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

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!

#Medical, disabilities, disability, Disability Awareness, disabled, Disableds, genetics, hospitals, KyphoScoliosis, Life, medical, rare disabilities, rareDisabilities, Scoliosis, UnBreakable, Uncategorized, Zebra, Zebras

Marfans Appointment at Baylor Genetics

On Thursday, February 16, 2023,

Mom and I traveled to Houston Texas and back. I had an appointment with Baylor Genetics. (THAT WAS A LONG DAY. Left home about 4:15 a.m. or earlier and got back around 4:30 p.m. at the latest.)

In July 2021, I got diagnosed with Marfans syndrome by Oschner in New Orleans, they wanted me to go to Baylor genetics as they are the “experts”.

it started with Mom and I leaving the house at 4 A.M. to drive all way to Houston Texas in time for a 9:30 a.m. appointment. at Baylor.

The appointment went okay- basically talked the same medical mumbo jumbo routine I have done my entire life at every doctor’s appointment. Talk about what Marfans affects, talk about the different features of Marfans, etc. Looking at my flat feet, my inverted ankles, my protruding chest bone, etc. looking at my surgery scars, blah blah blah…stuff I can probably do in my sleep as its such routine. They did a “Checklist” of Marfans features, I don’t know what the highest number is, but anything over a 7, they considered Marfans, I am an 8, so I barely made the cutoff 😛

Afterwards, I had to become a human pincushion and give 2 tubes of blood for a more comprehensive genetics blood test as I have “a gene deletion” and they want to see what genes are affected or something like that.

I go back on March 23, 2023, to get the results of that genetics test.

anyway, of course it’s cold and nasty outside this weekend, so besides being sore from the long ride in the vehicle yesterday, I’m aching because of the weather outside too- Human Barometer Strikes again *insert eye roll*


It is so funny…well Ironic funny, not ha-ha funny…

Mom and Dad didn’t complete the genetic testing when I was little because the Scoliosis popped up and they focused on that instead, and they didn’t want my childhood to be stuck in doctors’ offices and to have a “normal childhood” as much as possible. Which I did and I am thankful for that.

But FastForward years later and most of my only socializing and outings is …wait for it…DOCTORS OFFICES!

hahaha.

Irony is soooo much fun, isn’t it? 😛 *sarcasm* God definitely has a sense of humor.


(February 19, 2023): “

Question of the day:

Why can I not wear spaghetti strap tanks or low-rise jeans without my back hurting?

So weird! Because in my good (less pain) years 2013-2017 I didn’t have this issue.”

Chronic illness, Chronic Pain, Chronicillness, disabilities, disabled, Disableds, Friends, Friendships, KyphoScoliosis, Kyphosis, Life, marfan Syndrome, MarfanSyndrome, medical, Physical Disabilities, rare disabilities, rareDisabilities, Scoliosis, Spoonie, Spoonies, UnBreakable, Uncategorized, Zebra, Zebras

When my Bestie visited…Pure Joy!

The month of January 2023 was definitely a good one aside from the usual pain that I always experience during the cold months; my bestie and her little family (husband and daughter) came in for a month to visit. Her husband is in the service and they are currently in Italy. Her little girl is about 3 years old, and we just found out this week that they are expecting baby #2- hoping for a boy so that the dad wont be in “estrogen hell” lol.

Anyway, we spent 2 visits together while she was in, as they also had to visit between his family and her family. The first visit we took her little girl to Childrens Museum, a place that I enjoyed as a child and still enjoy and constantly look for an excuse to go back. Her little girl had me in fits of laughter, she definitely has her mommy’s personality- she called me a little girl and also had told her mom, “Damie ma fren now mama” lol.

The second time we just hung around the house and played pretend with my old tea party/kitchen stuff from when i was a kid. We also played doctor with “Aves” doctor kit. She kept making us “throw up the icky medicine” she gave us. It was funny.

I enjoyed my visit with them and was sad when they had to leave to go back to Italy and wont see them for a year, but I know a year will fly by rather quickly and next time we will have a new little baby to love on too.

But even still, I miss those old times when my bestie and I were younger in high school or fresh out of high school and being silly and cutting up, but thats life, we grow up and have to adult at times. Even though we are miles apart or dont talk every day, if I need, I know my bestie always has my back, and I will always have her and her family’s ❤ I love her ❤

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Goodbye 2022, Hello 2023

As the year 2022 closes and the year 2023 opens, I wanted to go over and recap my year; How I’ve grown and flourished, even though it didn’t really start until May, I have opened myself up to new dreams, possibilities, and opportunities. I have also made many new friends and aquaintences.

Even though I continue to have massive stage fright and social anxiety in large crowds, I have started public speaking and helping out for or at events for 2 really amazing organizations/programs: Guns Down Power Up- Founder Eric Williams, and #The BullyBox A passion Project- Founder Shauna Sias: Through these programs and events, people I’ve met and talked to, have inspired new ideas, passions, inspirations, and possible opportunities to “open doors” to achieve my dreams!

In other news, I also been doing some projects on my cricut- I am still learning new things about it, and if I could just ignore the pain to focus, I could do alot more crafting and creating. It is just so hard to get myself distracted from the pain and focus on crafting. the pain is in the back of my mind nagging when I try to fight through the pain sometimes..it is annoying. I also went to my first Comic con in October and had a blast and now I am hooked! I am going to the next one in March and may even cosplay this time!

My cat, Taz, that I been having since April 2006 – 9th grade- passed away. He was almost 17 years old. We been through alot, me and him. He was still very spry until the last week or 2 of his life. He started hiding out in garage, which he always like the garage, but the day before we decided to go put him down, he was having a hard time laying down and was breathing hard. Turns out he had some kind of respiratory thing, that even if he would’ve been young when he got it and had it been detected early, he still wouldve struggled as it is uncurable. He had a long, healthy, happy life, and now, he is up in Cat-Heaven living in God’s palace. Love you, Taz-a-roo, and will miss you, even though you stressed us at times!

My godchild is getting older and breaking my heart (haha just kidding). I cannot believe he is 14 already. I also cannot believe that David’s oldest niece, “skybaby” is gonna be a teenager in April! I still remember meeting her for the first time when she was still 7! and now she has 2 younger sisters who I also adore like crazy.

My bestie is coming in from Italy sometime this month, I cannot wait to spend time with her! I missed her like crazy. I miss our fun high school shenanigans and craziness, but then she wouldn’t be married to her husband or have her beautiful little girl who I am also crazy about. I cannot wait to spend as much time as we possibly can while she is in.

I cannot wait to see what fantastic adventures God has in store for me in 2023. Here is to good vibes and hoping I continue to discover more about myself and flourish into the person God wants me to be. Only through his grace and will…Amen.

Happy New Year, Everyone!

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Update: the latest and somewhat greatest in my life…

Okay, so the last post I did was about Fortitude and public speaking events and such.
well, right before my Guns Down Power Up event, I managed to hurt my ankle- It was so swollen and hurt bad. Not broken though thankfully. The diagnosis eventually was “Soft Tissue Swelling” because i had fell on it when my legs gave out (my disabilities make my legs give out sometimes.) Anyway, I ended up going to the event in my wheelchair and NO SHOES because my ankle was so swollen i couldnt get shoes on. The event went fine, we didn’t have many turn out- but the ones who did seemed to understand my talk. I enjoyed learning more about Eric and his story too.

I also been helping #BullyBox and Ms. Shauna and them with promoting their events, making flyers, making stickers on my cricut for them, going to events I can and talking to the kids about disabilities and bullying. In addition to that, I been helping Eric with Guns Down Power Up program, promoting his events and making flyers for him, as well as helping him edit the book he is writing, stuff like that. Just doing what I can with my limited mobility and pain, to help these 2 amazing programs help with the youth of my hometown that I love and care about so deeply. Aside from that, I also do some creative projects on my cricut- iron on shirts, iron on wallets that mom makes, greeting cards, stuff like that- I am still learning new tricks on the machine. I also enjoy creative writing and occassionally “tweaking”/editing my book about my life with disabilities or writing new poetry (when I don’t have “dry spells” in my creative writing).

In September, I went to St Louis, Missouri, for my yearly spine check up. It was a new doctor as my last doctor moved back to San Diego, *Sad face* (why is it, every 3 years the orthopedics in St Louis decide to move on and that ends up shuffling me down the line to the next doctor to try to solve the medical rubix cube that is my life?). Anyway, this doctor says my rods in my spine look stable, they haven’t moved even though one is broken- it is stabilized by a different rod or some other medical mumbo jumbo i dont understand; Long story short, the rods look fine and I don’t need to go every year now- my next appointment is in 3 years, if no problems arise (and if this doctor doesn’t decide to move also.) I sadly did not have time to visit with my “St Louis Peeps” as they were busy and we were only there for a day.

We sadly did not have time this year to put up our halloween/fall decorations, but definitely will for Christmas. Hopefully we put up my Christmas Village pieces. It brings me so much joy to look at and rearrange. I definitely cannot wait for Mom’s homemade gingerbread cookies! YUM!

Anyway, that is basically it, Pain but trying to push through when I can. I mostly do alot from the computer or my phone. I do try to make events, even if it means begging someone to pack me in my wheelchair and bring me- which I HATE! I miss less pain and being more independent, being able to drive more than I am now. Yes, I am angry and Mad that this is my life now, slowly losing more and more of my independence with each year; having to live on pain medication just to get through the day, insomnia because of pain and not getting comfortable in bed, oh the list could go on and on…. but tis life, I cannot change it, so I might as well just try to accept and adapt..even if its hard!

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Fortitude and what it means in my life

over the last couple of years,
I use the word fortitude a lot. I will tell yall why:

Back in 2017 I had subbed for my mom’s CCD class and they were learning about the virtues and the one for that week was fortitude- doing it in fear. It was my first time doing the CCD class by myself so I was nervous- nervous the kids would try to take advantage or not-take me seriously. Which it went fine.

The next day– I had been on an online dating site and got a message from someone who would now be my fiance. asking to go on a date. Again, I was nervous and scared. But again Mom reminded me of the virtue of fortitude -doing it in fear. (and yes we did go on a date, public – La Hacienda.)

So now anytime I do something outside my comfort zone and I’m nervous as heck–what word rings in my mind. Fortitude. And if it doesn’t on its own, Mom is right there to remind me of the word.

The latest thing I have had to do with fortitude is I started public speaking. Now don’t get me wrong, there have been times I have had to public speak before learning about fortitude. Even though I was nervous about it, opportunities continually pop up as if it is like God saying “HELLO THIS IS WHAT I WANT YOU TO DO.”

In the past, before learning about fortitude, I would still do the things but I didn’t know what “doing it in fear and nervous” was as far as virtues, and after the events I did, I never pursued or looked at public speaking as a career, further.


The first time I ever did any type of public speaking was in college for my Communications class- I made C’s because of nerves and read off my cards too much.

The next time was when I was asked to do what’s called “familiarity visits” with patients coming into Shriners for Halo traction- while I was in halo traction. Familiarity visits are telling the incoming patient what to expect: pain-wise, the routine during the week, how to do “pin care,” etc. That was easy because it was just like chit-chatting with peers; was I still nervous? yes! I worried I’d forget something important to mention or something, but still, I did it.

Another public speaking opportunity while in Shriners hospital during the time I was in halo traction was when the Respiratory Department Director asked the different patients to come to say a few words at the conference about how Shriners Hospital, the Halo traction, and especially the respiratory department affected us and helped us. I was nervous and with no filter, I told everyone there about my first weeks in traction and how I compared the respiratory department director to “Hitler of Respiratory” and the consequences once word had gotten back to her about me saying that! I had the entire room in giggle fits. The director and I may have had a rough start, but now we are best buds, and it’s our inside joke now.

In 2013, one summer while my godson was down from Texas, I happened to be wearing a tank top and he saw my scar sticking out from under my straps; he then proceeded to play “20 million questions” and I answered most of them until I got tired of answering and said “okay, that’s enough. go play, you’re giving nanny a headache!”

In 2015, one of my cousins at 4 years old noticed my spine sticking out during family Christmas eve and he was sitting behind me. I feel him feeling at my spine that was sticking out (The hump) and then suddenly feel him starting to punch it. His mom freaks out “_ Don’t hit jamie!” to which baby boy replied tearfully “I’m trying to push her back back in!” So that Christmas, he got the gift of learning about Scoliosis and why “cousin Jamie’s back sticks out.”

Also in 2015, I “tested the waters” of my comfort zone when LSU-Eunice hosted a talent show, where I read an original poem titled “Don’t judge by disabilities” and got a standing ovation as well as many compliments in the halls the following week. I was so proud that I had conquered my stage fright and even placed 3rd, which I don’t blame them poetry is nice, but music always wins!

Years passed and in 2021, I was a guest blogger on someone I only know online @Ami Ireland who has a blog “Undercover Superheroes” and talked about my disabilities there and it was posted in May 2021.

Now we are in 2022, and more opportunities have popped up without even really trying to get them. In March, I went to a church function and the CCD director’s granddaughter who I taught in kindergarten for VBS had finally noticed my back and how I was shorter than many adults, and she asked questions, so I explained as best I could at a 2nd-grade level and showed her pictures, she was shocked and just hugged me “Miss Jamie I had no idea. I remember you were always smiling for VBS and you spoiled our class!”

Next came when I was talking with Guns down Power up founder and director, Eric Williams. He had mentioned he was in special ed and had mental problems or something and I messaged asking if he minded talking about what disabilities/ why he was in sp-ed. I told him I had physical disabilities, and thus he asked if I minded coming to talk about my disabilities at his program. Which will take place on May 28, 2022, at Opelousas Police Department from 11 a.m.- 3 p.m.

From there, I was just talking to another program founder, the founder of BullyBox A passion Project to combat bullying in schools and such, Ms. Shauna Sias and she asked me to go on her and her co-host Nina Irving Williams Podcast/Live TV Livestream thing on Weds nights (Which Mine was April 13- I attached my segment of the show on my Youtube.)

So God keeps giving me Opportunities and in the past, it was just “one and done” but lately they have been more frequent, so maybe it’s time to come out of the shadows and do this more. These opportunities could open more doors as I have lots of passions and ideas but don’t know who to talk to or how to implement them. Who knows what God has in store around the corner for me?

God is good all the time. Sometimes we got to practice fortitude- doing it in fear!

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Genetics update: I DO NOT HAVE EDS; I Have Marfan Syndrome! 

 Talk about turning my world upside down!! LMAO..30 years thinking I had one diagnosis ( Ehlers Danlos syndrome).. Come to find out it’s a different connective tissue disorder, Marfan syndrome. LMAO 🤣🤣

My life is never dull.. it’s a roller coaster.. another loop de loop, turn in my life lol 😆
I just got the diagnosis from the genetic testing, today!!! I am still in shock..30 years of lies! LMAO.

https://drive.google.com/file/d/1QC4vfqgw-UddjMb-HZU29fi16j9oWARK/view

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Life Update: Resuming College, Registering Fall 2021 classes

Based on my current stamina level, I decided to only resume college part-time: 9 credit hours-3 classes scheduled: I will be taking Eng359:Advanced English writing for social sciences class (Monday and Wed. 1-2:15 p.m.), Socio364: Juvenile Delinquency (Because I feel like that would be interesting- on Mon, Wed., and Friday 10 a.m.-10:50 a.m.), and CMCN307: Communication in leadership class (online). I still have many many many choices in classes I want to eventually take but they were either full or not available this semester. I am just so eager to start back in the fall and I hope I don’t get burnt out, able to keep up and try my best and get something out of these classes 🙂 I’m very optimistic and I think I chose some pretty good classes. Let’s see how long that optimism stays. 😛 haha.

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Life Update: Fall 2021 Resuming College, Close to Bachelors Degree!!!!

What girl is resuming college in the fall semester and only 28 credits from bachelor’s degree in general studies with a concentration in behavioral studies…? 🙋‍♀️🙋‍♀️🙋‍♀️ this girl, right here! Woot woot.

However, being I have 28 hours left: All I have left is an Advanced English writing class, some general electives, and enrichment (concentration) classes. While I think if I do 2 semesters of full time-each one will be about 15 credit hours, (which is about 5 classes if its a 3-day class)- more if its a 2-day class.) that will be 2 extra credit hours in the end run, but then I will be done by end of next spring if I am able to keep my grades up.

However, I been out for a while and I get stressed and overwhelmed easily, so maybe Instead of setting myself up to fail and burned out, I only do a few part-time, even though I am thinking these will be “Easy” classes.

I don’t know what the workloads entail for these classes. Plus my stamina isn’t great right now. So looking at my energy level now, it’d probably be safest to do part-time in the fall, and then in spring, I can work my way up to more credit hours. (although maybe not, since spring starts in January and that’s still cold…unless it’s mostly online during that time. I don’t know. Time will tell.) Any advice is greatly appreciated. 🙂

Many people on my Facebook suggested only taking 1-2 other classes besides the advanced writing class because for most people, advanced writing classes take up a lot of time.

The next biggest issues while registering for classes:

1.) When going to the course description, some descriptions only say “will have an additional cost,” It doesn’t say anything about what the course is about or the workload expectancy: Like how is a student supposed to figure out if that class is a good fit with another class they are taking? UGH!

2.) Most of the classes I am looking at either is full to capacity, not a good fit with the advanced writing class, and some just aren’t available/an option for this semester.

So right now, the only class I can schedule is advanced writing: Could that be a sign from God? Like “Hello, all you need to take is this one class for right now.” Only time will tell.

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Disability update: Genetics appointment, pain management, pain, oh my!

In High School, I learned that for me to get stuff accomplished, I Need To Do Lists, color-coded or numbered by priority: Otherwise everything is absolute chaos. Yesterday I made a to-do list and got most of it completed: 
I called the genetics doctor to do the genetics testing and find out more about my Ehlers Danlos Syndrome: what type I have, what symptoms of that type, etc.
 I had been waiting to hear back from them. I went to my GP (general physician) in August 2020 to get a referral, they finally sent the referral in Oct or November, and I had still not heard back from the genetics dr office to get an appointment set up. I called and the referral was never uploaded into the computer so I had to call my GP to ask them to refax the referral, but instead of having to wait for that, they went ahead and got all my file info and set an appointment to get me in the books; won’t be until August (unless someone cancels or reschedules, I am on a waitlist.) 
In other news, I am down to 3 pain pills left and my pain management doctor appointment isn’t until the 29th of this month! I called to find out if there was any possible way to either give me another half refill to tide me over until the appointment or to move my appointment up: I was shot down for both! I have 60 ct of tramadol per script- however, since I was completely out of my 60 at my last appointment- they had mentioned that they were going to up my count to 120 pills per bottle-but forgot to do that, I see the doctor every 2 months, and my dosage on my bottle says “take 1-2 every 4-6 hours as needed. Max dosage 8 daily;” On a BAD pain day, I take 6; On a good day, I only take 1. On a great (Miraculous rare day) I take 0. I was completely out on my last appointment on 1/28 (so they were filled that afternoon,) that 60 pills lasted me 20 days till 2/17. 2/17 lasted me until 3/11 with 3 left that I will now have to hide in a spot for absolute emergencies until my appointment on 3/29. The next 17 days will be a test of patience, nerves, and will power, I will have to hope and pray that Tylenol and my spasm medications (Baclofen) and (Gabapentin) will be enough, However: If I lose patience and become “Short with anyone,” I am apologizing now ahead of time. Please bear with me and realize I do not mean it, I am in pain and therefore my nerves are already on edge. 
prayers appreciated.