ADA, Adult, adulthood, Adulting, Advocacy, AntiBullying, AntiHate, AntiViolence, anxiety, Autobiography, Back Pain, BackPain, Bullying, Career, Careers, Children, Chronic illness, Chronic Pain, Chronicillness, College, College student with disabilities, College with Disabilities, CollegeStudentwithDisabilities, CollegeWithDisabilities, Confidence, Connective Tissue, ConnectiveTissue, creative writing, Creativity, Decent Humans, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, dreams, Emotions, Facing Fears, Family, Fortitude, future, Halo Traction, HaloTraction, Handicap, Handicapped, Handicaps, Happiness, heroes, hospitals, Humanity, Humans, IDEA, IEPs, illness, Independence, Inspiration, inspirational, Jobs, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Leadership Communication, Life, Louisiana, marfan Syndrome, MarfanSyndrome, medical, memoir, Motivational Speaking, Originality, Pain, Pain Doctors, Pain management, PainDoctors, PainManagement, Parents of Disabilities, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, poems, poetry, Public Speaking, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Respiratory, Scoliosis, Shriners Hospitals, Shriners Hospitals for Children, society, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spine Pain, SpinePain, Spoonie, Spoonies, StageFright, story time, storytime, students with disabilities, StudentsWithDisabilities, superheros, support, Syndromes, teenager, teens, Traumatic Childhood, UnBreakable, Uncategorized, writing, Youtube, youtube videos, youtubers, Zebra, Zebras

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!

#Medical, ADA, Adult, adulthood, Adulting, Advocacy, At home, Athome, Autobiography, Back Pain, BackPain, birthday, birthdays, Chronic illness, Chronic Pain, Chronicillness, College, College student with disabilities, College with Disabilities, CollegeStudentwithDisabilities, CollegeWithDisabilities, Confidence, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, dreams, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Family, Fun, Handicap, Handicapped, Handicaps, Happiness, Health, HealthCare, illness, Inspiration, inspirational, Joint Pain, JointPain, Joints, Joints Pain, Joy, KyphoScoliosis, Kyphosis, Life, Louisiana, Motivational, Pain, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spine Pain, SpinePain, Spoonie, Spoonies, Syndromes, UnBreakable, Uncategorized, wellness, Youtube, Zebra, Zebras

Life update: 30th Birthday!!!

 So yesterday, May 5, I officially turned 30 years old! Gosh how am I already 30?! time flies! 

We really didn’t do much to celebrate it. The weather was rather ugly outside, my mom’s knee was bugging her, Bae (David) was working, etc. My parents got a sign and a banner to put in the front yard, Bae (David) came after work, Dad made one of my favorite meals (it’s called “greasy chicken”- basically a chicken in a gravy type thing..It is really good and yummy!) 

Earlier in the week, Mom and Dad had invested in a really fancy office chair for me since I do a lot of computer stuff and sitting at a desk; it was highly recommended for people with Scoliosis and back problems for good posture. They also got me some Fine-Tip ink pens in various colors since I do a lot of journaling and note-taking while doing my daily religious readings and such. Those surprises were before my birthday: For my birthday, They invested in a Cricut Explore Air 2 in my birthstone color: Emerald! The day before my birthday, one of my best friends, one I been friends with since we were in preschool together, came to drop off a 30 wine glass and a “cheers to 30 years” purple shirt for me to wear on my birthday (which I did wear, and it’s the shirt I am photographed in the slideshow video down below).

Today, May 6, Mom was feeling better so she made up the fact she couldn’t make me a special birthday breakfast by going to Waffle House while I was asleep and ordering what we usually split together- The all-star breakfast: Pecan Waffle, Country Ham, Hashbrowns, etc. and brought it home for me! I am so spoiled, but I am the youngest child and I have had a rough life, so I deserve a little spoiling every now and then LMAO! 

This weekend, our local performing theatre is doing a talent show- so we will go to that, maybe go do a little shopping and go get my “birthday freebies,” from stores and stuff I have rewards memberships with. Don’t know, Time will tell what we actually do; Having disabilities kill my stamina levels so I gotta just see how I am feeling and “play by ear,” but oh how I wish I could “be Normal,” and have normal stamina levels and such, but eh, Tis my life- can’t change it so might as well accept it. *shrugs* 

But anyway, Overwell, it was a pretty good birthday. 🙂 

#Medical, ADA, Adult, adulthood, Adulting, Athome, Autobiography, Child, Childhood, Children, Chronic illness, Chronicillness, collagen, College, Connective Tissue, ConnectiveTissue, Decent Humans, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Family, Friends, Friendships, future, genes, genetics, Handicaps, Health, HealthCare, Humanity, Humans, illness, Joint Pain, JointPain, Joints, Joints Pain, Kids, KyphoScoliosis, Kyphosis, Life, Louisiana, Love, medical, memoir, Mom, Momma, Mommy, Mother, parent, parenting, parents, Parents of Disabilities, Physical Disabilities, Q and A, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Scoliosis, Social Media, social networks, society, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, story, story time, storytime, support, Syndromes, UnBreakable, Uncategorized, wellness, Youtube, youtube content, youtube infleuncers, youtube tag, youtube videos, youtubers, Zebra, Zebras

Planning a Q and A video…with mom….Need questions!

I am planning on doing a Q and A type video with mom for my youtube channel sometime this week. Is there anything yall would like to know?

Any questions about raising a child with disabilities?

Any questions about what I was like as a child?

Any questions about me in general?

Her thoughts/ feelings/opinions about raising a child with disabilities?

Her thoughts/feelings/opinions about society now a days? 

Anything…There are no Dumb questions.

#Medical, ADA, Adult, adulthood, Adulting, Autobiography, Child, Childhood, Childrens Hospitals, Chronic illness, Chronicillness, College, Confidence, Connective Tissue, ConnectiveTissue, Creativity, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Family, Friends, Friendships, Halo Traction, HaloTraction, Handicaps, Happiness, Health, HealthCare, hospitals, illness, Joint Pain, JointPain, Joints, Joints Pain, Joy, KyphoScoliosis, Kyphosis, Life, Louisiana, Love, memoir, Originality, parenting, parents, Parents of Disabilities, Physical Disabilities, poems, poetry, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Scoliosis, Shriners Hospitals, Shriners Hospitals for Children, Social Media, social networks, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, story, support, Syndromes, Talent, UnBreakable, Uncategorized, Youtube, Zebra, Zebras

Life in Slideshows

I made more slideshows about my life in pictures. I added all my slideshows to a playlist on my youtube. 

Link to playlist: My Life Slideshows – YouTube

ADA, Adult, adulthood, Adulting, Chronic illness, Chronicillness, Connective Tissue, ConnectiveTissue, Crazy, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, doctor, Doctors, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, genes, geneticist, genetics, genetics doctor, genetics dr, Handicaps, Health, HealthCare, hospitals, illness, Joint Pain, JointPain, Joints, Joints Pain, Kyphosis, Life, Louisiana, Love, Medicaid, medical, medication, medications, pain meds, Parents of Disabilities, Physical Disabilities, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Scoliosis, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, story, Summer, Syndromes, Uncategorized, Youtube, Zebra, Zebras

Disability/Scoliosis/EDS Journey: Ended up in ER

 8/12/2020

So earlier today, I had my appointment with my GP who agreed to refer me to an EDS geneticist that I had found in New Orleans- Great news, right? Right. 

later that evening, I was outside helping my fiance’ do some yard work around the backyard and he asked me to go get him some bottled water; should be a simple task, right? Wrong. It ended in me having to go to the ER. 

I went into the house, got the bottle waters(1 for him, 1 for me), and started back out the backdoor: Now our backyard door has a drop about 1-2 ft and then the first step. I don’t know if I missed the step or if my ankles/legs decided to give out; it all happened so fast- All I know is next thing I know, I am losing my balance and falling forward and landing face-first onto the concrete sidewalk. 

Landing forward, should spare my rods right? Hmm. well, I’ll get to that…

When I fell, I hit my legs and knees and felt like I couldn’t stand right away, I busted my head on the concrete and had a big gash and later a knot, scraped up my right wrist, and had landed on my left ring finger that had started to already swell. 

I waited for a little while to see if the headache would subside and I’d feel better. No luck. So we went to the ER. They did a CT Scan (to look at my head to make sure no damage) and a Xray(to look at my rods and back). 

The Drs said the finger wasn’t broken; it was a busted blood vessel and ice and rest should bring down the swelling. The CT revealed no signs of any damage or concussions. However, the Xrays were not as lucky: My rods that I just had fixed almost a year ago, from being broken previously, were broke once again! Now the rods could’ve been broken before this incident- After all, I was still taking pain medication on and off as needed and I had an experience months ago while still in the apartment where i had stood up and it felt like a popping shockwave down my back. The timing just really sucks, so now I have to call Dr. Kelly and tell him the bad news about my rods. I feel like I let everyone down again, but I did everything I was supposed to- I wasn’t straining, I wasn’t bending, I was being cautious,, I didn’t get on inflatables this time and I still end up with broken rods. I wonder if my EDS could be a contributing factor to the rods continually breaking? I suggested it to one of my fellow Scoliosis friends who is in a scoliosis group and said there was a girl who kept breaking her rods and getting infections and was later diagnosed as EDS and ended up having her rods removed, so it could be a contributing factor. Hmmm….I don’t know. Seems like I try to do everything right and then something still f** it up and I am back to being a disappointment. UGh. I hate these voices in my head and feeling like I am mentally unstable. Will things ever get easier? 

ADA, Adult, adulthood, Adulting, anger, anxiety, borderline personality disorder, Chronic illness, Chronicillness, collagen, Connective Tissue, ConnectiveTissue, Deformity, Depression, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, doctor, Doctors, dreams, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Emotions, Entertainment, Handicaps, Health, HealthCare, hospitals, illness, Joint Pain, JointPain, Joints, Joints Pain, Kyphosis, Life, Medicaid, medical, medication, medications, mood swings, pain meds, Physical Disabilities, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Sassy, Scoliosis, Side effects, Social Media, social networks, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, story, Summer, Syndromes, UnBreakable, Uncategorized, Youtube, Zebra, Zebras

disability Journey: Thought of the day- Medications and side effects…

 thought of the day…8/10/2020

like for real why do medications cause side effects? Like pain meds help with pain but in the same token, you might end up adding in depression, anxiety, mood swings, agitation,etc. (to which I already have some.)

so it’s like okay..do I wanna deal with pain and possibly just cry to the point of wanting suicide…or do I take the pain medication and stop the pain, but end up depressed or miserable and still wanting suicide for a different reason other than pain- because of emotional impulses and acting like a toddler throwing a tantrum? hmmm.

oh and then lets not forget when I am on pain meds but not sleeping, I tend to “go down the rabbit hole” and spiral emotionally- like right now, I am convinced I have Borderline Personality Disorder.

guess the saying is true, “Idle time is the devil’s playground.”

ADA, Adult, adulthood, Adulting, Chronic illness, Chronicillness, collagen, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, doctor, Doctors, dreams, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Entertainment, Fun, future, Handicaps, heroes, Joint Pain, JointPain, Joints, Joints Pain, Kyphosis, Life, Love, Medicaid, medical, Music, Music Therapy, MusicTherapy, Physical Disabilities, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, Social Media, social networks, Songs, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, story, Summer, Syndromes, Tiktok, UnBreakable, Uncategorized, Youtube, Zebra, Zebras

youtube video: Cover “Unbreakable”-Ali Mcmanus

In the video, I was in the car jamming to my new “theme song” Unbreakable by my good friend, Ali Mcmanus. -video July 17.

ADA, Adult, adulthood, Adulting, Chronic illness, Chronicillness, Crazy, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, dreams, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Entertainment, Fun, Funny, Handicaps, Humor, Joint Pain, JointPain, Joints, Joints Pain, Kyphosis, Life, Medicaid, medical, Physical Disabilities, Playtime, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, Silly, Social Media, social networks, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, story, Syndromes, Tiktok, Uncategorized, Youtube, Zebra, Zebras

Putting my tiktoks on youtube

just in case we lose the app because of Trumps talks of banning the app. (I really hope Microsoft is able to buy it.) I love some of the videos I made. 

Tiktok is one of the few things that I can do to entertain myself on a pain day. I really hope it doesn’t go away. 

anyway, here is the video . 

Ads, Advertisement, Advertising, At home, Athome, Business, Businesses, cooking, Cutco, Kitchen, Kitchen Utensils, KitchenUtensils, knives, Life, Product Advertisement, retail, Sales, Uncategorized, Youtube, Youtube Ad, YoutubeAd

Cutco At Home with David!!!

My fiance, David did a video to post on social media using his Cutco products starter kit to demonstrate the ease and simplicity and high quality of Cutco Products. Check out the video, then go on over to his store and order something with him today! 5-star quality, American Made! 

In the video below: My fiance demonstrates the ease and usefulness of two of Cutco’s products- The Trimmer knife and The potato Peeler