Another day another obstacle crushed!
Hey all, I hope this is appropriate to post here but I just wanted to do a little horn tooting and thought you'd all get it :)
So anywho, I have hip dysplasia in both hips and degenerative disc disease in my lower spine and just oh so many more wonderful pain causing issues! Since I no longer know what life without pain is I use to wallow pretty badly. I was diagnosed with a lot of this in my early twenties and pretty much just gave up. Gained a ton of weight, and as a 5'1 tall woman i got up to 260 pounds. In July of 2021 at 37 years old I finally decided to get up and start living again for so many reasons (though that's a much longer story) and at my last weigh-in I was 160. Today, even though the pain was at a solid 7, I pushed passed my normal failing point and completed a 7 mile walk. Currently of course I'm wrapped in a heating pad and using all my other soothing tactics and everything hurts but at the same time? I feel amazing! #HipDysplasia #ChronicSpinePain #warrior
Hip dysplasia and hEDS
In 2019 I stood up out of a vehicle and tore my labrum through a hip dislocation. I had to go out of work for 6 months to have surgery and heal. I ended up having a scope and they tightened my hip I place with anchors as I kept experiencing dislocations. The hip did great until November 2020 when after a night of dancing (the first since I had surgery) I stood up and audibly heard my labrum re tear. I instantly returned to the Orthopedics where we did and MRI, confirmed the tear and I was sent to a new surgeon. At the new surgeon appointment, after xrays were reviewed it was determined that I had Bilateral hip dysplasia and qualified for a very scary surgery known as a PAO or Periacetabular Osteotomy.
Now this brings me to my thoughts, I didn't have hip problems until after I gave birth to my daughter. I had a vaginal delivery and after had problems with my bladder that I still deal with. In addition, the hip issues cropped up. So I wonder, was it the child birth and the fact that I have EDS that led to the hip problems? Have lots of others experienced something similar and should this be something doctors warn patients with EDS who are wishing to have children of their own. Not that it would change my choice as I absolutely love my daughter and would go through this over and over to have her, but maybe it could be an important discussion for others as I am now looking at a possibility of 6 more surgeries to fix both hips, which is very te consuming and the pain is absolutely insane on a daily basis.
I hope if anyone else is dealing with this, you know you are not alone. My first PAO is scheduled for May 28th and I have high hopes that this will help, but god the idea of a doctor cutting and repositioning my pelvis is absolutely terrifying.
Feeling like I’m burdening my family
Hey I’m 19 and have diagnosed hip dysplasia, mid lumbar scoliosis (showed up on xray along with more hip damage) The past months I’ve had awful nerve pain down my hip and leg and have to use my wheelchair again. I can’t even walk in a small store without pain. I’m getting a mri Thursday but I’m starting to feel like I’m a inconvenience to my family, and scared of the worst. (I live with them, and my mom drives me to appointments).
I feel bad for her taking days off of work, and the added stress of my struggles along with hers. I just want to figure out what’s wrong with my legs so I can live again.
Feeling anxious for the future
So for the past few years, my hips have gotten worse (mainly the past couple months it progressed), I can’t do things like I’ve used to without pain. My hip joints are move damaged from #HipDysplasia and the X-rays said I have lumbar #Scoliosis
I’m getting a mri next Thursday and I’m scared on what it’ll show. I’ve been fighting this really hard the past few months. The pain and having to use a wheelchair (I’ve had it since I was young but I got better, now it’s back). I just want to know what I have. I most likely will need surgery on my hip, spine, or both. I try to keep on a strong face for family but I’m tired and anxious for results. But it’ll take forever. Is there anyone to help distract?
I am a Keeper of the Storm.
My grandson is back in the psych ward Baker Acted again. I am, his biological maternal grandmother (Nanny). The court awarded me full guardianship, he's now 23 yrs old. I have been a constant figure in his life since he was 4 months old. His mother, my daughter has cerebral palsy. It's difficult enough raising a child but when your physically challenged it's extremely hard. Now let's factor in things that just weren't "right"..delayed speech... wouldn't look you in the eye...night terrors.... tactical issues..no boundaries..constant motion...hitting..self mutilated.. .and the tantrums that escalated into severe violence. He would always scream to his mom/teacher get nanny, get nanny she knows.. After years of many doctors shrinks medicines behavior analysis the diagnosis is... Rapid cycling raging bipolar.. ADHD.. Autism. spectrum.. hearing impaired..speech delayed..ambulation issues and if that isn't enough severely emotionally and mentally delayed. When he was only 10 yrs old he had been Baker Acted 13 times. I went into court yelling at the judge and finally had him removed from his mother's home. I was terrified he'd wind up hurting her or himself more not on purpose he just doesn't understand. The police actually thought we were destroying her apartment until one day it happened in school. He lived in a small group home for several years was doing well, then one day he destroyed the entire home. Where he is now he has destroyed property there also. He's also snuck out and gone to a neighbor's home and broke their windows. Now they have alarms and cameras everywhere. He'll sit in the middle of the living room with a belt around his neck saying he's hanging himself when the police see that it's immediate Baker Act... doesn't matter if he doesn't comprehend.
Today I get a call he got out of the group home went to a neighbor's home and took a brick to the guys car! Police/ Baker Acted. The second he's non compliant he gets shot with psychotropic meds. It just seems unfair that somebody who doesn't have the mental capacity to understand he has a mental illness gets treated like this and there's no other way. This is what breaks my heart into a billion pieces each time. While I never laid a hand on him except to restrain during his rages
He would spit on me tell me I'm a f...bitch try to bite me and f*** you I hate you I'm gonna kill you. Finally it would stop he'd start crying, then ask "whys everything a pig mess" our word for broken mess.
When he was little I'd tell him if you don't listen I'll snatch you bald headed. That always scared him. So now I wait for the med call from the psych ward and we're back on the carousel of mental health.
My biggest fear, since he's 23 yrs old and 6'1" what if he gets or pretends he has a weapon and...... #Bipolar1Disorder #ADHD #Autism #mentally Challenged# Emotionally Delayed #DisruptiveImpulseControlAndConductDisorders #SpeechDisorders #AuditoryProcessingDisorder #HipDysplasia # mentally delayed