Learning to live with chronic illness or limitations is not easy. (Some would even say it isn't for wimps!) Having chronic pain is not something we ask to have happen in our lives. Yet, somehow we need to avoid the extremes of the illness becoming who we are and ignoring it completely.
This is a challenging process that usually takes time and changes in lifestyle. One way to make room for your illness without letting it take over, is to give it a nickname. Having a nickname for the illness creates a way to talk about It, so that it is clear that you are not the illness.
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Sonoma County Lyme Support
[email protected]
[This message has been edited by riversinger (edited 18 December 2004).]
I wanted to add my nickname for this condition. It was given to me by one of the other teachers when I was describing it to her and how the medical field was having a rough time figuring out what I had.
She called it the "Dreaded Leaded Duck Disease"
This really fits especially since I came to lymenet and found that non co operating doctor's are called ducks.
It also fits because I have such great difficulty with mobility each day...as if I am filled with lead.
When trying to explain via e-mail how to pronouce "spirochetes" I wrote that is rhymes with parakeets.
Thus, when she writes, she asks how my parakeets are doing.
quote:
Originally posted by kam:
"Dreaded Leaded Duck Disease"
Ahh, then this was you at Dr. H's office the other day:
Name my disease? Sorry.. THEY already did.
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The local doctors here diagnosed me with B.S., which stands for "Bumsteere Syndrome".
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But they recently added on another diagnosis that can be fatal:
C.P.D.
(Chronic Pataki Disease)
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And years ago, the big University said I had Dattwyleritis.
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But Hopkins said no.. it's definately Wormserosis.
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Then the Mayo Clinic said.. absolutely NOT!
Tincup has Segullmylitis... for which there is no cure.
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They ALL suggested I do the following and I would recover.
1. Admit there IS no such thing as Lyme disease.
2. Take anti-depressants.
3. Get more exercise.
4. And if I am having a really bad time after suffering for 5 or more years..
I get STEROIDS!
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But.. they all agreed to chip in and buy me a tombstone.. on which is engraved..
I TOLD YOU I WAS SICK YOU BUTT HEADS
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I tried to copy and paste it but it didn't work.
TC...
Tabby...much better explanation. I need to tell my mom about the parakeets.
I overheard her talking on the phone to a friend and calling them spearo chitts.
Maddog... ..darn I can't spell the sound I am trying to make when you hurt here and there and every where.
Tincup, I think you win on volume, wit, and comprehensiveness!
Do you also see the request for one liners in response to the question, "How ARE you today?"
That's what I want some good ones to answer.
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Sonoma County Lyme Support
[email protected]
Biker borrelia
train wreck syndrome
How are you today:
Come back the second tuesday of next week and ask again.
About as good as tomorrow.
It's today already?
Whine disease and babyosis... HA! Love it!
Dreaded Leaded Duck Disease- Let's get the lead out!
parakeets- Fly away parakeets! PLEASE!!!
PICK A JOINT - HA! Maddog.. I have done THAT before... but normally it was on a hot town Saturday night! ho ho ho
spearo chitts- hehehe... I'd like to SPEAR-O them! The nasty little chitts!
Hey Dr. Ted... WONDERFUL to see you! Diseases Ignored By Ducks
Invisible to Ducks Disease
Ducs Love Testing To Prove You're Healthy
All Ducs Should Catch Lyme
I have to agreeeeee, Doc!!! hehehe
Biker borrelia and train wreck syndrome- REALLY cute! I DO feel like a train wreck sometimes!
But Groovy says it all... NOFUN! Absolutely RIGHT!
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If you get the choice to sit it out or dance...
"When I am an old lady,
I shall wear purple,
With a red hat that doesn't match."
I think I'll call this the Red Hat Disease. Because I sometimes feel like inside, my muscles and joints and everything else is that of an old lady. I look at my hands and imagine they must be a gnarled, greyish purple inside.
But, on the outside, I am a red hat that doesn't match the inside. And I'm going to stay a red hat, no matter what this disease does on the inside.
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Or maybe I'll call it Gretchen. I was at Gretchen's house when the rash started.
Or I can call it Devon. Because Devon was the one who made fun of the rash on my neck calling it a hickey.
Sapphire
We are on the same page of the same book. Where is Hombalt? I'm in East tennessee. I just got here in December too! I wasn't interested in learning too much when it was just me and my husband--figured he could do all the leg work--but now that my babies (3 and 7) have it--I got to learn, learn, learn!
I'm wondering if I should see another doctor but can't afford to go north. My two children where just diagnosed with lyme.
I think I have had this for 30 years--but it wasn't until I started having babies that my body fell apart.
Well I am saddened to see another Volunteer--but am glad you got a diagnosis.
God bless,
linda