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Mood: Content
Music/TV: 3 doors down
I went to my primary care dr today. He didn’t have much to say thou. I have yet another new dr to see though. This is a ear noise and throat dr. I hate seeing new drs. It seems like I can’t get away from them.. I have an appointment with my Dermatologist Wednesday. So he can look at a spot on my hand I have been having trouble with. It’s really sore and is getting bigger. So, I most likely with be getting a biopsy of that… “sigh” Life is never fair for me. I never ever get a break from physical pain let along emotional pain.
Grammy ordered DSL today! I am so happy. Can’t wait to get it! I will be faster than a bean of light. Woohoo. Then I can download music faster too. Woohoo.. I have been wanting dsl for a while now. Its actually cheaper or the same as for paying for two phone lines & plus the dial up.
OK HERE IS SOME OF MY WHAT I HAVE OF MY STORY I AM WORKING ON. THE SPELLIN GMIGHT BE REAL BAD. HOPE YOU ALL ENJOY!!
My life was heartache
Once upon a time. There was this baby girl that was born in 1979 in Wilmington Delaware. She had all of her fingers and toes, but there was something not right with her skin, because she had no skin on her left leg and also no skin on her stomach, and she had some blisters. The Doctors did not know what this was until they had the Doctors come from A.I. Dupont Institute for Children in Wilmington Delaware; it took the Doctors three days to diagnose her with Epidermolysis Bullosa (EB) for short. I bet you would love to know her name the little precious baby is Jennifer.
This was not English when they told her Mother Joanne Deprizio and her father Richard and her Grandmother. After they diagnosed Jennifer with EB, she was in the hospital for 3or 4 months in isolation to guard against infection, so they could teach Jennifer’s mother how to take care of the wounds that Jenn had and the blisters that would appear after a slight bump or scrap of the skin. The skin is very fragile. The nurses where really good about teaching Jennifer’s mother how to change the bandages and keep the wounds nice and clean.
A year had pasted and Jennifer was going to have a little sister. She was born in the same town and the same hospital that Jennifer was born in. The Doctors where afraid that Jodi would have EB as well, but she did not, that was good news for the Deprizio family. One year later the girls mother Joanne was pregnant with her son Anthony, may I remind you bye a different father. So she had three kids to take care of. Nothing much was said about Anthony’s father. Joanne was a very busy mother. She had 3 babies and to top it all off she had one with a very rare skin disorder and had to teach herself a lot about Epidermolysis Bullosa (EB) for short. She had to constantly watch her and change her bandages everyday. Joanne had to grind her food because Jennifer could barely swallow food. Keep in mind that this was before DEBRA was founded, so there was no one to help Joanne.
After Jennifer and Jodi where born their father Richard tried to help there mother Joanne, but she did not want there father anywhere near the girls. He wanted to help her because he loved his two baby girls. So, Joanne kept their daddy away from them. Basically when Jennifer and Jodi where growing up without knowing there own father. They thought that there mother’s boyfriend’s where there father’s (she had more then one). Joanne let the girls think that.
The Deprizio family was still living in Wilmington Delaware. As the years went on their mother Joanne was getting abusive, mentally, physically, emotionally, with Jodi, and Joanne stared to be abusive with Jennifer. Anthony was mommy’s little boy. Jodi and Jennifer’s Grandmother Shirley wanted to get custody of them, because she new Joanne was abusing the girls. So she called Child Protective Services, but they did not do a thing to the mother. They kept the girls there, and went back to tell Shirley that they can’t do anything because there is no sign of abuse. But why would their Grandmother call them if she did not think that they would be okay in the home with their mother. The mother Joanne found out who called Children’s Protective services on her, and from then on she didn’t want the girls Grandmother to find where they would be leaving. So, when There Grandmother found them Joanne would move and this went on for quite awhile.
A few years went on. Jennifer was 8 years old and
Jodi was 7 and their brother was 6. They new Anthony was their half brother, but never did they tell anyone that he was. They love him very much. Well, as you know Jennifer was born with a very rare skin disorder and she had to grow up fast because of it. She was a very smart little 8 year old, smarter then a normal 8 year old would be. Anyway Jodi and Jennifer where very close and they both new that. One night Jodi told Jennifer that Gary (one of their mother’s boyfriends) was sexually abusing her; this went on for years before she told me. Jennifer told her sister that they had to tell their mother that this was happening, may I remind you that their mother was physically abusing her already, well Jennifer and Jodi told their mother and she did not believe them at first. She got very angry with Jodi because he was doing that to her. Jodi did not know that this was wrong she was a little innocent girl at that time. Joanne was even getting worse with the physically abuse with Jodi. Nobody new why she was likes this just with Jodi and some with Jennifer. Jodi also told her teacher and her teacher called Child Proactive Services who then investigate. A few weeks later Joanne called the Police and told them what has happened and they told her to bring Jodi to the Police station so they can talk with her about what Gary did to her. The hospital also examined her. Finally they charged him with sexually abusing Jodi. So, he went to jail and served 8 years of 20 that he was sentenced. He got out early because of good time. Can you believe they would release a sexual abuser!! Joanne said well he will not be getting out of jail so I have to go find me another man that will treat my kids like crap!! She did not say that but by her actions it sure did look like it!
Then their mother Joanne was single for a while. Then comes a long this guy Robbie, he was no better then the other guy that was in jail. Joanne and Robbie only new each other for a week and they wanted to get married so they did, but behind everyone’s back. She did not even tell her own kids that they got married!! Jodi & Anthony and Jennifer where living in Anthony Florida, they had a nice 4 bedroom 2 bath trailer. Robbie did move in after they got married!! Jodi’s room and Jennifer’s room was right across from each other, and Jenn would keep her door open because she had a very bad feeling about this guy that her mother was with. Keep in mind Jodi and Jenn where very close!! Jenn was 14 years old Jodi was 13 years old and Anthony was 12 years of age. So, one night something awoke Jenn and something was telling her to go in her sisters room and she did and there was that scum ball he was TRYING to sexually abuse Jenn’s sister Jodi, but Jenn did not let that happen because Jodi sister new what she was going through with Joanne abusing her in every way she could so, her loving sister Jenn went in the room and was hitting on Robbie, even though she has a skin disorder she was a strong little girl. So, the sexual abuse, mental abuse, physically abuse went on for years to come, it was not getting any better!! The kids where happy and so were Joanne but when she met Robbie she was a totally different person. So, time went on and they lost that nice trailer they had all because Joanne would not pay the rent. Keep in mind that Robbie was still with Joanne, and living with them!
I don’t think Jennifer realized that she had a disability at this time, because so much was going on in her life at this point!! She would get an infection EVERY month and would be in the hospital for a week!! She was suffering from malnutrition because her mother was not caring for Jennifer the way Joanne should have been! Jennifer was 42 lbs and was 4 feet; this was very bad. Jenn was nothing but skin and bone!!
Jennifer almost died a few times because the infections got so bad. The hospital was like a second home for Jennifer. She liked the hospital better then her home, she was so happy when she would go in. Because she was away from the bad life she did not want!! She does not remember much about her past because she blocked it all out. There is MUCH MORE that she has not told but I think it is best not to force her to tell!!
Jennifer was VERY depressed because of the life Jodi (sister) and Anthony (brother) had. She would think of killing herself and what would be the best way to do it. She thought of this A LOT. She thought of doing this not to tell anyone about one of the infections she got and then just let it get so bad where NOTHING OR NO ONE could do for it to get better. But there was something that would stop her from doing this and that was she loved her brother and sister so much she had to be there for them. She loved her sister Jodi very much. Jennifer saw what Jodi had to go through and Jenn felt her sister’s pain!!
There is not much to tell about her brother!! Because he was a mamas boy! He didn’t get in trouble EVERY day or got hit! Jodi and Anthony where very close too, and still are. Jennifer was not that close to her brother. But there was this one time that Jennifer does remember what her mother Joanne did to Anthony. He got her so mad where she went and ripped the phone cord out of the wall and stared to beat him with it!! Even with me writing this it still hurts to even write it or think about what did happen in her past. To despite the rough childhood and EB, Jennifer was a very happy girl. She taught a lot of people a lot of things and not to take things for granted!!
When Jennifer was about 12 or 13 she was home schooled because she would get skin infections there for she was in the hospital once a month because she was not getting the proper treatment from her mother. While she was in the hospital maybe for a week or 2 she would miss a lot of schoolwork, so, they put Jennifer in home schooling. She didn’t learn a thing while in home school because the teachers where treating her like she could do her grade level work. As the year passed Jenn went to high school in Gainesville Florida, Well, she started high school and met a girl by the name of Moriah! At first Jenn didn’t like her because she was a little rude to her when they first met. Then those two girls started to talk to each other they became closer & closer to being friends. Before you knew it they where best friends. If anyone messed with Jenn Moriah would back her up, and Jenn would back Moriah up. These two sweet girls became sisters. They did every thing together shared everything told each other any thing & everything. So, they met in Gainesville Moriah knew & saw what Jennifer her Jodi & Anthony had to go through with their mother. Moriah didn’t like it, but what could she have done to stop it, nothing really. Moriah was only like 13 or something to that affect. Moriah also had a disability. She was born with Progeria. So, they kind of both new what they where feeling & such.
Then something terrible happened to Moriah & Jenn! They got separated in 1997 because her mother awoke Jenn to get her Grammy’s phone number. She new something was not right. Because Jennifer knows that her mother hated Shirley. So, Jenn got up called her Grandmother and Joanne talked with Shirley! Joanne told her she should come & get Jennifer, because she needs to go into a mental hospital, Jodi and Anthony went with some friends of Joanne’s. Her Grammy may I add Shirley lived 4 hours away from them. At this time they where living in Gainesville Florida, in the trailer that the Grandmother had bought for them to have a nice place to live in Gainesville. Jennifer Jodi and Anthony all loved the trailer. The only thing that they didn't like about the trailer was just too small for four people to live in. When the kid’s grandmother arrived in Gainesville to get Jennifer and to help Joanne check in two a mental hospital for treatment of manic depression. After they had Joanne settled in the mental hospital Jennifer and her Grandmother went to Melbourne Florida, where Shirley and Richard Jennifer's father live. When they arrived at Shirley’s apartment, which was only a two bedroom two bath. But, nice for two people, but now there where three going to live in the place.
Now that Jennifer was living with her Grandmother and father. They had the responsibility to give Jenn her bath & bandages to keep her a live basically. They had all of the bandages and such that she used when with her mother. The next day they got her up and had her take all the yucky dressings off & under neath those dressings where nothing but RAW PIECES OF MEET & gave her a bath with Dumboro soaks, so they did what the instructions said to do & Jennifer screamed in pain & cried to stop it!!! The Doctor that Jenn had subscribed the soaks for her. Her Grandmother had never seen her look that bad when she would go visit them. Would to if I had open raw wounds like that too & having a soak on them and having it sting like crazy. She couldn’t bare this kind of pain. Her Grandmother got mad & didn’t like to see her hurt this much. So after all the bandages where done Jennifer went to bed, because she was tired from the pain she had gone through with the bathing. Shirley Jenn’s Grandmother went online & was searching so hard for another method besides the Dumboro soaks. She also learned the soaks that she had given Jenn was not for EB!!!! . She found too that she wanted to try. The soaks that Grammy found for Jenn where Dakin Solution, that called for 8 ounces of water depending in the tub you have to masseur it & one ounce of Bleach, she had to soak in the Dakin bath for about 15 to 20 minutes. The second one is Vinegar solution that calls for the same amount that the Dakin has. It worked ok, the first couple times Jenn got in it stung her like crazy, but she took some pain medication to try to relieve some pain. Shirley got Jenn in good health. So, a couple of weeks had pasted & Jennifer’s mother calls to tell her that she is getting out because the Doctor told her that she is fine to get discharged so, Jenn was happy & excited!! Her mother said she would be in Melbourne on that Saturday & Grammy & Jenn waited for her mom. She didn’t show on Saturday. And then a week went by no sign or nothing from Joanne. So, Shirley called the hospital where Joanne was at & they told Jenn’s Grammy that she discharged herself!! Joanne had lied to us! May I remind you while all this is going on Jodi & Anthony where still with their mother’s friends Susan & Robert. When they found out that their mother was not coming to get the kids from Susan & Robert, my brother was only 15 years old he was not old enough to be on his own so he went into a boys ranch, my sister Jodi came to live with Us here in Melbourne. Jodi was only 16 years old, she was also mixed in the wrong crowed at school, so she was into drugs, sex, alcohol! It had to do with the pasted she had lived already. All she new was that. Because she saw her mother do it, and she thought it was the right way too. Their Grammy tried to deal with Jodi, but she couldn’t because she was out of control. Both of the girls went to counseling. They needed to get the anger out that they had. One day Grammy & Jodi got into a big argument and Jodi was put in a home for uncontrolled kids. This hurt Jodi’s Grammy so much, because she didn’t want to see her go through this. But, something had to be done. The road had not ended there. Shirley had to get help for the girl’s because they had the trats that their mother had & both of them don’t need that. Had enough to deal with. So, she did & it helped a lot. So, anyway, Jodi was getting a little better. But, Her Grammy found out that Jodi was lying constantly & Shirley didn’t like that all. Joanne never treated there Grandmother right. She either was lying to her or trying to manipulate Shirley. And that is what Jodi tried to do a lot. Because that is what she learned from her mother. So, then Jodi moved out on her own.. That was a sire to see. She had a lot of problems at first, like couldn’t keep a job and things like that. Finally Jodi met a good guy by the name of Tom. He was clean cut, treats her good, there for her. Now it is 2002 & she is living in a nice house with a roommate and she has a dog by the name of Flash. She loves dogs. Jodi is doing very well! Thank heavens!
When her Grandmother enrolled her in Jr High she didn’t want Jennifer to be put in Special Ed. That was not for Jenn. But, who ever enrolled Jennifer told Shirley that she is to fair behind in the general school work that it would be twice as hard. So, therefore she had to go into special Ed. Jr. High & High school was not easy for Jenn. Because of the kids didn’t understand just because she “looks” different does not mean she needed friends to hang with. So, she normally kept to herself. So, she finished Jr. High. Went on to High school, she thought it would be different with the kids age rang. But, no it was the same. So, she was in the special ED program in High school also. They put physically impaired with the mentally. That was too easy for her. She didn’t really learn anything. Barely was in school due to the face that every time she would turn around she would get a skin infection. It was from being around all the kids & germs that they had. So that was no good. Then Grammy & Jenn talked about her going on home bound. That was a waste of time also. Didn’t learn anything. They treated Jenn like she had a mental disability. She felt stupid because they did that to her. So, she did what she had to do to graduate & she walked down that ieal and got her special diploma. After that she went to her community college & enrolled for Desk Top Publishing. Her classes are Monday, Tuesday, Wednesday and Thursday night. She also might be getting a part time job in the Deans office doing securely work. . She really does not have much to choose from having a special diploma. So, after these classes she is taking now. Jennifer is going to get her GED so she will get that special diploma out of her way from doing what she wants to do. She is a strong and caring person I have ever seen in my life. She is 22 years of age and also living on her own. Jennifer also has a kitty cat named Buddy. He is all black and loves her to death. He follows her everywhere; if he could he would go to school with her.
Not sure about Anthony. Because he never calls or anything; She would like him to but, she make him do what he wants. She still loves him. But she looks at it like this. If he does not show any interest in being her brother than why should she show any in being his sister!
Shirley their Grandmother had a very tough time of getting what Jenn needed for her bandages. Every time Grammy turned there was a problem. She would tell the Suppliers look; Jennifer needs these bandages to stay a live. And my bottom line is to get what she needs. So, she was trying to find where the problem was coming from. And finally she found it. It was the suppliers billing department; they where not sending the Insurance companies what they needed to pay for the supplies. I am trying to remember all of this. It is kind of tough because a lot has happened.
11/4/02
The Unique life I live!
Their once was a mother and a father that got pregnant with her very first child! There name’s were Joanne & Richard. They didn’t think of anything happening to the baby when she had it. So, the parents where so excited about having there first child! Then the day came for the baby to come into this world. It was a girl, she arrived on December 14th the precious baby girl was born in 1979; her name is Jennifer K. Deprizio. She is from Wilmington Delaware.
So Jennifer was born, but it was not a normal arrival. She was missing skin on her stomach & on her leg. The doctors and nurses got silent. Just imagine how happy & excited you are when you have your first baby! And then come to find out there is something wrong with her. This could happen to anyone.
The doctors didn’t know what this was, so they had A.I. Dupont Institute for Children in Wilmington Delaware to come & check Jennifer out; it took the Doctors three days to diagnose her with Epidermolysis Bullosa (EB) for short. This was a shock to the family of Jennifer. Her father Richard didn’t take it so well. He felt it was his fault that his daughter was born with EB.
It is no ones fault that this has happened to me. It was just meant for me to have it. There is nothing or no body that can change how god wants me to be. I know I have this for a reason. I’ve figured out some of the reasons. Ok first off I am going to tell you how I look. I have blonde hair that has never ever had die in it my eyes are hazel & change color my height is 4”11” and weight is 85 bounds. Just imagine me with out this skin disorder. I would look perfect & I know I would be stuck up! Having EB and living with it for 22 years has taught me so much about life and the things in life. That is how I look at it! A lot of people look at it in different ways. Some take it badly some take it good. But, you have to deal with what god has handed you. I am dealing with it. No, I don’t like it. And, yes, I wish a “cure” would hurry up. But, I realize that it will take time for that to happen. I just pray that I am here when they do find it. So, I can enjoy having beautiful skin & get my navel pierced. And wear sexy clothes. And feel “Normal”. But, do you really think there is such a “Normal” person in this world? No, there’s not. Every one has there ups & downs. Some may have more than others.
Before I go any further; I have a brother and a sister. Who are both EB free. I am 22 my sister (Jodi) is 21; my brother (Anthony) is 20. I do say and think they are lucky that they don’t have to suffer from EB. Truly I think, they wouldn’t be able to handle it the way I do. There are chances that their kids can have EB. I wouldn’t want to see any of my family members to have this.
Epidermolysis Bullosa has affected me in many ways. First the positive ways it has affected me. Most people my age don’t have what I have. I am in college. I have my very own two-bedroom two-bath two-car garage house; that is in a gated community. No, I didn’t just get this house handed to me either. I was in a car accident almost three years ago & of course with my skin being so fragile I was hurt pretty badly. So, I was offered a settle meant. I had to choices; one a car, at this point I was not wanting a car because of the accident or two my very own house. I have been wanting to live on my own for a while now. It’s not because I don’t love my Grammy or dad it’s because I have the same goals and dreams that people have that don’t have a disability. Just because I look different doesn’t mean I am “different” on the inside. I don’t look at myself as “different” people just treat me that way. But, that does not stop me from doing what I want to do. Not to say I just recently got a job at my college to work in the Dean’s office. I start this Thursday date is 11/5/02. I am proud of myself.
I am going to tell you my daily routen. I do this every single day. My nurses aid Eileen is here at 8:30 a.m. She gets me my medication and breakfast. Then after I am done eating Eileen & I go to my room to make the bed then set up my bed with first laying a clean white sheet over my comfort so I won’t get stains & my creams I use on my pretty Leopard blanket. So, while Eileen is getting the bed set up, I am in the bathroom on Monday’s Wednesdays and Fridays are bath days for me. So, before my nurse Elvira comes I am already in the bath tube soaking. There is a Dakin solution I use when I get my bathes, it is 8 ounces of bath water & 1 ounce of bleach; I soak in it for 15 to 20 minutes. You have to measure your tube the first time you use this; because every tube is leveled different. Then when I have my “bath off days” I have another solution called Vinegar solution. Compresses are how I use this one, so I soak the same time as the dakins; I’m not sure how this is measured because I don’t get a bath with it. Elvira puts it in a saline bottle; we’ve tried using a spray bottle, but I think the solution clogged it or something. It’s easier in the saline bottle anyway. After I soak or use my compresses I start to bandage!! Elvira does my lover back and my shoulders. I do the rest of me. Then I get dressed, eat and Elvira brushes my hair and puts it up in a pony. When done eating, I head to class at 1:30. The day goes so fast for me because of everything I have to do. So, 5:30 rolls around its time for me to head downstairs to go home. It’s 6:00 when I get home. Eileen comes at 6:30 to fix dinner & we change my bed Monday’s Wednesdays, and Fridays, 8:30 Eileen has to go home. But, I let her go home sooner.. I have been blessed in many ways.
The peers around my age are very judgmental. So, it is hard for me to make friends at school. I have tried being open with students and everything. But, it doesn’t seem to help. Jr. High and High school was the same way. At least now they smile and say hello to me. I have a few friends but not many. Scott is one of my best friends I met him in high school. I have had a crush on him ever since High school. Not anymore. But anyhow, I also have a best friend Moriah she was 20. But she passed away a week later after Adam passed. I miss her so much; because we shared everything together. When I was up set or sad or mad or anything she was always there to put a smile on my face and cheer me up. I was there for her as well. I don’t see why it is so hard for people to just accept the fact that there are people out there that have visible disabilities. Yes, it is hard for me to understand that. I am a sweet and caring person. They can’t judge a book by its cover! You have to dig deeper into the person and get to know the real girl that is inside of me. Guy’s have always looked at the image of women; if they are not hot enough they don’t want anything to do with you. Well, I have news for you males out there, a “hot” girl/women are stuck up and snobby and will treat you wrong. The other girls/women that don’t have the looks will treat you well. Now I am not saying this is true all the time. Everyone is different. But, it is how I see it happening.
If you where wondering yes I was in love one time. I was in Love with Adam B. Gardner. He had Testicular Cancer and pasted away October 14th. Yes, I miss him. He was my heart and my soul. He was 21. Adam was a handsome guy! I miss him, because he didn’t care about my skin and didn’t try to force me to do anything I didn’t want to do. There will not be anyone like him again. He was one of a kind. I am lucky I got to know Adam and be a part of him for a while. We where going to get married. But, it didn’t happen that way. He is still in my heart and I will always love him no matter what. But, my point is it doesn’t matter what you have or what you look like, as long as you have a good heart that is all that matters.
How I deal with EB and everything that comes with it. I just look at it in many ways. I love to do a lot of things. I love music that is one of the things I do when I am upset or some thing is I turn the radio on. Well, I always have it on but still. Writing too helps me. I love to writ as you can see here. I try to keep myself busy when I get upset in anyway. I am also on Anti depressive.
God bless
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