A young boy talks about living with juvenile rheumatoid arthritis.
My name's Jeb. Jebediah. Jebediah Franklin Goutreaux. Yeah, that's me.
I'm eight years old. I live in Texas City, Texas, with my mama and papa, my three older sisters Grace Rose (10), Evelina Michelle (11), and Erickah Chantreuse (13), and my little brothers Patrick Ri'chard (5), and three-year-old "Ti'Boy" (Grant Elvin Goutreaux, Jr.).
I also have a coondawg named "Buster". He's my best friend, especially on those days where I'm in a lot of pain.
Nothin' feels better on sore, achy joints than the warm body of a puppydawg lyin' right next to you to take the pain away, make me feel a little bit better!
That's one of the nicest things I can have happen to me.
See, I have arthritis. Juvenile rheumatoid arthritis. I have had it since I was three, five years now. It causes me pain and inflammation (mostly in my knees and hands, also my hips). I have trouble walking, so I use crutches (or on really bad pain days, my wheelchair, like when I go to school; it's much easier for me).
I've had a few surgeries, will prob' have more in the future as my joints wear out.
To try to help my joints some, I have therapy several days a week (after school); I have this done at the hospital. While in therapy, the therapy people help me stretch my legs or arms (that can hurt; sometimes I cry if the pain is especially bad); it helps me to do things for myself, and to get around better. I also have therapy to keep me in good shape. I especially like the pool; there I can swim and do my thing for two hours; and while in the water, I often forget I'm in pain. It's wonderful!
It's when I'm out of the water when I have problems getting around.
At school, some of my friends carry my books for me; they're too heavy for me, and they would wreck my joints, make them worse. They also let me tape the classes, that way I don't have to write out my notes, particularly on those days where I'm hurting bad or am having a flare.
A flare is when my arthritis is active. Sometimes during a flare I can get headaches, chest pain, or stomach upsets. Sometimes I have a high fever, and I get the shaking chills. When I have a flare, I usually stay home from school--or if it's really bad, I end up in the hospital because the pain is often so bad, to the point of where I have to throw up (or want to pass out).
When in the hospital, I'm given powerful drugs to help me. They make me all loopy-headed. When I'm there in the hospital all I usually do is sleep, don't want anyone to bother me. It's a pain, especially when they need those stupid blood samples or wake me up for a pill or to check my signs, to make sure I'm okay.
(If I were okay, I wouldn't be in the hospital, I'm always telling those stupid nurses or doctors!)
It's even worse when I have surgery. I have to go without eating the night before surgery, and those operating rooms are always too cold for me! BRRRR!! I also don't like having to wear the heart monitor; it's too noisy!
When I come out of surgery, I'm sicker'n a dawg, and I'm in a lot of pain. I cry like a baby. I try to be brave, but I can't help it. I feel too bad. All I want to do then is sleep or have everyone leave me alone.
When I'm not sick or in the hospital, I like to read, play video games, watch "American Idol" or "My Dad Is Better Than Your Dad" on tv, or draw/write stories if my hands aren't giving me fits. I can't do a lot of the active stuff like sports or runnin' around, so I just stay indoors, try to amuse my little self, try to keep my little brothers outta my hair, keep my older sisters from pokin' 'roun' in my stuff.
I also love to play my Cajun accordion, sing Cajun music.
That's what I want to be: a professional Cajun musician/singer. I think I can do it if I try hard enough. My favorite Cajun musician: Belton Richard. He's a legend. He's great!
Well, I'll write in here again another day. Gotta wait for the bus; 'bout time for me to head back home for the day. Take care and laissez les bon temps rouler!
~Ton ami Cadjin, Jebediah F. Goutreaux, age 8, Texas City, Texas. :)
I agree with the rest, children should not have to suffer the pains of such illness...Jebediah keep up with your practicing, and hug you dog often
love, Carole~
I had one very sweet aunt that suffered of rheumatoid arthritis, today, when I have pain somewhere I am ashamed to complain as I remember how that dear aunt never uttered a complain despite frustration and pains.
Jebediah, We are all the way with you.
This touches me deeply, Karen. I can imagine how unbearable this affliction is, having had lupus, erythema nodosum and fibromyalgia... all sister illnesses, I guess. For children the agony must be terrible, and with growing pains... doesn't bear thinking about. But love the dawgie friend - how soothing! Like a warm hotwater bottle to cuddle up to and find relief with. Can also relate to the Cajun... saw a GREAT band recently at my local seaside pub... from Baton Rouge... dayummm... their name escapes me... May Jebediah continue to have music in his soul and in his bones. Bless you, Kate xx
It is terrible when children are afflicted with such things. Your caring for those who suffer is always deeply touching dear friend Karen. This is a write that would touch any heart with compassion. Well done!
Blessings and love ...
Richard
Poor little guy. No child should have to suffer unrelenting pain - even through it all, little Jeb seems determined to overcome. Love the fact that he keeps his fingers mobile by playing Cajun accordion - that ain't easy at all, non. :) Well done, Jebadiah, keep playin', keep singin' and I'm sure you'll go far! Excellent write, it teaches and inspires.
(((HUGS))) and love, and laissez les bon temps rouler, Karla. AAA-III-EEEEE!
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