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.

“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.”

Latest in my “twisted Tales” Journey-May 2019

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. ❤

Youtube ideas- March 2019- *haven’t done yet*

Gonna do a YouTube video(s) with my fiancé (eventually- when I am not hurting or in pain or drugged up on pain meds). Send us any questions or dares or something fun and we’ll answer/do on the video. #truthordare#QandA#fiancetag#bfgftag#jabberjawingwithJamie#youtube
#JabbinJamie #JamieJabs #JamiesJoy #JamiesJoyfulLife #JamiesJourney

Update: didn’t do, due to no one sending questions for us to answer and no “good days” as far as pain goes.

Update- March 2019

I legit have the best mom, hands down. She gave up some of the time she could be doing stuff for Heather’s baby shower to calm my anxieties and took me to wound care. Good news, it’s not an infection, it’s just a little red and that is “common when healing,” and I just need to “try to keep it covered as much as possible to keep infections out.”
She then asked if I had anything to eat at my apartment, which I did, but I told her “yes, but I am so tired of leftovers.”

Her: “Well, what are you hungry for? Sonic? Burger King? McDonald’s? Taco Bell?”
Me: “Taco Bell”
Her (continues listing, which was a mistake): Chick Fil A
Me: Oh my goodness, yes! My weakness! Chick Fil A!
Her: oh my! What about your stomach?
me: I am hurting in my back which means I don’t give a flying flip about my stomach’s issues. when I hurt, I eat junk. its my comfort.

her: Okay.
(so yes, she got me Chick Fil A nugget meal).

Then we went to Target, she needed some things for Heather’s baby shower, but didn’t find anything of what she wanted.
Her: Need anything before we leave?

Me: Well, I’d like some snacks so I am not stuck eating creamy peanut butter out of the jar till my food stamps come in.

Her: Like what?
Me: Just some popcorn, a thing of chips, some real coke cola and not the no-name brand cheapo one me and David been getting at Fred’s, some fruit roll ups, and some type of cookies.

Her: okay. I’ll get that for you.

So I legit have the best Mom in the world! and a great Dad who works hard to pay for it 😛 ❤ #Blessed

anyway, I am home now, and going try to rest despite my back aching.