter makes it seem like you actually want to help. The former makes it seem like you feel obligated to ask. 
        Do not assume that a chronically sick person is just incapable of getting over their disease and moving on with their life. Chronic illnesses are always changing. One day it's the stress of going through a school and being yelled at for walking too slow, the next it's a condescending physical therapist, and then having to deal with the fact that you feel lonely. It is not the same thing all the time. Most of it is unspoken, too. There is no way I could ever tell anyone everything that is bothering me related to my arthritis in a given week, so I just pick and choose. You need to realize that the struggles of chronic illnesses are new every morning. Saying, "Pick yourself up and carry on," or something similar is offensive and irrelevant. 
        Allow your friend to be upset and be angry, because the worst thing you can do is tell someone to "calm down". Last time I checked, I DO NOT HAVE TO CALM DOWN IF I DO NOT WANT TO. That's that. 
       I would agree that chronic illness can cause a person to be more upset and stressed about the littlest things. You know when you bang your toe against something and it hurts really, REALLY badly and if anyone talks to you in the next few seconds you feel like throwing something at them or bursting into tears or just screaming? Or maybe you just feel like you hate everything? Well, think about feeling those seconds constantly. On top of that, you're tired, all the time, because you cannot sleep for the life of you. It's not an easy thing to put on a smile and not become upset. That's just the nature of pain. This is a very arguable statement, but I'm sticking with it.
       I hope this post is helpful and accurate in a broad sense and not just to me. I am more than willing to further discuss this post and its content with anyone, including my own personal friends if needed. In fact, I would be HAPPY to, because this post outlines everything that I find completely essential in being a good friend to someone sick, someone like me. Please, please, please do not give up on your friends when they are dealing with a chronic illness. Sticking around and willingly immersing yourself in the World Of Pain can make all the difference to a hurting person, especially a hurting kid. 

Love,
Rachel

Tuesday, March 12, 2013

Two Year Blogiversary

*Pre-written a few days ago, but today is my actual blogiversary.

     I swore I wouldn't miss this blogiversary...and I didn't! As of today, March 12th, 2013, this blog has been up-and-running for two whole years. That is crazy to think about, because I remember picking the name and web address and everything! (Quick Fact: This blog was originally titled "Living with JIA" and had a different web address but I changed it almost immediately after creating it because I liked "The Kid With Arthritis" much better.)
     I would like to use this post to say thank you to everyone who reads this blog. It really means a lot to me that you take a couple of minutes (or more than a couple...my posts tend to be really long haha) to hear what I have to say. Of all the things you could choose to read, blogs and articles that contain more wisdom than mine ever will, you still read about the life and challenges of a 13-year-old from a pretty normal town with nothing spectacular about her dealing with a pretty tough disease.
     My blog started off fairly small, with not too much activity, but has quickly blown up, especially in the past year. I've gotten more page views than I ever thought I would and so many emails that I can barely keep up! I am so grateful for all of the relationships this blog has allowed me to form. I am thankful for your emails and love and prayers and constant support.
      I am thankful for the support and publicity provided to me by other bloggers as well as the Arthritis Foundation. This blog has made managing arthritis much, much easier and has allowed me to see the best of chronic illness as well as the worst.
      It is so honoring when I see that someone has shared my blog with others. I don't think that you all will ever know how much that means to me. I hope that I am using this blog in the best and most effective way possible. As always, I am still open to suggestions for posts, outline information, tips on blogging, and etc. I've learned a lot about the blogosphere but I still have a long way to go. I also LOVE getting your emails! Keep them coming...it can take me quite a few days to respond, especially during a flare, but I promise to always get around to it! Click here to send me an email.
      Two years and 83 posts later from the day I clicked "publish" on my first blog entry, I'm still writing away. Thank you for everything!!!

Love,
Rachel

Tuesday, March 5, 2013

Superhero

     I have honestly decided that I am going to be a superhero. This could be the stupidest thing that I've ever done, but hey, why not at least give it a try. I am refusing to give up on the small things and I will not let go of my detail-oriented tendencies. I am going to be me without arthritis, except with arthritis. It sounds stupid, but it needs to happen. I'm tired of being me with arthritis.
      I will manage my schedule like a pro. I will not fatigue, even pumped full of methotrexate on Saturday nights and Sundays. I am going to be a superhero. I will not live like a parasite, accepting the help of others because my body is not good enough on my own.
       My new water therapist and her student were not so impressed with my knees at my last appointment on Friday. I really underestimated how hard it was going to be to walk back in forth in the water, and my knee had been killing me all day. Physical therapy is a process that makes me feel completely picked over. "Do you always turn your feet inwards when you walk?" the student asked me.
       "I don't know," I answered honestly, "My last physical therapist mentioned that too."
       "Try to keep your hips and back straight, you're compensating for your right knee."
       "I'm trying," I pleaded.
       "Is that knee really hurting you today?" Bingo!!!!!! We finally had some understanding. I don't know for the life of me why I didn't tell her that it was hurting in the first place. I did that with my last physical therapist too, where I would just barely talk and answer all of her questions with 'yes' or 'no'. She would keep on pushing me and challenging me because she thought I wasn't experiencing too much pain and then I would just break and end up in too much pain and tears to continue on. Anyway, the student in the pool stretched my knee, and I was told that my muscles are tight for about the 800th time in my life. She also said that my knee felt a little swollen. Luckily, she changed the therapy for the day so that it wouldn't add extra pressure or pain to my knee. I had another physical therapy appointment Monday and a doctor's appointment today which I won't even go into.
         At my water therapy appointment, I also discovered that the PT student watches The Bachelor. I cannot even tell you how much I love and appreciate that quality show as well as anyone who watches it. I've gotten to the point where I'll ask my teachers if they watch The Bachelor. It is becoming a problem.
         One of the things I don't like about using accommodations is that I feel like I am just covering up the problem. Nothing is being fixed and my joints aren't being helped. I am only compensating for everything I can't do. But I don't want the world to change. I want everything to stay the same and me to change. Accepting accommodations, and really help in general, makes me feel like I am giving up.
         I hate stairs with a passion. I give thanks every day that there is an elevator in my school and I possess the key. Stairs are the WORST. I hate them because they hurt, but other than that I actually like taking the stairs. If my arthritis isn't flaring too much at school I will gladly go up the stairs instead (though that doesn't happen often). Per usual, my whiny self hates being different. This ties right in with me wanting my joints to change and not the world. I don't want other people to work harder or take precious time out of their days. I feel like my joints should just get better and be independent. And I don't know how not to feel that, if it is indeed a somewhat destructive feeling as many say it is. Am I not supposed to want my joints to get better? I always will.
         I've seen a lot of doctors and therapist lately, as you've probably already realized from this post. One of the things I hate about doctors is their complete inability to put two and two together. Say a disease has symptoms that are A, B, C, and D. Now say a patient has A, B, and D. Just because we they are missing C doesn't mean that they cannot have the disease, especially with autoimmune diseases. Most of autoimmune diseases is still a mystery. Therefore we cannot rule out something so unknown by little tests that don't give us concrete results.
         Actually, I hate it when people in general are unable to put two and two together. When you are trying to find a reason for something, you have to figure out what everything ties back to. Doesn't there have to be a reason for everything? I don't really believe in weird chances and coincidences and things like that. So if there has to be a reason, you have to find a common factor. And that is NOT the hardest thing in the world.
          This week, I am especially thankful for having a teacher who understands autoimmune disease. However, I would rather this person not understand at all. I would much rather have an ignorant, rude teacher than a teacher who has to deal with an autoimmune disease. I just don't want anyone to have to feel pain.
           I just want [us] to be okay, be okay, be okay. I just want [us] to be okay today.

Love,
Rachel

Saturday, February 16, 2013

Meant For This

     I want to be in medical school so badly.
     Lately I've just been burning with the want to grow up. I know that that is a stupid want, and I've even talked about it a little before in Growing Down. But for the past week or so, I haven't been able to get that desire out of my head. I'm sick of being a kid. I'm really hurting as far as my arthritis goes, and if I'm going to feel that pain I need to be relating to other sick kids. I want to be a doctor because I want to relate AND treat at the same time. Pediatric rheumatology makes arthritis seem like a blessing. If I have to deal with arthritis, it sucks. If I have to deal with arthritis but even just one patient feels better as a result of ways I've helped them as a doctor, then my arthritis becomes "worth it".
     I want to be DOING something. I want to be a part of something big. I want to be in a country I never dreamed of going to as a medical missionary. I want all of the knowledge of medical school. High school has really made me realize that I absolutely love biology and I need to take my life in that direction. As a medical missionary and a pediatric rheumatologist, I can combine biology, ministry, and my borderline-insane want to help as many arthritic kids and teens as possible. I know I can be a good doctor because being a doctor is what I am supposed to do, what I am called to do. I am meant for this.
      About a month ago, I was thinking about the possibility of going into business instead of medicine. It all looked pretty good, getting an MBA and being a manager of something somewhere. You don't have to be in school nearly as long as you do for medical school. At the end of the day though, I just can't bring myself to do anything other than medicine. Of course, I am not so ignorant that I refuse to recognize that my opinions and plans could change at any time. I just think of all of the possibilities and all of the ways I can turn my struggles into someone else's joy and it is a wonderful thought.
      Enough of that.
      I had my first water therapy appointment in a while yesterday. It was P-A-I-N-F-U-L. I am especially feeling it today. My knees are so uncooperative. My elbows aren't cutting me a break, either. On the positive side, my new physical therapist is very nice. We discussed Russian history, biology (especially genetics), and The Bachelor (hometown dates are Monday!). If you know me, you know how much I love all three of those things. In fact, they're probably three of my favorite things in this world. The first appointment is always a little awkward, but she's very sociable.
      I finally caved and took my methotrexate injection. My mother is a pro at giving shots, and I didn't even feel the needle. On top of it not being painful, I just didn't feel it at all. Not even in a neutral way. I didn't feel the medication going in, either. It was a pleasant surprise.
      I actually joked with my mother that I was going to give up methotrexate for Lent. It would be a quality sacrifice, but obviously it is a stupid idea and I am going a little crazy. I think God is okay with me having my methotrexate. It is probably better than me needing to have knee replacement surgery in twenty years because I let inflammation creep back in.
      Sometimes with juvenile rheumatoid arthritis I wonder if I should just stop taking every medication I'm on (down to ibuprofen and folic acid) and let my body breathe for once and not be so constrained by the clashing of chemicals. In those situations, I have to truly accept that my body is pretty screwed up. It strangles itself on its own. The medications, as horrific as they are, let the air in my lungs. They are not responsible for all of this; my stupid immune system is. The medication is the good guy, and my body is the bad guy. At least we know my immune system isn't lazy. There's a bright side to everything.

Love,
Rachel

Monday, February 11, 2013

Get Well Soon

     Today was one of those days that makes me wish I could just take a sleeping pill and wake up in a week. First of all, I totally deserve this flare. It is all my fault and I take complete responsibility for it. I haven't had my methotrexate since Christmas. That's like 6-7 weeks, people. But in the last 6-7 weeks, I have not once felt nauseous. My body has not felt absolutely disgusting and icky and I have not had to watch yellow liquid being injected into my poor, undeserving arm. In some ways, I've loved this past month-and-a-half. The joints, however, have not. As you may have guessed, my joints, being as outspoken as they are, have been rebelling.
     The second reason that I brought on this flare myself is that I overdid the weekend. I went shopping on Saturday, which was absolutely wonderful. I'm a tad bit in love with summery dresses and seeing all of the new ones just warmed my heart, haha (no worries, I only walked away with one). I was able to do all of my shopping without the use of my wheelchair (cue the applause). I went to all of my normal activities on Sunday plus an extra one.
     It was utterly exhausting. I don't know how it is possible for a thirteen year old to be so tired at the simplest things. Anyway, I pushed myself. I went to school this morning but had to text my dad to pick me up after only one class, because my knees were just screaming at me. Luckily, it was the heating blanket (when all the joints are hurting, you can't settle for a heating pad; you have to whip out the whole blanket) and my best dog-friend Bella to the rescue. Today has made me realize how much I truly despise being in pain.
    "Get well soon because your chronic debilitating illness is boring and becoming a major inconvenience for me."
      I saw this quote through an RA support groups I belong to, and I think I must've kissed the computer screen. I've never felt any more connection to a quote IN MY LIFE. First of all, I love the way it is phrased. It's sarcastic, but I'm pretty sure that it is exactly what a bazillion different people are thinking (even subconsciously). One thing people with chronic illnesses always say is that it separates your real friends from your fake friends. It's cliché, but it is true. People are always there for you at the beginning. Friends come up to you and say, "I'll be here for you no matter what." That statement has turned into something completely meaningless to me. So many people say that and then you never see them again.
      People help you in the beginning because it makes them feel good about themselves. Now, I understand that helping another person does feel good. But I've long said that Christians should not help other people because it feels good. What if helping other people felt awful (as it sometimes does)? Newsflash: We're still called to help them. The point of this is, that feeling good wears off very quickly. That's when people pack their bags and run.
      People also don't understand that chronic illness is forever (or at least for a prolonged period of time) in most cases. The pain doesn't just go away. You can't get used to it. Especially the chronic fatigue and exhaustion. Fatigue is by far the most frustrating thing I've ever had to deal with. My joints sometimes feel well enough to do something, but I'm just way too tired. I expect myself to be able to "suck it up" and move on and hold my eyelids open, but sometimes I physically cannot. That makes me feel unproductive.
      When you first get sick, everyone calls and texts and emails you. Of course, this is all well-meaning. You are dealing with absolute shock. But then, not-so-gradually, those helping hands fade away. The world keeps turning, but you are in the same place you started in. Your situation did not change. I would argue that you can never really overcome it mentally or emotionally, either. It's more like a cycle. You try to pick yourself up, but your bags are too heavy. At some point, you can't keep pretending. Those are the times when you accidentally go off on someone or become grumpy.
       But more days than not, we just plaster on a smile that never feels quite right. We pick up the phone and even though we've had a terrible day we use our most chipper voice. There is no choice given to us. We HAVE to do this. But we are not alone in this. A lot of the conversations I have with other kids, teens, and adults dealing with chronic illnesses revolve around losing friendships and feeling like we're living a sort of "fake" life.
       I understand that chronic illness is an inconvenience. Of course it is. I get that. It's an inconvenience for me, too. At the end of the day, it is no fun for anyone involved. I think about the baggage metaphor (the one I briefly mentioned a couple paragraphs up) a lot. I wonder if letting other people help me is like baggage; I can pass it to someone else for a moment and feel a bit of relief. I also wonder if it is more like a candle, where I can spread it by letting others help me but at the end of the day it leaves us all hurting and inconvenienced. I sometimes wonder how many times people say they want you to feel better just because they're tired of helping you. I think that number is higher than anyone would want to admit. It's just sad. We are still people, illness or not, and we are trying our best. We're not perfect.
       So if you ARE going to tell someone that you're there for them, or that you hope they feel better (I would definitely refrain from using the phrase "get well soon" to someone who is chronically sick), do it knowing what you are getting yourself into.

Love,
Rachel

Thursday, February 7, 2013

Back to PT

      I have something to tell you that you're not going to believe.
     A physical therapist used the word "agreeable" to describe me. "Agreeable". A-G-R-E-E-A-B-L-E. "Agreeable." I know that you probably think I'm lying. But I swear I'm telling the truth. She said that I was agreeable.
     I would actually like to think that I'm at least somewhat agreeable. I don't pick arguments for the sake of picking them, and I'm never involved with drama and stuff like that. Never. But I never seem to be on the same page with my healthcare team. The day my pediatric rheumatologist calls me "agreeable" will be the day pigs fly. I actually just got a new physical therapist (my first appointment was yesterday), and I'm glad that I made at least a half-good impression. My physical therapist has a student with her, so I really managed to get two new physical therapists. When I got home, I realized that I've seen a LOT of physical therapists in the last two years. I've had 8, not including their students, which I can't count because there were too many. I'll be the first to admit that I liked some of them significantly better than others. None of them were bad or mean, but only Stacie became my best friend and made me look forward to appointments.
     I'm actually back doing pool therapy with my new therapist and her student. At the end of the day, physical therapy is just a pain (literally, it's pretty killer to the joints) and I don't have the time. But my new physical therapist is pretty nice, and she thinks I'm "agreeable", so I have everything going for me right now. Yesterday I had a "land" appointment with her, where she assesses me before we do the water therapy. I think that has to be the worst thing about doctors and other healthcare team members in general. Their job is to judge you and fix you. They judge you with their eyes and with their medical forms and with their needles. They all seem to scribble things down in a sloppy cursive that I am unable to read, so I cannot try and decipher what they're writing. They suck your blood out through hollow needles and then send you off for testing. You go from being "Rachel" to a serial number. At the end of a rheumatology appointment I am left feeling almost abused. The problem is that a lot of the times with illnesses as vague and undetectable as juvenile arthritis, a lot of the prodding ends up being worthless, because nothing changes.
     Anyway, the physical therapists ask a bunch of questions at these "land" appointments, like if I have seizures or asthma and if I can swim, but then they ask questions that revolve around personal goals. "What do you want to be able to do at the end of these sessions?"
     "I want to be able to run. I want to be able to use the stairs at school and give my elevator key back to the office. I want to donate my wheelchair. I want to be able to do ALL of the activities in my P.E. class. I want to be able to do everything my friends can do."
     "And what is that?" (She was asking me what my friends can do that I cannot.)
     "A lot of stuff."
     Luckily, she seemed pretty satisfied with that answer. I was not feeling like explaining. I also wasn't about to tell her that I'd like to not wake up with red joints and I'd like to not talk to my knees using phrases like "COULD YOU NOT" when they become intensely painful. Then she asked another question, a question that no physical therapist has ever asked me before. "Realistically, do you think you can get there?"
      "Yes."
      "And you know that this involves a lot of hard work on your part..."
      "I'm willing to do it."

Love,
Rachel

Saturday, February 2, 2013

Redeeming the Day

     Some days are bad.
     I think that as chronic illness patients and even just human beings we can all agree on that. Some days don't seem like they are ever going to end. Some nights make morning seem eight hundred million years away.
     I have a little trick to making days like this better. It doesn't completely turn the day around and it is not some miracle cure. It won't make you look back at the day with great joy, but it might pull you through the moment.
      On bad days especially, I try to do one thing that makes the day worth it. I was walking out of school on a kind-of-not-great day when I saw a butterfly that couldn't fly. Knowing that it was going to be trampled in a matter of seconds if I left it, I picked it up and moved it to a safer location. It doesn't seem like a big deal (and wasn't), but it made my day worth waking up to. Of course, I don't just magically find wounded butterflies on every not-perfect day. Sometimes it is just giving a compliment, or holding the door for someone. It is doing something to improve the world that may not have been done if you hadn't chosen to stop letting your illness control you and move on with your life.
     These little actions do not make the day good. At the end of the day, even the day when I lent a hand to that beautiful little butterfly, I go to bed without a smile on my face. But we don't have to smile every day, because we aren't robots. Not smiling all the time is what sets us apart. We live and we breathe and we cry and we smile and we dance and we fall.
     This isn't a long post and I don't feel the need to make it any longer to be perfectly honest. I've got a lot on my mind...

Love,
Rachel

Friday, January 18, 2013

Moving the Earth

      I don't know much.
      In the grand scheme of things, I'm not particularly smart. I don't have some broad range of knowledge that enables me to work out any life-problem in my head and I make the same mistakes twice. Nope, three times. Maybe more like a million.
      There are some things, however, that I DO know. One of those things is that I am most likely going to become a doctor. I want to reach the kids who are in places so low that they don't ever think they'll get out. I want to be the doctor who can take the child or teenager by the hand and say "I know how you feel" and mean it. I want to be the kind of doctor that patients boast about. I want to be the doctor who connects patients who have an interest in meeting others like themselves. I want to be the doctor who gives all of my teenage rheumatology patients my cell phone number so that they can text me or call me if they need me or if they're having a particularly hard day. I want to be the doctor who is also a friend and a confidant.
      If I'm going to be a doctor, I'm going to be a great doctor. I have a whole list sitting in my backpack of things I will do to achieve that goal. It's not even a goal as much as a requirement. I'm not going to be an average doctor. I'm just not. I'd rather just pick another profession.
      The concept of the chronic illness community used to really bother me. I was convinced that these bloggers, Facebook and Twitter pages, and advocates focused too much on their illness and not enough on the other parts of their life. If my timeline filled itself with posts about chronic disease, wouldn't it just make me think about my own problems and worries even more?
       I was wrong. When I was diagnosed I had so many questions. Instead of following helpful people on social media and reaching out to other people in the chronic illness community, I left myself wondering. That just made me think about my illness even more and worry about things even more. Luckily, it wasn't too long before I got myself connected and educated.
      My advice to anyone who is dealing with a chronic illness, specifically an autoimmune illness, is to reach out and allow yourself to be reached. You will meet people, whether at conferences or locally or online, who can help you. They have gone through your struggles and can answer your questions and give you advice. Then, you will meet people who you yourself can inspire and reach out to.
      There are lots of nice people all around you every day who are willing to support you and care for you. However, at least in my experience, no one can understand even a tenth of what another autoimmune buddy understands. If you tell a person without an autoimmune illness that you're in pain or that you're having a tough day, you get the whole "you annoy me so much" look or the "you poor thang" look. If you tell a person who lives with an autoimmune illness that you are in pain, you get a best friend to confide in.
      I think it's safe to say that the world itself is pretty darn advanced. We have computers, extravagant houses, complex government systems, etc. With the touch of a button your bread turns to toast. I can hit a key on a piano and, if I do it correctly, make a beautiful sound. So my question is this: why can't we figure out how to be healthy and get rid of disease? Honestly, it's ridiculous. I'm not saying that to be whiny or complain, but simply to put the issue into the light it deserves. There are so many sick people in the world. It's been a problem for all of time and will continue to be until drastic steps are taken.
     People who are chronically ill have higher rates of disability, depression, divorce, and suicide. Overall, they have a lower quality of life. According to the CDC, 7 out of 10 deaths in the USA can be blamed on chronic illness. What in the world are we doing? Why do we divert our attention from this problem just because it is ongoing and has no easy fix? That's why chronically ill people are depressed! Chronic diseases DON'T have an easy fix, and nothing is going to happen overnight, but we need more goals. We need more healthy people. We don't need more people who have to sit out when their best friends are playing games because they have joints that cannot be healed. We don't need athletes being forced to give up dreams because their hearts have abnormalities and will not be able to support them. We don't need children being left without parents and parents having their children ripped away from them.
     We need advocacy. Not because we are not strong, or because we are whiny. We need advocacy because disease is wrong, and things can be done. Steps can be taken.
      I don't want to discredit all that has already been done, either. Biologics are a recent advancement in the medical world, and I'm beyond grateful for being able to access Enbrel. Methotrexate is amazing, but I truly believe that we can find better alternatives. Without advanced medical testing I might not even have a diagnosis. Maybe I'm just a hopeless idealist with no sense of how big and complicated the world is, but maybe that's what we need. Maybe we need more people who are willing to just go for it.
      I refuse to be the chronic illness patient who sits in bed all day, doing nothing, being a hermit. I will share my story because I believe that the world benefits from the exchange of experience. I am not going to be the girl who sits back and watches the world move before my eyes. I'm going to go in and move it in the direction I want. I believe that if we put importance on the things that are truly crucial then we can rise to the top.
      I'm not angry with the world, or typing this out with flaming fingertips. I think the world is simply lovely. I'm just trying to add to the beauty.

Love,
Rachel

Tuesday, January 15, 2013

Hold Up

     It's no secret why we lose to arthritis most days. It's not some mystery that we've yet to figure out. Everything is right in front of us. It screams constantly, and yet we try to push it aside.
     At the end of the day, I am an average person trying to fight an extraordinary disease. That is why I fall. I'm not anything special, and that's nothing depressing. I'm just average, as most of us are. But arthritis? Arthritis is more than average. Arthritis has figured out how to use me against myself. It devotes all of its time and resources into bringing me down. I just cannot afford to spend all of my time and resources on arthritis. I have to try to keep some of my ordinary life as well. Arthritis is the one who needs to hold up.
     That is why it is hard for me when people say that I am stronger than arthritis. Arthritis has one single goal. Arthritis was given one job. It does that job well! I have a bazillion different jobs, so even if I'm as strong as arthritis, I am having a really tough time beating it. It's just not mathematically correct. So if you wonder how my arthritis gets ahead and takes the lead when I seem to be doing so well, that is how. I'm average and arthritis is extraordinary.
     I've been trying to prioritize breathing. It sounds stupid, but I just need to breathe some days. I have lots of other goals, but my top one is breathing. Sometimes when I'm in a lot of pain and everything feels like it is sitting on my shoulders I just decide to breathe. I'm learning to take care of myself, and not push myself too far.
      That's one of the hardest things: not pushing myself too far. I look at my peers playing fun games and doing physical activities and I decide to join in. It often is not unbearable painful at first, and I put the fun above the consequences. Then I regret it when my date with Henry (my heating pad) lasts longer than I planned. I love Henry, but I don't love him as much as I love being the person I was before arthritis.
       I'm also trying to schedule more dates with Henry. I've decided that I would probably feel a lot better if I would just rest BEFORE it gets to a breaking point. Tonight is the first night that I'm going back into setting my alarm an hour early to plug Henry in and then go back to sleep. I did it on and off last year and a couple times over winter break, and my first thought every time I got up to plug Henry in was "I hate arthritis." It was pretty miserable, but if I'm going to be in a flare I'm going to be in my best flare possible, and part of that includes not waking up with stiff joints.
       Here's to dates with Henry, more sleep, less pushing it, and more feeling better.


Love,
Rachel

Thursday, January 10, 2013

Suitcase Post

    This is going to be a suitcase post.
    If you ever get the chance to see me packing, you would understand what I mean by this. I would consider myself a fairly logical person in most situations. In packing, this does not apply at all. My logic is ridiculous. Actually, it's not even logic. Say I'm going to be gone for three days. I automatically assume that I will need three hairbrushes, scrunching gel, a flat iron, a curling iron, eight headbands, forty-four thousand hair clips, at least nine tops, two skirts, six pairs of pants, an entire jewelry box, seven pairs of shoes....you get the point. It's insane. I really need help.
     Anyway, I'm packing everything I possibly can in this post, which is why it is a tad long. I've been meaning to post since about a week ago, but I've been very sick, and that is no exaggeration. It started with pneumonia, got crazy, and now it's interstitial pneumonitis. It's a little weird to share something that specific on here, but I would REALLY like to know if any of you have ever had interstitial pneumonitis. Apparently it is associated with RA and also methotrexate, which is why my rheumatologist is now involved. Please, please, PLEASE send me an email if you have any experience with this. It would really help me out. I can't stress this enough - my email is thekidwitharthritis@gmail.com.
      My methotrexate has been temporarily stopped as a result of the pneumonitis. I am dying without that stuff. I actually had a great night a couple weeks ago, where I went to my activity and felt...wait for it...good. I was so happy. So, so, so happy. I felt like everyone else in my group. Obviously I still had pain, but I felt like I belonged. Now my knees and wrists are back, combining forces and sending pain waves through my body about once every two seconds. My little frienemy, methotrexate, has left me. I am feeling the effects.
      Now I just have to focus on getting completely better. Everyone wants me to hug them when I come back and see people again for the first time. It's always awkward, because I always refuse. But I would like to set something straight. I am not contagious. Interstitial pneumonitis is not contagious. I am, however, still coughing. I'm simply worried that I will cough on someone while I'm hugging them, and that is not appreciated by anyone.
      I have regular fatigue from my arthritis, which I've stated before. Lately, I've had a sort of "people fatigue". I just don't feel like dealing with everyone. I don't feel like telling people that I don't feel good, so I just say that I'm alright and move on. It's really terrible, and I need to get over it. I'm aware of that. That's where fatigue is hard; any kind of fatigue. It is easy to get stuck and hard to get out. Arthritis in general sucks you into this space-like cycle where everything turns into a blur.
     One of the biggest shocks when you are first diagnosed with arthritis is that the world doesn't stop. Arthritis adds more weight than you can carry, but you are still expected to do everything else. You're still expected to keep up with schoolwork, have friends, keep your same spirit and mood, go to all your activities...it's impossible. It's impossible to stay yourself and keep everything you "own" and have arthritis. Sometimes, you have to let go of things. That's super hard. If you don't keep up with your schoolwork you're "unmotivated". If you let go of your friends you're "less than compassionate and extremely uncaring". If you let go of your spirit you're "pessimistic". If you let go of your activities you're "prioritizing everything else".
      What we arthritis patients have to learn to do is pick and choose from each category. I keep up with my schoolwork, but I've set in place accommodations (that greatly hurt my heart most days) to help me out. I still have friends, but I can't remember the last time I've had anyone over. I am still a Christian teenage girl in my spirits and mood, but I have my downs. I still do some activities, but I've had to drop a lot and my attendance to them isn't perfect at all.
      I'd like to point out that I'm surviving. I should get some credit for that.
      Everything we do comes with a price. Taking a shower comes with a price. I wake up energized, but after standing in a shower for five or ten minutes I'm back to being utterly exhausted and I feel like I could go for another hour of sleep. Once I'm at school, I have to do teenage things, like socialize and communicate and stay alert. School wipes me out. Everything wipes me out. Even just answering simple questions and having to be socially acceptable is tiring. I can't fall asleep anywhere, like I can at home. I can't just sit when I'm in pain. That's why I like being at home. I can do whatever I want and no one is sitting around judging me.
        As messed up as this ole' thing is, I'd like to give a shout-out to my body. My body is tough. I might not be tough, but my body is. It works hard, even if it is misguided enough to attack itself. So to my body: Thank you for trying. I appreciate the effort.


Love,
Rachel