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disability journey: Broken rods – facing my parents and such…

 As we are aware, I had re-broke my spinal fusion rods and was dreading facing my parents about it. This weekend, my parents came in off the truck. As soon as they saw me, Dad asked “what happened to your forehead” because that was the first thing he noticed. “Well, you see, there was a incident in the backyard on the steps. I fell…and re-broke my rods.” They didn’t look happy, but didn’t say anything, later they mellowed out and we joked about it. Then I gave them some candy bars I had bought at the store on Thursday after the incident, before they came in, with the joke to David, “I’ll get their favorite candy bars so when I deliver the bad news about my rods, it will be less of a blow…Like…’look, I got yall favorite candy, oh by the way, my rods are re-broke. Oh just eat your candy bars before you reply.” hahaha. To which I recounted that story to them and they laughed. I am so lucky to have understanding and supportive parents with good senses of humor. 🙂 #Blessed. 

I also sent the Xrays to Dr. Kelly on friday through “snail mail” with post office saying it should be delivered/recieved on monday. So I will call monday to tell his office and hopefully by tuesday or wed, I will have some news on what Dr. Kelly had to say. I also hope I hear from the genetics doctor soon as well. 

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Disability/Scoliosis/EDS Journey: Ended up in ER

 8/12/2020

So earlier today, I had my appointment with my GP who agreed to refer me to an EDS geneticist that I had found in New Orleans- Great news, right? Right. 

later that evening, I was outside helping my fiance’ do some yard work around the backyard and he asked me to go get him some bottled water; should be a simple task, right? Wrong. It ended in me having to go to the ER. 

I went into the house, got the bottle waters(1 for him, 1 for me), and started back out the backdoor: Now our backyard door has a drop about 1-2 ft and then the first step. I don’t know if I missed the step or if my ankles/legs decided to give out; it all happened so fast- All I know is next thing I know, I am losing my balance and falling forward and landing face-first onto the concrete sidewalk. 

Landing forward, should spare my rods right? Hmm. well, I’ll get to that…

When I fell, I hit my legs and knees and felt like I couldn’t stand right away, I busted my head on the concrete and had a big gash and later a knot, scraped up my right wrist, and had landed on my left ring finger that had started to already swell. 

I waited for a little while to see if the headache would subside and I’d feel better. No luck. So we went to the ER. They did a CT Scan (to look at my head to make sure no damage) and a Xray(to look at my rods and back). 

The Drs said the finger wasn’t broken; it was a busted blood vessel and ice and rest should bring down the swelling. The CT revealed no signs of any damage or concussions. However, the Xrays were not as lucky: My rods that I just had fixed almost a year ago, from being broken previously, were broke once again! Now the rods could’ve been broken before this incident- After all, I was still taking pain medication on and off as needed and I had an experience months ago while still in the apartment where i had stood up and it felt like a popping shockwave down my back. The timing just really sucks, so now I have to call Dr. Kelly and tell him the bad news about my rods. I feel like I let everyone down again, but I did everything I was supposed to- I wasn’t straining, I wasn’t bending, I was being cautious,, I didn’t get on inflatables this time and I still end up with broken rods. I wonder if my EDS could be a contributing factor to the rods continually breaking? I suggested it to one of my fellow Scoliosis friends who is in a scoliosis group and said there was a girl who kept breaking her rods and getting infections and was later diagnosed as EDS and ended up having her rods removed, so it could be a contributing factor. Hmmm….I don’t know. Seems like I try to do everything right and then something still f** it up and I am back to being a disappointment. UGh. I hate these voices in my head and feeling like I am mentally unstable. Will things ever get easier? 

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Very rough Emotional day

technically it started last night. It was a bad pain night and I couldn’t sleep. I stayed up till 2 in the morning before sleep finally overpowered me.

I slept on and off. Woke up to feed the cats, stayed up a bit, went back to bed and slept again. had joint and head pain most of the day.

Then the icing on the “crap cake” of the day-

poor david just witnessed a “Jamie Disability Meltdown” Adventure

it started with him asking me to put mayo and mustard on his bread for his hotdogs while he was microwaving the hotdogs…so I did it my way, on the plate and just spreading it with butterknife.

David: why you don’t hold a bread in one hand and use the knife to spread with the other hand?

Jamie:(a bit sarcastic/snarky) because if I hold it in one hand, it doesn’t hold flat, ill squeeze/bend my hand and then you will have squished bread..

David: you can’t hold your hand flat?
Jamie: (again, snarky/sarcastic) No, I cant. its called Ehlers Danlos..remember..that thing I have that makes my joints loose and weak.

David: come here. I’ll show you.
Jamie: (getting annoyed and flustered because I been living with this 29 years, does this dude seriously not think I’ve tried multiple ways to do things?) No. *voice starting to shake and fists start to clench*

David: come on Jamie, just try my way.
Jamie: (finally breaks down and flood gates open) David, I’ve had this shit 29 years, I’ve tried every way I can think of. This was the easiest way.

David: okay. okay. I wasn’t teasing you. *trying to hug me*

Jamie: I know. But still, if you had something for all your life and parents who taught you to be as independent to the best of your abilities, you think I’d just give up? no. this was the easiest and most accessible way for me.

David: I didn’t know. I only been with you 3 years. calm down. its okay. i still love you, you’re still beautiful. calm down. you gonna give yourself a headache.

Jamie: *sniffles and trying to calm down* I already had one to begin with.

————————–
hey if he wants to be future husband of someone with a disability, he might as well see all the ugly sides too. 🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️ he wasn’t there for the 2012 episodes-poor mom had those episodes and she didn’t trigger them…she was just in the “crossfire” lol

and then later on another incident involving David happened: we tried to make waffles breakfast for dinner but no cooking spray, so tried to use regular cooking oil, but they stuck and didn’t cooperate so I was put back in that “i can’t do nothing right.” Mood.

I hate days like this where my disability and the side-effects of it, feel like the world is closing in around me and I cant breathe. *sigh* just another day. Things will get better. Tomorrow is another day.

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Thoughts of the day

Thoughts of the day…I love all my friends no matter their race, nationality, religion, political beliefs, etc. if you are my friend.(Except if you are racists, ableists- have negative thoughts about disabled people, etc.) We may not always see eye to eye on everything, heck we might even debate some things, but if we are true friends and mature adults, we can still remain true friends through all that- And as long as we respect each others views and don’t try to force our views down each others throats. .) I will always care about my friends even the ones I am not close with anymore. They are still in my memories and my heart, and If anything happens to ANY of my friends, you can bet, I will be there for them and their family. If someone hurts them or worse, I will seek vengeance for them. Hell hath no fury like a “Momma hen” type friend. I hit, kick, claw, and will beat people with a bat to defend my friends and family and singing “Someone gonna get their ass kicked today” LMAO. #UnitedWeStand #DividedWeFall

Some of my best friends are different race or nationality than me and they are some of the best friends I could ever ask for. They love and support me and my dreams no matter what. If anyone was to be racists to them, I’d be so angry and defend them, especially if I was right there and witnessed it- I’d probably get in the offender’s face and tell them off or worse- hit,kick, claw, punch, slap, maybe even beat to a pulp with a baseball bat- But I’d do that for all my friends and family, I am very protective of my loved ones and hate to see them hurt; whether it be physically, mentally, or emotionally.

Its 2020, and the world is still in chaos with discrimination and racism, hatred and anger, so much division. We need to come together and make the world a better place for future generations, because right now as much as I want to be a mother, I do not want to bring a child into all this violence, crime, and hatred in the world; Children cant even have childhoods anymore and are forced to grow up too fast in this world. 😦 We must do better for our children and our children’s children and generations to come!

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Beignet: Grooming incident and photo modeling

Yesterday, Wed March 18, 2020, while I was using the “dog shaver” to see about Beignet’s loose dog hair, she was more hyper than usual and wouldn’t keep still. Long story short, she moved while I was going down her back with it, and when she moved, I slipped and got the back of one of her legs- a small cut on her leg and bleeding a little. We went inside, I got bacitracin, gauze, bandaid, and medical tape and bandaged her up. I walked away to put the stuff away and come back to find she had already chewed halfway through the tape, gauze, and bandaid. 

Later that night, I decided to practice my photography skills and used Beignet as my model and uploaded them to her Instagram to try to build up her following and add to her content. I am trying to get her some brand deals; I am almost like those moms who push their kids into casting calls. ugh. Not good, but I can’t help it, she is just so cute and a pretty dog and so photogenic.