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Life Update: Summer Special Needs/Inclusion Camp Proposal Idea

 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)

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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. 🙂 

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Life Update: Resuming College, Registering Fall 2021 classes

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

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

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

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

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

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

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

The next biggest issues while registering for classes:

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

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

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

#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!

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. 

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Disability Update: uh-oh! I fell!

 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! 

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Disability Update: Good News/Bad news, Infection Update

 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. 

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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

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Scoliosis Journey Vids

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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Heart Dr appointment and new medical vocabulary

Today was my cardiovascular appointment with my heart doctor and it seemed like a same-old same old- type appointment; which may be true for the doctor, but for me, as I have never really read over my discharge appointment summaries before really, I was shocked.

For some reason I decided to read my discharge summary papers once I got in the car, and according to the papers I had a few problems I was not aware of. I knew that they had said I had a valve that was being watched, but according to the papers, I have “acquired insufficency of aortic valve”, in addition to “non-rheumatic mitral regurgaitation,” as well as Sinus Tachycardia (I knew I had tachycardia but learned what type). I also have WPW (Wolf Parkinson white syndrome, which I knew about already and had a cardiac radiofrequency ablation for it in 2013.)

I scheduled a Echocardiogram for Jan. 15, 2021 at 7:15 a.m. and will get results on Jan 20, 2021 and will update with results when I get them.

But to see those new medical problems (even if they not new in my medical history, they were new for my discovery) were definitely scary and made me realize I need to maybe pay more attention to my medical information. It is my body, I need to be familiar with it.

Anyway, goodnight all.

Image may contain: text that says 'Problems 1. Acquired insufficiency of aortic valve 2. Non-rheumatic mitral regurgitation 3. Sinus tachycardia 4. WPW (Wolff-Parkinson-White syndrome)'