#Medical, ADA, Adult, adulthood, Adulting, Broken Rods, BrokenRods, Chronic illness, Chronicillness, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, doctor, Doctors, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Friends, Friendships, Handicaps, Health, HealthCare, Infection, Infections, Joint Pain, JointPain, Joints, Joints Pain, Kyphosis, Life, Medicaid, medical, Physical Disabilities, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Scoliosis, Shriners Hospitals, Shriners Hospitals for Children, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, support, Syndromes, travel, UnBreakable, Uncategorized, Zebra, Zebras

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!

ADA, Adult, adulthood, Adulting, anxiety, Broken Rods, BrokenRods, collagen, College, Connective Tissue, ConnectiveTissue, Deformity, Depression, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, doctor, Doctors, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Emotions, Family, Funny, future, genes, geneticist, genetics, genetics doctor, genetics dr, Handicaps, Health, HealthCare, hospitals, Humor, illness, Joint Pain, JointPain, Joints, Joints Pain, Kyphosis, Life, Louisiana, Medicaid, medical, medication, medications, mood swings, pain meds, Panic, parent, parenting, parents, Parents of Disabilities, Physical Disabilities, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Scoliosis, sick, sickness, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, Syndromes, UnBreakable, Uncategorized, Zebra, Zebras

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. 

ADA, Adult, adulthood, Adulting, anger, anxiety, borderline personality disorder, Chronic illness, Chronicillness, collagen, Connective Tissue, ConnectiveTissue, Deformity, Depression, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, doctor, Doctors, dreams, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Emotions, Entertainment, Handicaps, Health, HealthCare, hospitals, illness, Joint Pain, JointPain, Joints, Joints Pain, Kyphosis, Life, Medicaid, medical, medication, medications, mood swings, pain meds, Physical Disabilities, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Relationship, Sassy, Scoliosis, Side effects, Social Media, social networks, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, story, Summer, Syndromes, UnBreakable, Uncategorized, Youtube, Zebra, Zebras

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.”

ADA, Adult, adulthood, Adulting, Chronic illness, Chronicillness, collagen, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, doctor, Doctors, dreams, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Entertainment, Fun, future, Handicaps, heroes, Joint Pain, JointPain, Joints, Joints Pain, Kyphosis, Life, Love, Medicaid, medical, Music, Music Therapy, MusicTherapy, Physical Disabilities, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, Social Media, social networks, Songs, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spoonie, Spoonies, story, Summer, Syndromes, Tiktok, UnBreakable, Uncategorized, Youtube, Zebra, Zebras

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.