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Hey! Anyone else tube fed-other complex issues?

ClareB74ClareB74 Member Posts: 8 Listener
in Welcomes and introductions
Hi. 
I’m 45, tube fed with TPN, APS, Lupus, FMS, CPS plus other issues. Not too much going on lol! 

Anyone else similar to me? 

I use a powerchair, stairlift, wet room and have an automatic electric door to help me get out the house. I have a wonderful husband whom I’ve been with since 13. 

Just wanted to say hello!

x
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Replies

  • Ross_ScopeRoss_Scope Community Team Posts: 2,373 Disability Gamechanger
    Hi @ClareB74

    Welcome to the community and thanks for giving us an introduction to yourself. 

    I'm a member of Scope's Community Team, so feel free to give us a shout if you ever need any support or advice on the community in terms of getting around and figuring stuff out :) 

    Glad to hear you have a wonderful husband, that's a long time to have been with someone and it's great that you have found someone to spend that time with.
    Online Community Coordinator

    Want to tell us about your experience on the community? Talk to our chatbot and let us know.
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  • janer1967janer1967 Community champion Posts: 7,202 Disability Gamechanger
    Hi and welcome from me 

    I dont have your issues I am an amputee and visually impaired so use wheelchair and power chair outside 

    I live in a bungalow with my 14 year old son who is my rock 
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  • endowarrierqueen96endowarrierqueen96 Member Posts: 25 Connected
    I once knew a boy who required a trach
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  • chiariedschiarieds Community champion Posts: 6,895 Disability Gamechanger
    Hello @ClareB74 -  welcome to the community from me too. I don't have your particular set of problems, but enjoy chatting with our members that have many & various disabilities. I hope to see you around the forum. :)
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  • lisathomas50lisathomas50 Member Posts: 2,897 Pioneering
    @ClareB74 hi I have lupus  I know how you feel being tube fed my lupus caused a stroke and I couldnt swallow so I was tube fed I hated it but it had to be done I no longer need it  but I have empathy with you  did your lupus cause uour other problems 

    I also have heart murmer copd  over active thyroid brittle bones  spondylitis and a left sided weakness 
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  • ClareB74ClareB74 Member Posts: 8 Listener
    lisathomas50 said:
    @ClareB74 hi I have lupus  I know how you feel being tube fed my lupus caused a stroke and I couldnt swallow so I was tube fed I hated it but it had to be done I no longer need it  but I have empathy with you  did your lupus cause uour other problems 

    I also have heart murmer copd  over active thyroid brittle bones  spondylitis and a left sided weakness 
    Hey Lisa

    Thanks for replying hun. Lupus has attacked my blood, caused kidney damage, wrecked my gut and intestines which I needed ops for, FMS is secondary to the SLE. I suffer with chronic pain syndrome too, plus a few other ailments. X
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  • lisathomas50lisathomas50 Member Posts: 2,897 Pioneering
    I am the same do you have to have blood thinners my liver and kidneys have slight damage  and I have eating problems but no longer have a tube it must be awful havei g the tube all the time I have chronic pain syndrome but did pain management that helped me 

    My lupus caused my other problems 
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  • emmarenshawemmarenshaw Community champion Posts: 704 Pioneering
    Hello @ClareB74  I’m Emma, great to have you with us. A warm welcome to the community.
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