Tag: NewMe

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Marfans Appointment at Baylor Genetics

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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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Superbowl 2023: So tired of Hypocrisy!

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Food for thought:

Let me start this post by saying this: I did not watch the superbowl nor did I watch the halftime performance. I did however see the facebook blowup about it, calling it demonic and inappropriate, etc. People say that about the halftime performance for the last several years…. Let me start by saying this: TV IS NOT YOUR CHILD’s Babysitter! Social Media is not your child’s babysitter! Quit letting these kids watch tv unsuppervised without knowing WHAT THEY ARE WATCHING, stop letting them SURF THE NET UNSUPERVISED!

I get that yall think it’s supposed to be “Family Friendly”, but alot of what yall bring yall kids to: parades, football games, even wedding receptions or family reunions can have “Demonic” influences.

Football Games and Parades: The Cheerleaders and dancers, yall wanna complain about the costumes and dancing of the halftime shows, but have yall seen the Cheerleader and Dancer Uniforms and Dance moves of these HIGH SCHOOL GIRLS? Sometimes even younger kids that are just in dance studios! (Not to mention what they might have to endure by DRUNK or Perverted People at PARADES!)

Also, the show performances most of the time match the music videos? sometimes even the music videos ARE WORSE!

Parades: Most of the people attending parades are either DRUNK or ACTING FOOLISH. People get hurt alot at parades, not to mention the dancing, some people get out of hand and even flash body parts, fights breaking out, etc. but yet they are “Family Friendly”

Look, i get it, you wanna protect your children, but you can’t pick and choose what you gonna complain and call demonic. Satan can use anything to influence and get us on his team, even the “Godly stuff,” because guess what…. Satan is a FALLEN ANGEL- he knows the religious stuff probably way better than most of us, and he knows how to use it and twist it to make us doubt or stray from God’s light.

Either Live the life and talk the talk- only watch religious programming, go to only functions you know will have no negative influences, etc.

which will stunt your children and make them rebel once they on their own, OR …STOP AVOIDING IT, and Talk to your kids! Explain things- that you’d rather them not engage in the behaviors they see, that it isn’t appropriate for their age, etc., but you will always love them, even if they stray from the path.

The only things we can do is have a relationship with God. Teach and uphold values and morals in household, but also be open to talk and answer questions (dont make kids scared to talk to you about things). Teach them about God’s love. We cannot change the craziness of the world, and what we cant fix, we pray because God can do anything. Only through a relationship with God and our conscience/gut will we know whats truly good and right, in our hearts. ❤

Just my thoughts. Anyway Goodnight.🙏🙏🙏

pray and do not be afraid for God is with us always 🙏🙏

Chronic illness, Chronic Pain, Chronicillness, disabilities, disabled, Disableds, Friends, Friendships, KyphoScoliosis, Kyphosis, Life, marfan Syndrome, MarfanSyndrome, medical, Physical Disabilities, rare disabilities, rareDisabilities, Scoliosis, Spoonie, Spoonies, UnBreakable, Uncategorized, Zebra, Zebras

When my Bestie visited…Pure Joy!

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The month of January 2023 was definitely a good one aside from the usual pain that I always experience during the cold months; my bestie and her little family (husband and daughter) came in for a month to visit. Her husband is in the service and they are currently in Italy. Her little girl is about 3 years old, and we just found out this week that they are expecting baby #2- hoping for a boy so that the dad wont be in “estrogen hell” lol.

Anyway, we spent 2 visits together while she was in, as they also had to visit between his family and her family. The first visit we took her little girl to Childrens Museum, a place that I enjoyed as a child and still enjoy and constantly look for an excuse to go back. Her little girl had me in fits of laughter, she definitely has her mommy’s personality- she called me a little girl and also had told her mom, “Damie ma fren now mama” lol.

The second time we just hung around the house and played pretend with my old tea party/kitchen stuff from when i was a kid. We also played doctor with “Aves” doctor kit. She kept making us “throw up the icky medicine” she gave us. It was funny.

I enjoyed my visit with them and was sad when they had to leave to go back to Italy and wont see them for a year, but I know a year will fly by rather quickly and next time we will have a new little baby to love on too.

But even still, I miss those old times when my bestie and I were younger in high school or fresh out of high school and being silly and cutting up, but thats life, we grow up and have to adult at times. Even though we are miles apart or dont talk every day, if I need, I know my bestie always has my back, and I will always have her and her family’s ❤ I love her ❤

Chronic illness, Chronic Pain, Chronicillness, disabilities, disabled, Disableds, KyphoScoliosis, Kyphosis, Life, marfan Syndrome, MarfanSyndrome, medical, Physical Disabilities, rare disabilities, rareDisabilities, Scoliosis, Social Disabilities, Spoonie, Spoonies, students with disabilities, StudentsWithDisabilities, Uncategorized, Zebra, Zebras

Goodbye 2022, Hello 2023

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As the year 2022 closes and the year 2023 opens, I wanted to go over and recap my year; How I’ve grown and flourished, even though it didn’t really start until May, I have opened myself up to new dreams, possibilities, and opportunities. I have also made many new friends and aquaintences.

Even though I continue to have massive stage fright and social anxiety in large crowds, I have started public speaking and helping out for or at events for 2 really amazing organizations/programs: Guns Down Power Up- Founder Eric Williams, and #The BullyBox A passion Project- Founder Shauna Sias: Through these programs and events, people I’ve met and talked to, have inspired new ideas, passions, inspirations, and possible opportunities to “open doors” to achieve my dreams!

In other news, I also been doing some projects on my cricut- I am still learning new things about it, and if I could just ignore the pain to focus, I could do alot more crafting and creating. It is just so hard to get myself distracted from the pain and focus on crafting. the pain is in the back of my mind nagging when I try to fight through the pain sometimes..it is annoying. I also went to my first Comic con in October and had a blast and now I am hooked! I am going to the next one in March and may even cosplay this time!

My cat, Taz, that I been having since April 2006 – 9th grade- passed away. He was almost 17 years old. We been through alot, me and him. He was still very spry until the last week or 2 of his life. He started hiding out in garage, which he always like the garage, but the day before we decided to go put him down, he was having a hard time laying down and was breathing hard. Turns out he had some kind of respiratory thing, that even if he would’ve been young when he got it and had it been detected early, he still wouldve struggled as it is uncurable. He had a long, healthy, happy life, and now, he is up in Cat-Heaven living in God’s palace. Love you, Taz-a-roo, and will miss you, even though you stressed us at times!

My godchild is getting older and breaking my heart (haha just kidding). I cannot believe he is 14 already. I also cannot believe that David’s oldest niece, “skybaby” is gonna be a teenager in April! I still remember meeting her for the first time when she was still 7! and now she has 2 younger sisters who I also adore like crazy.

My bestie is coming in from Italy sometime this month, I cannot wait to spend time with her! I missed her like crazy. I miss our fun high school shenanigans and craziness, but then she wouldn’t be married to her husband or have her beautiful little girl who I am also crazy about. I cannot wait to spend as much time as we possibly can while she is in.

I cannot wait to see what fantastic adventures God has in store for me in 2023. Here is to good vibes and hoping I continue to discover more about myself and flourish into the person God wants me to be. Only through his grace and will…Amen.

Happy New Year, Everyone!