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.
Just ate #ChocolateCake for #Breakfast. Now I feel sick. Sugar distracts my #ChronicPain so I can go longer without #PainMeds but its not healthy and I have a risk for #Diabetes since my #Grandmother had it. Hopefully I don’t develop it before I have back surgery to fix my rods and my #ChronicPain.
I am tired of living a life of decisions; pain meds or risking diabetes, Fun and going out or cabin fever and bed but no pain, etc. It isn’t much of a life. Soon, Jamie, Soon!
A bad storm passed through Louisiana this week so it has been quite a bit of sleepless nights for me lately and then add in the dreaded once a month bullshit us females have to deal with, adding in stress, anxiety, hormones, emotional roller coaster, all that (sarcastic tone) “fun.” Tonight, I tossed and turned for 2 hours while my fiance’ just lays next to me snoring; sure, I could wake him up and make him suffer with me, but that is selfish plus he works to provide for us, so I guess he needs the sleep more than I do, but it sure would be nice to be able to talk these things out instead of blogging them.
I have a mattress that can elevate the head, it helps with migraines and sometimes my upper back (then I gotta deal with my lower back and hips hurting), but tonight my upper back is hurting and I am not even gonna use the head-elevation because lately it has been making my fiance’ back hurt in the morning; which sent me down the dreaded “rabbit hole” of the uncertainty of a future together: What if I become bed-ridden, what if he has to help me with everything more than he does now? That isn’t what he signed on for! It isn’t fair to him. I know he made a commitment to me and he constantly reminds me of it anytime I start crying and freaking out about how much pain I am in and the fears that sends into me about how uncertain my life and future are; I just don’t want him to have regrets or resentments. I love him, I really do, but when these fears kick in, I go into flight mode and tend to push him away, thinking I am saving him from being stuck in a sucky future with me and my damn disability. How can I expect him to accept it and what it does to me, if I cant even accept it completely myself?
If there was a pill created to make me “normal,” like everyone else in society, I would take it! Even though I also feel like having my disability has made me a well-rounded, wise, empathetic, compassionate, supportive, loyal, passionate person. Does it make me a bad person? Why is it I can be a support system and cheerleader for others with disabilities but yet I cant even accept myself completely? Does it make me a hypocrite? Maybe its just the pain talking; well the pain and the damn devil. I need to really work on myself and loving myself for me; whole-y and completely. Maybe after my surgery to fix my rods, maybe my pain will be better, and I can start being happy again. One can only hope.
On June 1, 2019, my cousin was getting married and it took 2 goodwill shops to find a silver sparkly dress that worked for me. It was flow-y and not “fitted” or tight; it looked great on me.
The next thing to do was hair and makeup. It took me over an hour to get that done so I did it early because after doing all that, I tend to deplete my energy levels.
I will post a Youtube video later on when I am done editing.
The wedding for my cousin was so much fun. The ceremony was beautiful. The bride was gorgeous. The celebrant(priest) cracked some jokes and made the audience chuckle. The reception was great with awesome food, great music, a beautiful cake, lots of fun and dancing, a cute cardboard cutout to take photos in, a fun and creative “send off for the bride and groom,” and of course an open bar! All the makings of a great Louisiana Cajun wedding.
For me, even though it wasn’t my wedding, I still had a great night. 1.) I wasn’t hurting for once, 2.) My stomach cooperated which is very unusual for social events, 3.) I got to see my godson and his family, and 4.) I danced and sang almost the entire night! I danced with my younger cousins, older cousins, strangers (to me- they were probably family or friends of the bride or friends of the groom), Mom, and my wonderful fiance’ David danced with me a few times for slow dances and one fast song, “Brown eyed girl,” (which is usually me and mom’s song, but Mom was nowhere to be found when it came on, so I had a substitute. LOL)
However, today, I am paying for all that cutting up and fun, as I am sore to the max! I slept till noon, soaks in the tub didn’t help, had to give in and take my pain meds.
I can’t wait till after surgery when I can have fun and not be so sore the next day. I missed having fun like that!
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.
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.”
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…Talk about paranoid!
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 at the time, 7 year old Niece, “Skybaby”, which Jamie and David try to include in stuff ocassionally to get her out of the house. (and now his other two nieces “J bird,” and “Ru-Ru/tator tot”)
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 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. 😦
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. justin 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” ❤ 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. ❤
Jamie's Twisted Journey 