Re: [QUAD-L] sweating profusely when laying on my side at night

[Michelle Harkness]

Hey Greg!

I'm a C5 Quad, 30 years post.  It's always either a pressure point, bowel
or UTI for me.  Bowel and UTI are usually not constant though, they come
and go for sweats, like when I'm actually pooping.  I also use a magic
bullet every other night and have been successful with it for 30 years!
The pressure point is the only one that will have the sweating immediately
stop if I reposition.  I don't usually even have a breakdown of skin with
the "bed sweats", it's usually if my pillow between my knee and ankle
points has shifted and I have bone to bone contact, if my top leg has
somehow fell forward over my bottom and stayed there for a while, or if my
heels are not on a pillow and are making contact with the bed.  I also use
an alternating air pressure mattress, which works fairly good, but not
always the best.

Weirdly, I'm wondering if it could just be a bone pushing against you
inside that your body is not feeling comfortable with?  Especially if
you're not seeing red marks anywhere.  I will usually have faint red marks
if any of the above happen, which go away fairly quickly.  With internal
stuff, like my galbladder and pancreas having an issue, they showed up in
spasms, not sweats.  The only other time the sweats were weird, was when I
went into labor with my kiddo.  The contractions mimicked my pooping
contractions and made me sweat with every one - I assume that's not an
issue for you though.  ;)

I would say to pay extra special attention to your positioning and see if
anything is pressing more firmly.  I usually sweat opposite - so if I'm
sweating on the left, the right is most likely the problem and vice versa.

I'm really wondering if one of your kidney stones just decided to
present differently or get stuck somewhere else to provide your night
sweats?  That could potentially be a pressure point your body doesn't like
as well.  My hubby just had his first stone a few months ago and I legit
thought he was dying!  A trip to the ER, lots of pain meds and a 5 mm stone
later, he was okay!  Not gonna lie, I was not impressed with the stone - I
always thought they were bigger!

I swear there should be a whole special book on how our body gives us
different signs as quads!!  Best of luck figuring things out and I hope
it's sooner rather than later!

Michelle

On Thu, Jan 11, 2024 at 10:13 PM Greg  wrote:

> Hi all.
>
> I'm a C5 quad since a diving accident in August 1987 when I was 23. I just
> turned 60, am(was) 5'10" and I weigh 182 lbs, down from 205 lbs this time
> last year.
>
> Amazingly enough I have used the same bowel program since leaving the
> hospital in 1988. Every other night I lay on my left side then use a
> suppository (Magic Bullet by Concepts in Confidence) the following morning.
> Most mornings my program is finished in 2 hours, sometimes 2.5. Yes, I have
> been very lucky in that regard. The following night I lay on my right side.
> In other words, I empty my bowels every 48 hours. Also, I usually spend
> about 8 hours on my side each night.
>
> The last four nights I have started sweating profusely in the middle of
> the night. The sweating is usually limited to my neck, shoulder, side, and
> arm but only on the side that I'm not laying on. So when I'm laying on my
> left side, my right side sweats, then the following night while laying on
> my right side, I sweat on the left side. I have no sensation from the
> mid-shoulder down, but strangely enough I do feel the sweating.
>
> Re: pressure sores, occasionally I do have superficial pressure sores at
> the ischial tuberosity location, but nothing serious since 2004-2005 when I
> had a bad one that required surgery and sidelined me for almost 2 years.
> Since 2004 I have slept on an Invacare air mattress, and for the past 5
> years it's been the Invacare MA600 system. Today my butt (and sides, hips,
> knees) looks good, and at 60 I don't spend a lot of time in my chair for
> fear of developing a pressure sore. My caregiver has been with me the
> entire time and knows as much about decubitus ulcers as I do. The sweating
> does not appear to be caused by pressure on my skin. Of course it could be
> something under the skin but I don't know.
>
> Another problem I have dealt with for the past 30+ years is kidney stones.
> Kidney stones have their own set of warning signs but sweating has never
> been one of them for me. I mention this because it's possible I do have
> kidney stones as I pretty much live with them all the time. Several times
> over the years I have had lithotripsy to remove large stubborn kidney
> stones that caused persistent UTIs, but it's not surprising for me to pass
> several kidney stones, sometimes quite large, over the course of a few
> weeks and I can usually tell when it's about to happen. Headaches, chills,
> and muscle spasms in certain areas of my side and lower b

Re: [QUAD-L] bladder update

[Michelle Harkness]

PMNR = Physical Medicine and Rehabilitation

I'm not sure if you fully understand what a supra pubic catheter is?  It's
a foley catheter, inserted in the hole they make in your abdomen that sits
in your bladder.  There is literally an open hole in your abdomen and that
is where the catheter comes out of, instead of your groin area.  So, I used
the foley catheter inserted in the supra pubic hole to drain my bladder.
It is always there, and has the balloon that blows up and everything.  At
night, the overnight drainage bag hooked directly to the suprapubic
catheter.  When I "capped it off", I just used a flip valve on the
indwelling catheter to open/close it to drain my urine out.  Sorry for the
confusion in my wording.  You cannot remove the supra pubic catheter for
much longer than it takes to change it out, as the hole will start closing
up quickly. I am just outside of Fort Worth, so we have 2 different
qualified docs - 1 in Dallas and 1 in Fort Worth.  The Fort Worth doc was
hands down the better of the 2.

When I had my suprapubic it was terrible for me (and put in by the first
doc in Dallas, who wasn't my favorite).  The open hole just never seemed to
heal properly (in the 6 months I had it), would constantly drain crap and
always smelled (no matter how much I cleaned it).  I also would always get
low level dysreflexia with it and get uncomfortable feelings whenever I
transferred or moved it.  I also got crazy/ridiculous infections when I had
it.  My doc that did the Mitrofinoff (Fort Worth doc) disliked the supra
pubics and thought they created more infections (but I didn't discuss in
detail).  He agreed with my PMNR doc on doing the mitrofinoff and here we
are.

It's always a battle between what you think/feel is the best for you and
what doctors suggest - because they do not know everything.  I am huge into
"if it isn't broke, don't fix it" and am very resistant to change.  My
intermittent cathing wasn't broke, but I'm an aging quad and knew it just
wasn't ideal anymore.

On Tue, Dec 12, 2023 at 6:55 PM SHIRLEY BELL  wrote:

> what is a PMNR doc? When you used a night bag you must have used a floley.
> Also, when you capped off the s pubic, did you use a reg cath to drain it
> intermittently? Also, where did you have these surgeries? I am in RI sorry
> to keep asking, it is confusing. I read online that with a supra pub you
> can only use a foley, no capping off, and intermittent unless you have the
> one you have now. I never get UTIs with the Foley so thought the sup pub
> would be the same. my doctor says less infections with it?
>
> On 12/12/2023 7:28 PM EST Michelle Harkness 
> wrote:
>
>
> Hey Shirley, I actually capped mine off and drained it periodically -
> trying to sustain some bladder capacity.  It was tiny though, and only
> could hold about 100-150 cc's before I had to empty it.  I did use a night
> bag when sleeping to make things easier though.
>
> I would speak with your quad doc (PMNR doc) and a Female Pelvic Medicine
> and Reconstructive Surgery doc (that's who did my Mitrofinoff).  Between
> them both, they should have the knowledge to tell you what your body is
> able to have done to help you out the most.  The whole purpose of mine was
> to expand my bladder, help with infections and give me more independence.
> What was right for me might not be right for you.  I was just surprised at
> all of the options and applications they have in the reconstructive surgery
> side of things to help.  so there might be a different fit that works
> better for you.
>
> I've personally always avoided an indwelling catheter, based on my
> personal feelings and the suggestions of every urologist I've had.  Even my
> reconstructive doc isn't a fan of the supra pubic catheters because of the
> colonization of bacteria that occurs.  The quad life we live is fraught
> with tough decisions, but they do have a lot of things to try and help!
>
> On Tue, Dec 12, 2023 at 5:49 PM SHIRLEY BELL  wrote:
>
> Hi Michelle, one question, when you did supra pubic did you use a Foley
> catheter? you would have had to? Please let me know thanks!
>
> On 12/11/2023 9:52 PM EST Michelle Harkness 
> wrote:
>
>
> Hey Shirley!  I've been on this page forever and learned lots from y'all,
> but I tend to keep kinda quiet.  Not sure what your situation is exactly,
> but I've been a C5-6 quad for 30 years and I had always done intermittent
> cathing, relying on someone else for help with it.  In February of this
> year, I finally took the plunge and got a Mitrofinoff with bladder
> augmentation. I had tried a suprapubic for about 6 months, but hated it and
> the multiple never ending infections it caused, so I started looking more
> into the Mitrofinoff then.  I can now do my own cathing almost all of the
> time, through a stoma in my belly button 

Re: [QUAD-L] bladder update

[Michelle Harkness]

Hey Shirley, I actually capped mine off and drained it periodically -
trying to sustain some bladder capacity.  It was tiny though, and only
could hold about 100-150 cc's before I had to empty it.  I did use a night
bag when sleeping to make things easier though.

I would speak with your quad doc (PMNR doc) and a Female Pelvic Medicine
and Reconstructive Surgery doc (that's who did my Mitrofinoff).  Between
them both, they should have the knowledge to tell you what your body is
able to have done to help you out the most.  The whole purpose of mine was
to expand my bladder, help with infections and give me more independence.
What was right for me might not be right for you.  I was just surprised at
all of the options and applications they have in the reconstructive surgery
side of things to help.  so there might be a different fit that works
better for you.

I've personally always avoided an indwelling catheter, based on my personal
feelings and the suggestions of every urologist I've had.  Even my
reconstructive doc isn't a fan of the supra pubic catheters because of the
colonization of bacteria that occurs.  The quad life we live is fraught
with tough decisions, but they do have a lot of things to try and help!

On Tue, Dec 12, 2023 at 5:49 PM SHIRLEY BELL  wrote:

> Hi Michelle, one question, when you did supra pubic did you use a Foley
> catheter? you would have had to? Please let me know thanks!
>
> On 12/11/2023 9:52 PM EST Michelle Harkness 
> wrote:
>
>
> Hey Shirley!  I've been on this page forever and learned lots from y'all,
> but I tend to keep kinda quiet.  Not sure what your situation is exactly,
> but I've been a C5-6 quad for 30 years and I had always done intermittent
> cathing, relying on someone else for help with it.  In February of this
> year, I finally took the plunge and got a Mitrofinoff with bladder
> augmentation. I had tried a suprapubic for about 6 months, but hated it and
> the multiple never ending infections it caused, so I started looking more
> into the Mitrofinoff then.  I can now do my own cathing almost all of the
> time, through a stoma in my belly button that I use a male 16" catheter
> for.  The bladder augmentation helped wonders, and I was pretty unfamiliar
> with what that was, or what wonders it could do when I received it.  It
> helps absorb the bladder spasms, gives you more capacity and my doc said it
> helps lessen infections somehow (still trying to figure that out).  The
> only draw back is they use your bowel for the augmentation, which in turn
> causes lots of goobers in your urine (doc says the bowel still does what
> its supposed to do).  But it's super nice to not have to lay down 4 times a
> day to use the restroom, and basically pee wherever I want to!
>
> Have an amazing day!
>
> Michelle
>
> On Mon, Dec 11, 2023 at 3:58 PM wheelch...@aol.com 
> wrote:
>
>
> Thanks for the update.  The bladder, over time, for those with indwelling
> caths, will/can shrink to the size of a walnut, compared to what it used to
> be.  When you consider the size of the cath, plus the balloon, inside a
> walnut.  there is not much room for urine to collect and it may pass
> quicker.
> Best Wishes.
>
> On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL <
> sbell...@cox.net> wrote:
>
>
> Hi all, well I had my cystoscopy and all he found was a shrunken bladder.
> That is what is causing spasms on and off and rejecting catheters on and
> off. Not lasting as long. They are going to change my meds to see if that
> helps. Botox is an option as well. 47 years of indwelling catheter use has
> taken a toll. Not much they can do but I am looking into it. There is an
> external catheter option called a pur wick for women of course but I have
> doubts about it. I am trying not to worry but geez, not great. A suprapubic
> may be an option, not a cure but may be easier for me and my caretakers to
> deal with this.  Hope you all doing ok, quad life is an ongoing challenge
> for sure. Have a great holiday season.Shirley If you want to see how I make
> my living check out my Etsy shop here.
> https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav
>
>

Re: [QUAD-L] bladder update

[Michelle Harkness]

Eric - I was TERRIFIED of the Mitrofinoff surgery for about 28 years.  I
had never had a surgery other than my spinal fusion, so I was not on board
with signing up for anything major!  I'm also on blood thinners because of
blood clots/pulmonary embolism and I'm overweight, so add those two layers
of suck to the mix as well.  About 2 months after the pandemic hit my
gallbladder decided it didn't like me, so I had to have emergency surgery
to get that taken out (in the hospital completely ALONE for 5 days).  I was
scared, being my first big surgery, but it gave me a bit of confidence that
the unknown wasn't as scary as previously thought.  I've also done
childbirth as a quad, without an epidural (not by choice, it just happened
that way) so I maybe had a bit of false confidence added in the mix?  My
quad doc also said that I wanted to have it when my body could better
recover before I got too old, considering I just keep getting older...
Either way, it was an approximate 4 week recovery with the Mitrofinoff, but
my least favorite and worst part was the emptying of the bowels the day
before. A day of bed rest and a crazy amount of poo to handle!  I did about
2 weeks of bed rest healing and another 2 of light duty at home.  No
driving for a month and no car rides for a month.  My bowel bounced back
really well from having the 10" cut out of it for the augmentation, and my
incision from belly button to top of pubic line also healed much faster
than I anticipated.  My only regret was not getting it done sooner and I
kicked my own butt for waiting so long!  Especially when I have so much
more freedom with it.  If interested, I would see which docs are in your
area.  I actually declined the first doc (who did my suprapubic) as he was
an ass and did the surgery a bit different.  My second doc I went to was
soo much better and even had experience watching Dr. Mitrofinoff perform
his surgery.  That doc knew his stuff and had an excellent procedure.   I
had a 3 hour surgery and was out of the hospital and home in 3 days.

I'm interested to know how the gentamicin works, as I still get way to many
UTI"S.  I flush my bladder every other night, just to help keep my new
goobers out and in the hopes of keeping infections lower.

On Tue, Dec 12, 2023 at 2:24 PM Eric Olson  wrote:

> I had my supra pubic done a couple decades ago and it certainly makes
> things easier for my care givers.  I still have problems with uti's.  I was
> thinking about the Mitrofinoff,but it is a no joke surgery.  I have started
> doing gentamicin bladder irrigations.  Gentamicin is an antibiotic.  It's
> not supposed to cause antibiotic resistance the way antibiotics taken
> systemically do.   I will let everyone know how that goes.  I may still
> have to go to the Mitrofinoff at some point, but that surgery scares me
>
> On Mon, Dec 11, 2023 at 2:34 PM SHIRLEY BELL  wrote:
>
>> Hi all, well I had my cystoscopy and all he found was a shrunken bladder.
>> That is what is causing spasms on and off and rejecting catheters on and
>> off. Not lasting as long. They are going to change my meds to see if that
>> helps. Botox is an option as well. 47 years of indwelling catheter use has
>> taken a toll. Not much they can do but I am looking into it. There is an
>> external catheter option called a pur wick for women of course but I have
>> doubts about it. I am trying not to worry but geez, not great. A suprapubic
>> may be an option, not a cure but may be easier for me and my caretakers to
>> deal with this.  Hope you all doing ok, quad life is an ongoing challenge
>> for sure. Have a great holiday season.Shirley If you want to see how I make
>> my living check out my Etsy shop here.
>> https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav
>>
>

Re: [QUAD-L] bladder update

[Michelle Harkness]

Hey Shirley!  I've been on this page forever and learned lots from y'all,
but I tend to keep kinda quiet.  Not sure what your situation is exactly,
but I've been a C5-6 quad for 30 years and I had always done intermittent
cathing, relying on someone else for help with it.  In February of this
year, I finally took the plunge and got a Mitrofinoff with bladder
augmentation. I had tried a suprapubic for about 6 months, but hated it and
the multiple never ending infections it caused, so I started looking more
into the Mitrofinoff then.  I can now do my own cathing almost all of the
time, through a stoma in my belly button that I use a male 16" catheter
for.  The bladder augmentation helped wonders, and I was pretty unfamiliar
with what that was, or what wonders it could do when I received it.  It
helps absorb the bladder spasms, gives you more capacity and my doc said it
helps lessen infections somehow (still trying to figure that out).  The
only draw back is they use your bowel for the augmentation, which in turn
causes lots of goobers in your urine (doc says the bowel still does what
its supposed to do).  But it's super nice to not have to lay down 4 times a
day to use the restroom, and basically pee wherever I want to!

Have an amazing day!

Michelle

On Mon, Dec 11, 2023 at 3:58 PM wheelch...@aol.com 
wrote:

> Thanks for the update.  The bladder, over time, for those with indwelling
> caths, will/can shrink to the size of a walnut, compared to what it used to
> be.  When you consider the size of the cath, plus the balloon, inside a
> walnut.  there is not much room for urine to collect and it may pass
> quicker.
> Best Wishes.
>
> On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL <
> sbell...@cox.net> wrote:
>
>
> Hi all, well I had my cystoscopy and all he found was a shrunken bladder.
> That is what is causing spasms on and off and rejecting catheters on and
> off. Not lasting as long. They are going to change my meds to see if that
> helps. Botox is an option as well. 47 years of indwelling catheter use has
> taken a toll. Not much they can do but I am looking into it. There is an
> external catheter option called a pur wick for women of course but I have
> doubts about it. I am trying not to worry but geez, not great. A suprapubic
> may be an option, not a cure but may be easier for me and my caretakers to
> deal with this.  Hope you all doing ok, quad life is an ongoing challenge
> for sure. Have a great holiday season.Shirley If you want to see how I make
> my living check out my Etsy shop here.
> https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav
>

Re: [QUAD-L] Colon Cancer

[Michelle Harkness]

Oh no!  I had blood clots in my lungs a very long time ago and it caused a
bunch of fluid on my lungs (like over a 2 liter bottle full).  Have they
checked for that?  I believe a simple xray showed my initial fluid (kinda
squished my lung).  I was the same way - blood clots gone, but not back to
normal.  Either way, I hope whatever is causing it clears up quickly!

Michelle

On Wed, Aug 24, 2022 at 5:05 PM Greg  wrote:

> Hi, They found the cause of my breathing issue. I had blood clots in my
> lungs. Although they cleared them up, I'm still not back to normal. I can't
> type more than a few lines before I'm exhausted. And I get so dizzy so
> easy. etc.
>
> I'm with you. I probably would not do any treatments, but if its still
> stage 1, the colonoscopy could cure it up. No chemo, I just don't think I
> could do it.
>
>
> Greg
>
>
> On 8/21/2022 4:18 PM, Danny Hearn wrote:
>
> I get what your saying Greg, my docs keep wanting me to take the cologuard
> test and etc, I just tell them I'm not interested...after 25 years as a
> quad and with all my pain and health issues, I would not want to go thru
> any treatments or chemo. Hope it was just a false positive for you. ( Did
> you ever find out what was causing all your breathing issues a while back??
> )   Dan H***
>
> On Sunday, August 21, 2022 at 05:58:19 PM CDT, Greg 
>  wrote:
>
>
> Recently had a positive Cologuard Test. So doing a colonoscopy next week.
> I almost said no.  I just can't handle the prep. Drinking that nasty stuff.
> But the Doc said I could do just pills and water. 12 pills lots of water,
> 12 more pills, lots more water.
>
> They do have a 13% false positive, but if not, lets hope its not far
> along. Not sure I'd do Chemo.
>
> Greg
>
>
>

Re: [QUAD-L] Time and half holiday pay for CNAs?

[Michelle Kephart]

Hi Dan,

Like you, I have a caregiver for 2 hours in the morning and 1 hour at
night. I pay $50 for the morning shift and $30 for the evening shift. I
currently live in Colorado but I paid much less when I lived in Georgia. I
imagine there is a lot of variation in pay based on location. I don’t pay
any differently for holidays but this has come up for me before. I’m
curious to know how others manage it.

Michelle


On Sun, Jul 3, 2022 at 1:39 PM Jeffrey Gaede  wrote:

> Hey, Dan. My attendants get paid through the state through a program I'm
> in. Way too many hours for me to afford. I asked my attendant about your
> email and if they get paid for holidays. From what I understand, they will
> starting next year but currently don't. Don't really know exactly what to
> tell you with our circumstances being so different but I have learned over
> the years to sit down with one, all, or some, and discuss what you think
> would be fair while still listening to their opinions. I'm sure you could
> come to an understanding where everyone benefits and everything is
> understood so you can avoid issues in the future. Good luck…
> Jeff
>
>
> On Saturday, July 2, 2022 at 10:23:40 AM PDT, Daniel Gove <
> quadz...@optonline.net> wrote:
>
>
> Hi all,
>  Been a while since I've been on this list, I hope you all are well.  Just
> curious how many of you, if any, pay your CNAs time and a half on
> holidays? If so, which holidays do you pay it? I ask because one of my CNAs
> (morning CNA) mentioned it last Easter, saying she should be getting
> holiday pay because of the Easter holiday. Thing is, she's been working for
> me for several years now and never mentioned it before and I never paid any
> of my CNAs holiday pay and never offered. Because she's an excellent CNA
> and had been complaining about her hourly pay, I decided to give her and
> the evening CNA the holiday pay.
>
> Problem is, the evening CNA then started asking about holiday pay on
> Memorial Day and I'm sure they'll be expecting it on Independence day. I'm
> not going to pay them time and a half every holiday, probably just the
> major holidays like Christmas, New Year's, Thanksgiving Etc. Just curious
> how others handle the situati on? What, if any holidays do you pay your
> CNAs time and a half holiday pay?  While we're on the subject of pay, can I
> ask how much you pay your CNAs per hour? I pay mine $25 an hour which I
> thought was decent. I get 2 hours of care in the morning and 1 hour at
> night. Thanks for any info!
>
> Dan G.
>
>
>
>

Re: [QUAD-L] Finding a Quad Doctor.

[Michelle Harkness]

Oops!  Sent to soon!

and I have a PMNR doc that sees nothing but quads - and knows everything we
need to know about how to navigate life to the fullest and how our bodies
work!  She's a little further away, so I don't see her as often.  It's
especially important to me right now, as I consider myself in an "aging
quad" status.  :)

On Wed, Mar 30, 2022 at 9:05 PM Michelle Harkness <
hotwheelsmiche...@gmail.com> wrote:

> I am 28 years post injury, c5 quad and have always seen a "quad doc" for
> specialized things.  To me they are a life saver for sure - they literally
> speak quad!  It has always been a Physical Medicine and Rehabilitation
> (PMNR) doc - also called a phsyiatrist.  I live in Texas and I actually
> have 2 right now - 1 closer to me that is a standard PMNR doc (all of them
> know the basics of quads but aren't necessarily specialized in quads) and
>
> On Wed, Mar 30, 2022 at 2:37 PM Jeffrey Gaede  wrote:
>
>> And know that physiatrist and physical medicine and rehab doctors are, to
>> my experience, synonymous.
>>
>> On Wednesday, March 30, 2022, 11:58:36 AM PDT, Noel 
>> wrote:
>>
>>
>> I have the same problem. I think maybe a Physiatrist with some kind of
>> spinal cord injury specialty or experience.
>>
>> On Wed, Mar 30, 2022 at 11:08 AM DAVID LEWIS 
>> wrote:
>>
>> At times being a Quad  when i have something wrong wrong with me that my
>> regular Dr. doesnt know what to do he says about me looking into a Quad Dr.
>> Who exactly would that be?  A Neurologist  Dr maybe? What do you guys
>> think?
>> Thanks
>>
>>

Re: [QUAD-L] Finding a Quad Doctor.

[Michelle Harkness]

I am 28 years post injury, c5 quad and have always seen a "quad doc" for
specialized things.  To me they are a life saver for sure - they literally
speak quad!  It has always been a Physical Medicine and Rehabilitation
(PMNR) doc - also called a phsyiatrist.  I live in Texas and I actually
have 2 right now - 1 closer to me that is a standard PMNR doc (all of them
know the basics of quads but aren't necessarily specialized in quads) and

On Wed, Mar 30, 2022 at 2:37 PM Jeffrey Gaede  wrote:

> And know that physiatrist and physical medicine and rehab doctors are, to
> my experience, synonymous.
>
> On Wednesday, March 30, 2022, 11:58:36 AM PDT, Noel 
> wrote:
>
>
> I have the same problem. I think maybe a Physiatrist with some kind of
> spinal cord injury specialty or experience.
>
> On Wed, Mar 30, 2022 at 11:08 AM DAVID LEWIS 
> wrote:
>
> At times being a Quad  when i have something wrong wrong with me that my
> regular Dr. doesnt know what to do he says about me looking into a Quad Dr.
> Who exactly would that be?  A Neurologist  Dr maybe? What do you guys
> think?
> Thanks
>
>

Re: [QUAD-L] wondering about people

[Michelle Harkness]

Hey ya’ll!

I’ve been on the quad list forever - just am usually quiet. I had COVID for 
Christmas (along with my hubby and kiddo).  Mine was basically a sinus 
infection.  I felt a little tired, had a lot of nasal discharge and a lot of 
nose blowing. I also lost my sense of smell, which I haven’t fully recovered 
yet. No fever, no massive tiredness, no breathing problems. If I didn’t test 
positive for COVID, I would have just thought it was a sinus infection. 路‍♀️ I 
had the flu about 3 years ago and was wiped out solid for 2 weeks - it was way 
worse then the COVID was.  I am unvaccinated and will not be - plus I have 
shiny new antibodies floating around now. 

Michelle
C5 Complete, 28 years
Texas



> On Feb 20, 2022, at 9:41 PM, Toby Ausbun  wrote:
> 
> 
> 
> Sent from my iPad
> 
>>> On Sep 7, 2021, at 3:22 PM, Nichole Rohling  wrote:
>>> 
>> 
>> Thank you Don for replying.
>> I originally asked if any Quads had gotten Covid, etc.
>>  
>> Nicki
>> C5/6
>>  
>> From: Don Price [mailto:donpric...@yahoo.com] 
>> Sent: Tuesday, September 7, 2021 2:28 PM
>> To: Quad-list@eskimo.com
>> Subject: Re: [QUAD-L] wondering about people
>>  
>> Hello all!
>>  
>> I haven't been on the quadlist for a while, but i'm checking in today.
>>  
>> I'm so sorry to hear about Lori. She was a nice woman who went through a 
>> lot. My condolences to her family and friends. 
>>  
>> Somebody asked about quads and covid. I know three quads who caught it. All 
>> three got through it without being hospitalized, although one of them 
>> resided in a nursing home when he caught it. 
>>  
>> I've been vaccinated and even went in for a booster third shot recently. I 
>> got the Moderna vax, and as discussed I had slight fever and yuckiness for 
>> about 24 hours after the second shot. No such reaction after the third shot.
>>  
>> I wish you all happiness and good health!
>>  
>> Don.
>> c5-6, Tempe, AZ
>>  
>> On Tuesday, September 7, 2021, 08:02:29 AM MST, Shirley Bell 
>>  wrote:
>>  
>>  
>> Thanks Nicki, so sad indeed about Lori. We never knew how Bobbie Humphies 
>> died either. Miss them  both. Also wonder how Joan and Larry are?? I am good 
>> here in RI trying to find a way to drive again, hard on many levels. Shirley

Re: [QUAD-L] Re: Testing my email

[Michelle Kephart]

Hello from Colorado! I’m a C5 quad, 13 years post. I don’t speak up often
but I’ve learned so much from all of you and I appreciate this group. ❤️

Michelle


On Sat, Jan 15, 2022 at 2:00 PM radnbada...@aol.com 
wrote:

> Ray (radnbadatpj) Still here  c/5 Prescott Valley AZ 20yrs post, miss all
> the old timers:( Jim who started this site, I think he’s still here,  W
> (Wheelchair who’s son was a quad) and he always gave awesome advice and
> just knew a bunch of stuff. Eric who’s still here, Dave from Phoenix
> injured during gymnastics meet (I think), Jim ( he did donkey trails
> little inspirational quotes on here.) Mark who was Quad Pirate, Silas,
> the farmer, Houston the gangster, who was going to college, Little Quad
> can’t remember her name, Lori who just recently passed away,  Dave from
> Texas, Boyd who at the time was the oldest member on the quad list, I think
> he was a pilot,  Joan can’t remember if it was her or Nancy who raised
> miniature horses. Greg he also lives in Arizona. These are just a few of
> the names that come to mind:-) I found this site a couple years after my
> accident and have followed it through the years. Sorry for rambling on,
> anyway I pray everyone is off to a great New Year and good health keep the
> post’s coming
>
>
>
> Sent from the all new AOL app for iOS
> <https://apps.apple.com/us/app/aol-news-email-weather-video/id646100661>
>
>
> On Saturday, January 15, 2022, 11:07 AM, Carla Aarssen <
> caars...@hotmail.com> wrote:
>
> I am still here. 42yr old female C5 quadriplegic from Ontario, Canada 
>
> Get Outlook for Android <https://aka.ms/AAb9ysg>
> --
> *From:* Eric Olson 
> *Sent:* Saturday, January 15, 2022 12:41:59 PM
> *To:* Jeffrey Gaede 
> *Cc:* Edward Tessier ; quad-list@eskimo.com <
> quad-list@eskimo.com>
> *Subject:* Re: [QUAD-L] Re: Testing my email
>
> I just meant how many people are actually subscribed to the list.  I think
> most of the people that were on the list at one time have moved on to
> social media.  Shame.
>
> On Fri, Jan 14, 2022 at 11:22 AM Jeffrey Gaede  wrote:
>
> As in? Quadriplegics? Tetraplegics?
>
> On Friday, January 14, 2022, 09:18:05 AM PST, Eric Olson <
> whee...@wi.rr.com> wrote:
>
>
> I often wonder how many of us there are.
>
> On Thu, Jan 13, 2022 at 10:03 PM Edward Tessier 
> wrote:
>
> My message got through.
>
>  Thanks everybody!
> --
> *From:* Edward Tessier
> *Sent:* Thursday, January 13, 2022 7:52 PM
> *To:* quad-list@eskimo.com 
> *Subject:* Testing my email
>
> I haven't posted in a long time that I want to make sure it still works
> with my current email.   If anybody sees this, just give me a quick howdy.
>
>  Thanks
>
>

Re: [QUAD-L] ARE QUADS IN CONSIDERD HIGH RISK FOR BOOSTER SHOT

[Michelle Kephart]

I got my booster 6 months after the second dose of the initial vaccine. I
had no issues other than feeling tired for a day, same effect as the
initial vaccine. I was given Pfizer last Spring, and Moderna for the
booster.

Michelle


On Mon, Nov 22, 2021 at 4:01 PM Greg  wrote:

> i'm 56 and got the booster as soon as i could. no issues
> and i had lung blood clots at the time,
> greg
>
> On 9/21/2021 9:45 AM, DAVID LEWIS wrote:
>
> Im 63 year old Quad has trouble coughing. Do i need a booster?  and When?
>
>
>

Re: [QUAD-L] Personally

[Michelle Harkness]

I’ve used it in job interviews before - said I excel at sitting.  I think I’ve 
gotten all of the jobs I’ve used that at too!  I do sit around all day too, but 
I’m usually working on my computer while doing so as well. (Hazards of having 2 
jobs and working from home I guess). 路‍♀️

Michelle
C5, post almost 28 years (a few days shy yet)


> On Sep 14, 2021, at 2:06 PM, Danny Hearn  wrote:
> 
> 
> I joke about how I sit all day..and I have done nothing for so long now, 
> that I have actually got Quite Good at It !  Really though- I miss doing 
> things around my home, yard work and landscaping & things like that.   Dan 
> H***
> 
> On Tuesday, September 14, 2021, 01:58:06 PM CDT, Amy Elizabeth Baldwin's 
> Poetry  wrote:
> 
> 
> Hello everyone, it has been a long time since I have posted on here. But my 
> mom and I were just joking about how I sit all day. 
> Do any of you do that? 
> Thanks, Amy 

Re: [QUAD-L] Botox for bladder spasms

[Michelle Harkness]

I have also been thinking about doing bladder Botox, but have so far chickened 
out.  I’m a C5/6 quad, almost 28 years post. I do intermittent catheterization 
approx every 4 - 5 hours. I can’t do the bladder meds anymore, as they give me 
way too many bad reactions. I do get “goosebumps”, my form of AD if I ever void 
before my cath time. 

My biggest worry = it affecting my pooper too!

Were there any adverse reactions Paul?  How long have you been getting it done? 
 

Thanks for the input you’ve already shared!

Michelle

> On May 4, 2021, at 6:31 PM, Paul Jacobson  wrote:
> 
> 
> Hi Lori, bladder botoxa dream come true!
>  
> >  no accidents ever
> >  spasms significantly reduced and are very  rare and are never 
> disruptive
> >  no AD related to bladder ever
> >  go every 5 monthsprocedure is quick and painless w/anesthesia
>  
> Any questions, let me know.  Good luck!
> Paul
>  
> From: Lori Michaelson
> Sent: Tuesday, May 4, 2021 3:02 PM
> To: quad-list
> Subject: [QUAD-L] Botox for bladder spasms
>  
> I never ever thought I would need to consider Botox for these bladder spasms 
> I am having even though I know many quads have used it. No one I know though.
>  
> Does anyone on here need to use Botox for bladder spasms? If so, how often?
>  
> Thank you!
> ~Lori
>  
> -- 
> “Petting, scratching, and cuddling a dog could be as soothing to the mind and 
> heart as deep meditation and almost as good for the soul as prayer.” ― Dean 
> Koontz

Re: [QUAD-L] Bed/Mattress Question

[Michelle Kephart]

I use an alternating pressure pad and sleep on my back without being
turned. I buy mine from Amazon for $50-$80. The pumps die and the pad can
pop, so I always keep another one on hand. They usually last about a year.
I get sores from my wheelchair cushion, but not from my bed.

Michelle


On Fri, Mar 19, 2021 at 11:09 PM Lissette Whitehead 
wrote:

> I’ve been using an intelli-gel mattress topper for 15 years and it’s still
> very comfortable and I’ve never had a bedsore. I never get turned either, I
> just sleep on my back.
> https://www.amazon.com/Intellibed-Gel-Mattress-Topper-Queen/dp/B0161TN7SK
>
> Lissette Whitehead
> (858) 888-8263
> https://www.facebook.com/RetroTeesPlus/
> www.lwgripgloves.com
> --
> *From:* Gail Holmes 
> *Sent:* Friday, March 19, 2021 10:02:56 PM
> *To:* Eric Olson 
> *Cc:* Nancy ; quad-list@eskimo.com  >
> *Subject:* Re: [QUAD-L] Bed/Mattress Question
>
> My friend whose been wound care nurse  a long time said the alternating
> pressure overlay mattresses that run $150-200 or less are very effective at
> preventing pressure sores.
>
> I’m not a quad just an old caregiver still learning  from you all.
>
> Sent from my iPhone
>
> On Mar 19, 2021, at 2:29 PM, Eric Olson  wrote:
>
> 
> Sorry Nancy, I just sleep on a memory foam mattress.  So far, I haven't
> had any problems but as I get older and my skin gets thinner. I might have
> to use something else
>
> On Fri, Mar 19, 2021 at 1:28 PM Nancy  wrote:
>
> What bed/mattress do you use to prevent skin breakdowns? I'm looking for info
> and recommendations - comfort, durability, reliability...
>
> I currently use a Drive Medical Lateral Rotation Mattress with Low Air Loss.
> I don't use the turning feature because it never returned me to the correct
> position. I got this bed in 2015 and I'm now having a lot of problems wit
> it. I can no longer get comfortable, it bulges and makes hard lumps under
> my injury site, bones and muscles. I can't sleep through the night anymore
> and I'm getting headaches frequently. I hurt all the time. On the plus
> side, it continues to prevent pressure sores. I've tried to get insurance
> (MLTC Medicare/Medicaid) to cover a new mattress but have been denied.
> After nearly 53 years, I have two chronic sores so I spend most of my
> time in bed. This is killing me both physically and mentally! Any
> suggestions will be appreciated.
> Nan
>
>

Re: [QUAD-L] Vaccines for Covid-19

[Michelle Kephart]

Vaccines invoke an immune response, so it's normal to feel tired or
slightly sick after you get one. It's a sign that your body is working to
build up immunity. It might not be comfortable, but it's better than dying
from covid. I'll be in line the first day I'm eligible to get vaccinated.


On Sat, Jan 16, 2021 at 9:08 AM Noel  wrote:

> I've registered, but for some reason I'm not eligible yet.
>
>
> On Thu, Jan 14, 2021 at 4:01 PM Danny Hearn  wrote:
> >
> > Hello Group.I was Wondering how everyone Feels about the Covid-19
> Vaccines. Yes-No  Or going to wait a while and see ? I'm not sure I Trust
> Them Myself.  Thanks !Hope Your All Doing Okay as we head into A New
> Year !Dan H***
>
>

Re: [QUAD-L] Colostomy - Yea or Nay?

[Michelle Kephart]

You change the bag yourself!?! I have to learn your techniques...


On Mon, Mar 16, 2020 at 6:15 PM Aaron Mann  wrote:

> If you use the two piece, are you familiar with venting the air on your
> own? (I do it with one hand and a pencil) I, too, am at work from 11a to
> 8p. I've spent my fair share of lunches doing bag changes wherever I can
> drive to meet my wife or attendant.
>
> Work is what pushed me to stay on fiber gummies. Take 2 every day for nice
> poo. The "pancakes" Greg mentioned were embarrassing at the office.
>
>
> Aaron Mann
>
>
> On Sun, Mar 15, 2020 at 3:00 PM Michelle Kephart <
> michelle.keph...@gmail.com> wrote:
>
>> I use the Hollister brand and it has a little vent, but it's not great at
>> letting air pass-through. I don't have to put a lot of air in the bag. Just
>> enough to prevent it from being a completely flat vacuum. I take Senna
>> every few days if my stool starts to get thick, but it's usually not a bad
>> consistency. Part of the problem is that I'm not able to change the bag or
>> wafer on my own, and I'm by myself for a majority of the day. When it used
>> to leak, it would happen very slowly. If I could change it on my own, it
>> wouldn't really be a problem at all. The only time it would make a mess was
>> when it started early in the day and I couldn't find anyone to come by to
>> help me change it. I know the air trick is unusual, but I haven't had a
>> single accident when we do it. Even with all the troubleshooting I've had
>> to do over the past year, it's way better than anything I experienced with
>> my old bowel program. I'm so glad I have it now.
>>
>> On Fri, Mar 13, 2020 at 3:35 PM Greg  wrote:
>>
>>> I never had a leak, but had the wafer lift up, called "Pancaking."
>>> When the poo is soft a sticky, it blocks the opening and goes under the
>>> wafer. Luckily its not messy. It seams  the messier it could be, the less
>>> likely will be. Though if its really runy, make sure you don't let it fill
>>> up over full.
>>> Greg
>>>
>>>
>>> On 3/13/2020 2:21 PM, Aaron Mann wrote:
>>>
>>> I never have an issue with the bag leaking due to not having air. Do you
>>> have the bags with the air vent on them or without? Is the wafer getting
>>> pushed off your belly from the stool? If it is the latter, I have found
>>> that consistency of the stool can matter. If it is too firm, try taking
>>> Fiber Gummies or Fiber and some other form to loosen your stool lab so it
>>> doesn't push the wafer off. I offer this because I know what a pain it is
>>> to constantly have a bag with air in it on your belly.
>>>
>>> On Wed, Mar 11, 2020, 8:27 PM Michelle Kephart <
>>> michelle.keph...@gmail.com> wrote:
>>>
>>>> I got a colostomy almost one year ago, and I wish I would’ve done it
>>>> sooner.  I am 37 years old and 11 years post injury, C4/5 complete. I spent
>>>> the better part of the year trying to figure out why the wafer would not
>>>> stay on and nothing was in the bag. I finally figured out that it was
>>>> because of a lack of air in the bag. I found this website to be extremely
>>>> helpful with troubleshooting:
>>>> https://www.veganostomy.ca/ostomy-leaks-tips/
>>>>
>>>> I decided to get a colostomy because I was having more accidents and
>>>> the constant anxiety that I was about to have another accident was wearing
>>>> me down. I was afraid to vary my diet at all. Now that I have the
>>>> colostomy, I rarely think about it. Even when my colostomy leaks, it is so
>>>> much easier to clean up. It doesn't get on my chair, I don't have to sit
>>>> on the mess, and I don't have to worry about poop getting on my skin sores
>>>> when I have them. If we catch the leak early enough and it doesn't get on
>>>> my clothes, I don't even have to get out of my chair to clean up. And since
>>>> we solved the mystery of why my bag was leaking, I have not had a single
>>>> accident. I also love that my life is not dictated by the schedule of my
>>>> bowel program. My skin sores healed up pretty well after I stopped sitting
>>>> in my shower chair for so long.
>>>>
>>>> Like Aaron said, sex is pretty doable with the colostomy. Go into it
>>>> with a fresh empty bag. In fact, I think it's better because I'm no longer
>>>> worried about pooping on my husband (that's never happened, but it would be
>>>> mortifying)! And yes, the farts

Re: [QUAD-L] Colostomy - Yea or Nay?

[Michelle Kephart]

I use the Hollister brand and it has a little vent, but it's not great at
letting air pass-through. I don't have to put a lot of air in the bag. Just
enough to prevent it from being a completely flat vacuum. I take Senna
every few days if my stool starts to get thick, but it's usually not a bad
consistency. Part of the problem is that I'm not able to change the bag or
wafer on my own, and I'm by myself for a majority of the day. When it used
to leak, it would happen very slowly. If I could change it on my own, it
wouldn't really be a problem at all. The only time it would make a mess was
when it started early in the day and I couldn't find anyone to come by to
help me change it. I know the air trick is unusual, but I haven't had a
single accident when we do it. Even with all the troubleshooting I've had
to do over the past year, it's way better than anything I experienced with
my old bowel program. I'm so glad I have it now.

On Fri, Mar 13, 2020 at 3:35 PM Greg  wrote:

> I never had a leak, but had the wafer lift up, called "Pancaking."
> When the poo is soft a sticky, it blocks the opening and goes under the
> wafer. Luckily its not messy. It seams  the messier it could be, the less
> likely will be. Though if its really runy, make sure you don't let it fill
> up over full.
> Greg
>
>
> On 3/13/2020 2:21 PM, Aaron Mann wrote:
>
> I never have an issue with the bag leaking due to not having air. Do you
> have the bags with the air vent on them or without? Is the wafer getting
> pushed off your belly from the stool? If it is the latter, I have found
> that consistency of the stool can matter. If it is too firm, try taking
> Fiber Gummies or Fiber and some other form to loosen your stool lab so it
> doesn't push the wafer off. I offer this because I know what a pain it is
> to constantly have a bag with air in it on your belly.
>
> On Wed, Mar 11, 2020, 8:27 PM Michelle Kephart 
> wrote:
>
>> I got a colostomy almost one year ago, and I wish I would’ve done it
>> sooner.  I am 37 years old and 11 years post injury, C4/5 complete. I spent
>> the better part of the year trying to figure out why the wafer would not
>> stay on and nothing was in the bag. I finally figured out that it was
>> because of a lack of air in the bag. I found this website to be extremely
>> helpful with troubleshooting:
>> https://www.veganostomy.ca/ostomy-leaks-tips/
>>
>> I decided to get a colostomy because I was having more accidents and the
>> constant anxiety that I was about to have another accident was wearing me
>> down. I was afraid to vary my diet at all. Now that I have the colostomy, I
>> rarely think about it. Even when my colostomy leaks, it is so much easier
>> to clean up. It doesn't get on my chair, I don't have to sit on the mess,
>> and I don't have to worry about poop getting on my skin sores when I have
>> them. If we catch the leak early enough and it doesn't get on my clothes, I
>> don't even have to get out of my chair to clean up. And since we solved the
>> mystery of why my bag was leaking, I have not had a single accident. I also
>> love that my life is not dictated by the schedule of my bowel program. My
>> skin sores healed up pretty well after I stopped sitting in my shower chair
>> for so long.
>>
>> Like Aaron said, sex is pretty doable with the colostomy. Go into it with
>> a fresh empty bag. In fact, I think it's better because I'm no longer
>> worried about pooping on my husband (that's never happened, but it would be
>> mortifying)! And yes, the farts are audible. I also like to keep a blanket
>> or something else on my stomach that will muffle it. Or I blame the dog :)
>>
>>
>>
>>
>>
>> On Wed, Mar 4, 2020 at 5:51 PM Aaron Mann  wrote:
>>
>>> C4/5 | 32 years post| 47yr old
>>>
>>> I got my colostomy ~ 20 years post. At the time I got it done I was
>>> going in for my 2nd flap surgery. I developed a small wound on my bottom
>>> that progressed to a stage 3 quickly. The problem I was having is that I
>>> would have an accident, not be thoroughly cleaned on/in the wound, and just
>>> spending 1-2 hours every other day on a hard shower chair. These factors
>>> make it near impossible to prevent fecal infections in any type of wound.
>>> Once that happens the healing process is greatly hampered. The plastic
>>> surgeon said that I had to do everything I could to prevent future skin
>>> breakdown. He asked me about a colostomy and it took me two months to
>>> decide.
>>>
>>> Post colostomy:
>>> I really wish I'd done this sooner. Granted having a colostomy when
>>> younger would have 

Re: [QUAD-L] Colostomy - Yea or Nay?

[Michelle Kephart]

I got a colostomy almost one year ago, and I wish I would’ve done it
sooner.  I am 37 years old and 11 years post injury, C4/5 complete. I spent
the better part of the year trying to figure out why the wafer would not
stay on and nothing was in the bag. I finally figured out that it was
because of a lack of air in the bag. I found this website to be extremely
helpful with troubleshooting: https://www.veganostomy.ca/ostomy-leaks-tips/

I decided to get a colostomy because I was having more accidents and the
constant anxiety that I was about to have another accident was wearing me
down. I was afraid to vary my diet at all. Now that I have the colostomy, I
rarely think about it. Even when my colostomy leaks, it is so much easier
to clean up. It doesn't get on my chair, I don't have to sit on the mess,
and I don't have to worry about poop getting on my skin sores when I have
them. If we catch the leak early enough and it doesn't get on my clothes, I
don't even have to get out of my chair to clean up. And since we solved the
mystery of why my bag was leaking, I have not had a single accident. I also
love that my life is not dictated by the schedule of my bowel program. My
skin sores healed up pretty well after I stopped sitting in my shower chair
for so long.

Like Aaron said, sex is pretty doable with the colostomy. Go into it with a
fresh empty bag. In fact, I think it's better because I'm no longer worried
about pooping on my husband (that's never happened, but it would be
mortifying)! And yes, the farts are audible. I also like to keep a blanket
or something else on my stomach that will muffle it. Or I blame the dog :)





On Wed, Mar 4, 2020 at 5:51 PM Aaron Mann  wrote:

> C4/5 | 32 years post| 47yr old
>
> I got my colostomy ~ 20 years post. At the time I got it done I was going
> in for my 2nd flap surgery. I developed a small wound on my bottom that
> progressed to a stage 3 quickly. The problem I was having is that I would
> have an accident, not be thoroughly cleaned on/in the wound, and just
> spending 1-2 hours every other day on a hard shower chair. These factors
> make it near impossible to prevent fecal infections in any type of wound.
> Once that happens the healing process is greatly hampered. The plastic
> surgeon said that I had to do everything I could to prevent future skin
> breakdown. He asked me about a colostomy and it took me two months to
> decide.
>
> Post colostomy:
> I really wish I'd done this sooner. Granted having a colostomy when
> younger would have presented very uncomfortable life situations. I tell you
> though, not having to do bowel programs is a HUGE plus. No more training
> caregivers how to put suppositories in me, stick their finger up my bum
> checking to see if I'm done. Not to mention the embarrassing times of
> having an accident. Some so bad that crap is EVERYWHERE. Being cleaned up
> like a 1 year old. Completely and totally ashamed that someone has to clean
> you up. It is so much easier to have a bag and/or wafer change.  Travel is
> more convenient. No need for dragging around a shower chair.
>
> Now, few downsides, some more important than others depending on how well
> you handle things. If you don't keep regular with the right diet, your
> stool can be too firm and push the right off your belly. Too loose and
> you'll be changing more often. It has taken me years to figure out on my
> own the right combination of fiber gummies to take daily to keep it just
> right. Let's talk gas. Now farts are funny at any age. You must have a
> sense of humor if you have a colostomy. There is no longer the built in
> muffler of sitting on a cushioned seat. Make a fart sound with your lips
> right now. That is what colostomy farts sound like. I carry a hoodie on my
> lap for two purposes; I can bundle it as a makeshift muffler over my bag on
> gassy days or wear it when cold. Sex. Have your attention now? Spontaneity
> will present some new barriers to overcome. Best answer is be open to
> adaptation regarding your colostomy.  If I plan on having fun with my wife
> or whoever (just kidding hon), then I have a wide ace wrap to put around my
> belly to cover the belly bag. It has worked so far for those intimate bumps
> n rubs.
>
> Please ask questions, best thing us old quads can do is impart our ?wisdom?
>
> Aaron Mann
>
>
> On Wed, Mar 4, 2020 at 3:29 PM Danny Espinoza 
> wrote:
>
>>
>> I've got one but as a result of my seat belt cutting in to me and haven't
>> known anything else.
>>
>> -Danny
>>
>>  Original Message 
>> Subject: [QUAD-L] Colostomy - Yea or Nay?
>> From: "Nancy Gillen" 
>> Date: Wed, March 04, 2020 7:17 am
>> To: 
>>
>>
>> Nancy Gillen 
>> 9:58 AM (18 minutes ago)
>> I am seriously thinking of getting a colostomy. If you have a colostomy,
>> will you share your experiences/opinions. Need  input.
>>
>> Thanks,
>> Nan
>>
>>
>>
>>

Re: [QUAD-L] Pressure sores

[Michelle Kephart]

Has anyone ever used an alternating pressure pad seat cushion on their
chair? I’ve seen them advertised, but I wonder if they’re practical or
affordable.


On Tue, Apr 16, 2019 at 5:49 PM Aaron Mann  wrote:

> Currently dealing with the whole wound issue as well. Chocolate Equate w/
> breakfast is my favorite and Protien2o a couple times a day is my routine.
> Much like poajoan (not sure of your name) I use a wedge under my knees at
> night to get pressure off of my lower buttocks and thighs.  I'm also
> getting my new chair pressure mapped, so I can figure out the optimal
> upright and "lay back offload" positions.  I know in my last chair I could
> tilt back 25-30 degrees and I'd have near zero pressure on my entire rear
> and thighs. (great napping position)
>
> My main issue is that I work a full-time job, play with the kiddo, and
> want to play my MMO online for a couple hours each day.  Every Dr says "get
> off your butt every 15-30 minutes for 15-30 minutes", who can live any
> quality of life that way. Between the hundreds of thousand of us who cannot
> lift ourselves off our butts, we should be able to devise a seating
> solution or device we can afford to allow for a quality of life we deserve
> as well.
>
>
> Aaron Mann
>
>
> On Thu, Mar 28, 2019 at 6:24 PM Eric Olson  wrote:
>
>> If your going to do the protein thing, I suggest buying a hand-held stick
>> blender and buying whey protein in bulk.  You can get it in 2-5 pound
>> containers.  My problem is to much of an appetite.
>>
>>
>> 
>>  Virus-free.
>> www.avast.com
>> 
>> <#m_-7218583099171156198_m_-706134421665987736_DAB4FAD8-2DD7-40BB-A1B8-4E2AA1F9FDF2>
>>
>> On Thu, Mar 28, 2019 at 6:08 PM Eric Olson  wrote:
>>
>>> I always advise anyone with a sore to first and foremost, stay off of
>>> it.  I know staying in bed sucks but you have to for the area to heal.
>>> Where are the sores on your hips?  If there not from sitting, maybe the
>>> pressure is from whatever your sleeping on.  I think you should see a wound
>>> care doctor.  I have heard good things about a wound vac.  Whenever I'm on
>>> my back, I have my caregivers pull my knees up towards my head and out to
>>> the side.  Fold a pillow in half under each knee for support.  It makes me
>>> look like I'm pretending to be a frog. It takes pressure off the bottom of
>>> your butt.  I use a roho cushion and sleep on a memory foam mattress.  So
>>> far, I've been alright with this combo as far as sores goes.  Now if I
>>> could just get the rest of my shit straight.  LOL
>>>
>>>
>>> 
>>>  Virus-free.
>>> www.avast.com
>>> 
>>> <#m_-7218583099171156198_m_-706134421665987736_m_-1417834397646014598_DAB4FAD8-2DD7-40BB-A1B8-4E2AA1F9FDF2>
>>>
>>> On Thu, Mar 28, 2019 at 3:36 PM Greg  wrote:
>>>
 I eat Protein Bars 20g.
 My helper also makes Peanut Butter Cookies, using Peanut Butter /
 Chocolate Protein Powder instead of Flower. Tastes great.
 Also drink lots of water.
 And see a Wound Doctor if you are not. It must be cleaned and debrided
 often.

 Greg

 On 3/28/2019 1:25 PM, Danny Hearn wrote:

 Judy..if you don't eat a lot try Protein Shakes. There are many
 types and flavors such as Boost- these are excellent for this. Dan H.***

 On Thursday, March 28, 2019, 3:19:28 PM CDT, Judy Meredith
   wrote:


 Hi all,
 It has been awhile since I have been on this list due to my e-mails
 bouncing or something. However I finally got a new address and I hope some
 of you remember me.
   I have a question for all of you. I have 3 pressure sores, one on
 each hip that are not bad but one on my butt that has tunneled about 6
 centimeters but is almost closed. Any suggestions? I have been told that I
 need protein and to gain weight but I am not able to eat a lot because I
 feel nauseous and depressed. Please any advice would be appreciated.

 Meredith

Re: [QUAD-L] Colostomy

[Michelle Kephart]

Thank you so much, Aaron and Greg!  I think I’m going to do it. I’m waiting
right now to see if my insurance will pre-approve the procedure.  I’m
nervous but also excited to not have to keep such a strict schedule. I very
much appreciate your tips and tricks!

Michelle


On Wed, Feb 27, 2019 at 11:56 AM Aaron Mann  wrote:

> Quad of 29 years, I've had my colostomy for 5 years now. Wish I'd done it
> sooner.
> Upsides:
> No hour(s) long bowel program
> Simple bag change in minutes anywhere, when needed
> No issues getting stool in any skin abrasions on bottom (causes major
> issues)
> Greatly reduced chance "accidents" requiring a complete change of clothing
> and shower
> It's reversible if you really don't like the life of having a colostomy
>
> Downsides:
> "Farts' are louder because it's out of your belly rather than being
> "muffled" under your rear
> Needing to "vent" air from the bag (can be difficult depending on your
> functional abilities)
> Dealing with the "colostomy bulge" in between bag replacements ( I wear
> loose clothing to help hide)
> "Blowouts" can be messy (I've found the right amount of fiber to add to my
> diet to keep consistency "just right")
>
>
> I've got a few tips and tricks to share if you go with the colostomy route.
>
>
> Aaron Mann
>
>
> On Wed, Jan 23, 2019 at 7:40 PM Michelle Kephart <
> michelle.keph...@gmail.com> wrote:
>
>> Hi everyone,
>>
>> I’m usually pretty quiet on this list, but I’m looking for a wide variety
>> of input about colostomies and I hope you all can help me. I’m wondering if
>> it’s the right option for me. Does anyone on here have a colostomy? If so,
>> what do you think about it? If you previously did a bowel program, which
>> would you prefer (a bowel program or a colostomy)?
>>
>> Thanks for your input!
>>
>> Michelle
>>
>>

[QUAD-L] Colostomy

[Michelle Kephart]

Hi everyone,

I’m usually pretty quiet on this list, but I’m looking for a wide variety
of input about colostomies and I hope you all can help me. I’m wondering if
it’s the right option for me. Does anyone on here have a colostomy? If so,
what do you think about it? If you previously did a bowel program, which
would you prefer (a bowel program or a colostomy)?

Thanks for your input!

Michelle

Re: [QUAD-L] Driving

[Michelle]

I'm having the same problem, Greg. Great idea using a bar! We've been focused 
on trying to dampen the steering joystick somehow, so it's not so sensitive. I 
would love to hear if there are any solutions out there!

Michelle 


> On Apr 26, 2018, at 9:00 AM, Greg <g...@eskimo.com> wrote:
> 
> I’m taking driving lessons. I tried a single joystick, but it was just too 
> sensitive. I’m C4/5. Now I’m trying a duel joystick. 1 gas/brake, 1 
> left/right. I do ok going slow, but hitting bumps makes my arm move, causing 
> the van to rock, which makes my arm move more, making the van rock more etc.
> 
> I was thinking of how I would design a driving system. You know on a Hang 
> Glider, the bar that goes across. Tri pin both hands on 1 bar. Gives you 
> great balance, both hands doing the same thing. This just seems so simple and 
> easier to use.
> 
> Anyone ever hear of a system like this?
> 
> Greg

[QUAD-L] Fwd: ADAPT Message: Take Action

[Michelle]

> Date: June 26, 2017 at 5:56:16 AM MDT
> 
> Subject: Re: ADAPT Message: Take Action
> 
> Good morning everyone,
> Corrected links below are provided by Bruce Darling at ADAPT that are 
> connected to the previous e-mail:
> Please use these links.
> 
> Link to the Call to Action and Action/Organizer List:
> http://adapt.org/bcra-an-attack-on-the-disabled-americans-call-to-action/
> 
> Toolkit to #ADAPTandRESIST to #SaveMedicaid
> http://adapt.org/toolkit-to-adaptandresist-to-savemedicaid/
> 
> Press Release Template:
> http://adapt.org/sample-press-release-to-save-medicaid/
> 
> ADAPT Activist Handbook:
> http://adapt.org/the-adapt-activist-handbook/
> 
> 
>>  If you know anyone in the states listed below, please have them call their 
>> Senators and ask them to vote "No!" on Medicaid Cuts.  Zip codes matter now 
>> as you may be disregarded if you are not a resident in a Senator's state.
>> 
>> There will never be in the next 25 years a greater need for your advocacy. 
>> (Senator Casey (PA) staff--conference call 6/23.
>> 
>> Americans with Disabilities are at a pivotal point in our history.  
>> Medicaid, which pays for the assistance many in our community need to have 
>> life and liberty, is under attack.  Republicans have decided that, to fund a 
>> tax cut for the wealthy, they will devastate the services that disabled and 
>> elderly Americans rely on.  These services include the medications and 
>> medical care we need to survive, the assistive devices – like wheelchairs 
>> and ventilators – we need to live our lives, and the funds to pay attendants 
>> to help us with our daily needs.
>> 
>> The attack on Medicaid is an attack on Disabled Americans and our very lives 
>> because, if these cuts go through, there is no question that Disabled 
>> Americans will die.
>> Although Republicans claim that they are addressing problems with Obamacare, 
>> this attack on Medicaid has literally nothing to do with Obamacare, 
>> President Obama, or his legacy.  To be clear, Medicaid was established in 
>> 1965 – when Barrack Obama was just three years old.
>> 
>> This legislation doesn’t reform Medicaid.  If Republicans truly wanted to 
>> reform Medicaid, they would have worked with the Disability Community to 
>> implement the reforms we’ve been suggesting for decades.  Instead of 
>> expanding consumer control and demedicalizing services, they chose to cap, 
>> cut, and gut the program.
>> 
>> Despite every effort to reason with the Republicans who control our 
>> government, they are intent on pushing this legislation forward with as 
>> little public review as possible. They simply want to avoid having to 
>> explain their actions to the American people.  They know that they were not 
>> voted into office to devastate the lives of Americans with disabilities.  
>> They know that if the public understood what was happening – America would 
>> tell them to stop.
>> With our lives and liberty on the line, it has become clear that others will 
>> not win this fight for us.  They have tried.  If Disabled Americans are 
>> going to live and have liberty, it is up to us to fight for it ourselves.
>> 
>> We have begun the fight.  ADAPT staged a die-in our nation’s capital.  
>> Americans watched in shock as disabled protesters were dragged away and 
>> silenced.  These ADAPTers sent a powerful message, but Senate Republicans 
>> continue to press forward with their attack.  Senate Republicans have made 
>> it clear that they intend to steal the independence of Disabled Americans 
>> before they leave Washington to celebrate the Fourth of July and their own 
>> freedom and independence.
>> It is time for the entire Disability Community to TAKE ACTION across our 
>> nation and demand that Senate Republicans stop their war on the Disability 
>> Community.  ADAPT, NCIL and others in the Disability Community are 
>> coordinating this effort.
>> 
>> JOIN THE FIGHT!  This week GO to the offices of Senate Republicans and 
>> CONFRONT THEM.
>> BE LOUD!  Polite and thoughtful hasn’t worked.
>> BE ANGRY!  This is about our LIVES and our FREEDOM as Disabled Americans.
>> MAKE HISTORY!  We are not just fighting for ourselves.  We are fighting for 
>> our children, and we are fighting for the generations of disabled Americans 
>> who will follow us. Their lives and liberty are depending on us.
>> Be RELENTLESS!
>> 
>> Actions are being planned in the following locations.  To connect with an 
>> action, contact the individuals listed for that site.  If you would like to 
>> coordinate an action, contact Bruce Darling at bdarl...@cdrnys.org or 
>> 585-370-6690.
>> 
>> LIST IN PROGRESS…
>> 
>> ARIZONA--Call for information
>>   Phoenix
>>   Wednesday, June 28
>>   Vicki Cuscino, 215-266-1150, vic...@directilc.org
>>   Anastasia Bacigalupo, 805-448-4941, anasta...@wcil.org
>> 
>> COLORADO--CAll for Information
>>   Denver
>>   Tuesday, June 27
>>   Dawn Russell, 303-884-1471, cdawnrussell1...@gmail.com
>>   Josh Winkler, 

Re: [QUAD-L] Donating to organizations

[Michelle]

I like Canine Companions for Independence 

https://www.kintera.org/site/c.cdKGIRNqEmG/b.8629853/k.C13C/Donate/apps/ka/sd/donor.asp?c=cdKGIRNqEmG=8629853=9sLHIUNzF8KQI4PCK7KNI0NMKsIUK0OFLeIVJ3OCK9KPL2PLLwG


> On Apr 28, 2016, at 7:47 PM, Eric Olson  wrote:
> 
> Forgot these
> https://www.charitynavigator.org/
> http://www.givewell.org/
> 
>> On 4/28/2016 5:13 PM, Gmail wrote:
>> Does anybody know of a reputable organization that I could donate to which 
>> the proceed rations very high to the recipients?
>> Or a link that shows how it's broken down?
>> Bobbie
>> 
>> Smile Everyday
> 
> 
> ---
> This email has been checked for viruses by Avast antivirus software.
> https://www.avast.com/antivirus
> 

Re: [QUAD-L] Quick poem

[Michelle Harkness]

How can I be removed from this email list?

Thanks,
Michelle

Sent from my iPhone

> On Oct 13, 2015, at 3:59 PM, nichole rohling <zoocr...@windstream.net> wrote:
> 
> Yes, 5, 8, 9, 10, 11
>  
> I’m blessed because I can see all of those being very possible.
>  
> add
> got stuck outside in your chair and no one to help
> had to call someone in the middle of the night to get you on a shower chair 
> because you had diarrhea
> sat at home because van door is broken J
>  
> Nicki
>  
> From: Larry Willis [mailto:lwillis82...@gmail.com] 
> Sent: Tuesday, October 13, 2015 2:23 PM
> To: quad-list@eskimo.com
> Subject: Fwd: [QUAD-L] Quick poem
>  
> More quad quickies to meditate. Feel free to contribute.
>  
> Have you ever
> 1. Not eaten for a long time because you dread the bowel ritual.
> 2. Not brushed your teeth because of the hassle.
> 3. Worn dirty clothes because no one would/could do the laundry.
> 4. Had chips for a meal because there was nothing else that you could fix.
> 5. Sat for hours after your chair/van broke down.
> 6. Had a bowel/bladder accident in a public place with no way to 
> exit.church, theater, class, work.
> 7. Fallen from your chair while home alone.
> 8. Become choked or congested and unable to cough.
> 9. Been cursed, belittled by a caregiver.
> 10. Had a public confrontation with a stranger.
> 11. Gone over a week without a bowel movement.
> 12. Prayed to God that you won't wake up.
> 13. Been so depressed you lose all interest in living.
> 14. Wrecked your van.
> 15. Been stuck at the bottom of the stairs with no offer of help.
> Larry Willis
> Retired and proud of it
>  
> 
> Begin forwarded message:
> 
> From: Gmail <bobbiehumphre...@gmail.com>
> Date: October 13, 2015 at 1:55:19 PM EDT
> To: Larry Willis <lwillis82...@gmail.com>
> Cc: "quad-list@eskimo.com" <quad-list@eskimo.com>
> Subject: Re: [QUAD-L] Quick poem
> 
> I do.  Bobbie
> 
> Smile Everyday
> 
> On Oct 13, 2015, at 1:28 PM, Larry Willis <lwillis82...@gmail.com> wrote:
> 
> The opening line of your poem is a grabber. How many of us on here actually 
> do that? I do. Often.
> 
> Larry Willis
> Retired and proud of it
>  
> 
> Begin forwarded message:
> 
> From: Gmail <bobbiehumphre...@gmail.com>
> Date: October 13, 2015 at 12:21:47 PM EDT
> To: Larry Willis <lwillis82...@gmail.com>
> Cc: "quad-list@eskimo.com" <quad-list@eskimo.com>
> Subject: Re: [QUAD-L] Quick poem
> 
> Wow, right on the mark. Especially as the years and decades pass by.
>  
> It's quite indescribable, but you came pretty fucking close. 
> Bobbie 
>  
> 
> 
> On Oct 13, 2015, at 6:56 AM, Larry Willis <lwillis82...@gmail.com> wrote:
> 
> Wow, Ron, my feelings exactly. Exactly.
> 
> Larry Willis
> Retired and proud of it
>  
> 
> Begin forwarded message:
> 
> Resent-From: quad-list@eskimo.com
> From: RONALD L PRACHT <r.pra...@sbcglobal.net>
> Date: October 13, 2015 at 3:06:14 AM EDT
> To: Quad-list Post <quad-list@eskimo.com>
> Subject: [QUAD-L] Quick poem
> Reply-To: RONALD L PRACHT <r.pra...@sbcglobal.net>
> 
> Quad Life
>  
> Every night when I go to bed, I pray to god to wake up dead.
>  
> As morning comes, I always get scared, because another day must be beared. 
>  
> People say to look above, but all I get is abused and shoved.
>  
> Life took a young man with hopes and dreams, and reduced him to nothing as so 
> it seems.
>  
> I try as I may to still be a man, during the bowell routines and all the hell 
> that quad life demands.
>  
> Everyones forgotten who I was , and treat me like shit just because. 
>  
> I started strong in this game, but when I think...who is to blame?
>  
> Was I just another victim of circumstance or from the beginning did I have no 
> chance?
>  
> As the years go by it means less and less because I am still human 
> nevertheless.
>  
>  
>  
>  
>  
> Ron 

Re: [QUAD-L] Quick poem

[Michelle Harkness]

I just joined the list maybe a month ago. I have dark days, but not that dark. 
I wasn't looking for something like this I guess. I understand life happens, 
but I'm a positive person who focuses on the positive, even if I can't help 
myself with basic bodily functions.  Everyone has struggles, it's called life. 
Some have more then others and I get that. I don't want my email blown up with 
crap like this. We still have choices. We can choose to be a victim or choose 
to direct our own lives. You choose how you respond to situations.  If anyone 
wants to have an issue with me wanting to leave because of this, that's sad, 
because you don't need to waste your time over me not agreeing with you. I just 
wanted an out and you can all go on your merry way. I haven't even had time to 
respond to anything other then this, so it's not like you'll miss me.  Thanks 
for the out Dan - I'll make sure and deposit the blood...

Sent from my iPhone

> On Oct 13, 2015, at 5:08 PM, Danny Hearn <ddh...@sbcglobal.net> wrote:
> 
> You can't be removed.this list is blood in blood out !  LOL... 
> Seriously though you must write to quad-list requ...@eskimo.com to be 
> removed.  Dan H**
> 
> 
> 
> On Tuesday, October 13, 2015 5:02 PM, Michelle Harkness 
> <hotwheelsmiche...@gmail.com> wrote:
> 
> 
> How can I be removed from this email list?
> 
> Thanks,
> Michelle
> 
> Sent from my iPhone
> 
>> On Oct 13, 2015, at 3:59 PM, nichole rohling <zoocr...@windstream.net> wrote:
>> 
> 
> Yes, 5, 8, 9, 10, 11
>  
> I’m blessed because I can see all of those being very possible.
>  
> add
> got stuck outside in your chair and no one to help
> had to call someone in the middle of the night to get you on a shower chair 
> because you had diarrhea
> sat at home because van door is broken J
>  
> Nicki
>  
> From: Larry Willis [mailto:lwillis82...@gmail.com] 
> Sent: Tuesday, October 13, 2015 2:23 PM
> To: quad-list@eskimo.com
> Subject: Fwd: [QUAD-L] Quick poem
>  
> More quad quickies to meditate. Feel free to contribute.
>  
> Have you ever
> 1. Not eaten for a long time because you dread the bowel ritual.
> 2. Not brushed your teeth because of the hassle.
> 3. Worn dirty clothes because no one would/could do the laundry.
> 4. Had chips for a meal because there was nothing else that you could fix.
> 5. Sat for hours after your chair/van broke down.
> 6. Had a bowel/bladder accident in a public place with no way to 
> exit.church, theater, class, work.
> 7. Fallen from your chair while home alone.
> 8. Become choked or congested and unable to cough.
> 9. Been cursed, belittled by a caregiver.
> 10. Had a public confrontation with a stranger.
> 11. Gone over a week without a bowel movement.
> 12. Prayed to God that you won't wake up.
> 13. Been so depressed you lose all interest in living.
> 14. Wrecked your van.
> 15. Been stuck at the bottom of the stairs with no offer of help.
> Larry Willis
> Retired and proud of it
>  
> 
> Begin forwarded message:
> From: Gmail <bobbiehumphre...@gmail.com>
> Date: October 13, 2015 at 1:55:19 PM EDT
> To: Larry Willis <lwillis82...@gmail.com>
> Cc: "quad-list@eskimo.com" <quad-list@eskimo.com>
> Subject: Re: [QUAD-L] Quick poem
> I do.  Bobbie
> 
> Smile Everyday
> 
> On Oct 13, 2015, at 1:28 PM, Larry Willis <lwillis82...@gmail.com> wrote:
> The opening line of your poem is a grabber. How many of us on here actually 
> do that? I do. Often.
> 
> Larry Willis
> Retired and proud of it
>  
> 
> Begin forwarded message:
> From: Gmail <bobbiehumphre...@gmail.com>
> Date: October 13, 2015 at 12:21:47 PM EDT
> To: Larry Willis <lwillis82...@gmail.com>
> Cc: "quad-list@eskimo.com" <quad-list@eskimo.com>
> Subject: Re: [QUAD-L] Quick poem
> Wow, right on the mark. Especially as the years and decades pass by.
>  
> It's quite indescribable, but you came pretty fucking close. 
> Bobbie 
>  
> 
> On Oct 13, 2015, at 6:56 AM, Larry Willis <lwillis82...@gmail.com> wrote:
> Wow, Ron, my feelings exactly. Exactly.
> 
> Larry Willis
> Retired and proud of it
>  
> 
> Begin forwarded message:
> Resent-From: quad-list@eskimo.com
> From: RONALD L PRACHT <r.pra...@sbcglobal.net>
> Date: October 13, 2015 at 3:06:14 AM EDT
> To: Quad-list Post <quad-list@eskimo.com>
> Subject: [QUAD-L] Quick poem
> Reply-To: RONALD L PRACHT <r.pra...@sbcglobal.net>
> Quad Life
>  
> Every night when I go to bed, I pray to god to wake up dead.
>  
> As morning comes, I always get scared, because another day must be beared. 
>  
> People say to look above, but all I g

Re: [QUAD-L] Old sci

[Michelle]

Thank you, Don :)

-Michelle 



 On Aug 8, 2015, at 9:01 PM, Don Price donpric...@yahoo.com wrote:
 
 
 I'm writing this for any new quads on the list because I see things 
 differently than most of those who have responded to this post.
 
 I will be 33 years post injury on August 15th--C5-6 complete quad due to 
 diving accident. At this time I would love nothing more than to someday be 
 the oldest living quad. I suppose I can say that because I don't have the 
 debilitating pain or issues many on this list speak of. I'm not saying this 
 to undermine their struggles--I know I'm very lucky.
 
 I get up every day looking forward to the adventure ahead. I am thankful for 
 every moment I have and I try to radiate that positive vibe to every person I 
 meet. I don't always succeed, and I have bad days just like everybody else. 
 Still, my greatest fear is dying too soon, not dying too old. 
 
 As others have said here: they were fine living as quads for years and then 
 things just fell apart. I know that is a possibility for me, too. That 
 realization adds even greater urgency to every day--I want to experience 
 everything I possibly can while I'm healthy.
 
 So, for any new quads on this list, let me be testimony that life as a quad 
 can be full, happy, active and rewarding, even after 33 years. I only speak 
 for myself, but I know I'm not alone.
 
 I wish you all health and happiness,
 
 Don P 
 C5-6, 33 yrs post
 Tempe, AZ

Re: [QUAD-L] lyrica/scoilisos

[Michelle]

I was on lyrica for nerve pain right after my injury occurred. It worked well 
for me, but I wanted to stop as many medications as possible. I remember lyrica 
being one of the hardest meds to stop. It took a couple of tries. I reduced the 
dose slowly. A few times I needed to increase the dose because the pain would 
return. So I stayed at the higher dose for about a month, then reduced the dose 
again. It took time, but eventually I stopped taking it and I haven't needed it 
since then. 

Michelle 



 On Jun 15, 2015, at 2:32 PM, John S. alcibiat...@yahoo.com wrote:
 
 The doctor should tell you how to get off Lyrica.  Cut your  dosage every 21 
 days until your off. After  another 21 days  you're clean. Determination and 
 self discipline are the keys. 
 Good Luck and Best wishes, 
 John s.
 
 
  Original message 
 From: Fragile swl...@gmail.com 
 Date: 06/15/2015 8:34 AM (GMT-05:00) 
 To: diannal...@aol.com 
 Cc: quad-list@eskimo.com 
 Subject: Re: [QUAD-L] lyrica/scoilisos 
 
 I've been on Lyrica for several years.  Started taking it to try and
 relieve spinal cord injury related nerve pain.  It didn't help.  But,
 it did help with nausea.  It's caused weight gain, dry mouth and
 lethargic.  I've tried to stop taking it a few times, but the
 withdrawal is pretty bad.
 
 On 6/14/15, diannal...@aol.com diannal...@aol.com wrote:
  Has anyone tried Lyrica for SCI pain? It really helped my stiffness and
  tightness in my back/chest. Dealing with scoliosis now. It sure is getting
  hard to deal with. Constantly getting my position changed. Pain in my spine.
  Anyone else having this problem? (developed from 25 yrs in this chair)
  Dianna
 
 

Re: [QUAD-L] Quad Belly

[Michelle Kephart]

I'm curious about this girdle too. What is it exactly? Would it bother an
SP catheter? I wore a binder for almost a year until it started to irritate
my skin and cause more problems.

Michelle


On Mon, Apr 6, 2015 at 9:29 PM, diannal...@aol.com wrote:

 How in the world do you get a girdle on? That's gotta take a lot of
 turning  tugging. What do you women think of Spanx? Just as hard?
 dianna

 I am definitely happy that I’m a female if I have to be a quad! That is
 why I wear “a girdle”, so I don’t have to have an apparent quad gut. J. I
 was not happy with binders as they would roll and pinch and cause more
 problems than it cured, and the body suit that I wear is smooth and doesn’t
 hurt my skin.
 We can’t really Eliminate our bellies, because it is just those darned
 intestines refusing to stay in place inside our bodies when we sit up. But
 we can force them back inside. LOL
 Joan





 -Original Message-
 From: Joan Anglin poaj...@sbcglobal.net
 To: 'Larry Willis' lwillis82...@gmail.com; quad-list 
 quad-list@eskimo.com
 Sent: Mon, Apr 6, 2015 12:23 pm
 Subject: RE: [QUAD-L] Quad Belly

   I am definitely happy that I’m a female if I have to be a quad! That is
 why I wear “a girdle”, so I don’t have to have an apparent quad gut. J. I
 was not happy with binders as they would roll and pinch and cause more
 problems than it cured, and the body suit that I wear is smooth and doesn’t
 hurt my skin.
 We can’t really Eliminate our bellies, because it is just those darned
 intestines refusing to stay in place inside our bodies when we sit up. But
 we can force them back inside. LOL
 Joan

  *From:* Larry Willis [mailto:lwillis82...@gmail.com
 lwillis82...@gmail.com?]
 *Sent:* Monday, April 06, 2015 7:01 AM
 *To:* quad-list@eskimo.com
 *Subject:* Fwd: [QUAD-L] Quad Belly

  Same here, Greg. It makes me miserable and even hard to breathe. It
 feels like my food sticks where my gut folds. I hate it but don't know how
 to eliminate it, other than starvation.

 Larry Willis
  Retired and proud of it


 Begin forwarded message:

  *Resent-From:* quad-list@eskimo.com
 *From:* greg g...@eskimo.com
 *Date:* April 5, 2015 at 11:09:34 PM EDT
 *To:* quad-list@eskimo.com
 *Subject:* *[QUAD-L] Quad Belly*

  After my stoma my quad belly went down a lot, but it sure came back.
 Bigger than ever.
 Even a binder does nothing for it.
 When laying on my back, my stomach looks pretty flat. But once I sit up...
 it just flop out.
 It actually gets uncomfortable.
 Exercising really does nothing for that area, since I have no muscle
 control there.
 I am trying to twist and do what bending forward that I can. Diet does not
 seem to help, the rest of my body it average.
 Greg

Re: [QUAD-L] air mattress

[Michelle Kephart]

Mine came through Medicare as a treatment for my current sores. It makes
about as much noise as a fish tank.



On Sun, Feb 8, 2015 at 11:23 AM, Fragile swl...@gmail.com wrote:

 I'd love to find one that didn't make a ton of noise, mind if I ask where
 you got yours?

 On Sun, Feb 8, 2015 at 7:50 AM, Michelle Kephart 
 michelle.keph...@gmail.com wrote:

 I just got an air mattress this week. It's an Invacare Probasics Satin
 Air APM2. It's a low air loss mattress with alternating pressure. There are
 not many settings. The low air loss is always on, the alternating pressure
 can be turned on or off, and there's a dial for firmness. That's it - it's
 very simple. It's quiet and finally I can sleep without any excruciating
 pain from my bed sores. I can't say anything about how long it will last,
 but it's been a huge relief so far. I guess time will tell.


 On Sun, Feb 8, 2015 at 8:28 AM, Fragile swl...@gmail.com wrote:

 I'm on my 2nd one.  The 1st one Worked very well for a couple of years,
 it was a Genesis deluxe made by roscoe medical.  But, it stopped holding
 air after a couple of years.  I bought it on Amazon for about $350.

 I bought another one, an Invacare microAIR on eBay.  Been using it for
 about a month.  It also works very well, a lot more settings/options.  The
 only downside, it is quite a bit louder than the Genesis deluxe.

Re: [QUAD-L] air mattress

[Michelle Kephart]

I just got an air mattress this week. It's an Invacare Probasics Satin Air
APM2. It's a low air loss mattress with alternating pressure. There are not
many settings. The low air loss is always on, the alternating pressure can
be turned on or off, and there's a dial for firmness. That's it - it's very
simple. It's quiet and finally I can sleep without any excruciating pain
from my bed sores. I can't say anything about how long it will last, but
it's been a huge relief so far. I guess time will tell.


On Sun, Feb 8, 2015 at 8:28 AM, Fragile swl...@gmail.com wrote:

 I'm on my 2nd one.  The 1st one Worked very well for a couple of years, it
 was a Genesis deluxe made by roscoe medical.  But, it stopped holding air
 after a couple of years.  I bought it on Amazon for about $350.

 I bought another one, an Invacare microAIR on eBay.  Been using it for
 about a month.  It also works very well, a lot more settings/options.  The
 only downside, it is quite a bit louder than the Genesis deluxe.

Re: [QUAD-L] Amazon

[Michelle Kephart]

Hi everyone,

I can't resist putting in a little plug here. If you go through
smile.amazon.com Amazon will donate to the charity of your choice every
time you buy something, at no extra cost to you. My charity is Canine
Companions for Independence (I have one of their amazing dogs). Everything
is exactly the same as the regular Amazon site, you just start with a
different web address.

Bobbie, I hope you were able to solve your problem. Their site usually
works great for me.



On Wed, Jan 28, 2015 at 6:58 AM, Larry Willis lwillis82...@gmail.com
wrote:

 Wow, Bobbie, Amazon is usually perfect. I would close the account and open
 a new one. Barnes Noble sells books etc, but I don't think anything really
 compares to Amazon. (Except maybe Sears Roebuck in 1920) Btw, I live within
 spitting distance of a monstrous Amazon distribution center. It is the main
 employer in this town.

 Sent from my iPad

 Begin forwarded message:

 *Resent-From:* quad-list@eskimo.com
 *From:* Danny Espinoza da...@immortaldesigns.co
 *Date:* January 27, 2015 at 10:54:25 PM EST
 *To:* Gmail bobbiehumphre...@gmail.com, quad-list 
 quad-list@eskimo.com
 *Subject:* *RE: [QUAD-L] Amazon*

 Use this link to change your password Password reset
 https://www.amazon.com/ap/forgotpassword?_encoding=UTF8openid.assoc_handle=usflexopenid.claimed_id=http%3A%2F%2Fspecs.openid.net%2Fauth%2F2.0%2Fidentifier_selectopenid.identity=http%3A%2F%2Fspecs.openid.net%2Fauth%2F2.0%2Fidentifier_selectopenid.mode=checkid_setupopenid.ns=http%3A%2F%2Fspecs.openid.net%2Fauth%2F2.0openid.ns.pape=http%3A%2F%2Fspecs.openid.net%2Fextensions%2Fpape%2F1.0openid.pape.max_auth_age=0openid.return_to=https%3A%2F%2Fwww.amazon.com%2Fgp%2Fcss%2Faccount%2Fforgot-password%2Femail.html%3Fie%3DUTF8%26*Version*%3D1%26*entries*%3D0

 -Danny

   Original Message 
 Subject: [QUAD-L] Amazon
 From: Gmail bobbiehumphre...@gmail.com
 Date: Tue, January 27, 2015 6:22 pm
 To: quad-list quad-list@eskimo.com

 I have an account with Amazon. Every single time I checkout it takes me
 over an hour. Last night it took me 11/2 hours! Because they (or the
 computer) doesn't except my password. I end up needed to call Amazon and
 sit on the phone talking to many different specialist about my problem
 Does anybody know how I can rectify the problem?
 Or
 Dose anybody know of another company, on line, that is a lot lot Amazon?
 Bobbie

 Smile Everyday

Re: [QUAD-L] sure is quite

[Michelle Kephart]

Me too :)


On Tue, Oct 21, 2014 at 3:02 PM, Danny Hearn ddh...@sbcglobal.net wrote:

 I'm still here...I think lol


   On Tuesday, October 21, 2014 12:10 PM, Jim Lubin jlu...@eskimo.com
 wrote:


 did everyone get removed?

Re: [QUAD-L] A new Quad

[Michelle Kephart]

Death will come eventually. Live life while you have it! Everyday is
another opportunity to find happiness where ever you can.


On Sun, Jul 27, 2014 at 11:38 AM, diannal...@aol.com wrote:

 hard question!

 I had my accident at 21 yrs old 8 weeks into my rookie yr as a police
 officer. Had just met a great girl, things were going so good for me
 everything I touched turned to gold then ...boom Im a quad. The
 thing is though soon after my accident, I had a cousin involved in a car
 accident and died at 21, she was beautiful and worked at a hospital. I
 often asked myself if she had the chance to come back a quad or be dead
 which one she would choose




 -Original Message-
 From: RONALD L PRACHT r.pra...@sbcglobal.net
 To: quad-list quad-list@eskimo.com
 Sent: Sun, Jul 27, 2014 11:06 am
 Subject: Re: Fwd: [QUAD-L] A new Quad

   I had my accident at 21 yrs old 8 weeks into my rookie yr as a police
 officer. Had just met a great girl, things were going so good for me
 everything I touched turned to gold then ...boom Im a quad. The
 thing is though soon after my accident, I had a cousin involved in a car
 accident and died at 21, she was beautiful and worked at a hospital. I
 often asked myself if she had the chance to come back a quad or be dead
 which one she would choose

  Ron


On Sunday, July 27, 2014 8:50 AM, Larry Willis lwillis82...@gmail.com
 wrote:


  Wow. How fragile we are. How unpredictable and random life is. My heart
 aches for him.

 -- Forwarded message --
 From: *Gmail* bobbiehumphre...@gmail.com
 Date: Saturday, July 26, 2014
 Subject: [QUAD-L] A new Quad
 To: quad-list@eskimo.com


 My niece's Grandmother own's a very small company that she runs out of her
 basement, it is a payroll company in Saratoga, NY.
 She hired a man, about 3 weeks ago, in his mid-50's. He got up to go to
 the bathroom and passed out. When he did, he broke his neck and is now a C
 2,3 Quad.Bobbie

 Smile Everyday

Re: [QUAD-L] update /pain

[Michelle Kephart]

This happened to me once before when I needed a chest x-ray. I also had to
go to a different center that would help position me.


On Fri, Jul 25, 2014 at 6:47 PM, nichole rohling zoocr...@windstream.net
wrote:

 my understanding is they must accommodate you



 *From:* Larry Willis [mailto:lwillis82...@gmail.com]
 *Sent:* Friday, July 25, 2014 5:02 PM
 *To:* quad-list@eskimo.com
 *Subject:* Fwd: [QUAD-L] update /pain



 Said they would not help What kind of outfit is this, Danny? I believe
 a bit of publicity via a letter to the paper is in order. Let them explain
 themselves to the public.

 -- Forwarded message --
 From: *Danny Espinoza* da...@immortaldesigns.co
 Date: Friday, July 25, 2014
 Subject: [QUAD-L] update /pain
 To: Larry Willis lwillis82...@gmail.com, quad-list@eskimo.com

  They said they wouldnt help... I ended up changing to get it done at the
 hospital tomorrow instead of that imaging center.



 -Danny

  Original Message 
 Subject: Fwd: [QUAD-L] update /pain
 From: Larry Willis lwillis82...@gmail.com
 Date: Fri, July 25, 2014 4:23 am
 To: quad-list@eskimo.com

 Danny, don't they have a couple of aides who can lift you onto the table?
 That's what I always do. Whatever you do, I wish you all the best. Chronic
 pain can simply wipe you out. Good luck and God bless, my friend. Stay
 strong. Larry

 Sent from my iPad


 Begin forwarded message:

 *Resent-From:* quad-list@eskimo.com
 *From:* Danny Espinoza da...@immortaldesigns.co
 *Date:* July 24, 2014 at 10:10:19 AM EDT
 *To:* quad-list@eskimo.com
 *Subject:* *[QUAD-L] update /pain*

 So... I've been hurting consistantlly and when I spoke to my dr he felt a
 mass on my arm and ordered an ultrasound. We got the results back and they
 said they didnt see anything which my Dr then ordered an MRI for this
 friday. When I called I asked if they had a lift or if I needed to bring my
 own which they replied sorry we will not allow you to do that on our
 property. So now I'm going to attempt to bring a sliding board and
 hopefully they wont have an issue wiith it.
 I really hope we figure this out soon because the constant  and horrible
 pain is starting to get to me and constantly taking my Vicoprophen and
 barely being able to to get any rest/sleep because of the pain has got to
 be tough on my body...

 Has anyone else experienced extreme pain like this in their back and found
 an answer to the problem?
 I sleep in a fully adjustsble hospital bed with a rotating low air loss
 mattress and I do full range of motion twice per day. I'm really not sure
 whats going on and was curious if any other quads have had anything similar
 go on and what they did to get it to stop.



 -Danny

RE: [QUAD-L] Redman wheelchair opinions please

[Michelle Carston]

Let the BUYER BEWARE when dealing with Redman Power Chair!!  I purchased
their chair several years ago (paid in full in advance - Never Again!)
because it looked like a great chair from the website and full-page ads in
New Mobility.  LONG story short, I refused to accept the chair the day it
was delivered for many reasons, and was told there would be a restocking fee
of 20% - no problem.  We recovered a couple thousand dollars, then waited
and waited and waited only to receive court documents that the company was
filing bankruptcy.  Well, they're obviously STILL in business with over
$10,000 belonging to my family, which we will never see again.  

 

I wound up getting a Quickie 646 SE and LOVE it.  It doesn't stand, but oh
well.  It's exactly what I need.  If you want to stand badly enough, look
into standing frames!

 

If any of you missed my documentary on Discovery Health called Paralyzed and
Pregnant, it will air again on July 31st at 9:00 PM, August 1st at 12:00 AM,
and August 4th at 1:00 PM, all EST.  My son, Pierce, is now 21 months old,
runs around like a mad man getting into everything possible, and loves
chasing his Toy Poodle, Duke.  I am still suffering from orthostatic
hypotension, and continue to baffle the medical community.  I have posted
some pictures at:  www.myspace.com/michellecarston 

 

Good luck in your quest to find the right chair for you!

 

~Michelle Carston

C-5/6 from diving into a sandbar in the ocean in 1993

Mommy to Pierce Michael, born 10/25/05 via natural delivery

 

From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] 
Sent: Thursday, July 19, 2007 3:19 PM
To: [EMAIL PROTECTED]; quad-list@eskimo.com
Subject: Re: [QUAD-L] Redman wheelchair opinions please

 

i live in phoenix and took my 10 year old manual chair to them to fix it
under their 'lifetime' warranty.   they laughed and asked just how long i
thought a 'lifetime' warranty should last anyway.  that was just the tip of
an ugly iceberg.  better to avoid redman.

dave

 

 

 

In a message dated 7/18/2007 8:30:14 A.M. US Mountain Standard Time,
[EMAIL PROTECTED] writes:

Like W always says repairs, adjustments and service are the most important
thing in deciding on our chairs. I live in WI and have a redman standing
powerchair for three years now. But only seen a tech 2 times at $500.00+ a
visit. If it breaks down they will send parts but YOU have to get them on.
If you live near Arazona service might be better. I have trouble with not
enough tourqe when needed. There answer is to turn up acceleration. The
chair works good but service sucks here again your location is everthing.

 

Tom

c3-4 1998  


  _  


Ready for the edge of your seat? Check out
http://us.rd.yahoo.com/evt=48220/*http:/tv.yahoo.com/  tonight's top picks
on Yahoo! TV. 

 

Dave Visit My Home Page http://www.users.qwest.net/~daveoc/index.html 





  _  

Get a sneak peek of the all-new AOL.com
http://discover.aol.com/memed/aolcom30tour/?ncid=AOLAOF0002000982 .

[QUAD-L] Rolling Bowling

[Michelle Carston]

Title: 2 Michelle letter




  Greetings 
  Quad-List Members!
  
  
  
  My 
  name is Michelle Carston, and Isuffered a 
  spinal cord injury 13.5 yearsafter diving into a sandbar in the ocean, and 
  becominga C5 quad. 
  
  
  You may recognize my name from a documentary on 
  the Discovery Health Channel called Paralyzed  Pregnant. It was 
  about the birth of my son, Pierce, last fall. Pierce is a happy and 
  healthy 10.5 month old now and is becoming more mobile each day. 
  
  
  I wanted to tell you about the incredible 
  bowling product I've been using since 2002. It is nothing like those 
  stationary ramps you've seen before. I've tried them, and had no control 
  over the ball. The bowler that I'm referring to attaches to my 
  wheelchair and gives me total control over the ball. I can even put a 
  subtle or extreme left OR right hook on the ball. Even a person with no 
  arm use can now bowl!
  
  I bowl much betternowthan I did when 
  I was able-bodied and on a league. In fact, my high score is 181, which 
  is also the female world record. Even if you can't afford to purchase a 
  bowler, I will work with your local bowling center to obtain one. 
  
  
  Please checkout the IKAN Bowlerat: 
  www.MGTCorp.com
  
  You can also see a write up at: http://www.usatechguide.org/blog/
  
  If you have any questions, please do not hesitate to 
  contact me.Thanks for your time!
  
  Kind 
  regards,
  
  Michelle Carston, 
  C5 
  Quadriplegic
  IKAN 
  Bowler Representative
  [EMAIL PROTECTED]
  1-(800)-675-8598


--
No virus found in this outgoing message.
Checked by AVG Free Edition.
Version: 7.1.405 / Virus Database: 268.12.2/442 - Release Date: 9/8/2006
 

[QUAD-L] UNSUBSCRIBE

[Michelle Hansen]

Please UNSUBSCRIBE me from this list.Thank you

[QUAD-L] Traveling with a disability

[Michelle Ritter]

Hi! I'm a C-5 quad and want to start traveling with my husband. My problem is the dreaded "BP". My husband does not do this for me... I have a PCA and mom that helps with this. However, we'd love to travel alone. Does anyone have any good solutions about how this could be handled? I'd love to hear from quad womenbut any opinion would be greatly appreciated.  __Do You Yahoo!?Tired of spam?  Yahoo! Mail has the best spam protection around http://mail.yahoo.com 

[QUAD-L] Having Kids

[Michelle Hansen]

Hello Everyone,
I don't know if I sent my last email out incorrectly to the list or if everyone 
is ignoring me?  I only heard 
back from one person. :( Can anyone share their knowledge or experiences with 
having kids as a male 
quad (post Injury).  We have tried penile vibratory and it was not successful.  
Now we are looking at 
electro-ejaculation and I am wondering if it is dangerous and is it effective?  
If that doesn't work then we 
are looking at surgically removing sperm from the testes.  Has anyone been 
successful with 
insemination?  Invetro?   Any information would be helpful.  
Thanks in advance,
Michelle 
(Fiance' of Kenny, C6/C7, 16 yrs post)

RE: [QUAD-L] levaquin adverse reactions...?

[Michelle Hansen]

Hello All,

Quick question..Does anyone know
the life expectancy of quads? I know it may vary. However, I am just curious
if there are many 75+ year old quads out there. 
Thanks,



Michelle



Fiance of a C6/7, 16 years post

Scottsdale, AZ











From: David K. Kelmer
[mailto:[EMAIL PROTECTED] 
Sent: Wednesday, February 08, 2006
11:53 AM
To: Tim Syfert;
quad-list@eskimo.com
Subject: RE: [QUAD-L] levaquin
adverse reactions...?







Hi Tim,











When I took them, they gave me stomach cramps that wereworse than
when I atea couple ofpeyote buttonsa couple of years after my
SCI. I have used Cipro brand and other Fluoroquinolones, but the Levaquin
caps were amega-dosage written by the doctor covering for my doctor while
he was out of town. My doctor wouldn't havewrote a script for the
med-dosage caps. These things had my stomach knotted and twisted for
aboutfour days.

















With Love,






CtrlAltDel aka Dave
C4/5 Complete - 29 Years Post
Texas, USA







Tim Syfert
[EMAIL PROTECTED] wrote:







I've taken it 3-4 times with no reaction either. This is news to me
too.











Tim













Eric W Rudd
[EMAIL PROTECTED] wrote:







Same here.















Eric W Rudd

[EMAIL PROTECTED]



-Original Message-
From: S. Dial
[mailto:[EMAIL PROTECTED] 
Sent: Monday, February 06, ! 2006
5:07 PM
To: quad-list@eskimo.com
Subject: Re: [QUAD-L] levaquin
adverse reactions...?



This is an eye-opening topic, wow, I've
taken Levaquin many times over the years with no adverse reactions (knock on
wood hope it stays that way!)and this is the first time I've heard of
others having reactions to it. 











Steph

















Brings words and photos together (easily) with
PhotoMail
- it's free and works with Yahoo! Mail.

[QUAD-L] Pressure Ulcer Survey for SCI Adults and Caregivers

[Michelle Hilgart]

Title: Message




Good Day to all,

My name is 
Michelle Hilgart and I'm a researcher at the University of Virginia School of 
Medicine. My colleagues and I are working on a study that includes an online 
survey for adults with SCI and caregivers of individuals with SCI. The survey topic is pressure 
ulcers. Below is a description of 
our work and a link to our survey. 
We would be most appreciative to have members of this list participate in 
our survey. Participants' responses 
will help us to develop effective educational materials on pressure ulcer 
prevention and management.

Pressure Ulcer Survey for SCI Adults 
andCaregivers
University of 
Virginia School of Medicine Dept of Health Evaluation Sciences is seeking adults 
with SCI and adult SCI caregivers to participate in a 15 minute online survey 
focused on pressure ulcers. This 
survey is part of the needs assessment portion of a project funded by the 
Paralyzed Veterans of America Education Foundation. Results of the survey will be used to 
inform the development of a case based e-learning program targeting pressure 
ulcer prevention and management for adults with SCI and their caregivers. Participants need not have experienced a 
pressure ulcer to complete this survey. 


Link to 
survey: http://www.surveymonkey.com/s.asp?u=91277890703

Link to researcher's 
email: 
[EMAIL PROTECTED]
[EMAIL PROTECTED]

If 
you have any questions or trouble with the link, please email me and I'll be 
happy to help...
Thanks so much for your time!

Michelle Hilgart, M.Ed.
Ph.D. Candidate Instructional 
Technology
Research Assistant /Instructional 
Designer
Department of Health Evaluation 
Sciences,
University of VirginiaSchool of 
Medicine
[EMAIL PROTECTED]

"We don't see things as 
they are, we see things as we are."
 
~ 
Anais Nin