Johnny enters a new entry into his ongoing journal, which he just started earlier this week.
Friday, October 1, 2004~
Dear Journal:
This is your pal, Johnny. I am happy to say that Ronee' will be going back to school Monday; she's just about over her "flare" (which she calls her times when her arthritis acts up), and she is spending more time awake and out of bed. She is in the livingroom listening to her gospel cd by Victoria Huggins, this ten-year-old kid from North Carolina who sings gospel music. She isn't half bad! She is also watching tv, but when she gets bored with the tv, she puts on her Victoria Huggins cd.
I am home from school today because my school (Morningside Academy) had a "teacher's in service", meaning that the kids got the day off, but the teachers still had to go to school and report for work. What they do on "in service day", I have no clue; maybe they think of new ways to torture us with more homework????...
All us kids who go to Morningside are home, but the ones who go to Eastview Elementary or Donelson Elementary or other schools like that still have school. The only reason Ronee' isn't in school is because she was sick, and she isn't quite over her flare. Whenever Ronee' has a "flare" her joints swell up like baseballs, and it is hard for her to move without being in severe pain. Sometimes her pain gets so bad it is all she can do to keep from crying, and she also gets a severe headache and an upset tummy; and sometimes she throws up from the pain. It's not fun whenever Ronee' has a flare. (Ronee' has the bad kind of arthritis, systemic, which means that it can affect her body besides her joints, and it can make her feel pretty rotten! It can affect her lungs, her heart, or her stomach, and it can even bother her eyes or hearing.)
But I am not here to discuss Ronee' and her bodily functions. LOL I am here to discuss ME; this is MY journal, NOT Ronee' 's! LOL
I spent the morning playing with my remote control Hummer after not being able to play with it for a few days, when Ronee' first got sick. She slept a lot, and spent a lot of time in her bedroom, in her bed. But she is up and is in the livingroom, eating her soup and crackers. And watching tv and listening to her gospel music cd. I then played a round of Tetris on my Game-Boy and may write a letter to Jenna or Kendra or someone. I am getting bored again...
I don't know why, but I thought today was Saturday. It seems like Saturday with school not being open; but it is only Friday. Sheesh! Where IS my head this morning???... I am going to be soooo bored by the time Sunday rolls around! I think flies have more of an exciting life than I do...at least they can buzz around and go in and out at their leisure; all I get to do is sit in my chair and watch the sun crack the sidewalk or watch the paint peeling from the walls! I have no life excepting whenever I am in the hospital again or get sick! Or go to my stupid therapies or to the stupid doctors! I HATE going to the doctor's each and every week! GRRR!!
This, having muscular dystrophy, BITES. I hate being so weak, and I hate having people help me all of the time! It's embarrassing when they have to help me with my toilet or brush my teeth or hair, or turn me over in my bed because I can't do it myself. And I am afraid that it isn't gonna' get any better; so I had better get USED to having this crud that my mom shared with me. ARRRRGGHHHH!!! I also hate sitting in a wheelchair or having to wear those heavy braces on my legs; and I hate having to use oxygen whenever I start to have problems with my breathing or when my heart acts up! That is probably the WORST, when I have to go to the hospital, on account of my heart or breathing! Or having another danged seizure! ARRRGGGGH!!! :(
I try to be positive about my disease (like thinking of seeing Jesus in Heaven when I die or the fact that I will be healed of my MD when I get there!), but at times, like on days where I am weak as a kitten and am having a lot of trouble, I can't help but get a little mad. I didn't ask to have this crud; it is just something that happened, so I have to get used to it and try to make the best of it. Still, I DO miss the good old days, where I could walk pretty good on crutches and didn't get so tired, or where I could wheel my chair all by myself instead of having to rely on my electric one that I use now and worrying about the batteries running low, or having a dog help me with dropped objects, helping me get dressed, or letting my family know that I am about to have a seizure again!
Sunday, at church, I am going to help Pastor Bilkey with the sermon. While he preaches, I get to sign what he is saying. I always like helping him because it feels like I have something important to do, and I like helping those who can't hear and letting them know what Pastor is saying. I will let you know how that goes. I do that about every other month or so. I am looking forward to that! And also Sunday afternoon, right after the second morning service is our "dinner on the grounds", where everyone brings something, and we have a huge picnic! We also have music and fellowship time, and we kids get to run around and act crazy all afternoon until it is time to get ready for the evening service!
I will write more later; I have to go pee, and I need to let someone know that before I mess up my pants (or my wheelchair), which is always disGUSting! See ya later, alligators!
(((HUGS))) and love, your pal, Johnn-o.
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Reviewed by Susan Barton
10/2/2004
thank you! My grandmother had arthritis that twisted her fingers and made it hard for her to walk. I didn't understand how much pain she was in.
Another wonderful heart touching story Karen!
You make us aware of what it might be like to
have MD or some of the other debilitating
illnesses that you write so well about!
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Friday, October 1, 2004~
