Hi, my name is AvocadoNo5 — Scope | Disability forum
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Hi, my name is AvocadoNo5

AvocadoNo5
AvocadoNo5 Community member Posts: 9 Connected
Hi everyone 👋🏼
 I’m so glad I came across this forum - I’ve been looking for a place to talk to others in maybe similar situations to me regarding disability. I can’t work but try and have as active a life as possible. It’s hard to talk to my family and friends about my health - no one really gets it unless you’ve been there. Looking forward to chatting to you all. 
H xxx 
H xxx 

She/her
psoriatic arthritis / osteoarthritis / syringomyelia 

Comments

  • Hannah_Scope
    Hannah_Scope Posts: 7,316 Disability Gamechanger
    Hello @AvocadoNo5

    Welcome to the community! :) Glad to have you with us! You keeping well? 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Albus_Scope
    Albus_Scope Posts: 2,911 Scope online community team
    And a big welcome from me too!



    *Wanders off humming Mambo No5*
    Albus (he/him)

    Online Community Coordinator @ Scope

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  • AvocadoNo5
    AvocadoNo5 Community member Posts: 9 Connected
    @Albus_Scope 👏 that’s where it came from many years ago - plus the amount of avocados you need to squeeze to find a ripe one! 
    H xxx 

    She/her
    psoriatic arthritis / osteoarthritis / syringomyelia 

  • Albus_Scope
    Albus_Scope Posts: 2,911 Scope online community team
    Haha @AvocadoNo5, I love a good pun name.  Well done. :) 
    Albus (he/him)

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  • AvocadoNo5
    AvocadoNo5 Community member Posts: 9 Connected
    @Hannah_Scope thanks for the welcome
    I’m  having a rare good day today - never sure what the morning will bring. Hope you are keeping well too?
     Do people tend to post their disabilities in their signatures or bios? I have psoriatic arthritis, osteoarthritis and syringomyelia - I’d love to chat to others in a similar situation. 
    H xxx 

    She/her
    psoriatic arthritis / osteoarthritis / syringomyelia 

  • Albus_Scope
    Albus_Scope Posts: 2,911 Scope online community team
    I'm glad you're having a good day, it's always good to take advantage of them when they happen. :)
    And I'm doing good thank you, looking forward to a weekend off to spend time with the dogs.

    It's totally up to you if you wanted to add your disabilities to your bio or not, I like the idea tbh.  But we have plenty of great categories to share your stories and speak to likeminded people.  The Coffee Lounge is great if you just want to have a chat or play some games. 
    Albus (he/him)

    Online Community Coordinator @ Scope

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  • chiarieds
    chiarieds Community member Posts: 15,894 Disability Gamechanger
    Hi @AvocadoNo5 - & welcome from me also. I find it interesting when members say a little about the disabilities they have, so thank you. Now I can say in reply that I also have OA, & have a good understanding about syringomyelia, as I've read quite a lot about it. The reason being that my family is affected by Chiari 1 Malformation, which is often the cause of syringomyelia. In our case we have Chiari1 Malformation as it can be associated with Ehlers-Danlos Syndrome (we have the type where we have hypermobile joints).
  • AvocadoNo5
    AvocadoNo5 Community member Posts: 9 Connected
    @chiarieds great you’ve heard of syringomyelia - I’d never heard of it until I was diagnosed. Sadly mine is affecting my thoracic spine and is of unknown origin. So just a case of monitoring symptoms until they are at a point surgery might be an option. It’sa very painful condition - that must be difficult in your family? 
    H xxx 

    She/her
    psoriatic arthritis / osteoarthritis / syringomyelia 

  • AvocadoNo5
    AvocadoNo5 Community member Posts: 9 Connected
    Thank you @Albus_Scope I’ll check the coffee lounge out 👍🏼
    H xxx 

    She/her
    psoriatic arthritis / osteoarthritis / syringomyelia 

  • chiarieds
    chiarieds Community member Posts: 15,894 Disability Gamechanger
    Hi @AvocadoNo5 - unfortunately I know more about syringomyelia (& Chiari 1 Malformation) then I ever wanted to know! My son has a small cervical syrinx, which thankfully hasn't changed, but even in one family we're all different. I do have chronic daily pain, which is of a constant burning nature, & medication only helps to dampen it down a little, so you have my sympathy. I find it far worse than my joint pain.
  • AvocadoNo5
    AvocadoNo5 Community member Posts: 9 Connected
    @chiarieds yes the burning pain is something else! Much worse than my joint pain too (and I’ve been told I need a knee replacement!). My tens machine is a great help 
    H xxx 

    She/her
    psoriatic arthritis / osteoarthritis / syringomyelia 

  • chiarieds
    chiarieds Community member Posts: 15,894 Disability Gamechanger
    I'm pleased your Tens machine is helping so much, tho sorry to read you might need a knee replacement. However, one of my neighours had this done last year, &, altho it took time (& doing her physio exercises regularly at home; I checked as I used to be a physio!) she's doing great now, & importantly, pain free.
    About syringomyelia, should you wish to know more, this is the best site I've found about both this & Chiari 1 Malformation: https://asap.org/  If you look under 'Conference 2024,' then 'Past Conferences,' there are many videos which are for patients.
    Anyway, very nice to both 'meet' you, & chat to you, & stay in touch, just whenever you'd like  :)
  • Jimm_Scope
    Jimm_Scope Posts: 2,361 Scope online community team
    I finally have an answer to the question "I wonder where chiarieds got their name from". Very interesting!

    My partner has EDS so I'll need to look into this, I know she doesn't have Chiari 1 at the moment, doesn't hurt to read up about it.
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
    Online Community Specialist

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    Opinions are my own, such as mashed potato being bad.
  • AvocadoNo5
    AvocadoNo5 Community member Posts: 9 Connected
    @chiarieds thank you for the information - I’ll definitely be checking that out. And great to meet you too 😁
    H xxx 

    She/her
    psoriatic arthritis / osteoarthritis / syringomyelia 

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