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.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I went to the web site and wasn't functioning well enough to figure things out this morning. I will go back later.
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.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
My friend nicknamed my illness two years ago when I got diagnosed.
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.
Posts: 2098 | From San Diego, CA, USA | Registered: Sep 2002
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
quote:Originally posted by kam: "Dreaded Leaded Duck Disease"
Ahh, then this was you at Dr. H's office the other day:
Posts: 2098 | From San Diego, CA, USA | Registered: Sep 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Who me?
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..
MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Before I knew what it was I called it (PICK A JOINT DISEASE),because it just picked a joint to turn arthritic, any joint any time. MADDOG
Posts: 4084 | From Ohio | Registered: Oct 2000
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
OK Tabby. Where do I get the Duck Doc?
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.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
OK, I KNEW Lymies could come up with some good ones! Let's bombard her site with entries. tell her yopu found out about it on Lymenet.
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?"
posted
Our diseases should be renamed DIBD (Diseases Ignored By Ducks). Or ITDD (Invisible to Ducks Disease). DLTTPYH (Ducs Love Testing To Prove You're Healthy). ADSCL (All Ducs Should Catch Lyme) Unforunatekt 6 doctors have died from Lyme and associated duseases.
Posts: 77 | Registered: Aug 2004
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Names of my illness:
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?
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
nofun
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
The way I acted some times, you could have said I had whine disease and babyosis.
Posts: 228 | From Wassaic NY. USA | Registered: Aug 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
HO HO HO!
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!
------------------ If you get the choice to sit it out or dance...
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Do you know the poem that starts
"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.
****
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.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Has anybody actually eneterd the contest? We've got some good ones here. But they might have to come with a Lyme interpretation code for the public. Posts: 2142 | From California | Registered: Nov 2003
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cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
Cooties.....of course! cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I entered RS and received a reply. I can't recall exactly what she said. I think it was along the lines of still working on the web site at this time.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Hey y'all I'm a newbie to all this and think I'm luckier than a lot of ya that I've read. I'd have to call mine LuToHADoThaList (Lucky to have a doc that listened), and she was persistant as well, even though she didn't really know about LD. She finally just did what she and I call a 'fishing expedition' on blood tests to find out what was going on. Not happy with the diagnosis, but am glad she didn't give up!!! OH and thanx for the laughs as y'all named yours. I am a firm believer that laughter can help me cope with anything, even if it isn't a cure. Ethel
Posts: 10 | From Humboldt, TN USA | Registered: Dec 2004
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Ethel!
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
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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posted
Hey Linda Humboldt is in Mid-west TN - about 12 miles north of Jackson TN (and about 80 miles ne of Memphis). I talked to a cousin of my husband's yesterday after being here, who also has LD, and found out that we have a specialist that treats LD right here locally in Jackson TN, so if (and from what I've seen here and what she told me I most probably will) I need to see one I won't have far to go. Sorry to hear that your children have this too. Just from what I have already experienced this looks to be a long road. It is good though to know I'm not alone and can share with others that understand. Ethel
Posts: 10 | From Humboldt, TN USA | Registered: Dec 2004
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