Posted 11 December 2009 - 03:18 PM
About 7 years ago I wrote a series of Graves' related Christmas Carols and we had a hoot with them here. This is the only one I can find. I have another called the 12 days of graves Christmas but I can't find it on my old computer. If any of the old timers have it and can post it, I'd appreciate it.
Rudolph The Long Nosed Endo
Rudolph the long nosed endo, really had a longish nose,
Whenever I went to see him, I could surely say it grows.
All of the other patients, used to laugh and call him names,
I didn’t think it was funny, till I finally learned his game.
Then one boring Friday night, I stumbled onto Mediboard.
You folks with your minds so bright, you helped me get my levels right.
Then I was getting better, really found what was best for me.
Rudolph the long nosed endo, you will now be history!
Posted 11 December 2009 - 03:35 PM
Oh man I loved that one!!!
OOOH if any one has more to post that would be great!!!
I think we could all use some holiday chear and laughs LOL!!!
You go Monica!!!
Posted 11 December 2009 - 03:54 PM
That was awesome!!!! So funny yet so true!!!
Ya know, I think we all spent enough time crying about the situation with our endos - now
we can look back and laugh 'cuz what else can we do but rejoice that it is all in the past!
Hey everybody - I wasn't on here 7 yrs ago - those of you who were, please start digging for
those oldies! I think you'd get a kick out of revisting them as much as the "newbies" will.
Posted 11 December 2009 - 03:55 PM
Cool...! I forgot about them. No, I don't have anything saved since my computers crashed one too many times...!
Posted 11 December 2009 - 05:16 PM
Oh, Mon - You don't have a copy of the 12 Days of Graves' Christmas? That's a tradition around here. Puter Bob I and II have fried hard drives, so I know I don't have a copy either. Let's see -
I remember something about "Five (?) nights of sleep"?
"Four normal turds"?
Something about eyes (a shining?)
"and an endo who can treat me"
Was it "12 normal labs"?
Does any of that jar anything loose?
Posted 11 December 2009 - 07:49 PM
Maybe if we put our collective brains together we can remember.
I know that so far this is correct:
5 Nights of SLEEP,
4 Normal turds
and an Endo who can treat me.
I tried to make it rhyme a little with the original so turds was for birds. 2 was something from above I think. Crap, I think I am hypo...Surely Jody or someone saved this. Chris you have a great memory because all I could remember was 5 nights of sleep.
Oooo, was it 7 goiters shrinking?
Posted 11 December 2009 - 08:22 PM
I looked again in the old puter and couldn't find it. I did find this. I apologize if you've read it recently. It may be in the 101 thread, I can't remember but with so many new people I thought it was worth sharing again. I wrote it about 4 months into this journey and consolidated all of the most common crap we went through.
A Day in the Life of a Graves’ Patient
Have you ever wondered what it would be like to one day wake up in the body of someone else? Nothing would seem right, you would look at yourself throughout the day from afar thinking; who is this person and what has she done with the real me? That is what we Gravesian’s go through nearly everyday.
In the beginning, before meds have kicked in we get the lovely opportunity to explore life as a mental asylum escapee, possibly one who was locked up to begin with because we castrated an unsympathetic spouse in a moment of graves’ rage. I can hear the defense attorney now…”He deserved it, he ate the steak leftover in the refrigerator.”
From the time we wake up till we go to bed and even in our dreams, life as we previously knew it has ceased to exist. Join me in a journey through a typical day of someone suffering from active graves’ disease.
After staying up till 3:00am watching Nick at Night, and finally dropping off to sleep sometime around 4:00 you awake at 4:30 with a start. Drenched in sweat you swear someone must have turned up the heat again or had the audacity to close the window even though it is 28 degrees outside. You get up, check the thermostat, open the window a little wider, throw another blanket on your spouse, go to the bathroom and lie back down. By now your mind is racing faster than superman trying to stop an out of control freight train. OK, what can I do to relax and clear my mind? I have got to get some sleep! After covering 136 subjects from top to bottom including solving the national debt crisis, what you would do if there is another terrorist attack, planning out what you will eat as soon as you get up, analyzing your last doctor’s appointment including everything you could have and should have said and making a list of every thing your spouse ever did that annoyed you, you finally drop off to sleep about 5:45. The alarm sounds at 6:00 am.
After being unable to return to work the last 3 weeks, your weekday life has settled into a relentless routine. Eat, poop, eat, surf the net, eat, poop, eat, surf the net. Eating and planning your next meal has become your favorite past-time. A typical day’s food requirements are as follows: Breakfast: 1 bowl of oatmeal, 2 pieces of bacon, a cup of yogurt, 4 pieces of toast with butter and jelly, a veggie omelet and a piece of fruit. Mid morning snack: Peanut butter and jelly sandwich, potato chips and a high calorie energy bar. Late Morning snack: a bunch of grapes and some cheese. Lunch: You head out to Wendy’s for a loaded double cheese burger, order of chicken nuggets, biggie fries, bowl of chili and a frosty. Afternoon snack: egg salad sandwich and chips. Late afternoon snack: 3 pints of ice-cream. Dinner: 20oz steak, 2 baked potatoes, mixed veggies, salad, 6 dinner rolls and a whole pan of brownies for dessert. Bedtime snack: cereal and milk. Repeat bedtime snack every hour until you actually get to bed.
For the enlightened Graves’ sufferer, surfing the net has become a way to take control of this disease. Of course our new found obsessive habits spill over into our computer time. Most of the Gravesian’s that I know spend an average of 6-8 hours a day on the computer in various Gravesian pursuits. This includes research, book recommendations, reading medical journal articles, looking for a new doctor, and above all posting and reading on message boards. If you read and post on a message board, it is a universal requirement to check your messages atleast 32 times a day. It is the first thing you do when you get up and the last thing you do before bed. If you post a question in which you need immediate answers, checking for a response every 30 seconds is not uncommon. You live for your friends on-line. You laugh, pray and grieve with them. No one else understands you like your comrades in arms.
Sorting out the bulletin board that fits your needs can be tricky. As there are so many approaches to Graves’ disease management, so too are there many different types of bulletin boards. Some are just fun and games; friendly support to forget about your disease but not really learn anything about it. Others are heavily sensored and will delete any post not fitting their narrow sense of acceptable treatments faster than you can say pharmaceutical firm involvement. Other’s are more study oriented with lots of reading suggestions, links to other sites and studies and old fashioned anecdotal support. Whatever your choice, chances are a good part of your day not spent in the bathroom is spent on-line.
With so much energy to burn both physically and mentally yet so much fatigue both physically and mentally we are in a state of constant flux. We have so much energy that we can’t sit still without vibrating our foot to the frequency of a cat’s purr yet we don’t have the strength to walk to the mailbox and get the mail. People look at us and see a person with the energy of one who just finished their 5th café latte, but, who can’t or in their minds “won’t” get off the couch. Even though we have this compulsion to clean house, we soon give that up in favor of maybe being able to cook some dinner later if our muscles will cooperate. This does not stop the fact that the house being a mess is driving us crazy.
Since we are too out of breath to do anything physical and our heart rate is too high and sounds too loudly in our ears to let us take a nap, this leaves plenty of time left over for Graves’ rage. Part sleep deprivation, part out of control hormones and part pure frustration we tend to get a little testy at times. OK, a lot testy! We can go off on those that we care about in 3 seconds flat before we even realize what we have done. Every minor transgression is a major felony. The worse part about it is it’s nearly impossible to control and we feel lousy about it afterward. Intellectually we know that those around us are really trying to cope with this and we are hard to live with but emotionally we feel that no one understands us, no one cares how bad we feel and no one is trying to help us out around the house and at work while we struggle through it.
One of the worst things about being a Gravesian is not being able to get away from it. In the beginning, one or more of our symptoms will remain as a constant reminder in the forefront of our minds. We have to check our pulse 100 times a day. We have to plan what to eat carefully to get enough calories yet avoid possible triggers like iodine. If we are trying to type or write our hands are shaking, if we are trying to walk our legs are shaking. If we are trying to read or meditate our minds are wandering. We live with a 24 hour a day drum pounding in our ears called our heartbeat. We are hyper-sensitive to sounds and smells. EVERYTHING has the potential to irritate to us. Until the meds kick in, the only time we can get away from it is in our sleep and even then IF we sleep we often dream about it too.
The only thing worse about this disease than not being able to get away from it is the niggling fear that we are losing our minds. Brain-fog can be debilitating. It starts with walking to the kitchen to get a drink of water but forgetting what you wanted by the time you get there. Sometimes you even forget to forget what you wanted. These times you get something else from the kitchen only to remember an hour later why you went in there. The only thing you can read are children’s books and the only thing you can concentrate enough to follow on TV is some silly sit-com you have seen a dozen times. You can’t stop obsessing about this stupid disease even though you know the stress of worrying about it is making you worse. You can’t slow down your thoughts slow enough to understand them. You talk too fast and too loud and most of the time when you talk to yourself you answer.
Lest you think that this essay is all negative, there are some advantages to having a chronic illness if we choose to look for them. One of the first things that happens is it stops us in our tracks. We are given a beautiful opportunity to look within ourselves and examine the paths we have chosen and the lifestyle we are maintaining. We are given the “George Bailey” equivalent of a life improving opportunity.
Suddenly we find out who are real friends are. We are forced to learn to say no and not overextend ourselves. We learn to value ourselves, our feelings, our symptoms and our emotions. We can no longer afford to waste time in unfruitful endeavors. We can clearly see what is important to have in our life and what we can let go of. After struggling just to get showered and dressed, suddenly that hour we used to spend with a complicated hairstyle and make-up is not so important.
We learn how to stand up for ourselves and demand proper medical treatment. We teach our children to take care of their health while young and avoid those things in life that tend to make one sick. We have more compassion for others who are suffering particularly those who do not look sick. We tend to eat better and pray more. We are drawn closer to our source of creation or to whatever we feel sustains our lives. We become philosophical. We dream and we learn to live in such a way that best fullfills our life’s purpose. Some may need to change careers. Others remove themselves from toxic relationships. We learn to set boundaries with family members that tear us down rather than build us up. We learn to put ourselves first.
For me, having Graves’ disease has been a journey. Some days I curse this journey like there is no tomorrow. Other days I am thankful for the eye-opening kick in the butt. Today I am philosophical and whimsical. I started out wanting to write something funny or something that might make someone else feel they are not alone or that they can share with a loved one who doesn’t understand. Instead I ended up with a diatribe of grievances and opportunities. In any event, my goal today was to start writing and to share what I write.
Posted 12 December 2009 - 07:27 AM
I really hope everyone can get the words together for this - it sounds TOO good!!!!
I remember reading your narrative somewhere - maybe Thyroid 101 as you said.
Ya know, I never really had a hyPER period - yes, I had some early symptoms but they
were easily written off as perimenopause, allergies or stress.
Graves' rage kicked in about a week after my Dx.
How-eva, I have had the evolution in myself as you describe in your writing and I am
happy about that....you even use many of the same terms I do to describe it.
I don't know about you but, I hadn't engaged in any creative writing endeavors (OK
maybe a few letters for business - lol) since I was in school.
I found myself last month writing informational threads for another forum - and I found
myself writing them in a creative fashion.
Didn't know I had it in me
All the best,
Posted 13 December 2009 - 03:07 PM
Boy, Mon, your "day in the life" sure hits home, I'm sure, with most of us. Hard to believe you were at that point four months into this. You've sure come a long, long way.
Did you get ahold of Jody to see if she has a copy of your "12 Days"? If not, I tried to add some, but I don't think they were part of the original. I listed the "real" 12 days below, to help trigger any memories of your Graves' version. Seven goiters shrinking? Ummmm, how many goiters did you have? hahahaha! Seven nodules a-shrinking maybe. I do remember that in your original version, you had a few too many of something (cocktails, perhaps..?) Anyway, maybe we can improvise if Jody hasn't got a copy. Please feel free to change/throw out any of the suggestions. It's really difficult, which is why I hope we find your masterpiece from days of yore.
On the twelfth day of Christmas,
my true love sent to me
Twelve drummers drumming,
Eleven pipers piping,
Ten lords a-leaping,
Nine ladies dancing,
Eight maids a-milking,
Seven swans a-swimming,
Six geese a-laying,
Five golden rings,
Four calling birds,
Three French hens,
Two turtle doves,
And a partridge in a pear tree!
Twelve months of labs so stunning
Eleven foods not triggering
Ten pounds a-dropping
Six fits of rage subsiding
Five nights of sleep
Four normal turds
Three good moods
Two eyes so clear
And an endo who can treat me.
Posted 13 December 2009 - 04:59 PM
Monica they are a hoot would love to see the 12 days of Christmas complete, maybe we should all write some more Christmas jingles.
Posted 17 December 2009 - 04:43 AM
LOL I wish I could remember how that went! I do remember sitting here laughing MAO. It was soooooo true.
Really stinks that we lost it. Of course I loved the T-shirt slogans too. LOL I don't remember who came up with " Hell no We won't glow!"
But that one really stuck in my head!
Well Mon.....you may have to come up with a new 12 days.
A thought popped in to my head....yes it is scary but what can one do
Monica did you by chance post it anywhere else? If you did it could still be there!
Posted 17 December 2009 - 03:19 PM
No I didn't post it anywhere else but I am sure I saved it as a Word Document before I posted it on Mediboard and can't find it.
I forgot about all of our T-shirt slogans!! "Hell no, we won't glow" stands out to me as well as one of my favorites. I think Doris may have started that, I wonder if she might have it somewhere.
Posted 17 December 2009 - 08:25 PM
I think your 'Day in the Life...' should have it's own thread. It may get lost in here after the holidays.
I don't have your Christmas ditties but I do believe I have the T-shirt ones ;-)
Posted 18 December 2009 - 08:59 AM
Oooo,Ooooo post the T-shirt ditties!!! They were soooo funny.
I checked and Day in the Life is in the 101 thread safe and sound. Thanks.
Posted 18 December 2009 - 11:33 PM
I will have to find what folder it is in. I have been searching but I have folders in folders in folders that I didn't remember I had. Hard telling what I am going to find. It will probably be after Christmas before I have time to find it.
Posted 18 December 2009 - 11:45 PM
Good luck with these. I can't wait to see what is found in those folders.
Posted 20 December 2009 - 04:45 PM
I reamember the t shirt slogan hell now we woun't glow.
I loved that one and I wish I was one of the ones not glowing LOL!!
I remember something said about endows to, but I can't remember it.
Keep up the funny stuff LOL!!!