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