The name alone raised my hackles. I dislike intensely calling women girls --
especially in the media. Thank God newscasters haven't said that as most of
the US Gold Medals thus far are from women athletes.
And when I saw the cast, sigh, overly made up, bloom off the rose/hard, and
crossed
).
Seeing Aries leap hurdles like they weren't there and watching Curiosity touch
down again and again
(O Ray Bradbury!!! how i miss you!)
Thanks for the purple-- my favorite color and the color of my Pilot Precise V5
pens.
Hugs,
Akua
On Aug 9, 2012, at 7:41 AM, Dalton Garis wrote:
You really hit
, belittles and diminishes.
Girlification doesn't make decision makers take your needs or your situation
seriously.
Akua
On Aug 9, 2012, at 9:50 AM, Mary Anne Egan wrote:
You raise some valid pointsmy daughter is ten she has been paralyzed since
she was an infant. We met the youngest member
I'm a woman in a wheelchair, now in yet another
unliberated minority and I have to attend to how my group is depicted.
Akua
A
not the only
disabled person here without paratransit -- it doesn't exist, so it doesn't
exist for more than just me.
But to insult me for my unafraid plain talk, to BLAME me for the ill treatment
I've reported is to blame the victim.
That's LOW and limited.
AKUA
On Aug 9, 2012, at 2:52 PM
http://www.spinalcord.org/resource-center/askus/index.php?pg=kb.pageid=1412
http://www.spinalcord.org/resource-center/askus/index.php?pg=kb.pageid=1728
Akua
Jim:
I miss the water terribly!
I swam and kayaked before T/M, so I share your desire to be in our first
medium, again.
You're blessed to have folks to work it out with you!
I look forward to hearing of your return to water.
Akua
I love my Quickie 2.
foam insert tires so i don't have to
worry about inflation
I use a Jay ez -- gel/foam cushion in it.
I remember trying a heavy medium and light chairs
and being told the differences when i was in the hospital….
the hospital chairs were just awful…..
It was fitted for me ---
Just saw a TV story on it the day before yesterday
http://abcnews.go.com/GMA/video/provigil-brian-drug-awake-focused-24-hours-16810963
I'm interested--- this heat has keep me exhausted!
YAY! I Treasure THESE STORIES OF HOPE AND RECOVERY.
Wonderful news, Cheryl!
and in the world
to come. — Baha-u-llah
These are such beautiful, inspiring words!
I am so glad you've devised a way to get assistance. I pray that a solution
arrives.
Joy in the making,
Akua
for that story! I cherish it and the possibility if offers.
Hope always,
Akua
From: jeff bernier jeffsmokeea...@yahoo.com
Subject: [TMIC] successfull surgery
Date: June 27, 2012 6:37:16 PM EDT
To: tmic-list@eskimo.com, msersl...@yahoogroups.com
howdy!
havnt been on in ages,hope everyone
Getting closer and closer to our needs...
Today we are extremely pleased to announce that the Myelin Repair Foundation
has achieved its goal of a myelin repair Phase 1 clinical trial for multiple
sclerosis three years earlier than expected.
This achievement illustrates the effectiveness
HEALING THERAPIES NEWSLETTER
This is the 60th newsletter© associated with www.healingtherapies.info, the
purpose of which is to expand the healing spectrum of people with physical
disabilities, especially spinal cord dysfunction.
This issue targets
a solution. My one pill solution for pain is naltrexone and
other than that -- sleep.
that all be well,
Akua
.
I appreciate your calming tone. Thank you! I'll just cry tonight
and be better in the morning.
That all be well,
Akua
On Apr 2, 2012, at 12:28 PM, Kevin Wolfthal wrote:
Akua,
I live in a big city. Even though there are some organizations that help the
disabled, it seems
the big push from
Pat Cooley wrote:
I completely agree. Lack of money and the fact that you are dependent
on other people is what makes it impossible to make changes in your
life.
Thanks Patti!
Glad you were able to make the change.
Thanks Kevin,
I guess my mistake is the assumption that being disabled made folks more
sensitive and more informed.
Akua
On Apr 1, 2012, at 7:15 AM, kevin weilacher wrote:
Akua,
If those resources don't exist, then a person is unfortunately confined to
trying to make the best of what
for the affirmation!
Akua
On Apr 1, 2012, at 6:44 AM, Dalton Garis wrote:
There is a vast, vast difference living in the well-off countryside, the
bucolic countryside, of beautiful sunsets and fond remembrances …
and living in the poor countryside, stuck in a country where white bread
wrappers
What hurts, Bernie, is the Victim-blaming implicit in the question why do you
stay
and whole passive agressive if you don't like it just go somewhere else
it pushes a button in me, of other causes and other efforts
where, when one protests ill treatment, one is told
to pack up and go
And
Last month was national crochet month and I exhausted myself making something
every day.
This components will go into two new artworks -- a trytich called Love Is and
another piece
called Priestess.
This month is National Poetry Month and I'm following a blog that offers daily
prompts.
i'm dumbstruck at the question why do I stay coming from this group.
I am paralyzed -- i would think folks here at least might understand what
having a disability thrust on them late
in life would mean.
Or maybe i just didn't know that there were services that buy one's home, pack
one up, and
From: Dalton Garis malugss...@gmail.com
Subject: Re: [TMIC] No mail
Date: March 29, 2012 12:28:39 AM EDT
To: Janice Nichols jan...@centurytel.net, James Berg
molokai...@gmail.com, transverse myelitis tmic-list@eskimo.com
Like, for instance,
Where Akua lives?
D.
I'm S
Employment -- I was fired because of my disability….I was doing marketing and
development.
Then I taught, did readings and workshops but since returning home, I can do
none of those things
because there is no transportation. So I've turned to designing. I posted on
Betterfly and
now have a
on the way to the zoo, or taking my mother to the Russian Tea Room.
So glad to hear form you! Ad you made me laugh with that evocation of upstate!
Wishing you healing,
Akua
Hi Pam,
I used to work in hot and warm glass ( sand casting and kiln forming) and
paper.
I'm a hand papermaker. I also work in fiber, mostly crochet as Without the use
of my legs, I can't operate my floor loom.
If you google me, I'm sure some images will pop up.
I'm also an award-winning
of this
condition.
Just a few thoughts…. ™ left me paralyzed and in pain, BUT my pain once an 8 is
now about a 3 and i only take one
drug for ™ -- low dose naltrexone.
That all be well,
Akua
Love this , John! Fuel for the little grey cells, grist for the mind mill!
Thank you! I never knew any of this, and I deeply appreciate learning new
things.
Akua
Risks
During a percutaneous discectomy, the surgeon has no way of seeing
the herniated disc or the compressed nerve root.
The surgery might not remove the herniated disc. So there is no
guarantee that pressure on the nerve will improve.
There are risks with anesthesia.
What To Think About
, there is
no paratransit, no delivery services and no sweetness or assistance
here.
Akua
--
I can only wear one kind of pants, all cotton knit, so of course I
have many colors of same pants. I feel kind of funny wearing the
same pants to work all the time. The winters are hell as these
pants are not thick or warm.
As a New Yorker, my favorite color for work is black, so that
Any advice regarding these gadgets.
Thanks!
i had one until i fell getting off the toilet and dragged my body
into the bedroom, as I can't crawl, got dressed, pulling clothes off
the bed and rolling on the floor and use my reacher to grab my cell
phone
and then the fire department came and
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Dear Janet,
Sorry to read of the increased discomfort. The term and the
condition are new to me
and as you've doubtless done an internet search, there's nothing I could add.
Sending my well wishes, for comfort and healing.
Akua
--
had one Dr who told me that she never had much time for extra study
and for me to search and whatever I found that we had not tried that
she would support me in it.
well she had opportunity in another place that was better for her so
she moved on.
This just happened to me! My primary
the subject of those emails.
Akua
--
.
Wishing us all strength and healing,
Akua
--
Meditation:
Try it again. Don't concentrate. Just breathe deeply, slowly in as
quiet a place as you can find.
Deep breathing has helped me manage pain.
Akua who is paralyzed and in constant pain
i reckon i traded meditation for medication,, sort of kills dedication
and quickens
Another option bits the dust.
http://topnews.us/content/244764-lack-funds-halting-embryonic-stem-cells-trail
Now on 10/20 they announced progress in the trials
This is the stuff that worked on rats
GRNOPC1 contains hESC-derived oligodendrocyte progenitor cells that
have demonstrated
ROFLOL!!!
if only i were the rat they say i am
From: Akua a...@artfarm.com
To: tmic-list@eskimo.com
Sent: Monday, November 28, 2011 4:56 PM
Subject: [TMIC] Geron Halts Trial Because of No Money
Another option bits the dust.
http://topnews.us/content/244764-lack-funds-halting-embryonic
cite -- my shoulders are getting worn and
they hurt from wheeling and transferring myself around.
I named the specialists/experts who have had to write letters and
fill out the forms to move my request along.
Best to you and yours,
Akua
--
Bernie -- don't know if this will help but I found a trapeze for
$123
http://www.medicalsupplydepot.com/Assistive-Furniture_3/Bed-Accessories_2/Invacare-Corporation-Fixed-Offset-Trapeze-Bar-SP.html
Wishing us all healing,
Akua
--
My Bed was stuck on high.
it was the wee hours of the morning and i couldn't get in.
I spent an hour or so, looking for the manual crank,
moving the piles of tools and project bags around my bed.
Then the dressers and at long last, I found the crank, but weary
from all the moving and
So glad you weathered this storm!
And love the blessing in disguise
All praises!
Akua
Hi Everyone,
I just got home a few minutes ago. Boy it's great to be here! Had
to throw out some food,but all in all not too much loss. Mitzi is
walking around meowing and sniffing everything
I just sent Ella a Happy Birthday note and got a spam reply.
She must have a new address or her email has been hacked.
Akua
--
is the Akua Bird Mask and the second, the Phoenix Bird
Mask. I was saddened to find that I am again at the edge of
viability in terms of technology.
I had figured out several work-arounds to create a 728 by 90 pixel ad for the
the first mask pattern. The sun still shone, at the beginning
was glad to see the articlebut kind of bummed that they chose
to do the article the way they did...
My sentiments exactly!
And thanks Kevin for your efforts on our behalf!
And on that subject, a shoutout to Jim -- for making such connections possible.
--
Neurology Now ( free sub) has an article on TM in its Oct/Nov 2011
issue focusing on Allen Rucker.
Kevin Sorbo is on the cover.
I was glad to see the coverage!
I was surprised at the picture of Rucker. I've told my friends who
send me vids about a tell , that I use to assess whether the
.
Akua
Wells Fargo took care of the compensation where I worked and they
told me i could have gotten it from a bug bite.
I should have gotten a lawyer but in our shape especially in the
first months who is able mentally to fight bureaucratic systems.
idiopathic = scape goat
From
, 2011 at 11:21 PM, Akua
mailto:a...@artfarm.coma...@artfarm.com wrote:
after they asked me about the flu shot, they asked me about bug bites.
I did a lot of tromping around, gathering weeds for papermaking and gardening
before TM struck,
A Lyme sufferer told me theat most Lyme goes undiagnosed
regardless of what the doctors say.
I had the EXACT same experience!
Akua
--
, expectations that
you can no longer meet. So there is a daily psychological pain
in disappointing others -- that's the only thing my aloneness spares me.
I commend you for caring and reaching out on his behalf.
May we all heal and be well.
Akua
--
I've written the governor before and after he was elected, as well as
every relevant legislator from
congress to county.
I've shared here the stories of asking scout troops for someone to
shovel my sidewalks of snow-- for pay! and not getting any
response.
I also reported previously
roll over it.-- but dusting
and high surfaces -- that's where i need help.
No kidding! Akua; if I lived close by I would vacuum your floor. I
can do that now. Pam
--
So very sorry to read this!
My deepest condolences.
May you be granted strength and comfort in this
difficult time.
Akua
MY SON CHRIS DIED LAST NIGHT. HE WAS DIABETIC AND DID NOT TAKE CARE
OF HIMSELF. HE WAS 36 YEARS OLD. I DON'T KNOW HOW I WILL BE ABLE
TO BURY HIM. THE LORD WILL MAKE
When I was in Rochester, I lived in a HUD apt building. (disabled 18+
or 55 +) Tehy did a rate adjustment based on my income -- I paid
more. So perhaps such an apartment is available to you.
One of the administrators told me I could get an income adjustment
/assessment based on medical
, to the tune of $75/hour and they were
able to continue with this subtle
fraud until I refused to have the nurse come harass me again. But
that's 3 years of unnecessary
nonservice and easy money for that firm.
It's a dirty shame. I'm glad i didn't cave on this.
Akua
--
.
Akua
Hi,
I've had tm since 8/13/95 and have tight banding all the time. It
does get even tighter during stressful times,and I almost can't
breathe. It's been awful the past few months. It's the worst part of
tm for me,along with the nerve pain.
Cheryl in gloomy Easthampton,MA.
--
It's true when life gives us a hundred reasons to cry, we have to
show life that we have a thousand reasons to smile
Thank you I love this!
It's true when life gives us a hundred reasons to cry, we have to
show life that we have a thousand reasons to smile. Sometimes God
pushes us to our
HOORAAYYY!
Hi Everyone,
Got my blood work results today. My CA2729 (a cancer marker)
has gone from 112 down to 53.8 . The letrozole seems to be working!
Thank you for the prayers,I really appreciate it.
Cheryl
--
this is home in many ways. I lost a cousin I never
met in the Towers. My father, now deceased, told us about him. My
bff lives on park row, a couple of blocks away. My brother in law, a
NYS trooper, worked on rescue at ground zero.
Akua
--
I didn't think it was quiet -- one hunk of the America is burning.
My region is underwater.
It's been a time of external trial and terror here.
After the tornado, last week , we were frightened by a mountain lion.
It was where i used to walk, to go get plants for papermaking.
I learned that
HEALING THERAPIES NEWSLETTER
This is the 56th newsletter© (~9,000+
registrants) associated with
http://www.healingtherapies.info/www.healingtherapies.info,
the purpose of which is to expand the healing
spectrum of people with physical disabilities,
Just saw a really neat article on a friend's Facebook: Is Living
With Illness Choosing to Give In?
http://invisibleillnessweek.com/2011/09/06/is-living-with-illness-choosing-to-give-in/http://invisibleillnessweek.com/2011/09/06/is-living-with-illness-choosing-to-give-in/
It's not directly TM
Now I understand the old expression of the curse of may you have
an interesting life..
John, you make me smile!
I'm using too much pain to explain and wonder'/full -- Love IT!
Thanks!
Akua
--
Glad you said it, John!
I've had the same question!
Each year i search for someone near me--- not that i wish this on
anyone ever..
it is quite odd when you look at the size of the directory we get
compaired to the few people we have met in these groups.
Im sure some dont know and
all goes well. There has never ever
been an evacuation there before.
That all be well.
Akua
--
The inverse or obverse of the whole expectation thing is the pain of
not getting credit.
Like when the home health care agency lady insulted me when I
complained about
the unannounced unavailability of an aide to go shopping. She said
more or lessyou need to take responsibility for
The wonderful physiatrist who has ordered tests that my GP probably
should have but didn't bother to,
heard my concern about my weight gain, and reflected on my anemia.
Knowing that I don't eat the standard schlock ( no land animals, no
sugar, no white bread, for 40 years) and that
I'm lactose
A friend explained that the anger is the body's way of trying to get
energy when everything is causing lack of energy due to pain,
fatigue, etc.
I had never heard that before. Thank you, Roger!
I think anger is okay, it's all about how you use it.
Akua
--
You can get on SSDI immediately -- apply online.
The first payment will not arrive until 6 months after approval.
The 2 years was my waiting time for Medicare.
Akua
SSDI;
I hear that it takes 24 months to get on SSDI.
I am 63 this past April; in 24 months I will be
65, and in another 8
It seems people are beginning to understand the magnet benefits. Ok,
I'm, still dealing them, so, if anybody's interested, lemme know,
and I'll get em for you. I mentioned this 15 years ago, and nobody
got on board, but I'm tellin ya, they work.
I'm interested -- I was looking for the
Has anyone tried hypnosis?
anyone know about gold ( taking it) and where to get some?
--
i need a big plastic thing sort of like a dust pan to hold a garbage
bag open while i put leaves, plant debris inside
i think it's already invented
anyone know of this?
--
here. i love it, fought to get it. it changed my pain from 9 to 3.
a mere $20/month. that's all i take -- well plus an aspirin and nadolol
which brings my total to $25/month for drugs now if all the other
things i need would cost less
did i read where one or some of you were taking
/ref=pd_ecc_rvi_cart_1
- Original Message -
From: Akua mailto:a...@artfarm.coma...@artfarm.com
To: mailto:tmic-list@eskimo.comtmic-list@eskimo.com
Sent: Thursday, June 23, 2011 4:18 PM
Subject: [TMIC] tools
i need a big plastic thing sort of like a dust pan to hold a garbage
bag open
Had a couple of articles that may be of interest to those with
unusual symptoms: TSC tuberous Sclerosis and Cervical Dystonia. BTW
sub is free.
--
(Leave It To Beaver)
interesting too
Kevin
NE Ohio (Canton)
From: Akua a...@artfarm.com
To: tmic-list@eskimo.com
Sent: Mon, June 20, 2011 3:23:33 PM
Subject: [TMIC] Neurology Now
Had a couple of articles that may be of interest to those with
unusual symptoms: TSC tuberous Sclerosis
http://www.unclaimed.org/
has states unclaimed money links -- from AARP
A couple of years ago I foud out I had $150... between the nursing
home and returning
home the PO cancelled forwarding and a check went back .
--
YAY!
I called and left a message.
Say hello to my hometown for me!
I miss it mightily!
I spent the second half of my childhoood in Springfield Gardens, Queens.
Akua
Well family, I am back in New York;
I have lost my job as associate professor in a small college in the
Middle East. I could
Does your insurance company have case managers?
Or can you get one through the public health system?
When i had insurance (pre Medicare) a person at the insurance
told me about a health prof. case manager who would coordinate these things.
(then i got ssdisability and lost the insurance).
Hi,
Is there a time warp?
You sent this from the past to arrive today, June 17, to remind me that I need
to write more?
I will see this as a sign, that I need to get back in gear, work on
my discernment
and practice, to get back on the path.
Thank you.
I loved this poem. It made me laugh.
, and
acupuncturist to your healing team?
(I have none of those, but wish I did)
Think of it as a team, create a noteboook and e-file that you take to
your various physicians... perhaps your condition creates/ or has
created new sensitivities.
Wishing you health and healing,
Akua
--
Sorry to read this, Dalton!
Hi Carol;
This is Dalton. I just got terminated today. It seems I couldn't
overcome the pull of TM, and my classroom work-that of which I was
most proud-suffered. I have three months' notice. Last year they
lightened the load and I did OK, but they said I
--- and that might make the endeavor
easier.
That all be well,
Akua
--
://www.ravelry.com/stores/akua-lezli-hope-designs
http://www.zencrochet.blogspot.com/
http://www.artfarmpaperworks.etsy.com
http://www.artfarm.com/papier.html
http://www.absolutearts.com/portfolio/a/akualezli/
http://www.healrecover.blogspot.com
http://www.akuahaiku.blogspot.com
http://www.akualezli.blogspot.com
in the US on the News, guy got feeling back in his legs!
--
I've gotten about 8 digests today -- with one message in each.
Is there anyway to fix it?
--
Happy Birthday to my Fellow Twins and the Early Crabs
--
http://parawalk.com/
This sounds fishy. Anyone know about this modality?
Akua
--
I couldn't figure out how to do it -- put money in a trust (need a
lawyer) and then do Medicaid buy-in
but perhaps that's a possibility for you.
wellit happened. my short term disability ran out Monday.
then it happened again,my first disabled social security check was
automatically
Dear Jim,
I am grateful for the community and institution that you have built.
It has been shelter in the unending storm, beacon in the darkness,
warm comfort in the cold. Thank you very, much.
Akua
22 years ago today I became a ventilator dependent quadriplegic due
to acute transverse
I am sorry to read this. Though being able to name it, to point at a
spot and kwo
what you are pointing at, has got to help.
How did they arrive at this diagnosis? Does this help with treatment?
I hope so!
Wishing you the best, always!
Akua
Well, friends;
I now have an answer
It was about getting World War 2 vets to the new memorial for them
before they die.
The link could have included this bit of information -- that's
encouragement to read vs. no information
whatsoever. There's no need to get huffy. Good netiquette is
telling others where and what you are
In the line at the store, the cashier told the older woman that she
should bring her own grocery bag because plastic bags weren't good
for the environment.
The woman apologized to him and explained, We didn't have the green
thing back in my day.
The clerk responded, That's our problem
Wishing you the best, always.
that you heal and are well.
--
Chalk it up to my paranoia, but if there is no
summary or excerpt, I don't click on unexplained links. do a cut and
paste if you want others to read it ...
--
. and have just begun to
recover.
Akua
--
HAPPY BIRTHDAY TO THE MAY-LINGS!
--
I too had to wait two years. I applied immediately, too. The wait
for disability is 6 months, the wait for medicare is two years from
onset
(or approval). Myapproval was on the first application. I was still
without money for six months and health care for two years while
I was paralyzed and
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