clothes shopping with a physical disability

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, 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 30, 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 from dementia, confusion, and pains of this world; only the loved ones left behind are the ones who mourn and grieve the loss. <3

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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,
An overwhelming dark black hole,
An emptiness inside,
Depleting away any chance of happiness,
Plaguing humanity into pits of depression and misery.

A body like a rollercoaster poem-(old piece)

   A body likes a roller coaster
Lots of twists and turns.

A winding track,
Many different options to explore.

Several 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,
Your life in chaos and feel like the world on your shoulders,
Sending you into deep down depression and anxiety.

Meanwhile, the world is still spinning,
Going faster and faster,
Gaining speed as you "drop down the tracks" of life,
With you struggling to keep up.

Another twist in the tracks,
Then a loop upside down,
You start screaming,
Feeling like you are going to die,
Your life flashes before your eyes.

               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 roller coaster,
Making the victim,
The patient, plagued with this disorder,
The limiting disability,
Scoliosis.

 Screaming and crying,
Although it seems as if no sound wants to come out,
Tired and emotionally drained,
“Let me off now,
Before I die.”

The disabled battle cry!

Our Crazy "Twisted" Rollercoaster Love story=David+Jamie (old written piece)

Once upon a time, there was a young woman named Jamie. Jamie thought she would die alone because she wasn't normal; she had many medical disabilities and low self-esteem as a result of being bullied most of her life. She ended up dating a guy with spina bifida who made Jamie realize that love was possible, but she thought it would be with someone with disabilities because they were the only ones who understood that majority of the world was against them. However, Jamie had been raised to be independent and the young man with spina bifida relied and blamed everyone else for his problems, so Jamie, for the sake of her sanity, ended it because she was constantly nagging him and trying to change him, which wasn’t good; she didn’t like the person she was becoming.
               Once again, Jamie thought she'd die alone. One day, she decided to muster up courage and see what would happen if she put herself out on the dating sites; and when someone would message "hey beautiful," she would reply, "are you blind, being sarcastic, or just crazy? I am not beautiful."
               During one of these encounters, a young man from Simmesport, Louisiana; an hour from where Jamie lived, contacted her. They talked via message on the dating site for a while and then he asked her if they could meet. They met face to face, at La Hacienda and it was a good date, however, Jamie was still hesitant and shy; she would check her rearview after the date to make sure he wasn't following her.
               On their “second date,” they went to a production at Opelousas Little Theater; Rocky Horror Picture Show. Neither Jamie nor David had seen the movie and didn’t know what to expect from the show…let’s just say it was Interesting, funny, and a little disturbingly awkward (at least for Jamie, not sure what David thought.)
               He took her to meet his family and they instantly fell in love with her; especially his 7 year old Niece, Serenity, which Jamie and David try to include in stuff ocassionally to get her out of the house.
               They continued to hang out and soon a love started to blossom. The young man was named David. David made Jamie laugh and smile, and some of her “quick wit come-backs” had returned; something her mom commented that “Jamie had lost over her years.” He was a great cook and baker, like Jamie. He was motivated, and went to church with her (something TJ did not do) . He was most, if not all, the things Jamie had dreamed of when she dreamt of love, but once she realized she was different than other girls, she gave up that dream. She had always thought “if guys only want dream girls with hot bodies, then I am their nightmare.” David changed that point of view somewhat, although Jamie still questions why he is with her when he could have anyone.

               Now the question of this journey will be whether David can break Jamie's shell of low confidence and self-esteem, and make her see her "true beauty," that he sees in her? Only time will tell or he may never break her out of it completely; a year later and she still questions why he is with her, why he loves her, and she is constantly worried that their future will be bleek and david will have regrets later on. What if she can't give him children? What if she loses her SSI because they get married? what if his paycheck isn't enough to support them until she can get her degree and make money herself? Worry, worry, worry, sometimes I wish I could turn my mind off! I love David but when that doubt gets into my head, I push him away because I worry I am not good enough for him. I need to stop and realize Love can conquer much, and doubt is death. Maybe One day I will. When I am not worrying and letting it get in the way of our relationship, the relationship is great fun for the most part. David loves to cook together in the kitchen. Sometimes, he will come up behind me and hug me or sometimes tickle me while I am doing something in the kitchen (cooking-wise or doing dishes or laundry- our washer/dryer is in part of the kitchen.) We play fight, I’ll play-punch him, and he will hold me and hug me, or sometimes pick me up and hang me upside down or over his head (I am terrified of heights) but I never “surrender.” I keep “fighting him.” Other times, we enjoy snuggling on the couch to watch movies together, and play “popcorn catch (which I suck at)” but it is a great excuse to start a popcorn fight (throwing popcorn at each other, which Beignet enjoys cause she gets to eat the popcorn when it hits the floor.) After a year we are still learning each other; our views (that sometimes differ which cause some arguments but we end up “agreeing to disagree” whether it be his patience level with his niece, Beignet sleeping in the bed, politics, religion, etc.), what things he enjoys/what things I enjoy, favorite foods, ideas for our future, etc. Our summer vacation in Hot springs was so much fun and I am glad my parents let me bring him along to our condo. It was a great bonding experience, especially when we went to the superhero and star wars museum! That was fun; dressing up in the Jedi robes and playing with the light sabers, hitting each other with them. HAHA! It is so funny how he was able to get me into star-wars, something TJ tried and failed to do. Guess David just had something a little more special, I don’t know.
 One thing that really gets on my nerves though is that I look so young and he looks so much older (even though in truth it is only 6 year gap), people think he is either my dad, my older brother, or worse, a sexual predator; “Aww what a great dad,” “what a sweet older brother,” or “what is that old man doing with that young girl?” It is even worse when my mom is with us, people then think him and my mom are married and I am their daughter. I am tempted to wear a sign or make t-shirts for us that read “I am over 21, he is not my dad nor is he my older brother and he is most definitely not a sexual predator. Mind y’all own business and stay out of mine (maybe add a middle finger for effect Ha ha.)
 All I know is I truly am happy with David ¾, (if not more) of the time with him. I can’t see my life without him.

We got engaged in December on Christmas Eve when he proposed to me at my parents house. :) The wedding date is set for May 23, 2020 unless it has to be pushed back due to medical recovery from my surgery.

The last Week-Stomach Problems- May 29, 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. :(

My fiance tortured me today- May 29, 2019

Not really! I had a infected bump on my foot and he had to pop it with a needle and I am such a wuss about needles and pain (as much as I've been in hospitals and drs appointments)! Then afterwards, he had to put peroxide on it and it burned like hell. I know he doesn't intentionally do it to hurt me, but to keep me healthy because he loves me. Still don't know where that bump came from or how it got infected?! Oh well.

Another Mystery of my life.

Happy Birthday, Mom!- May 29, 2019

Happy Birthday, Mom! I love you! Thanks for giving me 28 years of amazing memories.

Mothers (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! <3

I'm sorry! an Open Letter to my fiance, David. :(

Sometimes I wonder why my fiance stays with me: mean I never wanna cuddle/love on him because I am either hurting or it tickles (I'm really ticklish); I am always on my phone/computer/or tablet(The same things I got annoyed with my ex over- not spending time with me), then I get angry at him for the stupidest shit. Tonight I lost my anger with him over a joke.
We had been "play- bickering" before the "joke," and I guess I was already a little irritable from that and then he was teasing me because I had deflated my helium balloon from my birthday and had sucked the helium and he said "you already act like you don't have any brain cells. You killed them all." That is a trigger for me, because I already feel like I don't measure up because everyone I graduated from high school with has already gotten multiple degrees or have careers and I just have associates under my belt, struggling to get my bachelors, and I struggle very badly with math; So when he said that I lost it. I got so mad, I threw a can at him, I don't even remember what the can was, maybe it was canned Air that he uses to spray his computer to dust it- I don't remember, but he got his feelings hurt and lashed out at me for it and I totally deserved it. We made up now, but still I feel so guilty about It. I mean all he does is try to love and have fun with me, and I take things the wrong way. He cooks for me, he helps me when I am hurting, he even started a go fund me for my surgery. He just says stuff without thinking sometimes He's human and flawed like all of us, but at heart, he is a good person. I do love him, but my anger, anxiety, and depression get the better of me. I will continue to try to do better in the future, David, and I am so sorry. :(

Love,
Jamie <3

latest in my Twisted Tales Journey

I received a letter in mail today from St Louis. No info about if I was approved for hardship assistance/Financial Assistance, probably will call about that, but the letter was to confirm my pre-op appointments. just in case, please pass around my gofundme page https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring

Tuesday July 16 at 10:45 a.m., I will have a meet with Dr. Kelly to discuss surgery and sign my consent paperwork. Also on July 16, at 1 p.m. I will be meeting with the Anesthesia Department to have my pre-op testing completed.

It's getting more real! August is gonna come so quickly!!!

In other news, we have David's niece, "Sky-baby," for the week and also its the apartment complex's resident appreciation week. We had ice cream and waffles today, tomorrow is trivia and Pizza, Wed. is breakfast in the morning while supplies lasts.  Thursday they are gonna pick up our trash from patios in the morning and afternoon they offering free car washes. Friday is the crawfish boil! I'm so excited to enjoy these events and even more we get to share these fun experiences with "Sky" <3 we also gonna try to go treat her to Cajun Heartland State fair at Cajundome or we could go to Children's museum, Girard park, a movie at theater, go show her the turtles and alligators at Cypress Lake at ULL; There is also the option of Go Kart Ranch or Bowling<3 And she loves swimming. :) So just swimming and me doing spa-makeup and dress up, and board games with her, she already has fun :)

#AuntJamieandNieceBondingTime #ShelovesmeMorethanherUncle #ImtheFavorite LMAO. I love my future niece and she loves me. She doesn't notice or care that I have a disability; all she sees is someone who likes to have fun and entertain her and isn't as impatient with her as her uncle is. She sees someone who doesn't mind acting like a child but will adult when they need to. <3

Two youtube Videos dedicated to my mom for Mothers Day

https://www.youtube.com/watch?v=FzYM3MpgfkI&t=23s

and https://www.youtube.com/watch?v=5O1RdmBWkpo

Love you Mom, Happy Mothers Day!!

Ode to Mom on Mothers Day

Ode to Mom.

There are many ways to describe my Mom; the best way is through several songs lyrics.

The first song, Mom by Meghan Trainer.
“Ain’t nobody got a mom like mine. Her love to the end, she my best friend.” My mom is and always has been one of my most loyal best friends. She is there when I have “girl drama,” when I am “hating on myself,” because of my disabilities and pain, and sometimes she is just there to make me laugh or get me out to go have fun.

“All the times that I cried, she made me feel better,” it’s true, whether it be spiritual guidance with my questioning God’s motives for my disabilities, girl drama, relationship drama, etc.

“She taught me how to love myself,” she always told me, “Normal is overrated,” “This is your normal,” “God didn’t make a specific mold for people, that is society trying to fit everyone in a mold,” and the most important, “love yourself  first, then friends will come, and after that, eventually relationships. You should always come first.”

The second song, “Mother like mine,” by The Band Perry; “There's no safer place I've found
than the shoulder of her white night gown,” when I was a little child and scared, she was always there to dry my tears or rock me/cuddle with me. I always felt safe with her. Safe to be my true self without judgment- I could be silly, dance, sing, whatever, and knew she wouldn’t clown me like my peers, cousins, brother, and even dad, might have done.

“So the wars would all be over
'Cause she'd raise us all as friends,” rings true because she always taught me “treat others as you’d like to be treated,” and didn’t spout off any type of negativity towards certain religions/races/ethnicities/ other differences like some families shove down their offspring’s throats.

“Don't go away, don't go away from me,” definitely rings true because from a very early age, I was always scared of Mom dying and leaving me all alone (even though I had other family-dad, my brother, etc.) I love my other family, but nothing beats the love and support of my mother.

The Third song, “Because you love me,” by Celine Dion. “For all those times you stood by me,” she has always been there to encourage and support me whether it be through my medical tribulations, my dreams, struggles in school, or whatever. She has always supported me unconditionally.

“You're the one who held me up, never let me fall,” when I was a weak tiny baby and didn’t meet my walking milestone on time, she wouldn’t give up; she would get on the floor and massage my legs, hold my hands and help me. When I was tired to walk and until my legs almost dragged the ground, she’d carry me. When I would “dump on myself,” she was the one who would “hold me up,” and bring me back out of “depression” because she suffered from depression and didn’t want me ending up there.

“You're the one who saw me through through it all,” no matter whether it be something related to my disabilities, challenges, illness/sicknesses, fights with friends, etc., she always saw me through it all.

“You were my strength when I was weak
You were my voice when I couldn't speak
You were my eyes when I couldn't see
You saw the best there was in me
Lifted me up when I couldn't reach
You gave me faith 'cause you believed
I'm everything I am
Because you loved me” – When I wanted to give up and throw in the towel, whether it be schooling, friendships, or other obstacles, she was my strength. When I was too scared to defend myself, she was my voice. When I don’t see things, but she does- she is there to give me advice and help me see things, but also she leaves the ultimate decision up to me. She always sees the best of what I could be.

When I couldn’t reach, she would pick me up at times (when I was little, now she really can’t because we are about the same height LOL!) She gave me faith because she has an unwavering faith and belief, where as I tended to struggle. She is the reason why I am who I am.

“You gave me wings and made me fly”- whatever my dreams, she supported them and would do whatever she could to help execute my dreams and hopes and wants.

“I lost my faith, you gave it back to me”- when I struggled with my faith and questioning God about my disabilities or my purpose in life, she was there to help me.

“You said no star was out of reach”- she always told me I could do anything that I put my mind to.

“I'm grateful for each day you gave me”- I am grateful because some people would have aborted me, she didn’t.

“I was blessed because I was loved by you,” and she taught me how to love.

The last song doesn’t really describe our relationship, but I have to include it because of the memory attached to it and that song is “Brown Eyed Girl.” It is mom and I’s favorite song because when I was really young (I think 3 years old or so,) when I’d get home from preschool or days I didn’t have preschool, Mom would put on the song and we’d dance together in the living room and even today I tell her, “I will always be your brown eyed baby girl.”

As I’ve grown older, I’ve come to realize that not everyone is lucky to have wonderful mothers, in fact, some peoples families are so dysfunctional that by adulthood, they’ve pretty much cut off their families completely; Even now, my mind is completely blown away by this and can’t comprehend it but it is because I was always surrounded by love in my family.

I love you Mom, you taught me so much, gave me such a wonderful and enriching and somewhat “normal,” childhood and I hope I can be at least half as great a mom as you were to me, when/if I ever become a mom. <3 <3 Happy Mother’s Day!!!

Latest and not so greatest...lol

the latest update from my Scoliosis Journey: St Louis (Dr. Kelly's office) called. He still bouncing around about the simpler (just fixing surgery) or the bigger surgery. I told them Dr. Lenke said he was gonna talk to dr kelly and how he (Dr. Lenke) suggested the smaller surgery. Apparently, he hadn't talked to him yet, or the nurses weren't updated. 🤷‍♀️The nurse made a note and said if we do the smaller surgery, the date she has is Aug. 14(two days before the anniversary of my surgery in 2012) and the pre-op appointment would be July 16. They want me to do a pulmonary Function Test (I am having them fax the orders to my gp- because my Respiratory Doctor said and I quote "didn't see it as a necessity" because more than likely they would "do one before surgery," and I "have my CPAP machine this time." 🙄

in other news, I went to a pain management appointment on Monday, April 29. It was okay aside from spending all day there. It was just a consult. Typical dr. appointment- xrays, weight, and height, looked at my back, tested my reflexes, all that boring medical stuff. lol. I go back on May 28.

Also, Still fighting with that stupid wound on my incision- it opens, almost fully closes, then reopens. It's oozing bad the last few days, going to wound care today at 1. The wound probably will keep giving me issues until I get the rods fixed. 🤷‍♀️🤷‍♀️🤷‍♀️