another sleepless night; chronic pain and tears.

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.

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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.

Happy Birthday, Dad! Youtube Video- May 2019

To My dad: For some fun times and those rare occasions when we don’t fight. You gave me my personality, blonde hair, sense of humor, and my ability to live as independently as possible; thanks for pushing me, despite having a disability.  Thanks for everything Dad. I love you.

I know I give my dad a lot of grief, but he has actually taught me some pretty cool skills. As a child, he would take me outside, and I’d watch him do wood-working things with the hammer, saw, etc. HE even let me work the saw sometimes! I practically grew up going to Lowe’s or JB Sandoz Hardware store, quite often! Another thing I remember doing often was when he’d be “on call” for work, and he’d take me with him; at his office there was this “magic dry erase board,” that would print whatever was written on it, and it could move to a different/clean board; I just was so fascinated by that board! We also went to Waffle House quite often for breakfasts and went eat at Deano’s Pizza a lot too; I still joke with mom, “We can’t go to Deano’s without Dad; that’s blasphemy!”

Another thing I remember doing with dad was the first time that he took me “crabbing”. Crabbing is where you go catch crabs, and no I don’t mean the STD; I mean, Crabs, the seafood.  We had to leave really early in the morning, so just like for Shriners trips, I would pack a bag the night before, and just change in the backseat. I remember we had ham sandwich supplies to eat lunch, and the darn seagulls were chasing me for my sandwich; finally, I just threw the sandwich and let them have it. I had so much fun, 10 years old, running on the docks to check the crab traps; getting all excited and jumping up and down, “DAD, There’re some crabs in this one!”

Another favorite memory with dad was when we’d go to go kart places; like the Kart Ranch in Lafayette. We’d ride go-karts, Dad always had me ride with him because we are both super competitive; I could trash talk the other people while he drove super-fast, making the hair blow in my face. While there, we also would do mini-golf and I always got a pink golf ball.

The funniest memory was when we were at my Aunt Sandra’s house in the country, somewhere in Texas. We went 4-wheeler riding and went fishing. I don’t mind the fishing, as long as I don’t have to touch them and they don’t flop around near me. I was scared of fish, for Pete’s sake! (What wasn’t I scared of as a kid?!)  Anyway, Dad had caught a fish, and it was on the back of the 4-wheeler and I was sitting on the 4-wheeler; the fish starts flopping closer to me, I scream! It’s funny now, but I was scared to death when it happened. Another memory was when we were riding 4-wheelers (ATV); Dad kept jumping the hills on them, and he lost his glasses in the fields after he had jumped one of the hills. I liked riding the 4wheelers: The wind in my hair, the thrill of jumping the hills; although the landing afterward, made my stomach jump into my throat!

Yes, Dad and I have a…Complicated relationship, but when we get along, it’s golden. I love him, even if he does work my nerves, and I do treasure these memories and things he’s done with me. I will never forget them because they are always in my heart, and I ask for some repeats now and again, like crabbing, which we should be going do again real soon; yay!