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.


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.


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?"
      "And you know that this involves a lot of hard work on your part..."
      "I'm willing to do it."


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...