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Marfans Appointment at Baylor Genetics

jamiesjourney0591

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.”

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Fortitude and what it means in my life

jamiesjourney0591

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: Summer Special Needs/Inclusion Camp Proposal Idea

jamiesjourney0591

 This is a future endeavor for me once I graduate with my bachelors degree. For as long as I can remember, I have been passionate about special needs and disabilities, probably because It is what I know. At age 11, I started attending a Summer day-camp for special needs called Camp We Can Do. (I have previously mentioned my experiences at Camp we Can do- See older blog post titled: “Disability Journey: Camp We Can Do- My heaven on Earth!!” It was a great experience back in the day, but sadly it has become basically “a joke” and not what it once was. However, it has influenced me and was a huge part of what made me into what I am today. I decided to take the things I liked/loved about camp, the things I wanted to change, my ideas I’d often proposed to staff while as a camper, etc. and make it into my own. 

Here is my proposal: 

Intro:  Growing up, I was always self-conscious, even though I had friends in mainstream education, I still felt like an outsider and that my “normal,” friends couldn’t relate to me at times. I didn’t like sleeping away from home and I was overly self-conscious about what I wore or any risks of being mocked/bullied. The answer to my confidence issues was a Special Needs Camp in Lafayette, Louisiana. It was a day camp all summer, called Camp We Can Do.

Camp we Can Do, took children and young adults (ages 5-23) of all special needs. Every day they did some type of arts and crafts, cooking/baking in kitchen, some type of sports, morning exercises/stretches and a walk around the track, a group activity- whether it be playing out in the park area, we would go swimming on Fridays, and bowling on Tuesdays. There would be one “Big Field Trip” to places like NASA, Kemah Boardwalk, NOLA Aquarium/IMAX, etc. Sometimes we’d have small field trips like Candyland cottage sweetshop, the beach in lake Charles, Incredible Pizza/GattiTown when it was around, children’s museum, etc. They would also do at least one or two talent shows where kids could do karaoke, dancing, or whatever. We were encouraged to explore outside of our comfort zones. We were held accountable for our actions despite having disabilities/special needs.

Camp We Can Do was great back in the day, but now it isn’t what it used to be, but has inspired me and was a big part of who I am, that I want to build on the ideas from the Camp and expand into my Own.

I also collaborated with another former camper: Bailey Castille and will include her ideas as well.

               Bailey’s Ideas:

·        Camp all summer long (as soon as school lets out) and during school (after school and on weekends)

·        Frequent Field trips

·        Rotation sign ups (choices like electives)

·        Separate cooking and baking into two separate rotations

·        Life skills- Cooking, shopping, chores, laundry, etc.= independence skills

Joint Ideas:

·        Pet therapy

·        Music therapy

·        Writing therapy

·        Theatre therapy- dancing, acting, film

·        Art therapy- digital or nondigital

·        Crafting therapy

·        Gardening therapy

·        Camper group compatibility= personality questionnaires to avoid cliques and fights

·        Camper input= suggestion boxes, help with shirt design, theme, etc.

·        Girl activities (girl scouts, tea parties, dress up/fashion show, etc.) “girls’ day”/ Boy’s activities “boys’ day” = sports, boy scouts, etc.) —***Sign up/optional***

·        Reward/incentive program

·        Videos in the finale DVD slideshow

·        Snacks for children who forgot theirs

·        Camp Store= “Camp Bucks” for good behavior/reward incentive, can spend at Camp Store

·        Train older responsible campers to be future staff (Mentor Program) – Will hire future campers or let them volunteer****

·        DIY Craft Day- Choices

·        Weekly Newsletter/Mail for campers and family/ Calendar for month

Camp Field Trip Ideas:

·        Art, history, or science museums

·        Performing theatre shows

·        Avery Island

·        Sea World

·        Build-a-bear

·        Dave and Busters

·        Chuckie E. Cheese

·        Cicci’s pizza

·        Beaches

·        Aquariums

·        Campgrounds- (KOA, Cajun Campground, Poches, Cajun Palms, etc.)

·        Candyland Cottage

·        Children’s Museums

·        Libraries

·        USS KIDD

·        Blue Bayou/ Dixie Landin

·        Kart Ranch

·        NASA

·        KEMAH Boardwalk

·        EPIC Fun Center

·        Surge Entertainment Center

·        Jump Zone

·        Sky Zone

·        NOLA Aquarium/Zoo/Butterfly House/IMAX

o   =====Life Skill trip ideas:

o   Restaurants/bakeries/etc.- (Targils –Cooking classes? Deanos—Pizza cooking demo? Old tyme grocery—po’boy making demo? Etc.)

o   Grocery shopping

o   Shopping= malls, recreational

o   Laundromats

o   The Arc

o   IMPAC

o   UL Life Tour

o   UL/ LSU/ LSUE/ SLCC/etc. Campus tours

o   APARTMENT TOURS

o   GOODWILL

o   DREAMS Foundation

·        Horseback riding

·        Boating/fishing/crabbing

·        4wheeler/ATV riding

·        Pool

·        Bowling

·        Movie Theaters

·        ***Farther trips: St Louis, Mississippi, Arkansas, Disney World, etc.***

School Time Ideas:

·        Fall Bonfire

·        Fall Harvest Fair/carnival

·        Participate in community= parades, downtown markets, etc.

·        Dances (older than 10+) = Mock homecomings, Halloween, Christmas, Valentines, Mardi gras balls, (Mock debutant balls type things), Proms

·        Parties (any age) = Halloween, Christmas, new year’s, valentines, Mardi gras, easter, Memorial Day, 4th of July, birthdays**

·        Movie day= campers vote on movie to watch either owned or go to theatre.

·        Skating Rink Night or Midnight Bowling

·        Dress up tea party/ Etiquette for girls’ women, or fashion show/makeover—***sign up—optional***

·        Sports Fitness Day or scouts or 4wheelers-mudridding or fishing or something- guys day—****sign up —optional***

·        Jean day $1

·        Bingo

·        Bible Study

·        Talent Shows

·        Art or cooking/baking or crafting day (can even be woodworking crafts) or gardening

Last Day of Camp/Fun Day ideas:

·        Balloon artist

·        Magician

·        Carnival/fair games

·        Face painting

·        Petting zoo

·        Fun jump

·        Water balloons/sprinklers

·        Ice cream/snow cones

·        BBQ

·        Bonfire with smores?

·        Talent show time

·        Party?

Other ideas:

·        Cool down area for meltdowns

·        Staff to be tested Emotionally and background checks- No drugs/alcohol, no violence charges, no sex crimes

·        Not a daycare- must be potty trained or have an aid/caregiver

·        Have talks involving themes of:

o   Equality

o   Kindness

o   Respect

o   Confidence

o   Self-esteem

o   Anti-bullying

o   Friendship

o   Etc.

·        Include “mainstreamed” (non-special needs) children/young adults?

·        Sleep away camp vs. Day camp? (Maybe make it optional)

·        Bonfires with smores if sleep away camp

What the Camp Offers:

·        Art

·        Crafting (including woodworking, working with recycled materials, etc.)

·        (possibly) Sewing= sewing, crocheting, embroidery, etc.

·        Photo/Film (how to handle cameras, etc.)

·        Cooking

·        Baking

·        Sports and fitness

·        Survival/Scouts

·        Bowling (weekly)

·        Swimming (weekly)

·        Horseback Riding?

·        Boating/Canoeing?

·        Fishing/Crabbing?

·        Creative writing= short stories, poetry, whatever.

·        Dance

·        Fashion (design, sewing, etc.)?

·        Gardening and horticulture

·        Religion/Theology/VBS/bible study

·        Morning exercises/stretches and walk track

·        Weekly talent shows

·        Learning life skills, confidence and how to love yourself, making friendships, etc. ***

Rules:

·        No profanity (goes for everyone- staff included)

·        Respect all property of the camp (“you destroy it, you pay for it.”)

·        Wear camp shirts on all outings, as well as name tags, and stay with your group/staff

·        Pay ahead of time for trips (will not accept “day of payments”)

·        Treat each other and staff with kindness and respect:

o   Be helpful

o   Be kind

o   Tell if you have a problem (do not handle it yourself)

o   No stealing

o   No fighting

o   No arguing/back talk/disrespect to the staff

o   Tell a staff before you just walk off

o   Follow all directions/instructions

o   Label all your belongings- if not labeled and gets lost or stolen, not responsible.

o   Only time electronics/phones/etc. are allowed: Morning before camp starts, after lunch (quiet time), and Snack time, and Nighttime before bed (if sleep away camp)

Skills/ Life skills taught and offered (whatever able and under supervision):

·        Grocery shopping/ Recreational shopping

·        Sweeping/dusting/vacuuming

·        Making beds

·        Library- getting library card, checking out books, etc.

·        Teach how to take public transportation

·        Social skills?

·        Outdoor work- cutting grass, spraying, weeding, etc.

·        Washing dishes/load dishwasher/putting dishes away

·        Loading laundry washer/dryer, folding, and saving clothes

·        Setting a table

·        Cooking/baking

·        Putting leftovers away in fridge/freezer

·        Reading/writing

·        Writing letters

·        Making routines (to do lists, etc.)

·        How to fundraise/marketing

·        Counting and managing money (budgeting, rolling coins, etc.)

Sayings/ Mottos:

·        Try before saying “I can’t” = “Yes I can!”

·        Life puts pressure, pressure makes you tough= Diamond tough!

·        You are only as limited as you see yourself= don’t put yourself in a box of limitations

·        Life has obstacles, but they can be overcome= just find a different path!

·        Everyone has a different path and journey- don’t try to be like everyone else= being you is Beautiful= Be You tiful!

·        You are a diamond, don’t let the world dim your sparkle and shine

·        You are a star, don’t dim your light

·        You must train hard to be victorious= it is hard, but well worth it!

·        Life is a journey

·        You are from Louisiana. You are proud Cajuns or LSU tigers. In Louisiana, we don’t back down from a challenge, we grab hold of that challenge, wrestle with it until we eventually conquer it!

Fundraising Ideas:

·        Dances/parties

·        Sell plate lunches

·        Garage/yard sales

·        Benefit days (Fundraisers)

·        Go Fund Me/PayPal/etc.

·        Bake sales/Lemonade sales

·        Sales by “campers” (Interact and sale their cooked/baked/created/ or grown items)

·        Community day- set up booths and talk about and ask for donations (have campers help)

Each Camper gets (with admission):

·        Cap/hat

·        Shirt

·        Rubber/jelly bracelet

·        Backpack

·        Tumblr

·        Nametag

·        $5 in “Camp Bucks”

Guest Speaker/Guest ideas:

·        First responders (Police, firemen, ambulance, etc.)

·        Dentists

·        Eric Williams “Guns down,” chess spokesperson

·        Out of state people: Ali McManus, Madelyn Hubbs, Katie Ladlie, Mia Williams, etc.

·        UL Life/ Disability office

·        Librarians to come read to them

·        Famous locals: Drew Brees, Dev. Henderson, Sean Payton, Coach O, Lauren Daigle, Hunter Hayes, John Morgan (Ragin Cajun comedian), etc.

·        Local artists and musicians- Jaxon Meche (music), Eric Gautreaux, Lindy and Matt/One trick pony (Music), Whitney Marks (art), Emily Ortego (Music)

·        Roni Dubroc – about the Baton Rouge thing?

·        Local cooks/bakers/etc. to offer class

·        Girls’ and boys’ clubs?

·        Scouts of America?

Camp Name Ideas:

·        Camp Able

·        Camp Ability

·        Camp Potential

·        Camp Expectation

·        Camp Destination Expectation

·        Camp Equality

·        Camp Inspirations

·        Camp Victory/Victorious

·        Camp Glorious Journey

·        Camp Cajun Crew

·        Camp Conquer!

·        Camp United Hearts

·        Camp Pure Unity

·        Camp Utopia

People to Talk to for input, etc.:

·        Dreams foundation

·        IMPAC

·        Beacon Club (ULL)

·        UL Life program and office of disabilities

·        Dr. Beasley (UL)

·        Lion’s camp

·        ARC

·        Autism Societies

·        Families helping Families

·        LRS?

·        Bambi Polotzola

·        Laci Polotzola

·        Robyn Blackwell

·        State office of disabilities

·        Derrick McBride- One-piece Missing Foundation (Autism)

·        Boys and Girls Clubs

·        United Way

·        Church Camps

·        Dr. Donna wadsworth

Things need to do:

·        Present proposal

·        Community day- go out in community to present my proposal idea, give info about why this would be a great thing, etc. maybe have some special needs kids help…?

·        Find sponsors

·        Find a location

·        Get funding

·        Look at liability insurance, health care, health department assistance (red cross)

·        Look at buses and transportations services

·        Vocational ed. department or vocational tech schools support or assistance Rural health and rural education programs and grants**

·        Figure out budget and admission cost

·        Figure out if going to provide lunch or go to a school (like camp did)

·        Find and hire staff (including health care- nurses, lifeguards, etc.)

·        Figure out lesson plans for weeks/ activities

Things Needed:

·        Game tables (foosball, air hockey, pinball)

·        Art and craft supplies (Crayons, Markers, Paints, Construction Paper, Cardstocks, glitter/glitter glues, hot glue/hot glue sticks, cricut materials, paint brushes, scissors (kid safety scissors and regular scissors), chalk, pom poms, pipe cleaners, color pencils, pencils, pens, paper, jewelry beading and thread, friendship bracelet thread, duct tape/washi tapes, etc.

·        Games (Board Games), sports equipment (balls, bats, gloves, racquets, etc.), jump ropes, bubbles, water balloons, sprinklers, squirt guns, puzzles, etc.

·        Pool toys, goggles, sunscreens, pool noodles, inflations, kickboards, floaties, etc.

·        Snacks (drinks, chips, snack cakes, sandwich fixings, burger/hot dog fixings, brownie mix, cake mixes, jellos, puddings, etc. kitchen stuff, popcorn, stuff for smores, BBQ, ice cream sundae fixings, stuff for homemade ice creams, stuff for homemade snow cones/slushies/popsicles, stuff for popcorn machine (kernels, salt, butter, oil, etc.), etc.)

·        Books to put in our “corner library”

·        Movies/DVDs for “Movie library”

·        Fireworks (especially sparklers and “poppers”/” snappers”)

·        Wood for bonfires, firepit

·        BBQ Pit

·        Hygiene stuff- deodorants, soap, toothpastes/toothbrushes, Listerine, floss, shampoo/conditioners, Kleenex, sanitizers, etc.

·        First aid stuff- Neosporin’s, medications (Advil, Tylenol, Motrin, cough syrup, chloreseptic,) vapor rub, nose sprays, Band-Aids, ice packs, alcohol, peroxides, thermometers, heating pad, massagers, essential oils, etc.

·        Mosquito and bug sprays

·        Gardening supplies (seeds, bulbs, plants, soil, gardening tools and gloves, etc.)

·        Disposable cameras

·        Musical instruments (tambourines, guitars, ukeles, pianos/keyboards, triangles, maracas, dancing ribbons, etc.)

Campers are responsible for bringing:

·        Snacks (will be provided if forgotten)

·        Pillows/blanket for “quiet time” after Lunch (if going to lay down, if not bring book or some type of entertainment to keep quiet)

·        Jackets (in case it is cold inside building), change of clothes for swimming days (towels, sunscreen, clothes, etc.), change of clothes if not fully potty trained, etc.

·        Money (when= pay for trips)

·        Any medication the camper is responsible for taking

CAMP Groups:

·        Green– the youngest group (needs most attention/supervision)- not based just on age, but also how much supervision they require, emotional outbursts, etc.

·        Blue group– Second youngest group (still needs lot of supervision but not as much as green group)

·        Red– Second oldest group- getting ready for the older group, somewhat responsible and have good emotional control (Pink/purple: “Red group” age but need more help/supervision)

·        Yellow group– oldest group -somewhat responsible, “adults” of the campers (Orange: the “yellow group” age but need more help/supervision)

#Medical, ADA, Adult, adulthood, Adulting, Advocacy, appointments, Autobiography, Back Pain, BackPain, cardiovascular, Chronic illness, Chronic Pain, Chronicillness, collagen, College, College student with disabilities, College with Disabilities, CollegeStudentwithDisabilities, CollegeWithDisabilities, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, doctor, Doctors, drs, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, future, genes, geneticist, genetics, genetics doctor, genetics dr, Handicap, Handicapped, Handicaps, HealthCare, Heart, heart conditions, heart disorders, heart health, heart issues, heart problems, hospitals, illness, Inspiration, inspirational, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Life, Louisiana, Lungs, marfan Syndrome, MarfanSyndrome, Medicaid, medical, medication, medications, memoir, Motivational, Pain, Pain Doctors, Pain management, pain meds, PainDoctors, PainManagement, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Respiratory, Scoliosis, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spine Pain, SpinePain, Spoonie, Spoonies, students with disabilities, StudentsWithDisabilities, support, Syndromes, Uncategorized, Zebra, Zebras

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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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! 

#Medical, ADA, adulthood, Adulting, appointments, At home, Athome, Autobiography, 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, Infection, infection drs, Infections, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Life, Louisiana, Medicaid, medical, medication, medications, memoir, Pain, pain meds, Parents of Disabilities, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, Shriners Hospitals, Shriners Hospitals for Children, sick, sickness, Side effects, Special Needs, Spinal Deformity, Spinal Fusions, spinal infections, SpinalDeformity, SpinalFusions, Spine, Spine infections, Spoonie, Spoonies, UnBreakable, Uncategorized, Weird, wellness, Zebra, Zebras

Disability Update: Good News/Bad news, Infection Update

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 I got a email from the Mychart app from my Infections dr; Dr. Mejia. He got my bloodwork results in from Quest diagnostics in Lafayette, LA. Good news, I am negative for infection (meaning, no more infection in my body) according to the bloodwork. 

Bad news, he still insists on the plan of antibiotics being a life-long thing; due to the “complexity of the infection,” whatever the heck that means. 

To say, I am disappointed and upset is an understatement. This makes 2 years that my labs show I am infection free. I had hopes that I could eventually get off the antibiotics. I am not even 30 years old yet, and the idea of life-long antibiotics; God willing I live to a ripe old age, that would be 60+ years of antibiotics! 

yes, it times like these it is hard to see the light and positivity of my life, but I cannot loose my faith and Hope in God my lord and savior. He is good and all powerful, he is all knowing and can perform wonderous miracles. He is the only one who knows how my story will go. Be gone, Satan, quit tormenting me with emotional meltdowns and sorrow. I will try to look to God and find peace in his love and warm embrace. 

#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

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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

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Scoliosis Journey Vids

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New videos on my youtube: A slideshow of my 2012 Halo Traction+ Surgeries in St Louis, Walking after surgery, and rambling on pain meds after surgeries.

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disability journey: Broken rods – facing my parents and such…

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 As we are aware, I had re-broke my spinal fusion rods and was dreading facing my parents about it. This weekend, my parents came in off the truck. As soon as they saw me, Dad asked “what happened to your forehead” because that was the first thing he noticed. “Well, you see, there was a incident in the backyard on the steps. I fell…and re-broke my rods.” They didn’t look happy, but didn’t say anything, later they mellowed out and we joked about it. Then I gave them some candy bars I had bought at the store on Thursday after the incident, before they came in, with the joke to David, “I’ll get their favorite candy bars so when I deliver the bad news about my rods, it will be less of a blow…Like…’look, I got yall favorite candy, oh by the way, my rods are re-broke. Oh just eat your candy bars before you reply.” hahaha. To which I recounted that story to them and they laughed. I am so lucky to have understanding and supportive parents with good senses of humor. 🙂 #Blessed. 

I also sent the Xrays to Dr. Kelly on friday through “snail mail” with post office saying it should be delivered/recieved on monday. So I will call monday to tell his office and hopefully by tuesday or wed, I will have some news on what Dr. Kelly had to say. I also hope I hear from the genetics doctor soon as well.