Osteogenesis Imperfecta

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Osteogenesis Imperfecta
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    Start of the year and the pressure to go to the gym

    I don’t love exercising. I know the theory around it (apparently, exercise is good for you) but as a person with a disability exercise can be hard. Especially when the start of a new year brings a wave of fatphobic resolutions and pressure to go to the gym and “get fit”. The mentality shifts from Holiday fun to marathon runners saying, “Wake up at 5:00 AM and I show your body who is boss!”. I tend to roll my eyes and think, “I’m more in a constant negotiation with my body”. The idea of ‘making’ my body do anything is so far from my experience that I just have to laugh. I have Osteogenesis Imperfecta or brittle bone disease, that makes my bones very fragile and easy to fracture. Most days I am juggling with different versions of my body depending on the amount of pain I have. Still, excising is one of the best things anyone can do for their health, so I try my best to keep active. Because of the reality of my condition, I can’t go to a fun Kickboxing class or take arial aerobics like some of my friends do. But I apply the same method I have for other things in my life, and I adapt exercise to what works for me. During the lockdown period of the pandemic, I did yoga videos from home and adapted the poses to do them sitting down or without applying pressure to my knees and legs. Now I mostly walk around my neighborhood with my dog. I love to be outside and that makes the excising experience a more positive one. I comes with its challenges, for example I have to be careful the ground isn’t wet so that I don’t fall and get injured. But I like it so much more than going to a gym. When I walk outside it is a chance to go at my own pace, to really think about things and observe the trees and world around me. It’s not fast, because I can’t walk fast and that is ok. Recently a friend invited to me to go with her to her gym and try a yoga class. Last year I got a pass to my local gym and tried two classes. Just walking in the bright lighting, I was a little uneasy, gyms are spaces mostly occupied by able-bodied people, and the kind of people that want to perfect their bodies. These gym-goers tend to be comfortable in tight clothing, sweaty and showing off their pecks… and I’m more on the “give me the stenchiest leggings available to mankind” team. Nevertheless, armed with my pass and rolling in with my blue walker, I went to two different yoga classes so I could get the feeling of each one. The first class was wonderful. The second, not so much. The big difference was in the instructors. I chatted with each one a few minutes before the class and told them a resumed version of my health condition and that I wanted to adapt the class. They both agreed but the dynamics of the class where very different. The first instructor would pass by my mat and offer suggestions of poses or nod encouragingly when he looked up from his poses at the front of the room. The second teacher barely looked my direction the whole class and while she walked around the room full of mirrors, she purposely avoided my corner. I knew right then and there that that class was not a good fit for me. Luckily, I had a more positive experience with the first class, if not I might have left the gym very disappointed. In the end, I decided that gym was not the one for me. If I decide to try a gym again, I know what I am looking for: eye contact is important, feeling welcomed is important and I will not be going to a class where anyone wants me to be invisible.

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    Kissimmee Florida area, is there anyone here that has Osteogenesis Imperfecta? I feel so alone with this disease. I’ve had 102 fractures to date.

    #OsteogenesisImperfecta i have screws in my knee and hip. A titanium rod in my femur to hold it together. ive also suffer from hearing loss and have hearing aides now. A few years ago I decided to go with dentures because of the DI. BEST DECISION I EVER MADE. I pray that someone will answer my post so that I can have someone to talk to about the issues around OI. GOD BLESS!!!

    7 comments
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    I'm new here!

    Hi, my name is Ren. I’m new to The Mighty and look forward to sharing my story. I am currently diagnosed with anxiety, depression, gender dysphoria, ADHD, POTS, and I am in the diagnosis process for EDS, ASD, and possible osteogenesis imperfecta. I'm a minor and my pronouns are he/they.

    #MightyTogether

    #Anxiety

    #Depression

    #AutismSpectrumDisorder

    #ADHD

    #EhlersDanlosSyndrome

    #GenderDysphoria

    #Dysautonomia #POTS #osteogenesis

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    Osteogenesis Imperfecta people, are you out there? I feel so alone with this disease. I also suffer from depression.

    #OsteogenesisImperfecta

    5 comments
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    Shower

    I need a shower. But I’m petrified. I know this sounds 😛.
    I live with Osteogenesis Imperfecta, with 102 fractures to date.

    Now I’m sooooooooo scared of falling again and fracturing something.
    I need a shower, but I’m so scared.

    3 comments
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    is there anyone here that also has Osteogenesis Imperfecta? Brittle bone syndrome, or glass bones. ive had 102 fractures to date. i feel so alone.

    #RareDisease

    3 comments
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    Does anyone on here also have Osteogenesis Imperfecta, brittle bone syndrome-glass bones? I’m 57 and have had 102 fractures to date.

    #RareDisease

    1 comment
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    OI Later in life #OsteogenesisImperfecta

    I have a milder form of osteogenesisimperfecta . When I was born I only weighed 2 pounds and all my bones were broken. They were brittle and soft. They did harden by the time I was three and I didn't walk until I was 4 years old. This resulted in me being behind in development and I only grew to be 5 feet tall. I have a fraternal twin that is 6 feet tall sou you can see how my height was an issue. My question is are there anythings I need to watch out for later in life as I am 51. I have had 3 knee surgeries and all my joints seem to pop. Any help would be great.

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    Hi! First post. Osteogenesis Imperfecta One of the milder types. Not good with words. 16 years old.

    #RareDisease

    6 comments