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Scoliosis Journey Vids

New videos on my youtube: A slideshow of my 2012 Halo Traction+ Surgeries in St Louis, Walking after surgery, and rambling on pain meds after surgeries.

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Heart Dr appointment and new medical vocabulary

Today was my cardiovascular appointment with my heart doctor and it seemed like a same-old same old- type appointment; which may be true for the doctor, but for me, as I have never really read over my discharge appointment summaries before really, I was shocked.

For some reason I decided to read my discharge summary papers once I got in the car, and according to the papers I had a few problems I was not aware of. I knew that they had said I had a valve that was being watched, but according to the papers, I have “acquired insufficency of aortic valve”, in addition to “non-rheumatic mitral regurgaitation,” as well as Sinus Tachycardia (I knew I had tachycardia but learned what type). I also have WPW (Wolf Parkinson white syndrome, which I knew about already and had a cardiac radiofrequency ablation for it in 2013.)

I scheduled a Echocardiogram for Jan. 15, 2021 at 7:15 a.m. and will get results on Jan 20, 2021 and will update with results when I get them.

But to see those new medical problems (even if they not new in my medical history, they were new for my discovery) were definitely scary and made me realize I need to maybe pay more attention to my medical information. It is my body, I need to be familiar with it.

Anyway, goodnight all.

Image may contain: text that says 'Problems 1. Acquired insufficiency of aortic valve 2. Non-rheumatic mitral regurgitation 3. Sinus tachycardia 4. WPW (Wolff-Parkinson-White syndrome)'
Music, Music Therapy, MusicTherapy, Uncategorized

Youtube: Music and fun

 I have always loved music. I may not have a great singing voice or ability to dance good, but play a good song and get me with just family/friends (if people I dont know are around, I WILL NOT PUT MYSELF OUT THERE), I love to have fun. It gets me out of that “poor pitiful me, I hurt all the time,” Mood. 🙂 

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Disability update- Scoliosis Update: St Louis check up appointment

 On September 22, 2020, I had my appointment with Dr. M Kelly at CAM Center in St Louis, Missouri. He didn’t seem too worried about the broken rod at this time. the rod is broke but it’s still got some support from other rods and such, we not doing anything at this time (if rod gets worse or something, then we’ll see our options. Not really wanting to go back in at this time because the wound I had previously s finally behaved and “quiet.” So he’s like “let the sleeping dog lie,” to which I translated “don’t poke the bear” and he agreed.The “rod pain.” Is not rod bc the broken rod is on other side of my back, but it’s probably “muscles” or nerve pain instead. Which thinking back after my surgery in 2012 I did have similar pain but this round feels worse than last time. Idk. Maybe my fall made it worse..idk. 🤷‍♀️🤷‍♀️🤷‍♀️ anyway that’s the update.

other than that it was a great visit. I spent over a week (September 20- September 29) at a friend’s house; her family tried to convince us to move out there. LOL.

In other news, even though the infection has cleared up in my back, they still want me on infection meds. Also in other news, the rib pain that used to plague me before I had that wound issue start (after 2012 until the wound started,) is back. UGH. wish that would’ve stayed away.

Still no word from the geneticist about an appointment for my EDS- UGH!

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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 Journey: Broken rods again..What does it mean?

As we know, my rods are broken once again, but until Dr. Kelly receives my Xrays from OGH and I hear back from him and go to my appointment in Septemeber, we do not know what will happen. Will I have another surgery? More than likely- I mean my rods can’t stay broken. What does that mean?  Well, more than likely it means another surgery, recovery all over again, push back college again, postpone the wedding again, having to raise money or apply for hardship case again since St Louis Barnes Jewish doesn’t take out of state Medicaid, and the talks of David and I starting a Food truck business will also be put on the backburner. 

I am tired of the rods breaking; this is the 2nd time! Maybe I should just put myself in a plastic bubble or “ground myself” permanently into a wheelchair and say “Fuck walking” – maybe I won’t injure myself, since I can’t seem to not be a klutz. I don’t know what the answer is. 

I am just dreading it. Dreading facing my parents about it, dreading facing doctor kelly about it, I know accidents happen, but I feel like I am a disappointment and let everyone down even though I did everything right this time: I didn’t get on inflatables again (I learned my lesson from last time), I was cautious when picking up on my niece or stuff, I was cautious and didn’t bend- instead I squatted or got on my hands and knees,) and yet, I still broke my rods. I wonder if my Ehlers Danlos has something to do with it? Hmm. Guess that’s a question for when I do see that EDS genetics doctor. 

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disability Journey: Thought of the day- Medications and side effects…

 thought of the day…8/10/2020

like for real why do medications cause side effects? Like pain meds help with pain but in the same token, you might end up adding in depression, anxiety, mood swings, agitation,etc. (to which I already have some.)

so it’s like okay..do I wanna deal with pain and possibly just cry to the point of wanting suicide…or do I take the pain medication and stop the pain, but end up depressed or miserable and still wanting suicide for a different reason other than pain- because of emotional impulses and acting like a toddler throwing a tantrum? hmmm.

oh and then lets not forget when I am on pain meds but not sleeping, I tend to “go down the rabbit hole” and spiral emotionally- like right now, I am convinced I have Borderline Personality Disorder.

guess the saying is true, “Idle time is the devil’s playground.”

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youtube video: Cover “Unbreakable”-Ali Mcmanus

In the video, I was in the car jamming to my new “theme song” Unbreakable by my good friend, Ali Mcmanus. -video July 17.

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Putting my tiktoks on youtube

just in case we lose the app because of Trumps talks of banning the app. (I really hope Microsoft is able to buy it.) I love some of the videos I made. 

Tiktok is one of the few things that I can do to entertain myself on a pain day. I really hope it doesn’t go away. 

anyway, here is the video . 

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EDS Journey: found a possible doctor??!

so here is the latest development in my EDS journey: I am in several Ehlers Danlos groups on Facebook. And they gave me a few names of geneticists who are listed as pediatrics but also do see adult patients with EDS. So I called the one that was named multiple times to confirm that they still do this and they do and also take Medicaid. So I will give their name to my GP on wed. when I go for a medical checkup so they can refer me. #Amen#GodBless❤ might finally be getting answers .