#Medical, ADA, Adult, adulthood, Adulting

New youtube video- Disabilities tag

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Planning a Q and A video…with mom….Need questions!

I am planning on doing a Q and A type video with mom for my youtube channel sometime this week. Is there anything yall would like to know?

Any questions about raising a child with disabilities?

Any questions about what I was like as a child?

Any questions about me in general?

Her thoughts/ feelings/opinions about raising a child with disabilities?

Her thoughts/feelings/opinions about society now a days? 

Anything…There are no Dumb questions.

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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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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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AntiBullying Rant (youtube video, Posted 2018)

End bullying now!

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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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Ode to Mom on Mother’s Day- May 2019

Ode to Mom.
There are many ways to describe my Mom; the best way is through several songs lyrics.The first song, Mom by Meghan Trainer. 
“Ain’t nobody got a mom like mine. Her love to the end, she my best friend.” My mom is and always has been one of my most loyal best friends. She is there when I have “girl drama,” when I am “hating on myself,” because of my disabilities and pain, and sometimes she is just there to make me laugh or get me out to go have fun.“All the times that I cried, she made me feel better,” it’s true, whether it be spiritual guidance with my questioning God’s motives for my disabilities, girl drama, relationship drama, etc.“She taught me how to love myself,” she always told me, “Normal is overrated,” “This is your normal,” “God didn’t make a specific mold for people, that is society trying to fit everyone in a mold,” and the most important, “love yourself  first, then friends will come, and after that, eventually relationships. You should always come first.”The second song, “Mother like mine,” by The Band Perry; “There’s no safer place I’ve found
than the shoulder of her white night gown,” when I was a little child and scared, she was always there to dry my tears or rock me/cuddle with me. I always felt safe with her. Safe to be my true self without judgment- I could be silly, dance, sing, whatever, and knew she wouldn’t clown me like my peers, cousins, brother, and even dad, might have done.“So the wars would all be over
‘Cause she’d raise us all as friends,” rings true because she always taught me “treat others as you’d like to be treated,” and didn’t spout off any type of negativity towards certain religions/races/ethnicities/ other differences like some families shove down their offspring’s throats.“Don’t go away, don’t go away from me,” definitely rings true because from a very early age, I was always scared of Mom dying and leaving me all alone (even though I had other family-dad, my brother, etc.) I love my other family, but nothing beats the love and support of my mother.The Third song, “Because you love me,” by Celine Dion. “For all those times you stood by me,” she has always been there to encourage and support me whether it be through my medical tribulations, my dreams, struggles in school, or whatever. She has always supported me unconditionally.“You’re the one who held me up, never let me fall,” when I was a weak tiny baby and didn’t meet my walking milestone on time, she wouldn’t give up; she would get on the floor and massage my legs, hold my hands and help me. When I was tired to walk and until my legs almost dragged the ground, she’d carry me. When I would “dump on myself,” she was the one who would “hold me up,” and bring me back out of “depression” because she suffered from depression and didn’t want me ending up there.“You’re the one who saw me through through it all,” no matter whether it be something related to my disabilities, challenges, illness/sicknesses, fights with friends, etc., she always saw me through it all.“You were my strength when I was weak
You were my voice when I couldn’t speak
You were my eyes when I couldn’t see
You saw the best there was in me
Lifted me up when I couldn’t reach
You gave me faith ’cause you believed
I’m everything I am
Because you loved me” – When I wanted to give up and throw in the towel, whether it be schooling, friendships, or other obstacles, she was my strength. When I was too scared to defend myself, she was my voice. When I don’t see things, but she does- she is there to give me advice and help me see things, but also she leaves the ultimate decision up to me. She always sees the best of what I could be.When I couldn’t reach, she would pick me up at times (when I was little, now she really can’t because we are about the same height LOL!) She gave me faith because she has an unwavering faith and belief, where as I tended to struggle. She is the reason why I am who I am.“You gave me wings and made me fly”- whatever my dreams, she supported them and would do whatever she could to help execute my dreams and hopes and wants.“I lost my faith, you gave it back to me”- when I struggled with my faith and questioning God about my disabilities or my purpose in life, she was there to help me.“You said no star was out of reach”- she always told me I could do anything that I put my mind to. 

“I’m grateful for each day you gave me”- I am grateful because some people would have aborted me, she didn’t. 

“I was blessed because I was loved by you,” and she taught me how to love.The last song doesn’t really describe our relationship, but I have to include it because of the memory attached to it and that song is “Brown Eyed Girl.” It is mom and I’s favorite song because when I was really young (I think 3 years old or so,) when I’d get home from preschool or days I didn’t have preschool, Mom would put on the song and we’d dance together in the living room and even today I tell her, “I will always be your brown eyed baby girl.” 

As I’ve grown older, I’ve come to realize that not everyone is lucky to have wonderful mothers, in fact, some peoples families are so dysfunctional that by adulthood, they’ve pretty much cut off their families completely; Even now, my mind is completely blown away by this and can’t comprehend it but it is because I was always surrounded by love in my family.
I love you Mom, you taught me so much, gave me such a wonderful and enriching and somewhat “normal,” childhood and I hope I can be at least half as great a mom as you were to me, when/if I ever become a mom. ❤ ❤ Happy Mother’s Day!!!

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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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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.