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“Inner Struggles” Poem

Look into my eyes, 

can you see my soul? 

the dream I hold inside;

Longing to be accepted,

for everything I am,

All I Believe and hold dear,

and no longer have this burder,

the side of me that I hide, 

Longing for release and freedom, 

and my dreams to take flight. 

The girl longing to break free, 

this curse,

feelings of not good enough,

inadequacy, and self-consciousness,

scared and shy, 

to take the stage, 

and follow her heart. 

Dreams of being able, 

to sing from her heart and soul, 

and to dance with the passion that burns inside, 

To feel beautiful, 

to see her beauty, 

her talents, 

and all that she is,

except in her own eyes, 

To stand there, in the mirror, 

and finally, see her personality, 

the raw beauty inside, 

shine through.

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So annoyed with rude people…

I had my go fund me page since Jan or Feb. people have been generous and I thank them (especially the author of “Wonder” who generously donated $1000.) However, I share it constantly on all my social media platforms and a few people share it, but today made me so sick to my stomach.

I shared it a group on for people with similar disabilities and one of the members felt it was her responsibility to “set me straight.” – Evidence down below: Sally Hockman is a snooty and rude individual. She doesn’t know my story. She doesn’t know what I deal with on a daily basis. “Many people have broken beg for money,” but do these people happen to have great health insurance or doctors who take no matter the state? ….some people aren’t lucky!

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A wrecking ball of bad news; my heart broken and demolished into a zillion pieces.

Today, while in the waiting office of my pain management dr, I was scrolling through facebook, when I suddenly saw something that ruined my entire rest of my day; A friend of mine in St Louis, Missouri, Mr. Mike James, passed away overnight.

I met Mr. Mike James in 2012 while I was in halo traction at Shriners Hospital for Children-St Louis; he worked at Cabela’s and the company would come to the hospital once a month for “Cabela’s night” where their volunteers would bring educational things about Native Americans, animal trapping, hunting stuff (no weapons) just pictures or like duck calls. It was a highlight of the month for all of the patients to enjoy.

I was one of the oldest patients there, so the adults would often talk to me about “Where I was from,” “what I liked to do,” “If I had ever been to a Cabelas,” stuff like that, and a few of them got close with me because of my “spunky attitude,” these included Mr. Mike James, his wife Nancy, and our mutual friend Beverly Duval. They were there through it all- my surgery, my recovery until I went home, when I went back for checkups, when Beverly hosted me for a week for spring break, my first boyfriend, and they had just met my fiance’ and he approved of him, even liked him, and planned on attending the wedding next year. Now he’ll just attend in spirit.

One week and a day ago, we were having dinner with you and your wife. One week and a day ago, we were laughing and chatting and catching up, you and my fiance’ were talking “hunting, guns, Trump, politics, all kinds of things.” Plans were made to attend my wedding next year, talks of us thinking of possibly moving near you and your wife, plans for you and my fiance’ to go hunting together. 
Now you are gone, back to heavenly home and everyone left behind are in mourning. 
You were one heck of a guy, Mr. Mike James. I will miss your comments on my facebook, I will miss seeing you when I go up to St Louis. It feels like a bad dream that I cant wake up from. I wish I could just wake up and this nightmare not be real. It feels like someone punched me in the stomach. it feels like a giant lump in my throat. It feels like my heart has shattered into a zillion fragmented pieces. 

😥 RIP Mr. Mike James. I know you def. earned your angel wings. 

❤ Fly High.

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The latest “Twisted Tale” in my journey called life; Surgery coming up fast!!!!

so the latest on my back: I saw dr. Kelly today. He is very optimistic. His plan is if my rods aren’t infected (we did labs), he says he will just open the incision scar where my rods are broken at, clean up my wound, and add in some “dominoes” and add in some extender rods.” It will be “Simple and sweet,” as he put it. 

:p The date is the same, August 14, but I need to be here by the 12th because I need to go to get my central line valve put in on the 13th. If he does what he wants, “simple and sweet,” he doesn’t think I will have as many complications like I did last time bc last time I had broken ribs and pneumonia from that which led to trach, blah blah blah…the framework already there, this is just some maintenance repair! LMAO. 
But whatever God’s will, will be done. 

Share my go fund me please!!! https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring

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A pretty great Sunday :)

I woke up with a minor migraine, but no level 10 pain today in my back- could’ve been that I knew Mom was bringing my sweet Beignet (my mixed-breed rescue dog) for a visit; ever since finding out about my broken rods, she’s been living with Mom due to my not being able to hold her leash for walks. Mom dropped her off around 10:30 a.m. (Mom went to Mass). 

Mom came back from Mass at about Noon and asked what David and I were doing for lunch. I said, “we have leftovers, but it didn’t sit well on my stomach.” Mom asked “what do you want to do,” to which I replied, “I know I always say it’s blasphemy to have Deano’s pizza without Dad, but…” Mom laughed and replied, “but you want it?” To which I nodded my head. She got a giant 3-type pizza like we normally do and it was delicious! She then left to go get things from my Uncle and Aunt’s house and was going to come back afterward to pick Beignet up to go home (She came back at around 4ish.) 

I got to spend about half the day with my sweet Beignet 🙂 We snuggled, practiced some commands, played with her toys, all 3 of us took a walk (David, Beignet, and I- David held the leash). Was a great visit with her, and I was ready to see her off at 4ish because I wanted a nap (didn’t want her to leave, but I knew she was gonna leave anyway- so I wanted to treasure the time I had with her). 

While Beignet was here, I had very minimal pain, but it must’ve been a distraction or something because a half hour after she left, I had to take my pain medication because it hurt really bad again. *Sigh* 

At least half of my day was good and sunshiny, that is better than nothing at all 🙂  

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a nice morning surprise; despite Chronic Pain

I awoke this morning to find a bunch of attachments from my fiance’ family; it was of “Baby J-Bird” (Josephine)- my fiance’ 9 month old niece, playing with her new build-a-bear we did with them yesterday. She absolutely loves and adores it. Despite my chronic pain and need for relief and pain meds, and despite my Wound bleeding badly and acting up again, but that is Life and can’t do much about it.

I’d post the video I did of Serenity doing hers, but the site isn’t letting me.

In other news, I finally got my “official” engagement ring. We had one, but it wasn’t my official one that had my initials on the inside of it. Finally got it today 🙂 #SoHappy

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anxiety, tears, adorable kids, and pizza; My “Today”

Today was not great of a day except for one little event during the middle of the day. I had gotten a ticket from Build-a-bear for the “Pay your age,” event and was able to take my “future nieces” (older one being 9 years old and the baby, 9 months.) However, earlier that day was not great. 

It started by my 9-year-old “future niece,” going to get the mail at my apartment mailbox; I got a letter from St Louis billing department saying that I was “denied,” hardship assistance and didn’t meet the national poverty requirement (how is not having health insurance besides Louisiana Medicaid, and only living on SSI and food stamps, not poverty?) – side note: called and talked to someone and got it straightened out, after I had already had my anxiety panic attack because “I need this surgery but I don’t wanna go into debt and cause my family and friends to go into debt for it.” However, I had to put that anxiety attack away to go enjoy the build-a-bear event with my fiance’, his sister, her husband, and the two children. 

The older sister got a “Siamese looking” cat that she named Melody and their mom picked out an adorable bear and put in a “giggle sound,” that made my 9-month-old “future niece,” smile at; we named the bear Giggles. We probably spent more than we wanted to- because if we’d done just the stuffies with no sounds or accessories, it’d have only been $10, but we got each a sound (Melody had a cat sound and the Giggles had the giggle sound effect) so add in $9 more dollars, and then each got one accessory- the cat got a purse, and I don’t remember what the baby got for hers.) The total was $31 something, so $31-$19= the two accessories costing $12 together so about $5 or $6 each. We covered about $10-15 each. It was worth it. I got to forget my anxiety and play with my “future nieces” especially the cute baby. LOL. I love them both, but adorable babies (when not crying and screaming) seem to make the world go right and make you forget your stress, whereas an older child who may not be able to entertain herself that well, may stress you more.)

After Build-a-bear, we went to eat at Cici’s pizza buffet. It was okay. I watched them feed the baby pieces of brownie and how she made that adorable smile at the taste of the chocolatey goodness, and my 9-year-old “future niece,” wanted me to sit by her. She tells me all the time she loves me, she constantly hugs me and wants my attention. She doesn’t seek that from her uncle; she’s even gone as far as to tell the family, “If DJ and Jamie break up, can we keep Jamie instead?” to which the family always corrects her, “aunty Jamie,” and I’m just thinking “don’t force her to call me something if it doesn’t feel natural to her. she doesn’t call DJ, “Uncle DJ,”  LOL.  

After Cici’s pizza buffet, we departed ways; they were going see a Movie at the theater where my fiance’ brother in law worked at; I think it was only so the 9-year-old wouldn’t beg to stay longer with me and her uncle at the apartment complex, because at the Build-a-bear thing, when we were leaving, she kept saying, “I wish I didn’t have to go home. I wanna stay longer with yall.” Which broke my heart having to be stern and tell her “no,” because she needed to get back and do her Homeschool SchoolWork and plus I didn’t feel that I could entertain her properly: I was still stressing about that letter, in the back of my mind. I told her, we’d try to get her again before I have my surgery in August. 

When I got home, I finally had gotten in touch with someone in billing to discuss the letter about being “denied,” financial assistance. They explained that despite it being out of state Medicaid, they were still going to try to file with them, so currently, my balance showed $0.00. The department explained that if Medicaid denies the claim and if I get another bill, just to call them back and explain how I got another bill, and to reprocess my application for financial assistance. So all that anxiety and worry and my panic attack, were basically for nothing because I am not completely “denied,” just denied if Medicaid accepts the claim. I hate how they word the letters, it makes worry creep in. Mom said it was a lesson I need to learn because if I want a family, I can’t be freaking out like that all the time. She also explained how I am not alone in this “battle,” for my obstacles and stuff with my disabilities, I have family, friends, David, his family, etc. But overall that it is the devil playing with me and doesn’t want me to trust in God my father and savior. I need to tell him, “be gone, Satan. My God, my father, loves me and I am wonderfully made for a purpose. He has led me this far for a reason.” 

I will try to do better to trust in my God and savior, my loving father, my almighty creator. Amen.

Also when I got home, it started raining so of course, my back started hurting, so I took a 3-hour nap on Pain meds. After waking up, my stomach decided to reject the pizza (I am guessing it was the pizza: my abdomen was swollen, I was bloated and cramping so bad that it sent pain into my sides, my sides of my abdomen were sensitive to touch, and the really bad cramps left me short of breath. It is slowly getting relief after Tums and Pepto Bismol and just time.

Sometimes I wish my life was easy, but God never promised an easy life- Thank you, Adam and Eve, for original sin messing everything up; if they wouldn’t have given in to the serpent’s temptations, we’d all be happy and carefree, running around butt- naked in the Garden of Eden and not knowing any pain or difference. No bullying, no stress, no strife. *Sigh* Paradise lost. However, we are not alone, Jesus, God’s only son, had to die on the cross for crimes he didn’t commit. He suffered, why should we be any better than him and not have to suffer? the answer is, we shouldn’t. Anyway, I am rambling now. Goodnight, God Bless, and try to find the silver lining 🙂

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Medical Headache, incompetence, and idiotic rules

As you all are aware by now, yesterday I went to Vidalia for a pain management appointment and found out that I have Osteoporosis forming. Today, I called my Surgeon in St Louis, Missouri, to find out if it would affect my surgery.

Missouri office: Can they fax it to the results to us?

Me: I’ll call and ask.

Vidalia office: we need a release, however, we can send the results to your referring doctor.

Me: Okay.

Referring Dr office: Oh, we can’t fax other doctors’ records.

*Facepalms* This is why the medical field and disabilities suck. Can’t get help, what so ever. You are a freaking Dr. Office, do your job!

I called the St Louis office back and explained the situation and they are going to call Vidalia and see if there is something they can do.

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Latest “Twist” in my life- Developing Osteoporosis

Today I had my monthly appointment with pain management doctor in Vidalia, Louisiana. At my last appointment, they did a bone density test; today they went over the results and it turns out I am developing Osteoporosis.  They did not say where it was developing and I was too in shock to ask. I have it written down for next month’s appointment. The doctors are starting me on Fosamax to increase my bone density and hopefully help to where I am not as “brittle” for surgery time in August. 

In other news, we have my fiance’s niece for a couple days at the apartment. 🙂 she is always a pretty good distraction for my pain. Tonight, we made tacos for supper 🙂 Another good bit of news is my fiance and I  will start praying the rosary together every night and gonna start going back to church on sundays  #RelationshipsWithGodlastLonger 🙂 

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Please help out! Go Fund Me Page

please share and pass around on all social media platforms. My surgery in August is coming up fast! Preop is July 16!  Thanks.

https://www.gofundme.com/jamie-has-broken-rods-and-other-problems-occurring

Much appreciated, Thank you!!!