Acromegaly Support Group

Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.

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Endocrine System
/ Acromegaly Support Group

Group hug lol

molehands
molehands
Hi everyone I just wanted to drop in and give you all a hug. Feeling rather emotional and deep. We all struggle so much in so many ways but because were not at deaths door it's hard to feel the empathy sometimes. I hope everyone is doing ok and hanging on in there. Xx

Put my life under the microscope yesterday for a benefits medical and was rather down after as makes you realise all the things you don't do ect anymore and how your worked revolves around pain, fatigue ....... Not exactly living life right now lol. I cant wait for the springtime. Get some sunshine more often and I'll come out my cave :)

I am thankful to the online acro community who accept me as one of their own even though strictly speaking it is just the signs and symptoms we share and not the cause. Without DS and acro support on FB I would be in a much darker place. So thank you for just all being you :)

(((((((hugs)))))))

Heather x
deleted_user
deleted_user
You are dead right I hate appointments like that ,it reminds me that I have a nasty theiving ilness that few understand.This sites members have kept me sain many times,stopping the feeling of loneliness associated with rare illness'
Spring is very close.
Dig your heals in and hold tight, dark times come and go.
,yes, big hugs all round
warmcommunique
warmcommunique
True Dat Amanda!! hah. Seriously, I did the same thing. I read everyones post for 6 months before I started posting a couple weeks ago and it has literally changed my life. Sharing in our triumphs and our sorrows together, never being judged by our outer appearances even though they aren't as bad as we internalize them to be. These are all things that help make life worth living when you are sick, and feel alone.

Heather - so awesome of you to post this and share with us. I'm sorry you had to deal with this, but try not to let it be too discouraging for you. Sometimes we get "reality checks" in different forms, and they force us to face our demons... but the good news is that we truly aren't alone, and by the power of the community as a whole we are already advancing the future of Acromegaly. Group hugs rock - and a big bear hug back to you lady!
Jen564
Jen564
Hi everyone, I haven't been here for a while but thought I would revisit to say hi particularly to my friends who are not on Facebook but were so supportive when I was first diagnosed in 2006. I would have been lost without you. 6 monthly endo appointment on Tuesday so hoping for good news.
PapillonRoseBleue
PapillonRoseBleue
Hi EveryBody. Like Jennie said, it's been a while for me, too. I'm not on-line much at all. When I do get on-line, it's usually on fb. That doesn't mean that I've forgotten my DS friends, though. So I'd like to join in that group hug & give a shout out to all those beautiful people who were there for me starting with the day of my confirmed diagnosis & to the others I have encountered along the way who have participated in mutual encouragement and support. Keep fighting that acromonster & thank you for all the love encouragement. For a time, you truly were my family, more so even than my blood family. Take care! Rose
JohnD1
JohnD1
Heather/Moley,

I hope the benefits medical goes OK. I have today (yes, Sunday) just been for my three-yearly colonoscopy and once again am reminded of the long-term nature and effects of acromegaly -- my colon is too long for the bowel preparation to have worked properly. However, they did what they could and this time did find a polyp which they promptly zapped. In view of the fact that there might be others lurking in there, they want me back in a year (oh joy) but with a double dose of bowel prep (oh double joy).

We're all here to support each other, and I have made good friends here too.

Still got plenty of pethidine in my system so am feeling drowsily happy at the moment....

John
wesley84
wesley84
What wonderful spirits we all share in common! The strength and resolve of everyone in this community; the justification that we all wont let this Orphan Disease judge our lives. The struggles and the many hard won victories for each and every one of us... Our bodies are so resilient, and yet are so fragile. I am thankful, so thankful to have friends on DS that understand the journies we all share together and nourish each others spirits! Here here, and big bear group hug!!!
molehands
molehands
:) John I hope the rest of your Sunday was suitably restful as the pethidine wore off. Hope there's no more lurking polyps. I have a power washer in shed you can use next time lol.

Hugs again for all :) we are rather great aren't we! Lol

Take care
deleted_user
deleted_user
Hugs to all from the wife of an acro-patient. I am so grateful to you for advice and for many sanity checks, and especially for Papillon Rose, who has helped so much.
Granin
Granin
It IS great to have this forum! There are not many of the "old-timers" since I first lurked, then got brave and announced my first upcoming endocrinologist visit and suspected diagnosis, then the still-developing journey of the past three years, almost to the day. I don't even want to think about the possibility of not having the strength and encouragement of this group throughout these years. Very scary! We owe the people who have come alongside us, and our payback is to do the same for those who will need our help along the way.

It's really a blessing to have met one of my fellow travellers in person as well. There is a strength to be gained that I don't think you can find any other way and I am very thankful to her. She encouraged me so much.

Eileen
JohnD1
JohnD1
Moley, thanks for the offer of the power washer. I think I my well pass on that one! Now I thought I had done really well on the pethidine, and that it had all worn off, then I came to sit at my desk on Monday morning and tried to apply my brain to some thinking. It was a few hours till I got functioning properly. The booklet they gave me said it could last 24 hours or more, and I guess they were right.

Well, enough talking crap.... :-)

BTW spring is on its way