peeks into my life dealing with everyday life and obstacles as well as obstacles of dealing with disabilities and accessibility obstacles, Chronic Pain due to broken spinal rods, living on pain medications, dealing with anxiety/depression, experiencing the newness of love, and fighting for my right to live and love my life in an ableist society.
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
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. 🙂
My grandmother, Ruby “mommie” Cormier died on Sunday, June 9, 2019; one day before her 89th birthday. I took it hard at first because I had been wanting to do a Youtube tag video with her, but I kept hurting a lot and couldn’t get out there to do it with her, and now I can’t do it because she is gone. I was also upset, because I had always planned for her to be present at my future wedding, when I got all my college degrees, to see me start my own career and chase my dreams, and maybe even eventually see me start a family; well now, she won’t be around for any of those events, not physically anyway. I came to realize though, she is in a better place, she is no longer hurting or suffering from dementia or diabetes. She could truly start living a fun life again.
Yesterday, Monday, June 10, 2019, in honor of her birthday, a lot of the family went out to eat at Pizza Village (one place she loved to eat), Mom made a chocolate cake, and we shared lots of memories, laughter, and of course cake. We even sang “Happy Birthday,” and the other patrons of the restaurant probably thought we were a bunch of weirdos. The younger kids, her great-grand kids, wanted to do a balloon release and so we “sent the balloons up to heaven.”
Today, Tuesday, June 11, 2019, the “wake,” at the funeral home was from 4-8 pm. with a rosary at 5 p.m. It really wasn’t that hard on me today; sure, I got a little choked up during the rosary, but other than that, Again, we shared lots of memories and laughter between families and friends. My younger cousin, Hadley, (4 years old) kept “arresting” my dad and putting him in “han-cuffs.” Adorable kids are always a good distraction from the pain of grieving.
Me: Hadley, you arresting uncle ronald?
HK: Uh-huh
Me: you know thats my dad, right?
HK: *Looked worried I was gonna tell her to leave him alone*
Me: Good Job, Get him. Give me high-five!
she just giggled and gave me “five”
(She’s definitely come a long way since Easter two years ago when she would run away from me! lol)
More than likely tomorrow will be the real challenge when they close that casket and we have to leave her. I am gonna try to read what I wrote the other day in dedication to her when she first died…I might get choked up but I will try to do it.
I found an angel pin that I put on her to be buried with, and a picture of me, her, and david from Christmas 2017 when David and I first started dating. Also being buried is a toy cat that supposed to represent “Socks” (her cat she had before she went in the nursing home), and some pictures of her, Hadley, and Hadley’s older brother “Braylon”. Those kids are young, but I hope they know how much their great-grandmother loved them as much as they loved her. <3<3
anyway, good night. Thoughts and prayers with the family for tomorrow is appreciated.
Happy Birthday, Mom! I love you! Thanks for giving me 28 years of amazing memories.
Mother(another old poem i wrote)
Mothers,
wise women beyond their years
sweet and loving,
hold them dear.
help you through times,
good or bad,
if you turn away,
they become sad.
my mom is special to me
heart of gold
soul of passion to match
“I love you, ” i am told
only because she loves me
does she want what is best
for her daughter,
angel, apple-joy of her life, to be happy
you cant beat the best
you cant beat the love of my mother
love so pure an great
you cant compare her to the rest 🙂 LOVE YOU MOM! ❤
I cannot believe that my birthday is in 13 days and counting! I cannot fathom that I will be 28 in 13 days. It came too quickly. All I want for my birthday is a simple little get together at the apartment pool (If I am not in St Louis having back surgery yet.) I hope I get it done soon though, and I hope I am in and well enough to go to my cousin’s wedding in June (but his fiance and he both said they understand if I can’t.)
Just playing the waiting game; I called the hospital this morning and left a message to see if they received the CT scan disk. According to the USPS tracking, it arrived at its destination Friday, but that doesn’t mean they’ve checked their mail or anything yet; So just waiting for a call back now.
Don’t know how much longer my pain meds will work, they are starting to require more doses; David (my fiance) used the wrong word the other day. He used “Addicted” when he meant “immune” oooh boy did I give him an ear full! That is one thing you never ever ever use with someone who suffers with Chronic pain. That is one thing we constantly worry about when we have to take pain meds. People thinking we are “Addicted.”
Yeah, if I could let people feel what I feel on a daily basis with just a touch, we’ll see how many people think I’m “lucky” because I get to use handicapped parking, hover-scooters, etc. We’ll see how many people think I’m “addicted” to my meds.
we’ll see how many think I am just “lazy”.
…great now I wish I had that ability. darn it!
Jamie's Twisted Journey 