Hello from Woonsocket, Rhode Island!!
It's your new friend, Chevon Demetrius Jones, writing! I hope this finds you all well! Me, I'm okay; getting ready to go to church for services at 7:30, so this can't be too long. We'll leave by seven, or a few minutes after. We'll be there by 7:15 tops. No choir for me tonight, so I can go later. If I were singing, I would have to be at church by six, so we can practice our songs beforehand.
The weather here is cold, not to mention, cloudy. Lows in the lower twenties tonight, so I have to bundle up until I look like an eskimo. While the heat is not good for my skin, neither is extreme cold. I have already lotioned myself up and got my body wrapped up in ace bandages, so at lest in that way, I'll be comfortable. Right now my skin isn't hurting too bad, so I am thankful for that.
Tomorrow it is supposed to be cloudy with highs in the lower forties, then we will have rain by tomorrow night. At least it will wait 'til after we get out of school, so I don't have to worry about getting soaked while waiting for the bus. West and south of here, though, they're under ice storm warnings, so maybe it will be coming here. I hope not. It's already hard enough for me to get around; wheelchairs were not made to get around in ice or snow!
I can walk under my own power, but there would be the chance of my legs rubbing together, causing new blisters and lesions to pop up, which, in turn, would open the door to possible infections or hospital stays. Having a problem like mine is a regular MESS!!
I have EB, or epidermolysis bullosa, or EB. My skin is extremely fragile. Any pressure could cause blisters or sores to pop up, and if I were out in direct sunlight for longer than 15 minutes max, I could run the risk of getting skin cancer. And I probably would get it and would then have to have THAT to deal with on top of my paper-thin skin!
I have to wear special medicated lotions to keep my skin moist and soft, then wear bandages to cover the sores that have popped out on my body. I have them all over: my arms, my hands, my legs, my feet, my back, my face, my neck, my stomach. I look like a mummy sometimes, especially when wrapped up in my bandages.
My condition is extremely painful. Some days I function pretty well, but on others it is so bad I get nauseated and there have been a few times where I have actually passed out. When this happens, I have to go to the hospital to get powerful painkillers and IVs stuck in me. NOT my way of spending a Sunday evening, especially when I have church to look forward to!
If it were not for my salvation or my faith in God, I don't know what I would do. Having EB can either make or break you and I choose to live to the best of my abilities. I accepted Christ when I was eight, three years ago and we go to a Pentecostal/Assembly of God church. It is very spirit-filled and the sermons are directly taken from the Holy Bible. People ae free to worship in any way they so choose and the power of the Lord is often very evident in the services. It is awesome when the glory of the Lord comes down!!
Well, I gotta get my stuff; it is time to leave for church, then I have to go directly to bed, as I have school tomorrow. I will write in here again soon; until later, this is Chevon D. Jones saing so long! May God bless you abundantly!!
~Chevon. :)
~To be continued.~
