Tag: Xrays

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Disability Update: uh-oh! I fell!

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 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! 

#Medical, ADA, adulthood, Adulting, appointments, At home, Athome, Autobiography, Broken Rods, BrokenRods, Chronic illness, Chronic Pain, Chronicillness, collagen, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, doctor, Doctors, drs, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, genes, geneticist, genetics, genetics doctor, genetics dr, Handicap, Handicapped, Handicaps, Health, HealthCare, hospitals, illness, Infection, infection drs, Infections, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Life, Louisiana, Medicaid, medical, medication, medications, memoir, Pain, pain meds, Parents of Disabilities, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, Shriners Hospitals, Shriners Hospitals for Children, sick, sickness, Side effects, Special Needs, Spinal Deformity, Spinal Fusions, spinal infections, SpinalDeformity, SpinalFusions, Spine, Spine infections, Spoonie, Spoonies, UnBreakable, Uncategorized, Weird, wellness, Zebra, Zebras

Disability Update: Good News/Bad news, Infection Update

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 I got a email from the Mychart app from my Infections dr; Dr. Mejia. He got my bloodwork results in from Quest diagnostics in Lafayette, LA. Good news, I am negative for infection (meaning, no more infection in my body) according to the bloodwork. 

Bad news, he still insists on the plan of antibiotics being a life-long thing; due to the “complexity of the infection,” whatever the heck that means. 

To say, I am disappointed and upset is an understatement. This makes 2 years that my labs show I am infection free. I had hopes that I could eventually get off the antibiotics. I am not even 30 years old yet, and the idea of life-long antibiotics; God willing I live to a ripe old age, that would be 60+ years of antibiotics! 

yes, it times like these it is hard to see the light and positivity of my life, but I cannot loose my faith and Hope in God my lord and savior. He is good and all powerful, he is all knowing and can perform wonderous miracles. He is the only one who knows how my story will go. Be gone, Satan, quit tormenting me with emotional meltdowns and sorrow. I will try to look to God and find peace in his love and warm embrace. 

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Life in Slideshows

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I made more slideshows about my life in pictures. I added all my slideshows to a playlist on my youtube. 

Link to playlist: My Life Slideshows – YouTube

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Scoliosis Journey Vids

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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

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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

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 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

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 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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Disability/Scoliosis/EDS Journey: Ended up in ER

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 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?