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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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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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Passion for cooking: today’s meals

We had nothing left in the fridge and around noon I started to get hungry. I quickly seasoned up some chicken breasts and cut them into bite size pieces, put some oil in the skillet and grilled/sauteed some chicken despite already having planned a meal for supper with chicken- Baked Chicken Parmesan. Oh well. David didn’t complain and both meals came out good. I’ll probably defrost some ground meat to make tacos Tuesday night. 

Now, my joints ache and everything hurts, not just from being on my feet cooking, but also we have some rain predicted for later and that affects my body as well.  Just another average day in my life. 

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one of those days…Update on A/c Leak.

Maintenance came out to fix the A/c issue, but the water soaked some of the bedroom carpets and even into the closet on David’s side. The maintenance people had us move stuff out of David’s side of the closet, and are gonna blow-dry the carpet and spray some type of chemical to prevent molding. 

I don’t know what God is trying to tell us/teach us, but, I could’ve really done without the moving stuff around workout today when I was already hurting, but oh well, That is life. It isn’t always as we expect/plan. 

I hope and pray that they are able to fix it to the point of no molding, and we are able to get our deposit back when we move out of the apartments. 

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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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The last week-Stomach problems-May 2019

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. 😦

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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. ❤

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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.

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Ideas for my Youtube Channel-March 2019- Not implemented yet*

Thought of something for my YouTube channel. Name the channel “Jamie’s Journey” and have a weekly Q&A segment called “jabber-jawing with Jamie”. Anyone like this idea??? It would give in-depth looks at my life with my disabilities and trying to push through, to have a semi-“normal” life. Some days will be out and about, some will be looking at doctor visits, some will be routines, some will be about me doing cooking/baking, some will be me lip-syncing, etc. … Some will be me dancing around the apartment, some will be tag videos, some will feature guests like my fiance’, my parents, grandmother, family, etc…. However, I am sick and this will not begin until after I am feeling 100% better.

Update: I still have yet to do this, due to my Chronic pain and living on pain meds; probably won’t happen until after I have my surgery for my broken rods.

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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