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Disability Update: uh-oh! I fell!

 I do not know what happened today, but early this evening, I fell. I am assuming I tripped over a thing of bottle waters, but I am not exactly sure what happened; it all happened so fast! I know that all day I been feeling pretty tired, weak, dizzy, lightheaded; kind of day-dreamy. Research shows that it could be a Ehlers Danlos thing: POTS or Dissociate, Brain Fog, or dysautonomia, or it could just be the fact its “that time of month.” Who knows, its a mystery.  I am not even sure what way I landed or anything. I think I fell on my side, but I cant remember for sure. 

I do not hurt right now, but I will probably feel it tomorrow. I just hope I haven’t done anymore damage to my rods than they already are. If the pain shows up and lasts, I will do x-rays and send them off to Dr. Kelly in St Louis. 

For now, I just got a lecture from Mom about being more careful and to “use my walker,” and “let go of my pride,” blah blah blah. It isn’t a pride thing Mom. it’s just hard to remember to use that thing when most of the time I do not need to use it. I do not mind my cane, walker, or wheelchair, but most of the time I am fine, so I do not think to use them when I feel weak. I will have to figure out a way to remind myself I guess. I just wish I knew why I was having these falling spells?? This is my second one, first one was back in August. Is it because of “that time of month,” or something more serious? Is it because I am not being cautious enough? Its a mystery..One I will have to figure out before I end up living in a plastic bubble because I am such a klutz. Ugh! 

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Rewrite the stars- Greatest Showman song- relates to my relationship with my fiance’

Last night, I was on my pain meds and as usual the drugs made me a sappy, hormonal, emotional wreck; especially when all they do is make me tired and don’t actually help my pain, and as tired as I am, I cannot get comfy enough to actually go to sleep- which causes me to become irritable, frustrated, and emotional. Warning: Below, is how I feel on those kinds of days. You’ve been warned.

Don’t get me wrong, I do absolutely love my fiance’ and most of the time I cannot absolutely at all fathom my life without him, but on my really bad pain days when I am cooped up in the house on pain meds and can’t stand my own life, I relate to Zendaya’s lyrics of the song.

He is so positive and confident about us, and I am like that girl (because of my age difference and looking like a kid, and my disability- the “mountains,” and “doors can’t walk through”) and what the world thinks. and just waiting for him to realize that it is hopeless and impossible for us to truly be happy together. I am always thinking “he didn’t sign on for all these issues: Me hurting all the time, me lashing out at him because I am hurting and frustrated; because I’m irritable.. How can I expect him to love me when I don’t even love myself?”

Maybe he’ll teach me a thing or two, or maybe if I have such idle time, pay attention to the negativity.
It’s a lot of self-esteem issues and idle time, pain meds causing depression, being bullied from a very young age (5 years old)- it’s hard to escape the “voices” of my past, but I am working hard on it because I do love him and I know he loves me.

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When you constantly ache Poem

Bomp! Bomp! Bomp! 

Alarm clock blaring its cruel tune. 

Time to wake up, 

you ache all over, 

but still have to face the day’s gloom. 

Yawn and stretch, 

rub sleep from your eyes, 

have to get up, 

greet the day, and

seize your “prize”. 

Another Ache this morning, 

story of your life, 

whether it be back, neck, or head, 

its all the same; 

Pop a pain killer or two or three, 

sometimes you think about Overdosing, 

and ending your misery. 

You decide against it, 

not wanting to hurt, 

those you love dearly, 

by taking your life, 

and making them all teary. 

All you want is the pain to disappear, 

meet its eternal doom, 

and never return. 

When you ache every day, 

life gets hard,

to be happy and thankful, 

sometimes it makes you even turn away from the Lord. 

Don’t forget, 

you are special. 

yes, it’s hard, 

but you are a fighter, 

and so very strong; 

you will be the champion, 

that God had envisioned for you, 

all along. 

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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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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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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!!! 

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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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Chocolate Cake for Breakfast and Chronic Pain

Just ate #ChocolateCake for #Breakfast. Now I feel sick. Sugar distracts my #ChronicPain so I can go longer without #PainMeds but its not healthy and I have a risk for #Diabetes since my #Grandmother had it. Hopefully I don’t develop it before I have back surgery to fix my rods and my #ChronicPain.

I am tired of living a life of decisions; pain meds or risking diabetes, Fun and going out or cabin fever and bed but no pain, etc. It isn’t much of a life. Soon, Jamie, Soon!

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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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Beauty with a disability

On June 1, 2019, my cousin was getting married and it took 2 goodwill shops to find a silver sparkly dress that worked for me. It was flow-y and not “fitted” or tight; it looked great on me.
The next thing to do was hair and makeup. It took me over an hour to get that done so I did it early because after doing all that, I tend to deplete my energy levels.

I will post a Youtube video later on when I am done editing.