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.

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.

latest update in the winding road that is my life….(January 2019)

 The latest update in the winding road that is my life…. I got a referral to LSU Medical in Shreveport and then also the former care coordinator for the orthopedic surgeon that did my surgery, is trying to get me into the guy that took my surgeon’s position in St Louis, when my orthopedic surgeon moved his practice to NY. Due to neither NY or St Louis takes out of state Medicaid, or Medicaid at all, The only way I can see the Dr. That took my orthopedic’s position in St Louis, is by applying for “hardship assistance.” *Fingers crossed that works.

In other news, my fiance wants to move to St Louis, MO, because he thinks if I am on their Medicaid system, then the ST Louis hospital will have to accept it, plus he is under the impression I’ll get better SSI check (newsflash Hun, the max is $771.00 which I currently already receive.)

I also realized it will be different this recovery time, due to my former physical therapist no longer practicing, I will have to do it through the hospital. UGH!

I also realized I will probably miss my Beignet more than I missed my Mya; If that’s even possible. I love deeply and the thought of once again being away from my own bed, my own apartment, everything familiar and no Beignet to love and snuggle, hurts my heart. I also realized I won’t be in the children’s hospital wing this go-round, so the therapists will probably be tougher, and not as much fun recreational activities to keep my mind off the pain. Well, I guess this is my life punishing me for acting irresponsibly after my first time recovering after surgery. Karma sucks! LOL

Answers Finally! But bad news, another pothole plot-twist: Broken Rods (January 2019)

Due to my wound not closing up, we did x-rays and I sent them off to the surgeon who did my back surgery and he confirmed: broken rods and my kyphoscoliosis deformity was worsening. It would explain my increased pain each year, as well as why this wound isn’t closing or cooperating correctly.
Downside? My surgeon can’t accept Medicaid and it is the only insurance I have. To self-pay would range from 250,000 + dollars, not including transportation costs or lodging or food.

I am blessed, however, with an amazing fiance’ who immediately jumped on the computer to start up a gofundme. He says we will do whatever it takes to get this seen about. We also looked into getting a referral to LSU medical hospital in Shreveport. Also blessed by having the former care-coordinator for my surgeon as a contact, and she reached out to the surgeon who took over my surgeon’s position in St Louis. (The one who did mine in 2012, moved his practice to New York). There is something called “hardship assistance” and I can try getting that. We will still have the gofundme just in case.

So until this is solved, I guess wedding plans are on hold??? I need to get out and start prepping my body for revision surgery.

Link for the gofundme: https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring?fbclid=IwAR1eoT8HJHiIHSc6bX9Ej31bO0mhl5TIETaFEvpw8iXrHhme23ZlKcbbdWk

Another Pothole bump in the road Plot-twist: More medical issues. (January 2019)

know what I hate? people who don’t mean what they say…
I have been fighting a wound on my back on my incision scar from my back surgery since May 2017; it closes 3/4 of the way, then it reopens due to a hyper granulate of scar-tissue or something. The Dr in wound care has tried everything from “packing” it, cauterizing it, going in and taking out what he thought was the problem. He is at a loss, so he asked the orthopedic if he’d see me and he said he would. Well now, when they try to schedule me an appointment, the orthopedist’s office says they cant because I have Medicaid when the doctor already said he’d see me! 😡 
So now they suggested, getting my medical records and going into the E.R. at the LSU hospital in Shreveport. The E.R. because the office is backed up for appointments. 
This thing has been a giant pain in the butt, oozing all the time, wearing gauze and paper tape or bandaids, or spray/washing my shirts due to the oozing, only using towels once after bathing which increases washings; plus maybe that’s why I am so much achier now. I don’t know, but man this crap better be taken care of by my wedding next year. 
In other news, I am being sent to an oncologist (just the word freaks me out because usually they are associated with cancer.) My white count has been high since May 2018 right after the procedure to clean up my wound, and my GP couldn’t figure out why. could it be the wound being infected or could I have cancer? I do bloodwork on the 17th. Keep me in prayers, thanks. 
All these medical issues are one reason I am sitting out this semester of college.

Already a Bridezilla..Planning a wedding 1.5 year away. (January 2019)

I am already turning into a bridezilla. I am stressing over trying to find a venue that doesn’t have a capacity limit of 300 or less people for a decent price, with a kitchen to use, that allows us to self cater and self- booze. 😦 it is really hard.

Then trying to figure out who to eliminate off the guest list when I feel so close to everyone who ever came in my life. My love runs deep, and it feels like cuts of betrayl towards them when i cant invite them to my wedding day. 😦

Then to top it off, I asked my fiance’ 3 days ago if he had an idea for a first dance song..”no”. so I set out on a quest; a quest to find the perfect first dance song. I spent 3 days and resulted in 2.5 pages of potential songs (Sure, a good portion of them were Disney songs; I am a kid at heart, quit judging!).

 Today, I started to play them and 10 seconds into them “no, no,no.” to several of them, and then says he wants “that Bryan Adams Song ‘Everything I do,'” Seriously?! I asked him 3 days ago, I spent 3 days searching! and I loved alot of these songs.

I hate feeling stressed and about to blow up, so I am walking away for now. I will retackle it later after some goodnight sleep.