Category: Spinal Deformity

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I’m Backkk!!!!

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Hey Everyone, Sorry for the “hiatus”. Things got chaotic but in a good way for the most part.

In March 2023, I returned to Baylor in Houston and got the results of my bloodwork – My “Chromosome Microdeletion” is on the Chromosome(s) 15.21.1-15.21.2 (its rather small) and very rare. There is no other deletion exactly like mine; there are some that are similar, but I am a medical anomaly (as if I didn’t know that already LMAO!)

Somewhat Sadly, In July 2023, My (now ex) fiance of 5 years and I broke up. There were many issues and TBH I think I mostly stuck around because I adored his family. I was sad about our relationship ending at first, but shortly after, his true colors of his personality showed up, but I am not going to air his dirty laundry on here- all I am going to say is what he did after we broke up (Despite trying to stay friends, I had to eventually cut him off for my mental health well being), but, he “shot himself in the foot” of any chances of us getting back together. I am happy to say however that his family still keeps in contact with me and his sister even still lets me see her kids who still refer to me as “aunt Jamie”.

In Other News, Around April of 2023 I got the vision of doing a “podcast” (Sugar Spice and Everything Nice- St Landry Parish) of Promoting Opelousas/St Landry Parish- events, hidden gems of stores/restaurants/etc, good news, etc. as all that makes the news is “bad news” and I don’t agree with that- why only see the bad when theres so much good also? (That’s another thing about my Ex: when I told him about him, he didn’t support it “Why you wanna do that? There barely is anything ever good that happens around here? It wont change anything,” meanwhile I always tried to support every idea he had, But, whatever.)

Shortly after I started my “podcast”, Parish President Jessie Bellard had reached out to me to attend a meeting of a board to help “Push/Promote St Landry Parish.” Shortly after that happened, Guns Down Power Up Founder Eric Williams reached out and asked if I’d be interested in becoming the new Vice President on the organization Board (I made a year as VP in July 2024). Finally, by going out to these events and networking with the community, I am meeting pillars and leaders in the community- other organizations, etc – that could help guide me towards accomplishing some of my biggest passions and dreams that I have had for a long time!

Finally, Guns Down Power Up, thanks to Superintendent Milton Batiste and Marshal Paul Mouton, got some classrooms at the old North Elementary school campus and we were able to do our first ever SUMMER CAMP, which was an amazing success, and I can already see it getting bigger and better with time. #TeamWorkMakestheDreamWork

While yes, my pain is unbearable sometimes and there are days it’s very hard and I just want to “give up,” All the blessings I see in my life, I can’t wait to see what other exciting things await. Now if only my body pains would go back to what they were in 2013-2017, and I’d be on cloud 9, but we can’t have it all.
I will just take one day at a time, that is all any of us can do.

God Bless Everyone!!! ❤

-Jamie

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Update: the latest and somewhat greatest in my life…

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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

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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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Life update: Passed my College Class of Leadership Communication!

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I am not sure if I put on here that I was taking an online class for the Fall 2021 semester at UL Lafayette. (originally I had planned to take 3 classes= 9 credit hours, but I decided to only do one class, as the others were on campus and I didnt have the energy or stamina to go on campus, so I just stuck with the online class= Leadership communication). I decided to take Leadership Communication thinking I would learn how to speak like a leader; Instead it was reading news articles and writing case studies, and learning different leadership styles; which can be helpful too I guess.

I was disappointed at first that it wasn’t what I expected, but I still tried my absolute hardest in it. In fact for my first case study, I didn’t understand the directions and was overly anxious about it: constantly emailing my professor and asking “is this right? am I on the right track?” Eventually they told me “you are doing fine, stop doubting yourself so much!”

For the end of the semester, we had an extra credit assignment where we studied 2 cases of Hate crimes against People of color (blacks) and against Asians in regards to Covid pandemic. I emailed my professor, asking if I could also include hate crimes against disabilities, they emailed back “While thats a great idea, I’d prefer we stick with the ones I assigned, but thats a great idea to include for my future classes. Thank you for bringing awareness.” I felt extra proud in that moment.

I managed to make A’s on every assignment. I made an A average through the entire semester! something I had never ever ever done in my history of college (maintain straight A’s through the course, sure I had occasional A’s in some assignments and my end grade was sometimes A’s, but never maintained/constant through the entire course!)

So apparently, I need to go into Communication! LOL. Im just so proud of this accomplishment!

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

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 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: 30th Birthday!!!

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 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. 🙂 

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Life Update: Resuming College, Registering Fall 2021 classes

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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!!!!

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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.

#Medical, ADA, Adult, adulthood, Adulting, Back Pain, BackPain, Broken Rods, BrokenRods, Chronic illness, Chronic Pain, Chronicillness, collagen, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, doctor, Doctors, drs, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, genes, geneticist, genetics, genetics doctor, genetics dr, Handicap, Handicapped, Handicaps, Health, HealthCare, hospitals, illness, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Life, Louisiana, Medicaid, medical, medication, medications, memoir, mood swings, Pain, Pain Doctors, Pain management, pain meds, PainDoctors, PainManagement, Parents of Disabilities, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, sick, sickness, Side effects, Special Needs, Spinal Deformity, Spinal Fusions, spinal infections, SpinalDeformity, SpinalFusions, Spine, Spine infections, Spine Pain, SpinePain, Spoonie, Spoonies, support, Syndromes, UnBreakable, Uncategorized, wellness, Zebra, Zebras

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

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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. 

#Medical, ADA, Adult, adulthood, Adulting, At home, Athome, Autobiography, Brain Fog, BrainFog, Broken Rods, BrokenRods, Chronic illness, Chronic Pain, Chronicillness, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, doctor, Doctors, drs, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, genes, geneticist, genetics, genetics doctor, genetics dr, Handicap, Handicapped, Handicaps, Health, HealthCare, hospitals, illness, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Life, Medicaid, medical, medication, medications, memoir, Parents of Disabilities, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, sick, sickness, Side effects, Special Needs, Spinal Deformity, Spinal Fusions, spinal infections, SpinalDeformity, SpinalFusions, Spine, Spine infections, Spoonie, Spoonies, Syndromes, UnBreakable, Uncategorized, Weird, wellness, Zebra, Zebras

Disability Update: uh-oh! I fell!

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 I do not know what happened today, but early this evening, I fell. I am assuming I tripped over a thing of bottle waters, but I am not exactly sure what happened; it all happened so fast! I know that all day I been feeling pretty tired, weak, dizzy, lightheaded; kind of day-dreamy. Research shows that it could be a Ehlers Danlos thing: POTS or Dissociate, Brain Fog, or dysautonomia, or it could just be the fact its “that time of month.” Who knows, its a mystery.  I am not even sure what way I landed or anything. I think I fell on my side, but I cant remember for sure. 

I do not hurt right now, but I will probably feel it tomorrow. I just hope I haven’t done anymore damage to my rods than they already are. If the pain shows up and lasts, I will do x-rays and send them off to Dr. Kelly in St Louis. 

For now, I just got a lecture from Mom about being more careful and to “use my walker,” and “let go of my pride,” blah blah blah. It isn’t a pride thing Mom. it’s just hard to remember to use that thing when most of the time I do not need to use it. I do not mind my cane, walker, or wheelchair, but most of the time I am fine, so I do not think to use them when I feel weak. I will have to figure out a way to remind myself I guess. I just wish I knew why I was having these falling spells?? This is my second one, first one was back in August. Is it because of “that time of month,” or something more serious? Is it because I am not being cautious enough? Its a mystery..One I will have to figure out before I end up living in a plastic bubble because I am such a klutz. Ugh!