My mom gave me an update on my grandmother last night; they are calling in hospice but taking her back to the nursing home to ensure she is comfortable and safe. 😦 It doesn’t look like she has much longer. I need to go visit her now before its too late. I don’t want my last memories being regrets of not visiting her enough or her being sickly in the hospital a day or two before she passes. Mom said “she’s not in her right mind,” but it is like I don’t mind. I need to go visit her. My gut is telling me I need to go. So more than likely, she will not get to see me get married or graduate with my bachelors degree or any of those future things. 😥 *sigh*
But that is life, it isn’t always fair and doesn’t always make sense. As long as she isn’t suffering anymore, I need to remember that.
Category: Uncategorized
Clothes shopping with a disability- May 31, 2019
For as long as I can remember, shopping always was stressful and a meltdown for me. As a girl, I loved the idea of new clothes and shoes, but a lot of times, the stuff I like a lot, don’t fit the way I like or at all, and I end up having to compromise on an item I wasn’t as crazy about but fit better.
As a female, especially around the teen years, you would probably be shocked to know that I did not enjoy shopping. Oh, don’t get me wrong, I loved getting new clothes, but when you are a preteen/teenager, who is the only one her age still shopping in children’s department, it gets to be a little flustering.
It wasn’t just the fact that I wasn’t in the “correct” size clothing/ department for my age, it was also the trying on process. I’d grab tons of styles I thought were “cool” and “normal teen girl” fashions that were in children’s size department, but half of the time, maybe only 1 thing I had brought into the fitting room, actually fit and looked good on me, due to my posture and body due to the curve of my Scoliosis/Kyphosis at the time.
If something I really liked/picked out, didn’t fit, my whole world would shatter. I’d lose the joy of shopping for new clothes and have a tantrum in the store; having a “pity-party” and just give up looking, saying I wanted to go home. Thank God, Mom never gave into that, or I’d have gotten nothing. She would pull me aside, and we’d settle on whatever did fit, even if I wasn’t as crazy about that choice, as I was for the thing that I picked out, but didn’t fit. I wasn’t 100% happy about the choices during that time, but it was about 70%, so it was a compromise.
Another thing that was a pain to shop for was shoes! Due to my Ehler’s Danlos Syndrome(Actually, Marfans Syndrome), I have weak ankles, so I could never wear heels for dress shoes, only flats; but also, I had to have “high Top” sneakers for ankle support. Do you know how hard it is to find “high top” sneakers nowadays? If we got them the same day we went looking for them, we were lucky, after having to search several shoe stores of course. I remember one time, we searched all over Lafayette and Opelousas for high top sneakers and ended up having to wait because we couldn’t find any, thankfully my old ones weren’t so tight that I couldn’t wear them anymore. Shoe shopping was another meltdown. For formal/special occasions, I loved to dress up, and I’d see these lovely heels, but, no, I couldn’t get them because of my weak ankles; I didn’t cry about that, because I knew “can’t wear them,” but I would say “Man, I wish I didn’t have weak ankles, Those heels are so pretty. I’d look so hot in them!” I always had to go with flats, usually, I got ballet slippers, which were easy to slip on and off, so I didn’t mind. The real struggle was for sneakers, because at the time Converse shoes were getting really popular and I wanted what everyone else got, or some really girly shoes; considering the only place we’d usually find high-tops were in boys/men/ or athletic shoes; Half the time, I was wearing boy shoes, and I got teased “Jamie’s wearing boy shoes, Jamie’s wearing boy shoes. She wants to be a boy.” When I couldn’t find shoes that I liked, that were also high tops, I’d have a meltdown like I would when clothes shopping; pitching a fit in the store, and giving up.
Eventually, I gave up trying to fit in, gave up trying to avoid the teasing, because it was something I couldn’t change. It wasn’t like anyone from school would see me in the clothes anyway since uniforms were mandatory. It was just the shoes they’d see, and I couldn’t help that I had to have ankle support, so anytime someone would start to tease me, I’d stop them and say “You know what? Yes, I am in boy’s shoes, but I have weak ankles and need the support for my feet. It’s something I cannot help, but you know what? I got a great personality and don’t deserve this teasing. I have people who love me, and I am going to start loving who I am and things that make me different. Yes, I will have bad days and feel bad about myself and my differences, but I will get over them; whereas you will always be an insecure jerk-off who teases others because you have nothing better to do with your sad pathetic life, so I suggest that you shut up and get a life,” and I’d walk away, or once I got in Jr high school and my “dynamite temper fuse” blew up, I’d start fighting, hitting, and kicking; but I always stood up for myself and never backed down. You know what they say, Dynamite comes in tiny packages, and I am a prime example of that phrase when it comes to people teasing me, teasing or discrimination against special needs individuals, or anyone giving my friends/family problems; I am there, ready to fight, take names, and kick butt. Dynamite Jamie! HAHA!
However, After my 2012 surgery, shopping had gotten a lot easier to find nice clothes that also fit great; but like all good things, it came to an end over the years, and now I have the answer of why: My spinal fusion rods are broken, and my Kyphosis started to get worse again- so that poor posture in my body was back, especially my hips/waist area making my belly protrude out like I am fat or something, when in fact, I am at the perfect weight for my size. Then almost all dresses are fitted nowadays in the waist area; So annoying!
Any other #disabled especially those with #physicalDisabilities have troubles with clothes shopping? Especially #girls #women? I have a wedding tomorrow and had to go to several goodwill shops before I found something not #fitted and #tight and actually looked good on me. Times likes these make me wanna make #clothesLines for people with #physicalDisabilities. But I’m not good at drawing. I have the ideas in my head, but when I try to put to paper, never looks right. Ugghhh.
Haters can “move along,” (older youtube video)
Got the most devastating news today-May 2019
Just 11 days before my grandma’s birthday, my fiance’ had a missed call from my mom this morning so I called her back; she wanted him to tell me that my grandma(mommee) is in the hospital and it wasn’t looking good, that her kidneys were failing and they were debating on dialysis. Just wanting me to “prepare for the worst.”
My “Mommee” is my last remaining grandparent and after she passes, I will basically be a “grandparent orphan.” Never will she get to see me walk down the aisle for my wedding(which is a year away), never will she be able to see me become a parent, never will she be able to see me finish school and chase my dreams, or any other things I had dreamed about her seeing for my future.
I love you, Mommee. Please recover from this, but I also know that if you do pass, it is God’s will and you will be in a better place. No longer suffering with the dementia, confusion, and pains of this world; only the loved ones left behind are the ones who mourn and grieve the loss. ❤
Love










AntiBullying Rant (youtube video, Posted 2018)
End bullying now!
VBS SonTreasure Island Dance Youtube Video (Posted on youtube on 2019, but VBS Summer 2018)
The dance from Summer 2018- I did the best I could. I don’t have the best coordination, but the main purpose of the counselors doing the dance isn’t to “perfect,” but to help teach our class the dance moves and encourage participation, which it did. So mission accomplished.
“heart” Poem- (old piece)

Red heart,
Symbol of love,
Fitting together
Like pieces of a puzzle.
Love,
Community, people, socialization
Family, friends, significant others,
Neighbors, simple strangers on the street.
People equal love and happiness,
Loneliness equals sadness, depression,
No heart equals no love,
Overwhelming dark black hole,
Sucking away any chance of happiness.
A body like a rollercoaster poem-(old piece)
A Body Like a RollerCoaster:
A body likes a rollercoaster
Lots of twists and turns,
A winding track,
Many different options to explore,
Many different twists of the curves,
Twisting one way,
going up a giant incline,
Slowly climbing up, up, up, to the very top,
It can be quite a tiring experience; that long trek
Then the scary part, the drop!
You drop down,
going faster and faster,
gaining speed as you drop down the tracks
Another twist in the tracks,
then a loop upside down,
You start screaming!
With lots of ups and downs,
“Bumps, stumbles, and falls,”
“bruises and scars,”
Not just physically,
The “rider” (patient) can also be traumatically scarred too,
Turning life upside down,
Like loops on a rollercoaster,
Making the victim,
The patient, plagued with this disorder
The limiting disability known as Scoliosis,
scream and cry,
tired and emotionally drained,
“Let me off now,
Before I die.”
The last week-Stomach problems-May 2019
The last week or so, I been having stomach problems. First, my fiance’ niece was over here and any change in routine and my stomach routine goes out of wack (constipation). I was hurting more in my back and hips, lots of belching, bloating, nausea, decreased appetite, and gas; so I thought maybe it was due to constipation, however, once I did get back on my bathroom routine, I still had problems continue.
when I am hungry, I get nauseated, and once I eat, it chills out for a little while, unless I overeat, and then nausea comes back. I still have decreased appetite, craving more sweets, still belching a lot, still got a lot of bloating and gas, and at least my pain in my back and hips has returned to its normal-pain levels.
Yesterday and Today, it was BBQ lunch I had yesterday and then I also had red velvet cake today, so my stomach is really hurting and gurgling 😥
August cannot come fast enough. I think that is a lot of my issues- the broken rods, my Kyphosis getting worse again, putting pressure on my tummy. 😦
Happy Birthday, Mom-May 2019
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! ❤








