osteonecrosis

Greetings. New member. I survive with #Osteonecrosis #Depression #Tinnitus #Neuropathy and #Anxiety

I am having a bad pain day today.

Glad to meet everyone.

Yes, I wear lipstick. Yes, Eminem was playing from my car. Yes, I am 44 years old. Yes, I had to get groceries before the winter storm arrived. Yes, I have handicapped plates. Yes, the car belongs to me as do the plates. (❗️AND❗️) Yes, I see your dirty looks, glaring, shaking of heads, whispering and ignorant assumptions of what a handicapped person looks like. I owe you no explanation of my disability. You are not entitled to my health history. The audacity of people to verbalize comments 'that's a handicapped parking spot,' 'stop using your grandma car,' 'I'm going to report you.'
Listen assholes, I have more metal in my body than an aluminum can recycling center. I have Avascular Necrosis (AVN) or Osteonecrosis. I have rods, pins, plates, screws etc holding this body together. My hips went first. Bilateral hip replacements. Second, my left shoulder. Shoulder replaced. Third, knees. Bilateral knee replacements. Fourth, left ankle. Same story, same dance.
Like most, some days are better than others. Sometimes I need a cane, sometimes I don't. Sometimes I can get in/out of my car with minimal difficulty. Other times it takes me 10 minutes to align my hips, legs and feet to the ground.
Basically FK YOU and your dirty looks. #AvascularNecrosis #Osteonecrosis #ChronicIllness #ChronicPain #InvisibleDisability #InvisibleIllness #Disability #ButYouDontLookSick #Youdont knowme

I’ve been taking a full therapeutic dose by injection everyday for 7 months and do not feel it has made any difference but do not know how long to keep trying since my hemotologist said it’s up to me how long. the studies have been done for 30 -90 days until more recent studies have gone 3-6 months. it is supposed to stop the progression of the avn if it is in stages 1 or 2 and maybe help with symptoms of more advanced stages of disease but also depends on the underlying cause of the avn. if you have any experience with this I would love to hear about it.
#Osteonecrosis #AvascularNecrosis #AVN

Hey everyone. So the founder had me respond to things in private chat then asked if I’d share this with y’all. So, here you go!

Wow. Hello, Thomas. I honestly clicked on your message and indisputably did not anticipate such a perfectly timed and worded welcome package, essentially. It was much needed. I have been struggling for years but for the past 8-9 years has been just devastating. I became irreversibly physically disabled in both my legs and feet with a rare disease known as osteonecrosis, which was caused by a flash dose of too high a dose of prednisone over the course of a 5 day period. I had just turned 30
At the time and just turned 36 this past Monday. My CPTSD has been so exhausting and, honestly, extremely isolating and lonely. Suicidality unfortunately not only can consume my mind and soul for days or weeks or even months that seem to never end, it also runs deep in my maternal family history. My great grandmother, her daughter, my grandmother, both took their lives after years of depression and ptsd. And her daughter, my mother, aged 65, tried to take her life last spring. I’ve had a multitude of attempts myself. So I am dealing with an aggressive amount of very traumatic and stressful things every waking moment and, sadly, during every moment I am “asleep”. There’s no escape these past 8mo or so. On a positive note, however, I have discovered and alas accepted that I truly am an incurable optimist. I fight back. I give it my everything to make it to tomorrow when my skies become so grey they turn to black volcanic ash. This is me reaching out and giving support groups another go and would truly love to really find some inner peace by meeting with and speaking to professionals such as yourself but also common people with similar struggles and diagnoses. Im also schizophrenic. That has its own challenges of course. Im definitely going to join your group. Thank you for your kind words, and mainly, the welcoming parts. It made my month.
Holly

I rely HEAVILY on the support, guidance and care of my rheumatologist as most of us do, especially as I’m at that stage where friends have been long gone but “let me know how I can help,” texts still show up randomly to ease their minds, and I lost every family member at fibromyalgia. ;) You know.

My doctor is respectable, a little on the hard side, but his assistant has lupus and I thought, wow finally I’m settled and can relax knowing this one isn’t going anywhere, he’s accepted me, and it’s been 7 years. Cue the shattering mirror.

What would possess a doctor who knows all of my documented (some of the most serious by HIM) medical problems, including osteonecrosis due to steroid usage, to bust out with this sentence: “Well. Let’s get you on a therapeutic dosage of prednisone to see if that might give you a little oomph, and maybe 🤔 address some of this MALINGERING and kind of lack of energy.”.

Slick, right? Slipped it right in there. My foggy brain didn’t catch on for a week or so and then I thought, ‘I don’t think that’s what I think it is- I think that’s a BAD word!’...

So I finally looked it up.

A malingerer is someone who would feign being sick in order just for example, say, to get out of WORK OR SCHOOL!!!!!!

Omg it’s the total lack of support of everything I’m dealing with starting completely over from the very beginning of this horrendously difficult and painful journey with only my primary care doctor on board this time and a few empty text messages!!!

Cue the freaking anxiety and hopelessness and finally, some well-deserved anger.

Any ideas what to say to this person? Thank you!

I have AVN in both hips and both knees. I had core decomp. surgery in my right hip (no noticeable change yet) but not the left; left has "minimal flattening/collapse of femoral head" -- doc wants to wait and eventually do a hip replacement. I use a cane sometimes but can get around without it (I limp very noticeably without a cane and I move much slower/have more pain as well). How do I know if I'm technically disabled? Getting up, sitting down, walking, and climbing stairs are difficult and often painful but I still do these without a cane (I'm in college so everyone stares if I use my cane).

This is gonna be a long thought thing. I been having problems with my hip, knee, & walking. A year ago my knee was hurting & I started to limp which mess up my walking. I saw an ortho doctor, he prescribed 3 months of physical therapy. I did that it help tremendously.

But a month ago, I notice that I'm losing strength in my leg. I did not want to go back to PT or go back on my walker. So I join a water exercising class to help. My second time at the gym I slip on water & fell on my hip.

I went to the ER & I have osteonecrosis. I'll explain it to my best ability. I have systemic lupus & I been on Prednisone for 10yrs. Prednisone has cause my hip bone to become weak. So weak that the bone is losing it blood supply. The ER doc said that he didn't need surgery yesterday night. But, need it soon. Like it was that dangerous or wouldn't kill me if I didn't have it now.

I see my lupus doc in Friday & she going to evaluate my hip & referral me to a hip specialist.

I don't know how I feel. I know I'm in pain. I know I'm tired. I'm tired of this. I just want to walk normally. And I'm mad. The past year I had X-rays on my knees because we thought my pain was from my knee. If the doctors were more thorough in the past & x-ray my hip. Then maybe I wouldn't be in pain now. I'll be onto recovery.

I just upset but also numb. I wanna cry & stay in bed. But I also want to get up & do the things I normal do. But now I can't because I need help to doing simple things.

I'm super scared and stressed about it, but the pain in my hips is disabling.