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    a Marfan and severe rotary scoliosis lifelong owner since birth. First surgery age four introduction of Harrington instrumentation rods and struts, to correct the spine curvature and re-operated every 2 years to perform adjustment all the way to age 11 was quite a challenge in the pre computer era, for all practical purpose i lived in a hospital doctors and nurses were my parent of sort.

    After half century of photography and a quarter century of gardening self-educated in both fields. The tropical flower garden has been visited by international visitors for over ten years and was certified natural habitat by a national organization and two other organizations.

    The January 2023 book project, been told over time that a book should be written, well finally listened and figured against all odd would be a good idea. I persevered and accomplished my goals; it is a rare story unique worth being read about can be inspiring also, one never knows who we help long term, but it is nice to know that it will serve a purpose other than entertainment.

    Creating a tropical garden and photographing the tropical flowers on a bare 1/4 acres waterfront lot, built entirely by my two hands with a double disability achieving success against all odds. if would be ghost writer/editor would be interested in my project a fresh look at this memoir, would greatly be appreciated.



    I'm new here!

    Caring for sister post scoliosis surgeryHi, my name is Deansgramma. I'm here because


    2 reactions 1 comment

    Digesting My New Ailment, Since They Plan on Staying Awhile

    So I guess this IS my first post on here... I am both ashamed & proud of that. I love writing. But, I never follow through. My issue before, was I spent too much time on other social media platforms- not that they are bad! But for me- they were. Scrolling on certain social media sites was hurting my self esteem, adding to my sense of FOMO, causing me to “hurt my own feelings”, & make me feel like I was racing against a ticking clock which I was feeling extremely behind on... (things like finding the career, the financial stability, goals of learning to drive etc., not as much beginning a family but I think my list is just so behind in my head that I can’t even think that far ahead, despite being 32 years old…) in other words, since about Thanksgiving 2022, I have taken a detox from a few websites. What my new goal is, is to be more active on here. A place where I feel more welcomed, less outcasted (not that anybody MEANT to outcast me), & less alone in my diseases/illnesses. I know it is not what makes me who I am, but it is a part of me & right now, being in my current status with some of my illnesses, it is a big part of my day to day life.

    I had to accept a new ailment into my life lately. Back pain. The kind many talk about & I always thought “well I have neck issues but I have never had debilitating lower back pain so I am lucky there…) though I never realized how obviously naive I was being to not remember that the spine connects (duh) & I will likely end up with lower back pain at some point given my scoliosis. This happened after my most recent job (since then I have taken time off but it looks like I may need to look into other work) where I was on my feet for upwards of 10 hours a day between breaks. Despite our professional dresscode, I even bought the crocs that look less “croc like” meant for all day standing… well a week into my new position (field sales), I was in significant back pain. Come New Years Eve, I was on the couch enjoying some wine & all of a sudden, I couldn’t get up. I felt *helpless*... Something I don’t usually feel despite a long list of lifelong problems. I was bedridden with ice, heat rotations & Biofreeze & SalonPas the next 3 days. When business opened back up, I went to get checked out. I was given a muscle relaxer & Prednisone oral short term. (Don’t you love that stuff…me too—sarcasm), but I am not out of the woods. It is still very hard to do mundane tasks. My mom got me a back stretcher on Amazon (basically a curved thing you lay on that actually feels good & does temporarily help) & I am looking up YouTube exercises. The pain is in my lower tailbone area & surrounding. About the entire width of my lower back. I had scans done & nothing outside of my usual scoliosis shape seems to be off. I used to be an avid regular of the chiropractor but going there now is a challenge finacially. Also that was more for my neck & regular pains. This pain is much worse & it scares me to mess with. Of course I am no expert. I do not know my next steps or what I need… I guess I do not know the point of my post. I hope to look back & say wow that was a bad time & it did pass. Chronic pain is no fun. I can’t take advil or aleve because of my Crohn’s/GERD. It makes me so nauseous. I thought the prednison would work better than this. Oh well… I hope everyone is having a good New Years.


    I'm new here!

    Hi, my name is Taylor and I'm here because I'm dealing with my Congenital heart Defects, severe arthritis, severe scoliosis, chronic fatigue, and stroke and heart attack recovery.

    #MightyTogether #Anxiety #Depression #PTSD #Grief #AutismSpectrumDisorder #CongenitalHeartDefect /Disease#Arthritis #Stroke #ComplexPosttraumaticStressDisorder #Scoliosis

    21 reactions 6 comments

    ° " So Today Was An OK Day.. My GM Was Off Today. " ° #Anxiety #depression

    ° " It Was A Sort Of OK Work Day. I Worked With A New Assistant Manager... But I Got Yelled At By Him. Because The District Manager Called... Asking If I Sold Any Of "The New Crunch Pizza"... I Honestly Told Him No... Because These Manager's Don't Tell Us. When We Are Selling These New Food Item's... And He Made Me Feel Like I Was Lying To Him. At The End Of The Day. I Did Sell One Dumb Pizza Finally. But Customer's Are Not. Intrested. Maybe Later I Wish These People Weren't So Pushy... Like If You Don't Like The Way I Do Thing's... Then Train Someone Else To Your Liking... I'm An Empath I Feel Other People's Bad Energy All The Time. And It Affect's Me. My Boss Doesn't Seem To Understand That I Have #cerebral Palsy #Scoliosis ... I Have To Pace Myself I Will Pull Something.. Plus I Have A Broken Right Foot Lutterly Since Childhood.. So It Hurt's And My Muscle's Get Stretched Alot And I End Up Very Sore. Where The Next Morning... I Can't Get Myself Out Of Bed. My Pain Level Is At A 10 Sometime's 8... I Wish People Would Just Not Be So Ignorant... I Guess It's Profit's And Money... Over The Disabled Person... " × ▪︎ SKAOI KVITRAVN ▪︎ #Thought 's

    19 reactions 8 comments

    Will a service dog help me? #ServiceDog #BackPain

    Hi, recently I was speaking to a family member about my pain and got suggested a service dog. This family member has often suggested using a wheelchair or walker to help me walk as I can find it difficult sometimes. I spend a lot of my time in bed due to my pain and find it difficult doing everyday activities like going to the shops, walking to the bathroom or going into school. I also suffer with severe anxiety as well and get lonely a lot. My mum works so when not being able to go to school I am left alone at home to try look after myself until she gets home. I don’t know if a service dog would be helpful and don’t want to take one away from someone who may need it more? We also live in a rented house so aren’t sure if my landlord would allow it. If anyone knows good charities in the UK which might have service dogs that will help with my conditions I would appreciate the help! Thank you! #Scoliosis #BackPain #Undiagnosed #Anxiety

    9 reactions 7 comments

    ☆ " What Are You Looking Forward To Going Into #2023 " ☆ #Thought 's

    ° " My One Wish Is To Be Treated Like A Human Being... For People To Really Get To Know And Understand Me... And What I Can Bring To The Table... In Life.. Not To Shun Me Just Because #cerebral Palsy #Scoliosis #PTSD #Depression And More Are A Huge Part Of My Life... I'm Not Any Of My Physical × Mental Illnesses... "° ☆▪︎ SKADI KVITRAVN ▪︎☆ #Thought 's

    35 reactions 18 comments