Tuesday, November 29, 2011

Sigh

   It is a day where you just sigh. What else is there to do?  Note to self: when you are mad at the person who wrote a stupid pamphlet about a certain medical condition, it is very satisfying to rip up the pamphlet and throw it into the geometry class garbage can.
   I think Adele deserves a movie. Not like a biography or documentary, more like a "Mamma Mia" thing, where the story line is based on all of ABBA's songs and they are all included to fit the current scene. It is actually quite hard to explain. Even so, I think it would be a great idea and I would very much appreciate bragging rights on this for the future, thank you very much. I just got completely off track. *Sigh*.
   I have just been so sluggish lately. I was very sick from my medication yesterday, and I had to stay home from school. I'm pretty sure I've already used up all of my sick days for the year. The shots hurttttttt! My mom has to give them to me, and as much as I hate to admit it, she's doing a pretty good job. I have figured out how to practically freeze my arm to the point where I don't feel the needle but just the medication going in. I freeze my arm so badly, though, that I am begin to ponder if the freezing hurts more than the needle would. However, I am not willing to take that chance!
   "Love" is my go-to signature thing. Some people say "sincerely", others "yours truly", and some "thanks", and though I do occasionally use the latter, I find that "love" is always appropriate. Maybe some people see it as ignorant, arrogant, and unprofessional, but I see it as kind and gentle. No matter who you are, Godly love exists for you, so it doesn't matter if I'm writing "love" to my teachers asking for make-up work or to my best friend. "Love" is universal.
   I really hope that there is another kid with arthritis out there who is reading my blog or who has found it. I really hope I make a difference.

Love,
Rachel

Wednesday, November 23, 2011

Letters

   So I have already told you about how crazy my family is in stores. I will proceed to tell you that at an apartment store the other day, we found a huge bin with packs of napkins in it. Each pack of napkins had a letter of the alphabet on it. We were digging through it trying to spell out our names when my dad practically shouts, "First one to find all of our initials wins!" (He meant the first initial of each family member.) Instantly, we became freaks, digging through the bin and clinging on to the important letters while looking around frantically to see who was winning. I don't remember who won, but I remember thinking, I am going to remember these moments. Now I'm laughing, realizing I used the word "remember" three times in the past sentence. Normally I would change this, but I think I'll just leave it this time.
   I am going to have to start physical therapy back *tear tear*. I really don't like physical therapy, as it is very painful and quite frankly inconvenient. But I guess I need it, because lately I have had some problems with my knees and ankles just collapsing on me. Luckily, I have only fallen at home, and then once on the carpet and once on a sofa. I fear that it will happen at school. I got my second set of corticosteroid injections, but my crazy body had some serious problems and they almost kept me overnight. Thank goodness they didn't, because I would not have been a happy patient!
   I felt the injections (again). Grrrrr. It may not be a big deal to most, but I don't like the idea or feeling of very long needles being stuck straight through my joints. I wanted to yell - in fact, I thought I was screaming for them to stop and put me to sleep, but the sedation had frozen my tongue. If I ever get these again, you can bet I will not be feeling them, because I am going to have some very serious talks with these doctors. Ridiculousness! I was extremely weak after the injections, and I was wheeled out of the hospital. I literally could not  stand up without falling back down; it was an odd sensation. Anyway, stubborn little me went to school the next day even though I could barely stand in the shower. I guess this was what you could call a mistake, because I had to be wheeled down to the front office to call my mom to come and pick me up just about forty-five minutes later.
   This seems to be a dilemma I am constantly facing. How do I balance my wants to be normal (health-wise) with my desire to not be in pain? It may sound like the same thing, but it's really not. For example, I have trouble in cello with bowing, as it is extremely uncomfortable for my wrists and fingers. Do I take frequent breaks to spare me pain? Or keep going with tears in my eyes just to fit it? So many decisions no one could have prepared me for.
   I am proud to say that I have already chosen my 2012 Halloween costume: the elephant from the Paradise music video. It is going to be GREAT!!!!
   My kitten mauled my toe last night. My sister is like, "Ow, that must have hurt." My response?
   "Yeah, but my arthritic knee hurts more."

Love,
Rachel





Saturday, November 5, 2011

Don't Speak

   I am making a little Hall-of-Fame type thing for things I hate to hear about my arthritis. I have received all of these comments, and I need to vent.

1. "It's going to be okay."
    Why? Because it's not okay with me. Of course it is okay with you. You don't live in constant pain.
2. "I understand,"
    Why? Do you really understand? Think before you speak, or just don't speak at all.
3. "You're so brave,"
    Why? I don't feel brave. I feel like you misunderstand me when I call you that. Plus, it makes you impossible to talk to, because I don't want to ruin your image of me.
4. "My grandma has that,"
    Why? So basically, you're calling me old. And your grandma and I probably don't even have the same type of arthritis. On top of that, it's different being young with arthritis.
5. "Try insert medication/therapy name here,"
    Why? You don't know me, what medications I'm on, or what side effects this stuff comes with. This decision is between me, my parents, and my doctors.
6. "You seem to be doing better,"
    Why? I don't feel any better, to be honest. This makes me want to scream. I am not the hard shell I sometimes appear to be.
7. "I don't believe you. You're too young."
    Why? Do you honestly think I would think of a disease called polyarticular juvenile rheumatoid arthritis just off the top of my head? Of course I'm telling the truth! If you want to call the one pediatric rheumatologist left for me in my area, feel free to do so!
8. "I know someone who has much worse arthritis,"
    Why? It makes me feel like my disease is unimportant and I shouldn't be feeling any pain. Regardless, I am. So don't even bring it up.
9. "I read about a woman who tried acupuncture (or something of the sort) and she feels great now!)
      Why? Have you noticed that we're not the same person?
10. "Do you still have it?"
      Why? Of course! This just brings my mind to when I was diagnosed, something I try to avoid thinking about.
11. "You're lucky you don't have to (write notes, walk around, carry your book bag),"
      Why? I think this is perhaps the worst of all. I would give so much to be able to do these things. You are lucky you can write notes, walk around, and carry your book bag. I itch to run. I want to help carry things and write my own notes. I don't consider myself to be "lucky" for not having to do these things.
12. "Stay positive,"
      Why? Sometimes, I just need someone to empathize.
13. "You don't really need that," *Gestures to my wheelchair.
      Why? First of all, you wouldn't know. Second of all, what are you trying to say here? Third of all, I can go through my arthritis from early July 2010, if you want. I can talk to you about every time I haven't been able to walk down the hall. This one makes me want to scream, "SHUT UP!!!!!"

   Sorry for the angry blog post.

Love,
Rachel