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Disability update- Scoliosis Update: St Louis check up appointment

jamiesjourney0591

 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…

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 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?

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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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So annoyed with rude people…

jamiesjourney0591

I had my go fund me page since Jan or Feb. people have been generous and I thank them (especially the author of “Wonder” who generously donated $1000.) However, I share it constantly on all my social media platforms and a few people share it, but today made me so sick to my stomach.

I shared it a group on for people with similar disabilities and one of the members felt it was her responsibility to “set me straight.” – Evidence down below: Sally Hockman is a snooty and rude individual. She doesn’t know my story. She doesn’t know what I deal with on a daily basis. “Many people have broken beg for money,” but do these people happen to have great health insurance or doctors who take no matter the state? ….some people aren’t lucky!

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Please help out! Go Fund Me Page

jamiesjourney0591

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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The last week-Stomach problems-May 2019

jamiesjourney0591

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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I’m sorry! an Open letter to my fiance, David- May 2019

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Sometimes I wonder why my fiance stays with me: mean I never wanna cuddle/love on him because I am either hurting or it tickles (I’m really ticklish); I am always on my phone/computer/or tablet(The same things I got annoyed with my ex over- not spending time with me), then I get angry at him for the stupidest shit. Tonight I lost my anger with him over a joke.

We had been “play- bickering” before the “joke,” and I guess I was already a little irritable from that and then he was teasing me because I had deflated my helium balloon from my birthday and had sucked the helium and he said “you already act like you don’t have any brain cells. You killed them all.” That is a trigger for me, because I already feel like I don’t measure up because everyone I graduated from high school with has already gotten multiple degrees or have careers and I just have associates under my belt, struggling to get my bachelors, and I struggle very badly with math; So when he said that I lost it. I got so mad, I threw a can at him, I don’t even remember what the can was, maybe it was canned Air that he uses to spray his computer to dust it- I don’t remember, but he got his feelings hurt and lashed out at me for it and I totally deserved it.

We made up now, but still I feel so guilty about It. I mean all he does is try to love and have fun with me, and I take things the wrong way. He cooks for me, he helps me when I am hurting, he even started a go fund me for my surgery. He just says stuff without thinking sometimes He’s human and flawed like all of us, but at heart, he is a good person. I do love him, but my anger, anxiety, low self-confidence, and depression get the better of me. I will continue to try to do better in the future, David, and I am so sorry. 😦

Love,
Jamie ❤

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the “latest and not so greatest”- May 2019

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the latest update from my Scoliosis Journey: St Louis (Dr. Kelly’s office) called. He still bouncing around about the simpler (just fixing surgery) or the bigger surgery. I told them Dr. Lenke said he was gonna talk to dr kelly and how he (Dr. Lenke) suggested the smaller surgery. Apparently, he hadn’t talked to him yet, or the nurses weren’t updated. 🤷‍♀️The nurse made a note and said if we do the smaller surgery, the date she has is Aug. 14(two days before the anniversary of my surgery in 2012) and the pre-op appointment would be July 16. They want me to do a pulmonary Function Test (I am having them fax the orders to my gp- because my Respiratory Doctor said and I quote “didn’t see it as a necessity” because more than likely they would “do one before surgery,” and I “have my CPAP machine this time.” 🙄
in other news, I went to a pain management appointment on Monday, April 29. It was okay aside from spending all day there. It was just a consult. Typical dr. appointment- xrays, weight, and height, looked at my back, tested my reflexes, all that boring medical stuff. lol. I go back on May 28.
Also, Still fighting with that stupid wound on my incision- it opens, almost fully closes, then reopens. It’s oozing bad the last few days, going to wound care today at 1. The wound probably will keep giving me issues until I get the rods fixed. 🤷‍♀️🤷‍♀️🤷‍♀️

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Latest update in “my twisted journey” called Life- April 2019

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I’m just got off the phone with Dr. Kelly’s office in St. Louis. They offering two surgeries. One to just revise surgeries. And one to take a bone out of my spinal column area and make me straighter. Longer surgery would be Sept. Smaller surgery would be August.. Longer surgery would give better balance. She’s gonna talk to dr Kelly again.hes out of town right now, so it’ll be sometime next week. Smaller surgery , if I’m not balanced enough, rods could break again. But longer surgery is messing near my spinal column and could paralyze me #decisionsDecisions 🤷‍♀️🤷‍♀️🙏🙏 I dunno. I mean id like to be straighter and not risk rods breaking again, but also like being able to walk and stuff. And also don’t wanna risk another trache.

🤷‍♀️