In Jr. High was the time I back-sassed my dad in Lowe’s. First, let me explain that I was grouchy because I didn’t want to be there, to begin with, but yet I was forced to go with him. We were at checkout and we had roach spray, along with many mouse/rat traps. The clerk said some statement about: “you must have a mouse problem?” I replied: “Oh, yes! A lot!” My dad replied: “Jamie, we don’t have a problem; just an occasional mouse or two from the field next door.” But of course, Jamie with the big blabbermouth didn’t shut up until dad growing frustrated told me “Jamie, Stop.” Well, I was mad that he cut me off from telling my stories, plus the fact he forced me to come anyway. Once dad had paid for the stuff, he asked me to carry the bag, to which I replied: “Why can’t you do it; I’m not your slave.” Oh, you should have seen the vein in his temple throb, and his face turn red; I knew I had crossed the line: “No daddy, I’m sorry; don’t whip me!” as loud as I could in Lowe’s, not realizing that if anyone heard him, they could report him for “child abuse,” when he was just disciplining his child. Boy, was my dad embarrassed and furious! I think if my child ever did that to me, I would have whipped them when we got in the car! I was so scared that I didn’t get into the front passenger seat, instead, I got into the backseat on the floorboard; trying to avoid my Dad’s wrath! (He still loves to hold this story over my head! LOL)
Due to the severity of my Scoliosis/Kyphosis, in summer after 4th grade, I had my first bout of Pneumonia. For those who may not be aware of everything that Scoliosis effects, here’s a health lesson; it’s not just the spine. Sure, the definition is “Lateral curve of the spine,” but it all depends on the severity. My Scoliosis became what is known as Kyphosis, “Hump Back,” and is multiple curves, whereas Scoliosis is just one curve. The more a spine curves, the more it can cause other internal problems in important organs such as the heart, stomach, lungs, etc. Before my surgery in 2012, my lung capacity was 18-20%, I had ribs twisted around my spine, a lot of stomach problems, and problems that were never diagnosed or discovered until my pre-op visit or after surgery; (How weird is that?) Anyway, I was almost finished with my week of Summer VBS (Vacation Bible School- a weeklong camp that is put on by local churches/religions), when the Wednesday night, I started to develop a cough. Mom took me in to see my pediatrician, and he said, it had started as a typical “summer cold,” and due to my hatred of shots, my doctor just gave us cough medicine. The medicines, however, did not work, instead, my cough progressed until I had a “popping” in my back every time I coughed. I say Pneumonia, but it might’ve been bronchitis that was turning into Pneumonia, I don’t remember exactly what the doctor had told my mom, other than the fact I needed a shot; that memory stuck with me!
We went down to the pharmacy that was in the same plaza as my pediatrician’s office and as soon as we got back to the doctor’s office and I saw that needle, I had a full meltdown in the doctor’s office, to the point where mom had to hold me down. Normally shots are given in the arms, or the butt, right? Mine was in my legs because it was the only spot on my body that had “any meat” on me. You should’ve seen it, mom holding me in her lap, me tossing and turning, her having to trap my legs under hers so I wouldn’t try to kick; I laugh now that I think about it because shots aren’t that bad anymore, sure they are unpleasant, but really a quick pinch and then it’s over.
After the shot, I was crying and telling my doctor “I hated” him and how “he was so mean,” being a total brat, but by that night, I felt like 50% better. Shots may suck, but you feel a lot better afterward because they work quicker than medicine. Life is a lot like a shot, there are changes we don’t like or can’t deal with, we cry and boo-day about it, but it doesn’t change the fact that it is going to happen; it’s a slight “pinch” (shock/anger/sadness, etc), but then we adapt to it and are over it.
I have always been an animal lover: I got my first dog (although I don’t remember him) at infancy; his name was “Fred” and he was a black lab. He ran away when I was 2 years old because Mom had put him outside because he had gotten too big. We had other dogs when I was in pre-k, but I don’t remember them well: What were their names, etc.? When I was about 5, I got a mixed dog and named it “Ladybug”; don’t ask me why? I think I was aiming for Lady from Lady and the Tramp, Who knows. We also got our mixed dog (part Rottweiler part German Police dog), Cajun for my brother Jared; that was a good dog! She was gentle and calm with kids/ mostly me, she knew lots of tricks: like you toss a ball in the air and she would catch it. She let me ride her like a “pony” because I kept bugging Dad for a pony, and he said “Cajun can be your pony” and I said, “But she’s a dog!” By age 10, Cajun figured I was too big to ride her anymore and would sit when I’d try; so I would just slide off of her. LOL. We also dog-sat for my Nanny; her dog was a Cocker Spaniel mix (I believe) named Freckles, but the dog ran away. Shortly after, Lady Bug ran away too and I remember telling Mom, “Lady Bug is going find Freckles; that’s why she left!” I felt so bad about losing my nanny’s dog; considering at the time she had just lost her father, her husband, and her only son all in that same year; I offered to buy her a new dog, but she refused.
We also had dog-sat my “Poppee’s” dog, Pumpkin, but Pumpkin got into the front yard and got hit by a car on the highway. We also had some cats: An orange cat I got in kindergarten that I named Toulouse because I was obsessed with Aristocats movie; sadly that kitten got out of our garage and as Mom was pulling into our driveway, she accidentally ran him over. I remember I cried and said “It’s all your fault,” Sorry about that Mom, but I was 5. LOL.
When I was 6 years old, my favorite cousin Christine called Mom saying she had found a white cat with blue eyes at a gas station; Mom had been wanting a white cat with blue eyes, however, this cat had green eyes that looked blue in certain angles. We took it home and I named her “Snowball” because she was white and fluffy. I loved Snowball, but she, despite being “fixed”, still ran off with a stray male cat; however, I think someone might have picked her up and kept her because we had a collar and tags on her. After Snowball, when I was in 2nd grade, Dad, and Mom found 2 baby tabby kittens that couldn’t lap milk yet; Thinking I was still asleep, they both agreed “Don’t tell Jamie,” because I would want to keep them. Well, I heard them and ran outside to see what the secret was. They were named “Tuffy” and “Tweety” because I thought Tweety was a girl, I knew Tuffy was a boy; however, they both turned out to be males and had to be put outside due to peeing outside the litterbox. While they were kittens, they would trample over my Barbie stuff so we’d say “Ahh, the fuzzy gorilla kitties are attacking! RUNNNN!” We also had to bottle feed them for a while; they would bite and claw, so mom would wrap them in a towel to feed them; Dad often said: “That Mom didn’t come back because these little sh*ts were abusive while feeding; She ditched them!” LOL.
In 3rd grade, after a misunderstanding at Durell’s pet store at the mall leading me to fall in love with a dachshund puppy (despite not being able to afford it from the pet store,) I eventually got a dachshund puppy named Oscar. Oscar had been bought by one of my neighbor’s friends’ for their toddler, but he was too hyper for their child and for $150 he became my dog. He was a “horny little Weiner” because he would often hump legs or try to “get with” my brother’s big Rottweiler/German Shephard mixed dog, Cajun. As he got older, he became more aggressive and would “snap,” and bite people. He, however, was like Mom’s shadow- he loved mom and followed her everywhere.
In 9th grade, for my birthday, I got a kitten from one of my neighbors who’s cat had just had kittens(they were outside and the siblings eventually got drug off by a wild animal- coyote or hawk or something). I named him Taz (Tazmanian Devil) because he and my brother’s ferret, Spaz, played together (Spaz and Taz.) He loves my Mom and my brother, but cannot stand me and my dad; he is also very antisocial and “demon spawn,” but I still love him or try to.
In 2010, a stray beagle fell out the back of a pickup truck as we were going out to eat and we picked her up, but by the time we got her into the car and got stuck behind a red light, we had lost the truck. We took the beagle home and ran an ad in the paper for a week, called shelters and vets to put flyers, etc. but no one claimed her. I wanted to keep her and named her “Mya” because Oscar tried to “get with her,” so “Oscar-Mya” (Oscar Myer).
In 2016, After losing Mya to a terrible accident on the road, I told my parents I wanted a new dog for Christmas, however, I got the “present” early in August when I found a cute puppy listed as a beagle mix on a shelter group on Facebook. Her name was Beignet and she was about 4 months of age at the time. 4 years later, and I can say she is one of the best dogs I ever owned. She is my best friend and I love her so much- she makes me laugh, brings me comfort when I pet her, loves to play, cuddles/snuggles, etc. Although we suspect she is an American Foxhound (mix or purebred unknown) because she is bigger than a beagle and many in public ask if she is, so we researched it, and found she has mannureisms and appearances of an American Foxhound. Whatever her breed, she is the best dog friend ever.
Those are just a few examples of my love of animals; there are many more stories that I could share, but I will spare you; for now: P lol. I am an animal lover: My dream is to own a lot of lands and has many cats and dogs, some ferrets, some bunnies, maybe a few hamsters, even a horse. I want my future children to love animals as much as I do; animals can be great companions and quite therapeutic and relaxing to just snuggle with them. ❤
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.
I try to usually be a pretty positive person, but like we are struggling financially. The mattress in our bedroom is killing both me and my fiance’ backs so need a new mattress (plus I am still paying this mattress off, 4 years later.).
I dropped my laptop a few weeks back and ever since, have been having to use HDMI cable and tv as a monitor because the screen doesn’t wanna turn on and the last few days, the laptop is starting to show signs of dying worse off. (My fiance says he will build me a desktop pc, so hopefully, my laptop can hold off till then or I can afford to get a keyboard accessory for my Ipad Mini tablet. (I will need one eventually when I go back to college classes.) Since then, my laptop has stopped working with HDMI and my fiance’s cousin is looking into fixing my laptop and since its family, I probably will get a discount but will still cost sadly.
Then finally, I feel like I am straining my eyes more and more each day, even with my glasses. I cannot afford to go to LensCrafters (they don’t take Medicaid) at the moment. Sometimes I think I should just bite the bullet and just get the fricken laser surgery, but I am also scared to do it.
I hate ranting and venting, It just gets overwhelming at times…
Also, Shane Dawson, a YouTuber I have been following since the beginning of his career 2008, and Jeffree Star (who I just started following last year on youtube) collabed and made a makeup collection together and I cannot afford it and I am legit sad and disappointed about it. I just miss being able to afford all the things I wanted. But no, I gotta “adult” and pay for college out of pocket, pay for bills, and rent (thankfully after March that will be done..the rent anyway.) Things will get better, this is just a bump in the road. With God at the helm, I am positive we can make it through any rough weather. ❤ ❤ ❤ God’s will be done.
I have a lot of dreams and ambitions, even despite having a severe chronic physical disability/handicap, but with the right amount of patience, determination, willpower, confidence, hard work, and God almighty at the helm of my life, anything is possible.
I will pick one thing at a time and will try to accomplish them all eventually, but one at a time.
When I first began my “adventure” as a college student, during my second semester I met a professor that would change my life for the better. It isn’t very common that students become friends with their professors and the professors’ families, but that is exactly what would happen to me.
This professor was a history professor at LSU-E, Dr. Tony Baltakis. When I first started his class, I just went to class and loved it because he made history interesting; I also liked how “if you tried,” he’d “work with you,” and try to help you as much as he could. Other than that, we were just a student and professor, nothing unusual. Until one day, the elevator was out of order and I needed it due to my physical limitations and the fact I used a rolling backpack (which doesn’t mix too well with stairs,) “Dr. B” as we often called him, saw me as he was heading to the staircase and asked if I needed him to “carry my bag and me,” to which I laughed and told him, “I got two working legs, Dr. B, but if you could bring my backpack for me, that’d be great.” Turns out his wife, Mrs. Donna, had Polio and had limitations as well, so he seemed to have a “soft spot” for those with special needs. After that, when he’d see me around campus, he’d joke and pick at me, “there’s my girlfriend,” to which I would pick back, “you better watch out, Dr. B, I’m gonna tell Mrs. Donna on you,” hile laughing.
His birthday was the end of the fall semester in December, and I got my mom to bake him some yummy treats (to share with his family if he chose- after all, it was mainly for his birthday) but Mom put in extras for Christmas treats, as well (Yes, I know, My mom is pretty awesome LOL.)
Dr.B’s teaching methods involved putting his powerpoints up online for the students to print out or to use their computers to add in notes he gave in class that wasn’t included in the power points, he also would review what material our tests would cover, he’d go over the guidelines to the way he wanted our book reports done, and he had an “open door,” office policy- if students had questions, he’d allow them to ask in class or if they were “Easily embarrassed,” after class/ during his office hours. As long as he saw students giving effort, he’d “work with them,” offering bonus points for certain things that encouraged learning (museums and such,) or for attending the performing arts performances through LSU-E that He and his wife were in charge of.
He only had a couple of “pet peeves”: playing with phones during his class, heads down on the desk, or some falling asleep during his class. I only saw one or two students get tossed out of class when the pet peeves happened. Dr. B would often say that he didn’t mind students debating if they had a difference of opinion, but I saw plenty of times he’d get on his “soapbox,” as we called it; I think some students would debate him just so he’d get on the soapbox and waste the class period.
Whether it be him on a “soapbox” rant or his actual history lesson, it kept my attention either way. He wasn’t like some professors who try to force their views down their students’ throats; being a professor of History; he’d present both sides and the history behind them. It was really interesting.
To Be completely honest, before college, I wasn’t at all fascinated with history, but after the first history in college, with Dr. B as my professor, I went on to take 2 other history courses that he also taught(1 of which wasn’t required for my degree.)
A year or so later, I had to go up to St Louis, Missouri to have halo traction and back surgery
for my severe Kypho-Scoliosis (159-degree curve, 18-20% lung capacity, and my ribs had twisted around my spine.) I spent 7.5 months in halo traction and 2 or so months for surgery and recovery in St Louis; Miles away from my home, family, friends, and loved ones. Dr. B and Mrs. Donna often wrote to me either letters in the mail, email, or through Mrs. Donna’s Facebook; following my updates on my health progress and such, sometimes they were also my “pick me up” when feeling down or upset and would give me encouragement or advice.
When I got home after surgery and resumed my college courses, upon seeing me for the first time since I had my surgery, Dr. B, hugged me and was amazed at how“straight” I looked now and that I had “gotten taller.”
Even though I am no longer at the college that he teaches, we still keep in touch. Even when I struggle with courses and have moments of doubt and wanting to give up, he and Mrs. Donna, are there to encourage me, support me, and remind me that maybe I can do my dreams differently. I am pretty sure (actually I know for a fact,) if I straight up quit college altogether, he and Mrs. Donna would be on my case like a lot of my family and friends, to which I appreciate and love them for. Mrs. Donna often asks about me and college and reminds me, “Dr. B and I want you to get that degree!” I just love having my own little cheering section in my life outside of family (Family kind of has to support you. lol.)
Dr. B, about a year ago, got into a motorcycle accident and got badly injured. Upon seeing that on Facebook, I was instantly heartbroken and upset that something like that could happen to such a loving, great guy like Dr. B.
When I had time and a ride to bring me (even though I drive, I been having more increased pain lately due to some rods from my surgery being broke-since then have been fixed with new surgery Aug. 2019,) I went spend an hour or two visiting with him. It was so good to see him, even though he had a cast and looked like he was in pain.
If anyone is deserving of a Teaching Excellence Award, it is Dr. B.(Actually he deserves alot of awards and praise not just for teaching!) He not only makes history enjoyable and interesting, but he taught me a lot of other things too: compassion and empathy for others, to help your fellow man or woman, not to “count myself out,”/ to have confidence in myself despite my limitations, the list could go on forever, but you all get the idea; he’s a dang-great professor and an even greater family-friend.
I love you, Dr. B and Mrs. Donna! Thanks for being such an amazing part of my life. PS we are due for a catch up visit. Lets do a dinner get together soon; My fiance and I can cook and we can just chill out and catch up! It’ll be fun! ❤ Anyway Love yall so much and have a great day and hope this makes yall day ❤ Hugs!
Backstory: I was a Shriner’s patient for about fifteen and a half years of my life. Since I was young, all I could remember the doctor saying “We’ll wait until she hits puberty and then see from there about a surgery.” Well, what they were waiting on was to see if my spine would grow. (I had a fusion at two years of age and as my spine would grow, it was supposed to correct itself; well the spine didn’t grow, instead, it kept curving.) When I finally reached puberty, (which was about fifteen or sixteen years old, being a “late bloomer” is so much fun! Not! Haha) the doctors changed the story to “nothing else can be done without paralyzing her.” Well, can you imagine being told that you were going to have this huge hump on your back removed once you became a teenager and hit puberty, then suddenly the story changed and you would now be stuck with it the rest of your life? My heart broke, I cried like a baby; it’s a good thing that one of my besties was there and we went a walk to calm me down. At seventeen and half years old, I got discharged because Shriner’s is a children’s hospital and my next appointment would’ve been after I turned 18 years of age. Since that time I hadn’t been to an orthopedic doctor (almost 2 years), and mom was worried, and she heard good things about Dr. Williams in Opelousas.
My Scoliosis Journey in St Louis, Missouri began on Jan. 2011 after a referral from a local orthopedic dr to go see Dr. Lawrence Lenke (who has since moved his practice to New York,) because my Scoliosis was “too complicated” for the local dr, and “looked like a rollercoaster” (Try living with it, dude!) It usually took a year to get in to see dr. Lenke, we got in within six months!
The initial meeting with Dr. Lenke was very emotional. I really cannot “sing his praises” enough! He saved my life! When he came into the room, he smiled and did the usual doctor stuff: reviewed my x-rays, feeling how uneven my hips were, traced the curve of my spine with his finger, the same old routine to me- I could probably do it in my sleep! Finally, when we talked, I had questions and he answered them politely, honestly, and kindly. There were some I didn’t ask because I am sometimes shy (not very often, but it does happen occasionally: especially if the questions are embarrassing) and were embarrassed by some of the questions. He saw I was hesitant and took the list and read over the questions and gave me answers. He didn’t laugh or make any rude remarks, he made me feel like there were no “dumb questions.” When he was talking he wasn’t saying “if” he could do the surgery, he was saying “when’ so that just filled me and my mom with so much hope that once Mom and I were out of sight in the bathroom helping me change out of the hospital gown, We hugged and both cried it out in the bathroom: Bawling like 2 big babies, but these were different than the tears I shed at Shriners in Shreveport at 17.5 years of age; these tears were happy tears of joy! Mom and I had gotten our hope back! Imagine, being told that you would have this Scoliosis hump the rest of your life and then come to find out, there is actual hope! However, I had a choice to make, take the risk of paralyzing from surgery that could save my life and not paralyze me..or leave my Scoliosis to get worse and end up paralyzing me anyway? I chose surgery, although my dad originally thought it was for “vanity reasons,” however, he realized how bad it was when he saw the model Dr. Lenke had made of my spine before my surgery; his response was “That was in my daughter!!!?”
However the following December 2011, my original pre-op appointment, things were emotional again, but for a different reason. It had been a long day (12 hours to be exact) of MRIs, Xrays, CTs, getting poked with needles for bloodwork, doing a PFT(Pulmonary function test), and finally at 8 p.m., I saw Dr. Lenke. He was a bit more apprehensive this visit; My ribs were twisted around my spine and my lungs were pretty much being crushed by my spine and my lung capacity was 18-20%. He moved up my Halo Traction date to Jan. 5, 2012 and told me I could be in traction for almost up to a year and still possibly not have surgery. So Once again, I broke down crying. However, the next day, I had a visitation at Shriners Hospital St Louis- where I’d be spending time for my Halo Traction stay and the care coordinator for Dr. Lenke, Joetta Whorton, helped restore my hope. She was all, “We’ll get those numbers up, you’ll have that surgery. Don’t you worry!” By the time I left that meeting, I had cheered up about 50% because of her words and all the nice staff, and all the fun I was promised in the recreation dept. Sure I was still apprehensive, and scared, but I knew I didn’t have much choice if I wanted to try to fix my back. I was also excited because with recreation, we had to do weekly projects and I figured it’d be an opportunity to learn cooking and some other stuff I had been wanting to do, but due to being at college before, I hadn’t had time. Another wonderful person I met that was optimistic about “getting my numbers up” in pulmonary was respiratory therapist, Wendy, who even gave me an I.S. to practice with a month before I was due to start traction.
I left my hometown of Opelousas, Louisiana, bright and early January 4, 2012. I left my family and friends and had no idea when I’d be back and see them again (I even stopped to visit my bestie, Amber, before leaving because she had something for me; She was tearing up but trying not to cry and so was I, but as soon as I got into the car and opened her gift and read her card, the waterworks started). I don’t remember what time we finally reached the hotel (Haven House) after our flight, it was dark I know that and had to be up at 4:00 a.m. and be at St Louis Children’s hospital around 5:30 a.m. for the halo placement procedure, but of course, anxiety made falling asleep a challenge, but eventually, it happened, and I did not want to get up to dress in the morning, so I went to the hospital in my PJs; I’d have to put on a hospital gown anyway!
By 5:45 a.m., they did all the pre-halo surgery stuff- weight, height, peeing in a cup, taking my temp, having me change into the hospital gown, etc., etc.. At about 7:30 a.m., they took me to the back (operating room) and started prepping me—IVs, etc. By 8:10 a.m., I was out of the halo surgery and recovering well. I was able to drink some 7up and wasn’t nauseated at all, I just had a really bad, throbbing headache; Then again, if someone was drilling into your skull, you’d probably have a headache too! By 11 a.m., I was recovered and out of Children’s Hospital and made it to Shriner’s Hospital to begin my journey with traction. I did eat some lunch because I was starving, but I had gagging and nausea later on, but later that night, I was up and about socializing at “Great Lengths club” (A thing they have at Shriners for Lengthening devices- Halos, Taylor Frames, etc), eating pizza and socializing with some of the others there who had Dr. Lenke as a Dr. also.
Mom stayed with me until the following Sunday and then she had to go home; That was so hard for me because not only was I going to be alone in an unfamiliar place, I’d have to be “my own advocate” and tell the nurses what I need, but I also had some pain and nausea still from the Halo Placement and I had taken a Lortab for pain which made me sleepy, but I had to be in traction and couldn’t sleep all day long which made me irritable and emotional. For 7.5 Months, Mom traveled back and forth 3 weekends out of the month to stay and visit with me, and then after surgery, 2.5 months with me; God bless this woman I call my mother!
Despite being far away from friends and family in Louisiana, I made many memories and new friends in St Louis while experiencing this life journey. Sure, some nurses and I clashed heads; but most of them, I got along with. Some of my new friends include all the nurses/caretakers at the hospitals…Joetta Whorton, Naomi Thompson, Kathy Blanke, Donelle Sherman–the main four women on Dr. Lenke’s team that I spent a lot of time with, along with all the nurses/ recreational therapists/respiratory therapists(especially my “personal Hitler/drill sergeant,” Marcela Spraul, her respiratory team—Wendy, Stephanie (who no longer working there), Jodi, Terry, Ruby(no longer working there); Many of the nurses: Carol and Pauline (my first two nurses), Dottie, Pam, Lisa, there was a nurse Melissa, a nurse Valerie, a nurse Amy, Nurse Nancy(who was like my best friend RIP dear friend), Tina, Denise, Charity(my “sister” because we bicker so much), Rachelle(no longer working there), and many more! Kate(who’s job I don’t exactly remember the title of LOL- sorry Kate!) and Lisa who was with housekeeping but is now working at Barnes or Childrens of St Louis. Leighton who worked in Pharmacy: he liked to tease me about my LSU tigers and when I’d wear my LSU shirts, and he once brought me a whole Red velvet cake when I joked with hi about wanting it: it was the weekend and he was telling me bye-
L: Have a good weekend Jamie, is there anything you need for a great weekend?
Me: Well, It’d be a fantastic weekend if I’d get some red velvet cake
needless to say, that monday, he walked into my room with a whole red velvet cake and told me “This is just for you, you cannot share with anyone.” However, with the small stomach I have, I had to disobey his orders of not sharing. LOL
I also made friends with the Physical therapists-too many to name, but the main ones—Becky (Shriners), Patti (Shriners), Tim and Rachel (Children’s). All of the staff in Recreation department: Jen, Barb, Kerry, Laura, and the others that weren’t as frequent; they made Shriners stay more enjoyable, entertaining, and tolerable. All of the Xray team, but especially Melissa because we pick, fight, and bicker like sisters. Lol. All of the cafeteria workers but especially Sylvia, Andy, Marsha, Mrs. Ann (dietary specialist) who always went out of her way to get me snacks that the hospital normally didn’t carry. And of course, Dr. Weatherford the psychologist who was often my sounding board for all my emotions 🙂
As I said, lots of new friends and not even done, sadly due to all the meds and time that’s passed, I have forgotten some names of the ones I didn’t have as frequently and feel so guilty for that! 😦
I also made many of new friends in fellow patients: Sechaba Kershner, Blake Zaunbrecher, Nicole Rodman, Kamille (can’t remember her last name, sorry ‘Mille), Heather Langley, McKenzie Burke, McKenzie Miller, Jeanette Salinas, Elora Pasley, Ali McManus, Courtney Mashburn, and some other fellow patients and all their families. I also made special friends with my dentist back home’s brother and sister- in- law, Mr. Steve Chachere, and Mrs. Denise Chachere; they took great care of me when Mom wasn’t able to come up to St. Louis to be with me, they took me out on out passes, and just made me feel part of the family. A few other new friends I made were from the group Cabela’s that came to the hospital once a month to do crafts with the kids; Mr. Mike James(RIP), his wife Nancy, and Beverly-Barney-Duvall (and I later made friends with her husband, “Doobie”.) Mr. Mike and Mrs. Nancy came a few times to see me after my surgeries at Children’s Hospital too. Beverly and “Doobie” hosted me in April 2014, when I went to St Louis for a visit and not a medical appointment. They also hosted Mom and me in August 2014 for a medical appointment/ as well as a “reunion” at Shriners Hospital for their 90th anniversary/birthday thing. I love you all and I don’t know what I’d do without every one of you all in my life! ❤
During my long seven-and-a-half- month stay at Shriner’s Hospital of St Louis, there was some staff I clashed with, but for the most part, I got along with most of them. I would give each of them a personal shout out, but that would take a book in itself; so many wonderful staff and precious memories, so I will just name a few so you can get the idea of how awesome the hospital is.
One staff member that I loved to give a hard time was the respiratory therapist director, Marcela Spraul. She had a specific way she wanted my respiratory therapy done and I didn’t like her way; I found it more difficult and I was proud of my way because I got higher numbers. One day I told one of the respiratory therapists that worked under her, “Thank goodness, it’s not Marcela; she is like the Hitler of respiratory therapy!” Well, let’s just say word got back to Marcela of what I said; guess who was not only my wake up call but also my respiratory therapist for the rest of the week; Karma is so funny….not! *rolls eyes*
Marcela may have been tough, but she was fair and she also cared a lot for all of her patients. She would tell the parents, “When they are here, they are my children also.” She visited me like two or three times after my surgery at Children’s Hospital of St Louis, which was a different hospital than where she worked and almost a 15-minute drive away from each location. (My only regret is that I was too drugged up on pain medicine to know if I even interacted with my visitors after surgery.)
I loved to give a hard time to a nurse named Charity; she was like a big sister. She (Charity) always would greet me, “hey trouble,” to which I would reply, “why are you talking to yourself, Charity?” We loved to bicker; it was like having an older sister.
Another staff member that was a major influence on my journey, was my Care Coordinator, Joetta Whorton. Joetta loved to mess with me, but I would give it right back to her. I would sneak downstairs to Outpatient Clinic (where her office was), and sneak up behind her. She, like Charity, loved to give me the nickname “trouble;” Hey I accept it; I am trouble…..sometimes. Despite her calling me “Trouble,” I know she loved and cared for me because when I had my broviac central line procedure, she was going to stay with me since my mom wasn’t up there with me. To Joetta, You are an important asset to the hospital all the years you have been there. You’ve changed millions of children’s lives just by being a care coordinator; you are like a second momma to thousands of children. When you had retired for that short little time, I felt that the future Shriners’ patients were losing out on not knowing a terrifying (just kidding…terrific), warm-hearted, funny, fun, and caring woman; that you would be greatly missed by those at Shriners, and I was worried about miss seeing you in the clinic when I go by Shriners to visit. But, that wasn’t the case; I kind of had a hunch that you would go bat-s**t crazy in that house with nothing to do! LOL. I always hold the memories of Shriners in my heart. Especially sneaking off the second floor to go harass you in the clinic. I remember I had gone to lunch with Dr. Weatherford one time and Joetta had been looking upstairs for me. She comes in the lunchroom and said: “I’ve been looking all over for you, trouble.” To which I replied, “And I’ve been avoiding you!” LOL 🙂 That was during one of the first few weeks I was there.
As much as they gave me heck, tried to “push my buttons,” I gave it right back to them! Can’t keep this girl down; She is hell on wheels! HAHA! Now, years later, Shriners Hospital is no longer on Lindbergh where it was when I was there: They have moved locations and the move cost some their jobs, and a smaller facility. I am not happy about their location move, but if it helps more children and keeps up the mission that Shriners was founded on, then I can’t complain; Plus the new facility is nice looking, but it’s just not the “Shriners home” I had for 7.5 months and visiting my Shriners people who are still employed there, it makes me a little heartbroken because some of my people have left and I have no way of contact with them. (Cue the sad music and tears, LOL.)
Surgery and more: On August 16th, 2012, my life took a turn and changed forever. “Why?” You may ask; well that was the date of the first phase of my surgery and the beginning of a long journey. The surgery was a long 12 hours under anesthetic; there was a problem with the Broviac central line: one of the lines had been cut, days before, and the anesthesiologist was worried about the clamped/cut port, so they had to remove it and put in a pic line before starting the surgery. The first two and a half weeks post-Op were difficult; I pulled out my breathing tube, got a bad respiratory infection, got pneumonia, and ended up having to have a trachea inserted; which was still inserted when I returned home on October 15th, 2012 and was removed on February 21st, 2013. The second phase of surgery was commenced on September 20th, 2012. This surgery was shorter and I was only under anesthetic for six hours. Fewer troubles for this surgery (PRAISE GOD!)
Despite the pains and struggles, I had to get up out of the hospital bed and do therapy. No matter if I was crying and hurting; I had to do my therapy, walking with the walker, and using a ther-a-band to build up leg/foot and arm muscles. Some people might say: “How heartless are those people?!”; “That girl was in pain!” but my mind thanks them. That pushing has been the fiber of my being throughout my entire life; it is what has made me become the successful, independent person I am. Without that pushing, I might not have graduated high school or gone to college or even had the urge to do this surgery.
During the recovery time after my surgery in 2012, I had a lot of issues: I had pneumonia right after the first surgery and ended having to get a trache, I pulled out my breathing tube, I had a terrifying nightmare while I was sedated for 2 weeks straight(Due to pneumonia,trache, etc), I had a seizure due to a mucus plug, They thought I had C-Diff (a type of infection), and then after the second surgery I had developed a pressure sore. You probably read all that and think, “Damn, this chick has been through hell and back,” but there are other memories that I’d like to go more in-depth with at this time.
During my time in the hospital between surgeries, I had very odd dreams probably due to the heavy narcotics I was on.
The scariest dream was after my first surgery, mom says some parts of it are probably things I overheard during those first two weeks; it’s a dark living room setting, nurses and student nurses are surrounding me. I was strapped to a recliner and it’s in the bent back position. A funnel is in my mouth and I’m being force-fed narcotics after narcotics. When Mom comes into the room, the nurses lie to her saying “she has become addicted to the drugs, that’s why she is crying and shaking; we are detoxing her,” but as soon as she’d leave the room, they’d turn back to forcing more meds into my system. The last thing I remember from that is watching the monitor beeping and thinking in my head “I’m dying.” Parts of this dream are true, from what mom tells me; the part where I looked at the monitor and said: “I’m dying, “apparently I had done that in real-time too; turns out the nurses had unplugged my pulsox machine and my o2 (oxygen) had a huge question mark on the monitor. Another true part of the dream was when they said I was detoxing, mom claims she said my actions were that of someone who was detoxing, and she said I probably overheard that while I was still in “dream mode.”
I also had trouble with distinguishing dreams from real life; poor mom never knew what to expect to come out of my mouth when she came to my bedside: From Dr. Lenke is a spider, but a good spider, to “I saved Atlantis from drowning;” TV and good drugs just don’t mix, or they do, depending on how you look at it. Some happier dreams I remember having while in the hospital included: Me helping save Atlantis from drowning under the sea, I helped Puss in Boots and Humpty Dumpty, and I even dreamed that Dr. Lenke, my orthopedic surgeon, was a spider, but he was a good spider; not a bad spider that bites people or lays eggs in people’s brains when they are sleeping … Hey! Maybe that’s how I helped Humpty Dumpty, maybe I took him to see Dr. Lenke the spider to put him back together again; I guess the world will never know, what “Spidey” powers Dr. Lenke could have! HAHA!
Another memory that mom loves to laugh about was the “I want to lay in the bed like a normal person,” meltdown. I had PT twice a day, but due to all the equipment, one day, they had to move my bed, to get me out of my room. When we’d return, they’d put me back in bed, make sure my body was aligned and straight, asking “are you straight?” Well, I was high on pain meds, so the only way I could tell was by looking at the ceiling, and if the tiles were straight, then I was straight, but due to my bed being crooked that day, the tiles were crooked despite my body being straight. I told them “no,” so they kept trying to adjust me, and asked me again and again, “are you straight now?” By the third time, I’m getting frustrated and emotional, I snapped. “I JUST WANNA LAY IN THE BED LIKE A NORMAL PERSON!” Tears streaming down my face, and I’m starting to hyperventilate. Mom tries to calm me down, “Jamie, we are working on it, calm down…it’s okay.” She notices that I’m looking up at the ceiling and once again she laughs as she tells PT why I am not straight.
Another memory was closer to discharge time when I had that pressure sore. Dr. Lenke would come in at the early hours of the morning to do his rounds. He’d come in, roll me onto my side to look at the pressure sore, then take notes, then leave. One morning he was running late, rushed in, and practically flipped me by grabbing the sheet to roll me, quick. When he walked out, I told mom, “I feel like a fish or a hamburger, he just flipped me!” She just laughed cause I was so funny on my pain meds; no filter, but that’s me in real life too! HAHA!
During the hospital stay, something was going on in the park across the street called the “Forest Park Balloon glow,” and we had a perfect spot to see it: 10th floor of children’s hospital of St Louis; Too bad I was “high as a kite,” on pain meds and had no interest in it, but mom enjoyed it (Finally something Mom could enjoy for herself and not be “all about Jamie” LOL). We had some friends that we made while in St Louis, who came and brought food to watch with us, the nurses had turned my bed to the window and even raised me almost as high as the ceiling to watch it; but no, I had to be passed out sleeping from pain meds! At least, Mom got something enjoyable out of my hospital stay, the poor woman some days looked like she hadn’t slept a wink! I even told her one day, “Mom I feel sorry for you,” she was like “why?”, and I said while touching her face, “you got bags under your eyes, you look tired!” What can I say, I love my momma.
Also in St Louis Children’s’ hospital, I didn’t have much appetite but they wanted me to eat, so one of the nurses or rec people knew the chef, and asked him to come up and ask me if I was hungry for anything specific that wasn’t on the menu. The joke was he was my “personal chef,” his name was Chef Rob and he went out of his way to help me eat even when I normally wasn’t hungry. He made attempts at Louisiana cajun food and it was pretty good for being out state, had the right amount of seasonings, however, his “rice and gravy” was very skimpy on the gravy, and his “gumbo” was about how we do our “rice and gravies” back home; however, his fried okra was amazingly good. He also made me lobster stuffed mushrooms, YUM! He always went out of his way to make me feel happy and want to eat. Thanks, Chef Rob!
Another funny memory was with Tim, the Physical therapist. We did my walking but also went walk downstairs near the gift shop for some “retail therapy,” as mom calls it. Near the gift shop, there is a fish tank, and let’s just say pain meds and a girl with no filter, watching fish in the fish tank chasing each other, not a good idea for a children’s hospital publicly:
J: that fish is chasing the other one. I bet he’s a female and he’s trying to rape the female.
Tim: Jamie! this is a children’s hospital
J: Oops! Sorry, Timmy!
We get back to my room, and I had this gel pillow thing for my pressure sore.
Tim: Looks kinda like a breast implant doesn’t it?
J: You just fussed me for talking about sex and rape, and you over here talking about breast implants? What the heck, Tim!
Tim: the difference is we are not out in the public where the whole hospital full of children can hear. Just you, me, and your mom
we all laughed. 🙂
Once back home, I still had some pain, but each day I was getting stronger. Even back home, I still have to do my therapy, as well as be careful with how I turn; I can’t twist or turn at certain angles, along with other restrictions. When winter came, the weather changed, and my post-surgery pains got a little worse than I can handle without pain meds … let’s just say, ”Mr. Valium” and I had become pretty good friends.
That long journey that consisted of nine months in St. Louis has given me a lot: It taught me patience, it has given me many new friends to go back and visit with, it has given me a new back and a new body(until I broke those rods and had to have a revision surgery August 2019)–which gives me a good excuse for a whole new look! (Any excuse to shop is good HAHA!) :)
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.
so the latest on my back: I saw dr. Kelly today. He is very optimistic. His plan is if my rods aren’t infected (we did labs), he says he will just open the incision scar where my rods are broken at, clean up my wound, and add in some “dominoes” and add in some extender rods.” It will be “Simple and sweet,” as he put it.
:p The date is the same, August 14, but I need to be here by the 12th because I need to go to get my central line valve put in on the 13th. If he does what he wants, “simple and sweet,” he doesn’t think I will have as many complications like I did last time bc last time I had broken ribs and pneumonia from that which led to trach, blah blah blah…the framework already there, this is just some maintenance repair! LMAO.
But whatever God’s will, will be done.
Share my go fund me please!!! https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring