Tag: Life

#Medical, ADA, adulthood, Camps, College student with disabilities, College with Disabilities, CollegeStudentwithDisabilities, CollegeWithDisabilities, disabilities, disability, Disability Awareness, Friends, Friendships, Inspiration, inspirational, Life, marfan Syndrome, MarfanSyndrome, medical, rare disabilities, rareDisabilities, students with disabilities, StudentsWithDisabilities, Summer Camps, UnBreakable, Uncategorized, Zebra, Zebras

My English Paper- The Lights of My Life (March 2010)

jamiesjourney0591

The Lights of My Life

Everyone has numerous roles they play in life. The roles I play “send light to people in darkness,” while for me, it’s just what I love to do. The roles I play are best quoted from a close family friend and her family, “Her role is comforter, supporter, friend, evangelist, sisterhood, etc., in our lives and we love her for it.” These roles, along with others, are very important and I take all my roles very seriously.


The role of playing myself is played simple. I am a child of God and try to act as such. People have said I am such an inspiration to be around because I am “always looking ahead to see what I should be doing, always smiling, and always willing to help others.” Examples of this include planning to help with food drives, fundraisers, or other means of assisting. I love to help, not for credit or praise, but because I know I’d like the help if I needed it and because it’s the neighborly thing to do; it makes my heart feel warm and happy.
In the role of friendship, I do almost anything for my friends. Most of my friends have said they know that I am always there for them when they have a problem and I always support them. One friend in high school, Tamika Thomas, said I was a good friend and supporter because in high school, I happily supported her when she ran for vice president of our class, by taking time out of my day to make signs and basically campaign for her.


The role I play in family is very important. My family has said I’m very loving and involved in family activities. When the family gets together, I always try to help out, whether it be with cooking or entertaining the kids, I’ll do it. They have also said that I have a great amount of determination; anytime I was told I couldn’t do something, I proved them wrong. A perfect example of my determination is: when I was an infant, my arms were pretty weak and my mom thought I couldn’t hold my bottle; instead of using my arms, I used my feet to hold up the bottle.


Some people have said two other roles, I play are natural born leader and special needs advocate, because of my “strong character, determination and dedication to personal and community causes that better our society, the confidence and tenacity to make a stand on behalf of those who cannot represent themselves, and looking past disorders and disabilities and loving people for who they are.” A perfect example of this caring and devotion to charity and special needs children is when I go spend time with a little girl with spinal muscular atrophy named Julia Ortego. Julia always smiles when I go visit and says, “I am her best friend and her big sister.” which makes me smile, knowing that I’m making her life as happy as it can be, despite her disability and limited life prognosis.

Another example of this dedication toward special needs and community causes is when I work at the summer day camp for special needs children; even though due to my disabilities, I didn’t get paid to work and had to volunteer, due to my limitations of my disability and the parks and rec people worried about liability; I still work there because I was a camper there once and I felt it’s time I give back to the new generation of campers now attending, plus who better to help the abled-bodied campers “get into the mindset of the campers,” than a former camper?


These roles I play are very important and I take them seriously. The roles I play “send light to people in darkness,” while for me, it’s just what I love to do. I love to help and make everyone happy as best I can. If I see someone depressed or sad, it makes my heart sad. My roles are what paint my world and make me who I am, a small girl in a big world trying to make a difference.

Now in 2023, I want to speak to anyone reading this:

“Life is hard sometimes, it isn’t always sunshine and rainbows, puppies, cupcakes, and unicorns; It does get hard. There are times where you feel discouraged, sad, hopeless, guilt, like you don’t matter or that you have no reason to live, I am here to tell you to not listen to those feelings. While it is okay to acknowledge these feelings and know they exist, know that they are lies; not necessarily the feelings of sadness or anger or hurt or any of that, the lies are the feelings of you have no reason to live, no purpose, that you don’t matter. Those are the lies.

I am here to tell you that as someone who suffered with disabilities as well as bullying because of those disabilities, I know those feelings. I know what it is like to think I won’t have much of a life because of the pain, “How can I hold down a job and contribute to society if I have to live on pain meds just to not want to rip out my spinal column?” “No one is going to want to hire someone who has to take so many sick days,”

or let’s take a trip down the road of Marriage or being a parent: “I know if I get married, I lose my SSI benefits, my fiancé shouldn’t have to support me completely and then private insurance is so expensive and Cost of living keeps going up, maybe I should just end our engagement and save the stress, no..we both love each other. Maybe we just not get married.”

or parenting: “I want to be a parent, but my any biological kids would get my disabilities as they can be hereditary, I don’t want to put that cross on them too.”, “even if I adopt, they still might be disabled because that’s a lot of who are in the system when I look,” “even if they aren’t disabled, they’d get made fun of because their mom is a “freak”, “I could always home-school, but then they wouldn’t get the socialization aspect.”

There will always be worry and fear of the unknown, and the more we worry, the more we humans spiral down that dark hole of despair. I have come to realize that the best thing to do when feeling that way is to go do something to let those emotions out healthily whether it be a hobby you enjoy, going watch a movie or listening to music, journaling, going to therapy, faith, do something to get out of your head and remember to count your blessings: People who care about you, the good days, etc.

But always remember, Everyone has something they can contribute to society, you just have to dig deep down sometimes to find it, but it is there! Never give up!

ADA, Autobiography, Chronic illness, Chronicillness, creative writing, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Family, Kyphosis, medical, memoir, Mom, parent, parenting, parents, Parents of Disabilities, Physical Disabilities, Relationship, Scoliosis, Special Needs, Spinal Deformity, SpinalDeformity, Spoonie, Spoonies, story, Zebra, Zebras

Disability Journey: through Mom’s eyes

jamiesjourney0591

While I was working on my autobiography about my life (still a work in progress), Mom contributed the following chapter for it; Enjoy. 
” South Louisiana knows how to eat, drink & party.  Life was pretty easy for me growing up. I did my share of partying in my teen years.  Life should be a party, but we’re not always the guest of honor. Sometimes we must take our places in the back of the room. Jamie taught me that life is not fair and we are not perfect. I felt guilty and still do sometimes that my daughter has to suffer so much, to teach me and others about important things in life. 

During Jamie’s 1st year of life, words were spoken to me by a doctor that have haunted me to this day. He told me that he could just look at her and see that she wasn’t normal. I am thankful for these words, though, because they opened my eyes. We have all been created to be different, but we are normal. What we are is what God intended us to be, therefore, it’s our normal.

Jamie has such a strong personality with the ability to win hearts, but unfortunately, trying to fit in has made her heart somewhat hard. I always wanted her to be tough. As a female, I knew she would have to be strong; being female with a disability, she needed to be extremely tough. I never wanted her dependent on anyone. She learned well, she hates to ask for help. She hasn’t learned to balance her strong personality and independence with her ability to teach people as well as she has taught me.

A lady that had a hurt back shared with me what Jamie did for her life. During the time Jamie was in swim therapy, this lady was also receiving therapy, but she was having a tough time adjusting to her injury. She was angry, in pain, and feeling sorry for herself. Then comes Jamie, this little ray of sunshine with a smile that would light up a room. It was because of Jamie’s disability she found the courage to not give up. As the saying goes, “She put on her big girl panties and told herself, if this little girl can have such strength to deal with her pain, shame on me for the self-pity.”

She had such an outgoing personality when she was young. Ronald & I brought Jamie to a wedding for a pool playing friend of his. Ronald knew the bride, groom and a few of other people. I knew the bride & groom. Jamie didn’t know anyone. She worked the room like a politician running for office, going from table to table at the reception. By the time we left, almost everyone in the room knew her name. How does society take you from the point of being a social butterfly to the state of almost wrapping yourself in a cocoon? I hope one day, I can see the self-confidence she once possessed shine through again.

Jamie started preschool at 3 years old. She still often tells her preschool teacher, she would like to go back to that time in her life. She was so happy; rarely did she complain about pain. She was in preschool for 2 years. The coordinator wanted her to stay for another year. Ronald and I decided she needed to be pushed through to kindergarten.

She adjusted well with a fantastic teacher. At the end of the school year, her teacher shared with me, how she was apprehensive to have Jamie in her class. Unsure how Jamie would handle the class setting. With tears in her eyes on that last day, she said, “It had been a tough year, the class had challenged her, but because of Jamie’s smile, she had the ability to not give up. Jamie’s disability helped carry her through the year.”

When Jamie was about 5 years old, we took a trip with my niece and her children to Texas to visit my sister. We stopped for fuel. Jamie was told to stay in the car with the others while I went inside to pay. My niece needed the restroom so she came in and Jamie followed her. Jamie asked for a snack cake, but our plan was to eat when we arrived at my sister’s house. I told her, no, but a little lady looked at me & said, “Let that child have a snack” and she bought it for her. I realized at that time, the world was going to spoil my child.

On separate occasions, years after Jamie went to Jr. High, I met up with former principles of the elementary school. Both shared with me, Jamie would give them a hug, every afternoon before leaving school. Sometimes they may have had an extremely hard day, and her hug would lift their spirit.

In Jr. High, the assistant principal would give her such a hard time. He gave Jamie the name “Jasmine” and that is what he called her every day. She would stomp her feet, saying, “My name is Jamie, not Jasmine.” He would laugh. Getting Jamie frustrated seems to be what most of her friends and family like to do.

Most people go through their entire life not knowing their purpose. Jamie’s smile so often would lift a person’s bad day when she was a child. Being an adult, she finds it a little more difficult to be happy and carefree as she was in childhood. Her pain has gotten worse, therefore, it is more difficult to smile. Sometimes she needs someone to give her that smile and hug her that she so easily gave as a child. The great job we did making her independent also makes it more difficult to ask for help from anyone; even when she needs it!

  Why do we try so hard to fit in? We are all created equal. We have different hopes, dreams, and talents. It is when we try to fit in, we are put into a box. Thinking outside of the box is what makes us truly become what we are meant to be.  Ourselves.

People often tell me what a wonderful job Ronald & I have done raising Jamie. I feel we have been blessed to have shared in her great little life. Her life hasn’t been easy, no life is. Dealing with a disability for a child is more challenging, but the rewards I’ve received, far more outweigh the challenges. Sometimes, I still feel guilty, because the struggles with her disabilities have taught me so much about life. Although I do realize, we didn’t raise her alone.”

At home, Athome, Brothers, Childhood, Chronic illness, Chronicillness, Deformity, disabilities, disabled, EDS, Ehlers Danlos Syndrome, EhlersDanlosSyndrome, Family, Handicaps, Health, Kyphosis, Life, medical, Older brothers, Older Siblings, OlderBrothers, OlderSiblings, Physical Disabilities, Scoliosis, Sibling Rivalry, SiblingRivalry, Siblings, SIsters, Special Needs, Spinal Deformity, SpinalDeformity, Spine, Spoonie, Spoonies, Uncategorized, Younger sisters, youngerSisters, Zebra, Zebras

Life Journey: Sibling Rivalry- Big Bro Little Sis relationship

jamiesjourney0591

My brother and I’s relationship has gone back as far as to when I was in the womb. Mom often wrote that my brother would tell her, “It’s a girl because all she wants is junk.” Mom ate just healthy foods when she was pregnant with my brother, whereas, for me, it was just junk food.  Another interesting fact is that my brother is the one who picked, “Jamie,” for my name; Mom and Dad wanted a “J” name, who knows how he picked it: maybe it was because Dad’s middle name was James, or maybe he just liked the name.

Once I was born, he often spent time with me. There are pictures of him holding me, or sitting with me in the rocker under some covers. When I was 2 years old, he’d follow me around with the video camera and video me; it’s one of my favorite videos even though the camera shook and watching it, can make you sick from all the motion because it shows he loved and interacted with me. I gave him the nickname “boy” when I began talking; my uncle/ Paran would call him that, and I picked up the habit. When I was 2, I’d beg him to read with me and he would sometimes. Our relationship started to get strained when I was in pre-k because he started to become a pre-teen/teenager.

When I was 5, I would sit at the front door like an eager puppy, waiting for him to get off the bus. I’d jump around excited, “bubba’s home! Bubba’s home!” Would he pay me any mind once he got home? Nope. He’d walk past me, annoyed from school, go to his room and slam the door. He was in Jr. High at the time and Mom says, she wouldn’t interact with him much except to make sure he was still alive, and to let him know the food was ready.

When you are a younger sibling, you often tend to look up and emulate/try to imitate your older siblings, out of the feelings of “that is how I need to act, just like____ ((whatever the name may be). For me, when I tried to do things my older brother, Jared, did, it often got me into trouble; examples of this include the time I nearly drowned at Blue Bayou Water Park in the wave pool and another time when I was crossing the highway we live on, to head home from the neighborhood across the street from where we lived.

I was about 5 years old, and every summer one of the highlights was to go to Blue Bayou Water Park with my Aunt (one of Mom’s sisters-in-law) and her children. At the time I had not taken swimming lessons yet, so I stayed in the shallow ends of the wave pool, or went in the kiddie pool. We were in the wave pools and the waves had not started yet; my Brother had come to meet us and right before the waves started up again, he was heading out to the deeper parts; At the time, I admired and looked up to my older brother, and tried to follow him. I was crawling on my hands and knees into the deeper and deeper (but still in the shallow part) of the wave pool; the waves started and knocked me over, and I started to panic, so I didn’t even think to stand up and run back to mom. I just stayed under the water, coughing and spitting up water, waving my arms. Mom ran over and “rescued” me. I think it was this incident that convinced mom to get me into swimming lessons. The pool and water soon became a big part of therapy for me and I love to swim now; I am convinced I am part mermaid. I want to be able to breathe underwater, swim with dolphins; I want to be just like “Ariel,” the little mermaid.

The other incident was when I nearly got hit on the highway we live on. My Brother, his friend, my mom, and I were across the highway in the neighborhood, riding bikes (I had training wheels on mine). The sun was starting to set, and the mosquitos were coming out and biting me. My brother and his friend were old enough to cross the highway by themselves, so they told mom and began to leave. Mom was talking and visiting with one of the neighbors, kind of distracted; I kept tugging on her arm, ready to go, but she wasn’t listening. That is when I saw my brother and his friend leaving, so I followed them; His friend noticed and started to lag to watch me. My brother looked both ways and crossed the highway, with me behind him. I, however, was too young to know the whole “look both ways before crossing,” rule, and started right behind my brother, just as a huge 18 wheeler started towards me, really fast. Luckily, my brother’s friend was behind me. He grabbed me out of the road just in time. Dad was in the front yard, and he looked like he was about to have a stroke! I think my brother got in trouble instead of me, but I can’t remember for sure.

I think it was after those two incidents, I learned not to try to imitate my older brother. He was older and knew how to handle life more than a little kindergartener did.

My brother and I did fight and have that sibling rivalry thing, up until I returned from surgery. We had rare moments where we didn’t fight or argue, but we were two different individuals. When I was younger, Jared had chores, while I didn’t; when dad would fuss at Jared to go do chores, occasionally I’d fuss dad and say “quit working Jared like you a slave-driver, dad,” but he’d often tell me “stay out of it, Jamie.” And I quickly shut up.

When we did argue/fight, it was often because I was a hyper little brat; I will admit that. I think it was mostly, I wanted him to play with me, and he wouldn’t. I called him names: “Jar-head, armadillo (I have no idea why,) Boy (that was more when I was a baby/preschooler).” Sometimes, I’d have a “food fight” at him with my tea-party play food. He was a boring teenager who didn’t want to play with his kid sister, and I wanted attention from my big brother; I just sought it annoyingly. He would pull jokes and pranks on me, and I took it the wrong way and would cry. When I was 2 years old, he put a frog in the “golden Easter egg” during an Easter egg hunt, and to this day, I blame that for my phobia of frogs.  Sometimes, I would pick/instigate it, and when he’d try to “strike back,” I’d go hide; like the one time in 2nd grade when we had ice/snow, I went outside, got some icicles, and stuck it down the back of his shirt when he wasn’t looking. Afterward, he went outside to get some, I ran to the bathroom and locked the door.  

When he had friends over, I’d try to hang out with them, tag along, and sometimes he’d lock me out of his room, or they’d torment me, by locking me in the hallway till I was a crying mess, banging on the doors; sometimes, one friend and him would pretend that they were going to put me in the oven; they wouldn’t actually turn the oven on, just open it and act like they were going to put me in; I’d cling to that friend’s neck and beg “No!”

 One time when I was 6 years old, he had to babysit me. I was playing with his Nintendo NES, but he got mad that I had taken it out of his room without permission, so he unplugged it, and put it back into his room.  I was easily scared of everything and every villain of every movie, but yet, I watched Anastasia the movie that night and slept on the floor in a sleeping bag in his room. I heard a noise, a voice,“Jamie, go unlock the back door.” It was my parents; it turns out they had locked themselves out. I tried to shake Jared awake, but to no success; I was so scared that it was a bad guy, trying to trick me, but I did go unlock the door and luckily it was my parents; I later found out, my brother was faking sleep just to see what I would do; what a jerk! 

As I got into my teen years, he would be annoyed because unlike him, I had no “thirst” for knowledge. He felt I was “ignorant” and that was one of his pet peeves. He’d occasionally try to help me with math or science, but he’d end up confusing me more, and I’d get aggravated and snap at him. Other than that, we didn’t talk or hang out, mostly cause he was in college and I was still young and “ignorant”.  The only time I remember him smiling during this time was the one time he got drunk and “creepy”; we had gone to a wedding for a cousin, and then after we went to see a movie: Mom, Dad, my brother, his girlfriend, and me. I don’t know how this happened, but somehow I got this seat between him and his girlfriend; my brother started to hug me, smiling, and ruffle my hair: I wasn’t used to that treatment by my brother, so I looked at his girlfriend and said: “switch seats with me, I think your boyfriend is plotting to kill me.” Another memory around this time was when I was getting curious about my Ehlers Danlose and my brother who always had an interest in science, came to me and held a scalpel and said: “all I need is a skin sample and I can get you your answers.” I looked at him and yelled “I’m not a science project, heck no! I’m not letting you cut me with that thing, get it away from me, weirdo!”

It wasn’t until I guess that I got into college myself, that we started to have a different relationship. When I’d see him, he’d ask me about my classes and how they were going, he’d offer to help me out when I’d hurt with aches, etc.  He was there when I met Dr. Lenke for the first time, and he asked questions to Dr. Lenke. When my family did a benefit for my medical funds, he and his girlfriend helped out a lot. I guess what I am saying is, once I got into college myself, and wasn’t as “bratty” and “ignorant” he started to like/tolerate me, but it wasn’t until I got home from my St Louis journey, that our relationship got to what it is now; When I first got home, I had gotten a new computer and he was helping set it up. He had me sit next to him to watch, but he would ruffle my hair, and just smile at me; it’s like “uh…weren’t you suppose to ruffle my hair like that when I was 5?” Now when we see each other, we give hugs, no kisses because that’d just be too odd. He asks about how things are going in my life. I ask about his occasionally. We have a good relationship now, it was odd at first because I was so used to the tension, but I love it now. I know when I need it, my big brother will always have my back; Love you, Bro. 

Business, Businesses, Cutco, retail, Sales

Cutco Knives; David’s new business venture

jamiesjourney0591

My fiance’ David has always been told that he could “sell ice to Eskimos” because he has always “talked the talk,” and able to “sell anything.” Lately, David has been having trouble finding a job whether it be CDL Trucking, something in the oilfield, Construction, etc; it just seemed like luck wasn’t with him. Until he found this, he just starting it, and I think he can truly do well with it if he remembers the retail motto “The customer is always right.”
He is selling Cutco knives, which are American Made and 5-star quality. Check out his website down below 🙂

https://www.cutcoathome.com/DavidPiazzajr/?fbclid=IwAR21-6H5Efi_bhj_G6eF53kJjVUlN6OcQl31wtv3ESOLp4tXQTj3J1gh9Ws

Uncategorized

Skin Picking Disorder, head wounds, and cute puppies….

jamiesjourney0591

I have always had a habit of biting my fingernails ever since I was a small child, and when it came to scabs I would also pick my scabs (a lovely habit I picked up from my dad), but as of late (the last few years) I started pulling skin that cracks and peels around my fingernails, my fingernails when they crack/chip, and as of late I had a scab on my forehead that I picked at to the point that it is becoming a deep open wound. I had to put Bacitracin on it to keep it from getting infected, but when I am “bored” or my anxiety acts up or just my OCD saying “hey you have a wound on your head, pick at it,” there goes my fingers starting to pull at it again. I really wish I could stop this. I need psychiatric help. The only thing that helps distract me is my wonderful dog, Beignet.

head wound with bacitracin on it.

Nothing quiet like evening cuddles with my sweet dog ❤
Uncategorized

Emotional: Ode to Mrs. Z (Posted 2019- but she died in 2016)

jamiesjourney0591

Warning: I am about to be really emotional and sappy.
Mrs. Z, The director of Camp We Can Do until 2010, has been on my mind a lot lately. RIP. I miss her so much and she was a major influence in my life…

Imagine: Being an 11 year old girl with severe physical limitations due to Severe Kyphosis/Scoliosis and Ehlers Danlos Syndrome. Imagine feelings like you don’t fit in anywhere and that even though you have friends, you constantly question whether your existence is just a burden on your loved ones.

Imagine: Starting a new scary adventure; a summer camp, Something I had never done before aside from daily VBS for a week at Church. Even though, I knew that it was for Special Needs individuals like me, I still was stressing. I remember going shopping with mom for summer clothes; constantly coming out of the dressing room in each article of clothing, asking the same repetitive question “Does this hide my curve? Does my stomach in this? Do I look ‘Normal,” and God forbid if something I liked didn’t look good; Talk about “Dressing room Meltdown!” of locking myself in the dressing room, beating myself up by hitting myself in the face, on the arms, crying my eyes out because I just wanted to be “normal.”
The first day of Camp finally arrived and I was so nervous and scared, I didn’t socialize with anyone, I kept to myself, and didn’t want to participate in any of the activities except kitchen and arts and crafts. When the camp group activity (where the whole camp got together to participate), Mrs. Z Noticed I was not participating and when she tried to get me to participate, I cried like a little baby brat about “I don’t wanna,” and “What if they laugh at me?” It’s like come on, they have special needs too. Why was I so self-absorbed? So ignorant? I am so embarrassed was back then. Mrs. Z let me skip that first day group activity, but we had a “come to ” talk where she explained that I would eventually have to participate and try to make friends, that no one would make fun of me and if they did, they would deal with her. Thanks to her and camp we can do, I came so much out of my shell (at least there) and did things, I never would’ve done anywhere. I did the talent shows, the girl makeovers; I made wonderful friendships, and even volunteered as a counselor after I turned 18. Had I not met Mrs. Z who pushed me to realize I was not limited by my disability, that I just had to find an alternate route and the statement/Motto of Camp We can do, “Yes We Can!” Had I not met Mrs. Z and the wonderful staff who were encouraging and supportive of the campers, I don’t know how I would’ve turned out. Yes, my mom always encouraged me, but I always figured “She’s my mom. She has to say that.” Coming from others, it’s a confidence builder? I 100% confident and in who I am? No. I still have some work to do, but without Camp We Can Do, (and Shriners in St Louis later on), I don’t know what my life would’ve been? I don’t think I would’ve flourished the way I have since starting Camp We Can Do and meeting Mrs. Z. She pushed me out of my comfort zones to explore other aspects life. I wish she was still around to witness my life and accomplishments, but I know she is watching over me, and hopefully I am making her proud. God bless you Mrs. Z, (and I am tearing up writing this), I miss you so much! There is so much I wish I could just talk with you about. I love you and hopefully, I can make you so proud of me. ❤ ❤ 

There once was a lady who was sweet and kind, She worked at Camp We Can Do, For quite some time. Her name was Evelyn Zehner,But to the campers at Camp we can do, Her name was “Mrs. Z” And she was loved by every camper, Including me. She never saw a handicap or Disability, She only saw children, who wanted to have fun, But could also be held accountable for every misdeed. She treated us all “normal”, Never made excuses for us.But loved us so much, that was evident. We were all her babies, Like a parent, Even when we were misbehaving, she still loved us. Every Morning we were given “good morning hugs,” Right as we got in the door, running into her open arms,We loved our “Mrs. Z,” Sometimes, we’d get in trouble just to go sit in the office with her; Or others, like me,Would just sneak away from group and peek into her office, Until she would catch me, I can still hear her saying,“Okay Jamie, I need you to go back with your group.”It was said so often, it should’ve been stamped on my forehead. The days always ended the same,As children’s rides would arrive, the kids would hug Mrs. Z tightly, She’d squeeze them with lots of love, And tell them “Rest well for more fun tomorrow.” Or “Have a good weekend,” Whatever the case would be. She knew what the kids were capable of, What they knew, how they knew how to play “sympathy card,” She was tough, but she was loving; Firm but Fair. She was big on teaching life skills. She knew these kids, That others counted out,Could learn these life skills, And prove something to the world;That they could be something with the right dedication and discipline. Sure some times, her methods seemed extreme and harsh, Maybe “too hard,” on kids who already “had such a tough life,”But I cannot recount a single kid who ever held a grudge;They always would hug her, and still knew her love for them. We learned how to cook in the kitchen, There would be people who came in to read stories to us, People who came to teach us healthy eating, nutrition, hand-washing, etc.We’d go to library, museums, They would teach us how to do grocery shopping,She knew that special needs couldn’t always learn just from textbook and memorization, We also had to go out and experience it, And of course, try and fail over and over till we got it. But she never gave up on us; she never counted us out, Ever! Sure, she is gone, And we are all sad, But her legacy will live on, In the memories and love,The impact she had, On thousands of lives. Fly High, Mrs. Z, You took care of everyone here on Earth,Now it’s your turn to enjoy some pampering,Up in heaven; you have definitely earned your angel wings, Sweet woman. Long Live, The advocate, the disciplinarian, and second mama, To everyone, especially children and parents from Camp We Can Do.

It was in 2008, when we went to Kemah boardwalk for the Camp’s big field trip. I wasn’t riding any of the rides; just watching all the other campers having fun. Mrs. Evelyn ZehnerEvelyn P. Zehner was the one who told me “your parents didn’t pay all the money for the big field trip just for you to be a spectator.” So She encouraged me to try a ride. I got on a tower drop (not realizing that I was terrified of heights), and I never been so terrified in my life, but I also am glad I did it. (isn’t it funny how something can scare you, but you are proud of accomplishing it anyway)
Mrs. Z was always encouraging us to step outside of our comfort zones, and really thats what should be encouraged, because if we don’t, then how will we ever find out what we like or are good at …if we are counting ourselves out before trying, or scared to fail, then what kind of life is that? Mrs. Z had that tough love, but sometimes, that is the formula for success…not always the case, but sometimes. I think the lessons she taught us, and what many influential people in my life taught me, has influenced me into the person I am today. Yes, I still have some “kinks” to work out and smooth out, but for the most part, I am proud of who I am and I have Mrs. Z as one person to thank for that. 

❤ 

❤ 

Uncategorized

Lost… Who is Jamie Elizabeth?

jamiesjourney0591

My Mom used to say, that as a child, I had “a smile that was infectious and could brighten others days,” and I was an inspiration with how I handled my disability with a smile. However, over the years, between trying my best to fit in with society’s ideals/standards, trying to live up to what I was taught by my parents or CCD Religion classes, relationships with people I thought of as friends who turned out to be toxic (only to discover my true friends), relationships romantically, stress from struggles as a college student, and the struggles of living on and off with pain or other medical problems, I seem to have lost a sense of myself.

It’s like a constant battle between my heart, my brain, and the outside forces of voices from people around me. I am 28 and enjoy childish things like dolls, stuffed animals, playing games at the local fairs, I enjoy cartoons and childish movies, tea parties, parties, I get separation anxiety and sad when my friends have to leave; it is like I am still a child trapped in the biological fact that I am 28 and some people point it out and judge me and tell me, “You are 28, act your age.” But my question is, “Is it they are just jealous that I am trying to find joy in the things I have always enjoyed?” I am just trying to block out the darkness and cruelty of the world going on around me. It may make me ignorant, but I refuse to watch the news because it’s depressing and angers me, I rather “stick my head in the sand,” and tune it out, and leave it to God. When the world is so sad and depressing, who wouldn’t want to go back to the simpler times of innocence of childhood?

Don’t get me wrong, I still know some things I enjoy: Spending time with friends/family, parties, dancing, theater, crafts, creative writing, etc.; however, lately, I been really tired a lot and seem to stay in front of screen watching movies/tv or YouTube videos. It’s like I have no motivation or anything right now. I have wanted to do more blogging, more YouTube, more artistic and creative, but I just can’t get myself to actually do it, or how to put words out there.

Hopefully, I can rediscover myself again.

Uncategorized

One Mountain conquered, but life dealt me another summit to excavate.. *Latest Update*

jamiesjourney0591

People often say “The world is a rainbow of different communities spreading love and good, frolocking with others. There are the ones who are the pessimistis who see their world as a never ending burden of turmoil and misery, and then the type that are the “fakers”- The ones who walk around all jolly and happy and wearing a complete “mask” in public. That is me.

I guess you are probably wondering “what is this going on about? The title says ‘One Mountain conquered, but life dealt me another summit to excavate.” What I mean by this is, I had my surgery to fix the broken rods and it was a major success, however during that surgery another issue was discovered; an infection in my rods.

Below are my newest X-rays.

To combat this infection issue, a pic-line was placed in my left arm while I was at Barnes Jewish Hospital in St Louis, Missouri, and put on antibiotics via IV infusions for 6 weeks and then will be switched to an antibiotic pill indefinitely until the doctor sees fit to get me off said antibiotics.

A week after my surgery, on Aug. 21, I was discharged from the hospital to go back to my home in Louisiana so that Medicaid would cover my IV antibiotics; if not, We would’ve had to pay out of pocket for the treatments and it was $120 a treatment (6 weeks of treatments, 2 x a day- so $120 a treatment x2 times a day x7 days x 6 weeks = $10080, and then if we stayed in s Louis but not at the hospital (haven house)= $50 a night x 6 weeks at least = $2100..yeah, I think we made the better decision by coming home…LOL)

Now 2 weeks and 4 days post-op, I awoke to my IV tape rolled up, the pic line area exposed (I am thinking that I was scratching in my sleep). When my fiance went to clean it up and re-tape it, he noticed that the pic line was out more than the doctors like, so we rushed to our local E.R., Lady of Lourdes Hospital. Once there, they were swift about getting me to the back; a nurse, however, decided to remove my pic line from my left arm (which was covered in red splotches due to allergic reaction to the tape) instead of leaving it for the specialist to push it back in. Hours later, the specialist showed up and had to re- stick me for a new pic line in my right arm now, when she said that had the nurse previously not removed it, they could’ve just pushed my other one back in. Now I am back home and my right arm is sore and throbbing because the lidocaine sedative is wearing off and my muscles are aching.

Oh well, I did what I needed to do and I will “grin and bear” this burden I have to deal with for 6 weeks until I can switch to my pill version of antibiotics. I cannot wait for this darn pic line to be out of my arm, but all good things come to those who wait. I will pray for God to grant me patience to deal with it.

Uncategorized

Rewrite the stars- Greatest Showman song- relates to my relationship with my fiance’

jamiesjourney0591

Last night, I was on my pain meds and as usual the drugs made me a sappy, hormonal, emotional wreck; especially when all they do is make me tired and don’t actually help my pain, and as tired as I am, I cannot get comfy enough to actually go to sleep- which causes me to become irritable, frustrated, and emotional. Warning: Below, is how I feel on those kinds of days. You’ve been warned.

Don’t get me wrong, I do absolutely love my fiance’ and most of the time I cannot absolutely at all fathom my life without him, but on my really bad pain days when I am cooped up in the house on pain meds and can’t stand my own life, I relate to Zendaya’s lyrics of the song.

He is so positive and confident about us, and I am like that girl (because of my age difference and looking like a kid, and my disability- the “mountains,” and “doors can’t walk through”) and what the world thinks. and just waiting for him to realize that it is hopeless and impossible for us to truly be happy together. I am always thinking “he didn’t sign on for all these issues: Me hurting all the time, me lashing out at him because I am hurting and frustrated; because I’m irritable.. How can I expect him to love me when I don’t even love myself?”

Maybe he’ll teach me a thing or two, or maybe if I have such idle time, pay attention to the negativity.
It’s a lot of self-esteem issues and idle time, pain meds causing depression, being bullied from a very young age (5 years old)- it’s hard to escape the “voices” of my past, but I am working hard on it because I do love him and I know he loves me.

Uncategorized

A pretty great Sunday :)

jamiesjourney0591

I woke up with a minor migraine, but no level 10 pain today in my back- could’ve been that I knew Mom was bringing my sweet Beignet (my mixed-breed rescue dog) for a visit; ever since finding out about my broken rods, she’s been living with Mom due to my not being able to hold her leash for walks. Mom dropped her off around 10:30 a.m. (Mom went to Mass). 

Mom came back from Mass at about Noon and asked what David and I were doing for lunch. I said, “we have leftovers, but it didn’t sit well on my stomach.” Mom asked “what do you want to do,” to which I replied, “I know I always say it’s blasphemy to have Deano’s pizza without Dad, but…” Mom laughed and replied, “but you want it?” To which I nodded my head. She got a giant 3-type pizza like we normally do and it was delicious! She then left to go get things from my Uncle and Aunt’s house and was going to come back afterward to pick Beignet up to go home (She came back at around 4ish.) 

I got to spend about half the day with my sweet Beignet 🙂 We snuggled, practiced some commands, played with her toys, all 3 of us took a walk (David, Beignet, and I- David held the leash). Was a great visit with her, and I was ready to see her off at 4ish because I wanted a nap (didn’t want her to leave, but I knew she was gonna leave anyway- so I wanted to treasure the time I had with her). 

While Beignet was here, I had very minimal pain, but it must’ve been a distraction or something because a half hour after she left, I had to take my pain medication because it hurt really bad again. *Sigh* 

At least half of my day was good and sunshiny, that is better than nothing at all 🙂