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Sallie Q
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| Joined: | Fri Aug 28th, 2009 |
| Location: | Australia |
| Posts: | 76 |
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Posted: Sat Aug 29th, 2009 03:41 |
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frankly after 9 months or so, the sludge I am mobilising now is messing with my head
how do the people around me cope? Dunno, but I think my episodes are briefer and not so intense as they were pre-MP. After all, the people around me have also had nine months or so to learn to cope. 
how do I cope? reflex of the week seems to be the refuge I took in grade 7 at church, rearranging the hymns, or for something nearly as old.......
covered up Rose, I'm wearing cloaks to my toes
I never wear a thing that can expose
even Jake the plumber he's the man I adore
has gone and married someone else, just walked out my door
wish I could be like Jake and his mate Elsie
but I'll just wait to get my sweet revenge
when they're old and crippled from their knees and their scars
I'll be dancing in the street with their MP'd papas
'everyone' knows, you 'just don't' dress like that Rose
from MP avenue.
____________________
MP Sept'08 | Sjogrens; b.cancer '90; childhood postviral fatigue (CFS): 25D=7ng/ml@Jly'10
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Sallie Q
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| Joined: | Fri Aug 28th, 2009 |
| Location: | Australia |
| Posts: | 76 |
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Posted: Thu Sep 17th, 2009 06:37 |
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no bytes?
Seanlane ??
I do see evidence that some people think (if that's what I can call it) like me
well, here I go again
I know a dark secluded place
A place where no-one knows your face
A looking-glass, to check your dress
It's called Hernando's Hideaway
Ole
You wrap well up and use suncream
your neighbors think you are a scream
and strangers think they're in a dream
when you approach that Hideaway
Ole
you wear 3 layers of close weaved gear
islam-o-phobes panic in fear
the others think "are Aliens here?"
when you exit that Hideaway
Ole
____________________
MP Sept'08 | Sjogrens; b.cancer '90; childhood postviral fatigue (CFS): 25D=7ng/ml@Jly'10
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Joyful
Foundation Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | USA |
| Posts: | 797 |
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Posted: Thu Sep 17th, 2009 07:09 |
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bravo!!! sallie Q, our very own bard. 
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Search the MP Knowledge Base __ Be Kind, We Are All Fragile
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Sep 17th, 2009 09:17 |
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Although I have enjoyed 'These Dreams' by 'Heart' literally hundreds of times over the past several decades, while playing a concert performance of it on the trip across to Singapore I heard this thought clearly for the first time:"In a wood full of Princes, freedom is a kiss.
But the Prince hides his face, from dreams in the mist."
I thought I would share it. For me it concisely expresses that the answer is all around us, when we go looking for it...
http://www.imeem.com/people/O5b3Fo/music/Q-amFacj/heart-these-dreams/
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Dody
Support Team
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Posted: Tue Dec 1st, 2009 03:04 |
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Sallie,
I LOVE your version of Hernando's Hideaway!
Dody
____________________
Lyme Arrhythmia Vertigo Meningitis Bipolar lithium tylenol cover up outside mod low lux inside ModPh2Jul07 Ph2Apr08 Ph3Feb09 D25 Oct09 7 Mar10 4
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Sallie Q
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| Joined: | Fri Aug 28th, 2009 |
| Location: | Australia |
| Posts: | 76 |
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Posted: Sat Jan 23rd, 2010 00:46 |
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Dody
I prefer my take on 'Secondhand Rose'
PS having left noble reader to puzzle out which tune I am mauling, these songs are so old even I can not always remember the Original Title, even when I easily get the tune into my head and many of the proper words
however you've sent me back to the draft of (& I'm still not happy with) the following
Some say that Koch's old theory
is the only one to be
costly new made drugs to stay your pain
and a whale of omega 3
Refrain
oh when the sun, oh when the sun, oh when the sun begins to shine
I throw on my cape and leather gloves
my NoIRs and zinc so fine
Some say their life long treatments
are the only ones we need
say be grateful that new chemist tricks
are bankrolled by human greed
Refrain
oh when the sun, oh when the sun, oh when the sun begins to shine
I throw on my cape and leather gloves
my NoIRs and zinc so fine
We are travelling in the footsteps
of those who've gone before
our immunity will be revived
halt and lame will dance once more
Refrain
oh when the sun, oh when the sun, oh when the sun begins to shine
I throw on my cape and leather gloves
my NoIRs and zinc so fine
____________________
MP Sept'08 | Sjogrens; b.cancer '90; childhood postviral fatigue (CFS): 25D=7ng/ml@Jly'10
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Sallie Q
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| Joined: | Fri Aug 28th, 2009 |
| Location: | Australia |
| Posts: | 76 |
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Posted: Thu Apr 8th, 2010 02:03 |
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down away where the knights are gay and the ladies are a little unusual too
I took a trip, I got off my ship, and in Caribbean sun for hours I lay
but i'm sad to say, I'm on my way
to cureMy ills that sun did make
It may take awhile, but see me smile
as the other boats rock in my wake
to journey in time I now embark
with amber eyes and heavy gear
It will be years before my skin appears
in publico twixt dawn and dark
Happy to say I'm not so grey
tho up and down from day to day
whenever symptoms disappear
Let us combine to sing and cheer
____________________
MP Sept'08 | Sjogrens; b.cancer '90; childhood postviral fatigue (CFS): 25D=7ng/ml@Jly'10
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Sallie Q
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| Joined: | Fri Aug 28th, 2009 |
| Location: | Australia |
| Posts: | 76 |
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Posted: Fri Apr 30th, 2010 04:44 |
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To parents and friends of small children
who have watched/listened to 'There's a bear in there' the theme of Play School (Australia)
There’s a glare out there
Here’s where we get well
There are people with herx
And stories to tell
Open wide
Come inside
MP School
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MP Sept'08 | Sjogrens; b.cancer '90; childhood postviral fatigue (CFS): 25D=7ng/ml@Jly'10
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Aunt Diana
Support Team
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Posted: Sun May 2nd, 2010 05:50 |
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Sallie,
You are definitely invited to my next party....I love your songs
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, , benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux
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Dody
Support Team
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Posted: Sun May 2nd, 2010 19:43 |
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| I do too. Keep sharing em, please!
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Lyme Arrhythmia Vertigo Meningitis Bipolar lithium tylenol cover up outside mod low lux inside ModPh2Jul07 Ph2Apr08 Ph3Feb09 D25 Oct09 7 Mar10 4
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Sallie Q
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| Joined: | Fri Aug 28th, 2009 |
| Location: | Australia |
| Posts: | 76 |
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Posted: Tue May 25th, 2010 11:40 |
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Strangers to MP, immune-poor people,
we were strangers to MP and such sore people
up to that moment when we said our first uh-oh
little did we know
it would take 4 years or more
but showed our specialists the door...
Ever since that test, we've been together
through our days of rest
or stormy weather
It turned out to be
the cure for we, MP
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MP Sept'08 | Sjogrens; b.cancer '90; childhood postviral fatigue (CFS): 25D=7ng/ml@Jly'10
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Pipistrelle
Member
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Posted: Sat May 29th, 2010 21:53 |
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I Will Survive
First I was afraid
I was petrified
Kept thinking I could never live
and then hit my MP stride
But I spent so many nights
learning right from wrong
I grew strong
I learned how to carry on
let's send the bugs
to outer space
Low light and low D
To get them out of place
The VDR gets unlocked,
Olmesartan is the key
If I had known for just one second
The joys of endless high IP....
Bugs go now, walk out the door
just turn around now
'cause you're not welcome anymore
weren't you the ones who tried to hurt me with goodbye
you think I'd crumble
you think I'd lay down and die
Oh no, not I
I will survive
as long as i know how to stay alive
on the MP I know I will survive
I've got all my life to live
I've got all my love to give
and I'll survive
I will survive
It took all the strength I had
not to fall apart
kept trying hard to mend
the pieces of my broken herxing heart
and I spent oh so many nights
just feeling sorry for myself
I used to cry
Now I hold my head up high
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Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp work
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eClaire
Member
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Sat Jun 5th, 2010 14:16 |
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I somehow lost the "watch topic" to this thread. Thanks you guys for the uplift!
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Sallie Q
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| Joined: | Fri Aug 28th, 2009 |
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Posted: Fri Jun 11th, 2010 04:49 |
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& now for something completely different, alas
Mary had a little cough
and then she had another
Her doctor said take vitamins
and then said take a _ _ _ _ _
He followed her to school one day
which was against the rule
It made the children laugh and say
that doctor's such a fool
Mary found another school which taught computer, so
now everywhere that Mary went an Apple-Mac did go
She found the MP site one day
and now she's up at college
with plans to take on medicine
she's full of MP knowlege
____________________
MP Sept'08 | Sjogrens; b.cancer '90; childhood postviral fatigue (CFS): 25D=7ng/ml@Jly'10
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Dody
Support Team
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Posted: Sun Aug 8th, 2010 18:03 |
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| For those familiar with the TV commercial "It's gon-na be a Sub-aru summer," here's the variant that keeps popping up at our house: "It's anoth-er Marshall Prot-ocol summer." (For those unfamiliar with the commercial, I can't help you...)
____________________
Lyme Arrhythmia Vertigo Meningitis Bipolar lithium tylenol cover up outside mod low lux inside ModPh2Jul07 Ph2Apr08 Ph3Feb09 D25 Oct09 7 Mar10 4
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Pipistrelle
Member
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Posted: Mon Aug 9th, 2010 08:57 |
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and in similar vein, Paul Simon's "Still crazy after all these years", often turns up in my head on high IP days as "Still herxing after all these years"....
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Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp work
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Sallie Q
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| Joined: | Fri Aug 28th, 2009 |
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| Posts: | 76 |
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Posted: Thu Aug 19th, 2010 06:33 |
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The grand old duke of York
He had some bad IPs
He sent his blood test to the lab
But they forgot to freeze
Now when he’s up he’s up
And when he’s down he’s.. [pleez]
And when he’s only half way up
Has likely OCDs
His rheumatiz is bad
His lungs is even worse
And if he wos a woman
He’d be cursing ’bout ‘the curse’
His son has gone awol
His daughter’s gone to Spain
I could go on and on and on
But I just quit [again]
____________________
MP Sept'08 | Sjogrens; b.cancer '90; childhood postviral fatigue (CFS): 25D=7ng/ml@Jly'10
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Aunt Diana
Support Team
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Posted: Tue Aug 24th, 2010 04:12 |
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OMg....I haven't looked at this site for quite a while but this topic is fascinating to me.
I remember that in early days of Lyme I would count (to myself) but was always counting. I still catch myself doing this....Then a song would come into my head...I guess our brains are being stimulated by the bugs.
I was brought up in an opera loving household. and lately I find myself singing complete scenes from Rigoletto. I can think of worse things because I love the music. But, now that I've returned home from a vacation where, for some reason this operatic phase started...I find I have no copy of Rigoletto in the house and it is driving me insane... because I don't know the words that I am craving to be singing.
I'm glad that this thread has brought this into my consciousness. I will be ordering from Amazon as soon as I've stopped this rant.
It also makes me wonder at the gift of music writing ...I wonder is this the way it works for gifted people. Do they hear the tune in their head and then write it down?
Our brains are fascinating things...that's for sure.
I'm sure there are many diffenent answers.
AMAZON! here I comeLast edited on Tue Aug 24th, 2010 04:14 by Aunt Diana
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, , benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux
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Sallie Q
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| Joined: | Fri Aug 28th, 2009 |
| Location: | Australia |
| Posts: | 76 |
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Posted: Mon Sep 27th, 2010 02:15 |
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Roaming in the gloaming, some cats dropped bugs about
Little mice picked up those bugs and now take risks all out
All those toxoplasmic mice
Now think pussycats are nice
Shows their lives are threatened by those microbes
Roaming in the gloaming you’re angry or you’re scared
Roaming in the gloaming, for this you weren’t prepared
With depression you are blue
It’s not easy to go through
Are your thoughts controlled by all your microbes?
Roaming in the gloaming without my coat or hat
Roaming in the gloaming, I now know where I’m at
Single treatment’s not my answer
To rheumatiz or cancer
Oh it’s lovely working on your microbes
Roaming in the gloaming with my amber glasses by
ready to put on again if car headlights go by
Single treatments aren’t the thing
That makes me want to sing
Oh it’s lovely working on your microbes
Roaming in the gloaming with your Benicar at hand
Roaming in the gloaming, pulsed minocycline planned
Single treatments are such rot
I have mentioned it a lot
Oh it’s lovely working on your microbes
Roaming in the gloaming that's how I get about
Roaming in the gloaming, getting better, there's no doubt
When the summer sun is hot
We’re avoiding it a lot
Oh it’s lovely working on your microbes.
____________________
MP Sept'08 | Sjogrens; b.cancer '90; childhood postviral fatigue (CFS): 25D=7ng/ml@Jly'10
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Sallie Q
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| Joined: | Fri Aug 28th, 2009 |
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Posted: Thu Dec 23rd, 2010 05:44 |
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an Australian Christmas carol for 2010
Our dreaming is a wet Christmas
while friends across the seas get snows
all our farms are flooded
and root crops dudded
as NY fights for rights of fire heroes
Some dreaming of the Child's message:
Become the best that you can be
widow's mite & wealth's yet
may help Africa reset
Dump your fears and simply follow Me
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MP Sept'08 | Sjogrens; b.cancer '90; childhood postviral fatigue (CFS): 25D=7ng/ml@Jly'10
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