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

1 comment:

  1. you're so strong Rachel... I love you so much... you CAN do this...anything you need...and I'm here:)

    ReplyDelete

Feel free to comment or shoot me an email - thekidwitharthritis@gmail.com I'll try to get back to you either way!