Cushings disease
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Hadley9th
Community member Posts: 8 Connected
Is anyone on here with a Pituitary or adrenal insufficiency?
I'm 7 years in remission from the condition and it has left me with so many problems that no one understands.
I had an ACTH producing pituitary tumor that caused my body to make to much cortisol, which is the fight or flight hormone.
I was a healthy confident woman who bought up 2 children alone after my husband left. For years I was a size 10/12, I exercised, held a physical job and travelled alone. Now I'm a size 20/22 , have to use a wheelchair to go out, frightened to go out alone, as I may go into crisis, have lost the majority of my friends and spend most of my time in my pyjamas.
My husband is brilliant, but I miss female company doing girlie things. I look in the mirror and no longer recognize myself, I don't like what I see, so why should others I suppose.
I'm scared of coming out of remission too. I've been told surgery is to high risk for me too. So what would happen?? !!!
Sorry this a long post, I had people to talk too whilst I had Cushings, now I don't want to keep on at my husband about "stuff".
I'm 7 years in remission from the condition and it has left me with so many problems that no one understands.
I had an ACTH producing pituitary tumor that caused my body to make to much cortisol, which is the fight or flight hormone.
I was a healthy confident woman who bought up 2 children alone after my husband left. For years I was a size 10/12, I exercised, held a physical job and travelled alone. Now I'm a size 20/22 , have to use a wheelchair to go out, frightened to go out alone, as I may go into crisis, have lost the majority of my friends and spend most of my time in my pyjamas.
My husband is brilliant, but I miss female company doing girlie things. I look in the mirror and no longer recognize myself, I don't like what I see, so why should others I suppose.
I'm scared of coming out of remission too. I've been told surgery is to high risk for me too. So what would happen?? !!!
Sorry this a long post, I had people to talk too whilst I had Cushings, now I don't want to keep on at my husband about "stuff".
Comments
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Hi @Hadley9th, I'm sorry to hear this. I think when our health takes an unexpected turn, it can have a devastating impact on our mental health. Have you been receiving any emotional support from your GP?Disability Gamechanger - 2019
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My GP has been amazing. She listens well, unfortunately whenever I go it's about another ailment so no time for talking about these things. And you know how difficult is to make appointment with your GP is.
I talk to people on fb with my condition, have even met a couple. I miss all the girlie fun, were never to young for that. -
I know what you mean. When you say girly things, do you mean like pampering, etc?Disability Gamechanger - 2019
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Yeah, window shopping, lunch etc. I would absolutely love to get my make up done, put on a nice dress and go out. I have some lovely clothes, but nowhere to where them lol
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@Hadley9th
Hi and welcome
Sorry you're really missing the girlie things.
Have to say though, your pic is an inspiration! You look gorgeous in that dress and modern hairstyle
Thank-you for that. I must pull myself together and improve my appearance. I look a mess! -
Nothing better than a spot of window shopping! I'd love to be able to do it more often too, maybe you could put the idea to the support group you're involved in? Organise a pamper session, or a nice meal out with a few of themDisability Gamechanger - 2019
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Just realised (in case anyone thinks I'm bonkers)
@Hadley9th's full dress can be seen on her info page, not on this one!
Lovely pic x
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@paffuro10 Thank you. Youve made my day. I love my clothes. I buy most on Ebay or in sales. My hair I'm very lucky with. Its thick and luckily didn't fall out during Cushings. I try to look my best whenever, I go out. Its makes you feel better. If I can help in any way please ask. I love helping to find a new look etc.
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Welcome to the community @Hadley9th! Sorry to hear you are missing out on things like this, I appreciate how difficult this can be.
Can't beat a bit of window shopping and a lovely lunch out! What things do you do at the moment? I like doing crafts when I can't get out of the house much.Scope -
@Chloe_Scope
I confess to too much gaming (love Skyrim) when I can't get out much.
Then complain to son that he's Gaming too much!!!! -
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@Chloe_ScopeI took up beading 2 years ago. Started with simple bracelets then taught myself to make Christmas decorations, and now I'm onto flowers. I love it. But so expensive. I like to cook to, but unfortunately that's a struggle now. No strength in my arms. I also forget I've put something in the oven lol.
I can no longer read as I forget what I've read. So it's like groundhog day, re reading the same paragraph over. Love horror films. Anything spooky. -
The beading sounds beautiful @Hadley9th! I love to crochet, although I don't do it as much as I'd like!
I'm sorry your memory has impacted some of your hobbies, do you think audio books would help?Scope -
@Chloe_Scope
I have tried them, but again I've forget what's happened. That's why films are good, cos watching a story has more of an impact. Unless it fast going with too many characters then I get confused and fidgety lol. I play a lot of word games on line and Quiz up. -
I'm glad films still are good.
You might like the letter change game that we have going on the community.Scope
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