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

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

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

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

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