Category: Entertainment

#Medical, accomplishments, Adult, adulthood, Adulting, Advocacy, Autobiography, Bullying, Camps, Choose Kindness, Chronic illness, Chronic Pain, Chronicillness, Confidence, Connective Tissue, ConnectiveTissue, creative writing, Creativity, Decency, Decent Humans, Deformity, Differently Abled, DifferentlyAbled, disabilities, disability, Disability Awareness, disabled, Disableds, discipline, disorder, disorders, Emotions, EndHate, EndHatred, Entertainment, fears, Friends, Friendships, Fun, future, genes, geneticist, genetics, genetics doctor, genetics dr, Handicap, Handicapped, Handicaps, Happiness, Health, heroes, illness, Independence, Inspiration, inspirational, Joint Pain, JointPain, Joints, Joints Pain, Kindness, KyphoScoliosis, Kyphosis, Leadership Communication, Life, Life skills, Louisiana, marfan Syndrome, MarfanSyndrome, medical, medication, medications, memoir, Morality, morals, Motivational, Motivational Speaking, Networking, News, news media, Pain, Pain Doctors, Pain management, pain meds, PainDoctors, PainManagement, parent, parenting, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, Politicians, politics, Public Speaking, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Scoliosis, Silly, social networks, Spinal Deformity, Spinal Fusions, SpinalDeformity, Spine, Spine infections, Spine Pain, SpinePain, Spoonie, Spoonies, Summer, Summer Camps, summer fun, SummerFun, Summertime, support, Syndromes, Teaching, Teamwork, Trending, UnBreakable, Uncategorized, writing, Zebra, Zebras

I’m Backkk!!!!

jamiesjourney0591

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

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…

jamiesjourney0591

 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

jamiesjourney0591

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

jamiesjourney0591

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 .