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

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

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

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