Disability/Health Social Group
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Guess I'll jump in too .... I have Cushing's Disease .... after 2 failed attempts at removing the tumor from my pituitary gland (although they did manage to remove about 1/3 of the gland, NOT the tumor 8-o) went with door #2 ... bilateral removal of my adrenal glands ...so now .. I'm adrenal insufficient..... taking high dose cortisone as replacement therapy ...and that means, a lot of things ... but the top 3 would be #1) I'm left with an extremely suppressed immune system, so hanging out in the real world, with real people .. is not my best plan .... #2) I have no way to deal with "stress" of any type, aside from eating a handful of cortisone , and last, but not least ... #3) my bones are turning to crap .. if you drop me .. I will break ....
But .. considering the alternative (death) .. I figure I'm in pretty good shape ... for the shape I'm in.
But .. considering the alternative (death) .. I figure I'm in pretty good shape ... for the shape I'm in.
One of my MS symptoms is that I can't always find the right words, or always construct sentences properly as my thinking and concentration slow down. The mental as well as physical fatigue I get can mean that it can take me as long as 20-30 mins just to post a reply like this... which is why I don't post as much as I'd like!
I don not have MS, but ADD, so this might also take awhile! Lifelong ADD and passed it on to my 2 girls and half my Grandkids! We have interesting conversations!! Can't think of names, remember numbers, stumble for the right words, etc...that's why I'm not a journalist.
It's been a long-time belief that cigarette smoking drastically hindered my ability to overcome the effects of this learning disability, so we'll see if that improves. Smoke free for two months and 6 days!
Kate, I didn't realize this was a multiple choice poll (your mention of that will probably get buried here). I can add it to the title if you want.
Wrecked and Bonkers...gotta love that one!
Lu
Wrecked and Bonkers...gotta love that one!
Lu
I read the spoon theory and it was amazing! I have chronic back pain and reading the story opened my eyes to a new way of explaining how any chronic condition effects a life.
Thanks for sharing =)
The link about the spoon theory was wonderful, it made me cry, because for 5 years I have been watching my son learn his own method of coping with his disease, which encompasses many different symptoms, from arthritis to chronic meningitis, hearing loss and learning disabilities, osteoporosis and more. At 5 he can not articulate his feelings and as his mom I know when he is struggling and limits himself but his peers don't understand why he can't do this or that, so he chooses to isolate himself. It is as though I watch him gather his own spoons each morning as he carefully calculates his day.
I would enjoy a group like this. Some of those names though, hmmmm. Anyways I'm a disabled vaper. Make it happen kate.
I won't make it invitation only, anyone who wants to join will be welcome.
I'll get it sorted out today Chris
Hi guys 'n gals,
Nice to see so many positive responses !
I'm glad 'The Spoon Theory' is so well received and appreciated, it was definitely an eye-opener for me and touched my heart deeply (made me shed a tear or two as well, soooo recognisable !) ! Thanx also for the 'The Open Letter...' link Starlight, I liked that too and have added it to my faves.
I didn't realise it was a multiple choice poll either or I would certainly have chosen some more (all great suggestions !).
Although I like the name 'Wrecked and Bonkers' too (because it is hilarious
and where in heck would we all be if we didn't have humor, eh ?!), I'm also a bit wary of picking a name with perhaps some 'negative' connotations, ie; anything that may 'put ourselves down' to the 'outside world' in any way.
What I mean is this; I always try to approach life (and my condition, with all its limitations) in as positive a way as possible. I feel I have to as if I didn't, I would probably go nuts (bonkers !) because it's so incredibly hard and exhausting to live with something that you can never get away from, even for a short respite. There is always the risk of blaming oneself or suffering from low esteem (never feeling 'good enough'), so I'm careful not to allow myself to become too negative about/down on myself (don't always succeed by the way !).
Perhaps too seemingly tragic or corny (please ignore if so !), but hence my suggestion of 'Better together' - ie; our situation may not be great (understatement !), but we make the best we can of it, and life in general, and support each other as much as possible to feel better.
Anyway, whatever name we end up choosing (what's in a name ?), it's très cool to be able to come together like this and learn from each other. Thank you to all who have come forward so candidly with their 'afflictions', I find it very interesting and informative as I had never heard of some of the conditions mentioned. I applaud your openness, honesty and courage 
!
Cheers,
Silver
Nice to see so many positive responses !
I'm glad 'The Spoon Theory' is so well received and appreciated, it was definitely an eye-opener for me and touched my heart deeply (made me shed a tear or two as well, soooo recognisable !) ! Thanx also for the 'The Open Letter...' link Starlight, I liked that too and have added it to my faves.
I didn't realise it was a multiple choice poll either
or I would certainly have chosen some more (all great suggestions !).Although I like the name 'Wrecked and Bonkers' too (because it is hilarious
and where in heck would we all be if we didn't have humor, eh ?!), I'm also a bit wary of picking a name with perhaps some 'negative' connotations, ie; anything that may 'put ourselves down' to the 'outside world' in any way.What I mean is this; I always try to approach life (and my condition, with all its limitations) in as positive a way as possible. I feel I have to as if I didn't, I would probably go nuts (bonkers
!) because it's so incredibly hard and exhausting to live with something that you can never get away from, even for a short respite. There is always the risk of blaming oneself or suffering from low esteem (never feeling 'good enough'), so I'm careful not to allow myself to become too negative about/down on myself (don't always succeed by the way !).Perhaps too seemingly tragic or corny (please ignore if so !), but hence my suggestion of 'Better together' - ie; our situation may not be great (understatement !), but we make the best we can of it, and life in general, and support each other as much as possible to feel better.
Anyway, whatever name we end up choosing (what's in a name
?), it's très cool to be able to come together like this and learn from each other. Thank you to all who have come forward so candidly with their 'afflictions', I find it very interesting and informative as I had never heard of some of the conditions mentioned. I applaud your openness, honesty and courage !Cheers,
Silver
Ok, well I've just created the group and called it Wrecked & Bonkers. We can discuss the name and change it at any time. I understand what you're saying Silver but since I made a poll it would be wrong for me not to use the choice with the most votes for now.
The group is open to anyone who wants to join although I've sent invites out to the people who showed an interest on this thread to make it easier to find.
We don't have a forum just yet, just a discussion board. I think we need to have five members before we can have a forum, so get joining - the sooner we make the quota the sooner we can get chatting.
The group is open to anyone who wants to join although I've sent invites out to the people who showed an interest on this thread to make it easier to find.
We don't have a forum just yet, just a discussion board. I think we need to have five members before we can have a forum, so get joining - the sooner we make the quota the sooner we can get chatting.
You're absolutely right of course Kate, no worries. Thanx for setting this up !
Cheers,
Silver
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