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.
it's been a while since I've posted, Just had my quarterly examine with my Enod and the blood letting (I swear the tech is a vampire - 5 viles, she took) anyways... got lectured by the Endo for missing the last three month's LAR shots, so it will be interesting to see if the IGF-1 levels have risen due to the lapse.... to be honest, I just don't care anymore......I'm tired of fighting. Ten years of fighting..... 2 surgeries, 1 Gama Knife, 7 years of daily shots with the last 3 being 6 shots daily, 3 years of the LAR for what........even though the IGF-1 levels have hung in the mid 100's for the 2 years, I still battle the daily constant muscle and joint pains, the fatigue, the constant headaches, the lack of energy and the depression (fog) that hangs on the horizon just waiting for me to let my guard down for one minute.......... I'm tired of the daily hormonal supplements that get out of whack with every cold or flu...... I'm tired of having to be a gladiator every friggin day just to function, of having to beg out of family or social functions because I'm hurting or exhausted and even when I don't, the headaches suck out whatever enjoyment there is to be had........
Activities that I used to enjoy, like carpentry, design, painting become torturous task........anything that requires movement, exertion and even thinking becomes a task that requires summing every bit of energy and will just to accomplish the most minimal project.
I know it's just a bad day today.... but for some time now, the bad days seem to run on like some endless road stretching off beyond the horizon. Is this my future for the next 10-15 years just existing to fight the never ending battle...........if so, I surrender, this beast can do what it wants to me as long as it's quick......I've always told myself that everyday waking up breathing means it's a good day......... doesn't necessarily mean it's going to be a quality day........those have been far and few in between for the past couple of years and this gladiator is mentally and physically tired from the constant battle........maybe tomorrow will be a better day. Right now I have to focus to finish cleaning the bathroom.......at least I'll have one productive accomplishment today.
Activities that I used to enjoy, like carpentry, design, painting become torturous task........anything that requires movement, exertion and even thinking becomes a task that requires summing every bit of energy and will just to accomplish the most minimal project.
I know it's just a bad day today.... but for some time now, the bad days seem to run on like some endless road stretching off beyond the horizon. Is this my future for the next 10-15 years just existing to fight the never ending battle...........if so, I surrender, this beast can do what it wants to me as long as it's quick......I've always told myself that everyday waking up breathing means it's a good day......... doesn't necessarily mean it's going to be a quality day........those have been far and few in between for the past couple of years and this gladiator is mentally and physically tired from the constant battle........maybe tomorrow will be a better day. Right now I have to focus to finish cleaning the bathroom.......at least I'll have one productive accomplishment today.
Ledgy
Stay strong ,keep pushing forward
chippyd
That is course is a very good coping mechanism -- work out some nice, discrete, tasks that are potentially manageable, and get to finish one or two of them. If you start on a project called "clean the house", then you will never get done!
Life involves learning a lot of new ways of coping with things, and
breaking things up into little tasks really can give you a sense of achievement when they get done.
John
Google this: The Spoon Theory written by Christine Miserandino
or take a look at the site, Butyoudon'tlooksick.
I have had to realise that with my problems I have to use spoons wisely
. Done two bouts of xmas shopping, only couple hours long and have done the bare minimum for next two days after each shop as could hardly bloody move and was well into afternoon day after before I dragged my ass out of bed.
Some days I'll feel industrious but am aware that short bursts of activity are the key. I no longer have the stamina to be at a task all day. I no longer worry or care about this. I listen to my body. And stuff anyone else's opinion. They are not living in my achy body.
Other days I'm sleepy from painkillers , some days I just don't care about much at all and achieve very little. I just don't beat myself up about it now. No one ever died from leaving dishes in the sink!
Black days are hard but you feel them come on and you feel them lift. It is when you have lost the ability to sense them come that you are in trouble.
You are not alone :)
Have some spoons on me x
thank you for posting spoon theory. This is the best description I have ever read what it is like to live with sickness or disability. Her story could be mine - this is how I feel and how I live my life now. I listen to my body and plan very carefully each day :-)
Take care,
Harmony
PS: I have ordered all my Christmas gifts on-line :-)
but life goes on and walls are rebuilt to wage on...........it's cold today and the cold tends to multiply the pain....... a good day to stay inside and under the electric blanket.
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest, if you must, but don't you quit.
Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow--
You may succeed with another blow.
Often the goal is nearer than,
It seems to a faint and faltering man,
Often the struggler has given up,
When he might have captured the victor's cup,
And he learned too late when the night slipped down,
How close he was to the golden crown.
Success is failure turned inside out--
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you're hardest hit--
It's when things seem worst that you must not quit.
- Author unknown
I love this one also...Dont quit poem
Hugs to everyone as we keep fighting this fight & climbing this mountain.
Jokey, you ran out of space under your porch now?