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

[Greg]

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 back, almost always
accompany kidney stones, and I am not experiencing any of these at the
moment. No UTI symptoms at the moment either.

So, my question is what could be causing these cold clammy sweats? Have any
of you old timers experienced this and figured it out? Is it always a
pressure situation? I do remember sweating profusely on my head and face
whenever I was up in my chair right before finding the bad open pressure
sore on my butt back in 2004, But back then neither of us knew what a
pressure sore was so we didn't know to look for something like that. We do
now but again my caregiver sees no evidence of pressure on my skin anywhere.

Any suggestions or help would be very much appreciated.  Thanks to all of
you who contribute here on the quad-list, and especially Jim Lubin for
providing us with this forum all these years.

Best, Greg

[QUAD-L] Caregiver services

[Greg]

Anyone know of an emergency caregiver service that you can call and ask 
someone to start right away? The Phoenix Arizona area. Only for about 6 
to 8 weeks. I could probably go with the caregiver doing a couple hours 
morning and a couple hours at night. Or a live-in. I just don't know if 
I will need it, but if I do, it would be right away. A lot of family 
health issues going on, all hitting at once.


My insurance covers for healthcare, but it's only when I need actual 
medical services not just custodial care.


Thanks so much, Greg

Re: [QUAD-L] Colon Cancer

[Greg]

I hope this is not seen as me making light of the situation. I AM NOT. But,
the whole colonoscopy discussion reminded me of a bit a local comedian here
in Nashville did years ago. He was part of a locally produced and broadcast
30-minute comedy skit show that aired late night for several weeks. The
show was called CUTS, and the character in this bit, Coach Bill Dingleman,
was a recurring character. Try not to laugh during this.

https://www.youtube.com/watch?v=9J7sVZd69uw

Good luck, Greg.

Greg

On Thu, Aug 25, 2022 at 1:59 PM Greg  wrote:

> Greg,
>
> Receiving those results from the Cologuard test must have been a bit of a
> shock. I hope you fall into that 13% false positive group.
>
> I'm 58, and was due for another colonoscopy earlier this year. It would
> have been my third in 15 years. My doctor told me to call him back with a
> date and he would set it up with my gastroenterologist. Two weeks later my
> doctor retired and I have not yet seen his replacement. I never picked a
> date and I never called him back, so I still haven't had the colonoscopy.
> Like most, it's the prep that makes it so difficult. And of course, the
> prep is even more difficult for my caregiver. But putting all that aside, I
> am almost certain I would reject whatever treatment necessary to tackle the
> problem if they discovered cancer. I have lived a comfortable, full life,
> relatively free from serious health problems. But I know without a doubt
> that my life is only going to get harder going forward. And not just a
> little bit harder, but a lot harder. I lost my dad last year, and mom is
> not getting any younger. 35 years of quad-dom is quite enough for me.
> Anything beyond this point is just the credits rolling. I'll enjoy what I
> can, but I'm not willing to spend my remaining days recovering from colon
> surgery and/or chemotherapy should I be diagnosed.
>
> Having said all that, my dad was diagnosed with colon cancer when he was
> 58. They discovered it during another surgical procedure, brought him out
> of anesthesia, broke the news, had him sign some papers, put him back
> under, and removed a sizable length of his colon. He then underwent
> chemotherapy, and it was a terrible two year ordeal. BUT, he survived,
> eventually felt much better, and lived another 20 years in good health. All
> of us were glad he chose to fight it. That is of course a personal decision.
>
> Good luck with the colonoscopy. If you receive good news from the
> procedure, and you are anything like me, you will come out of it feeling
> better for having cleaned yourself out, maybe lost a few pounds, and you
> will vow to do better going forward, to eat better, and take better care of
> yourself. And if you're anything like me, you will be wolfing down a pizza
> and chugging a couple tallboys by the end of the week. I look forward to
> hearing your good report.
>
> Greg
>
>
> On Sun, Aug 21, 2022 at 5:58 PM 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] Colon Cancer

[Greg]

Greg,

Receiving those results from the Cologuard test must have been a bit of a
shock. I hope you fall into that 13% false positive group.

I'm 58, and was due for another colonoscopy earlier this year. It would
have been my third in 15 years. My doctor told me to call him back with a
date and he would set it up with my gastroenterologist. Two weeks later my
doctor retired and I have not yet seen his replacement. I never picked a
date and I never called him back, so I still haven't had the colonoscopy.
Like most, it's the prep that makes it so difficult. And of course, the
prep is even more difficult for my caregiver. But putting all that aside, I
am almost certain I would reject whatever treatment necessary to tackle the
problem if they discovered cancer. I have lived a comfortable, full life,
relatively free from serious health problems. But I know without a doubt
that my life is only going to get harder going forward. And not just a
little bit harder, but a lot harder. I lost my dad last year, and mom is
not getting any younger. 35 years of quad-dom is quite enough for me.
Anything beyond this point is just the credits rolling. I'll enjoy what I
can, but I'm not willing to spend my remaining days recovering from colon
surgery and/or chemotherapy should I be diagnosed.

Having said all that, my dad was diagnosed with colon cancer when he was
58. They discovered it during another surgical procedure, brought him out
of anesthesia, broke the news, had him sign some papers, put him back
under, and removed a sizable length of his colon. He then underwent
chemotherapy, and it was a terrible two year ordeal. BUT, he survived,
eventually felt much better, and lived another 20 years in good health. All
of us were glad he chose to fight it. That is of course a personal decision.

Good luck with the colonoscopy. If you receive good news from the
procedure, and you are anything like me, you will come out of it feeling
better for having cleaned yourself out, maybe lost a few pounds, and you
will vow to do better going forward, to eat better, and take better care of
yourself. And if you're anything like me, you will be wolfing down a pizza
and chugging a couple tallboys by the end of the week. I look forward to
hearing your good report.

Greg


On Sun, Aug 21, 2022 at 5:58 PM 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] Weeky Support Group

[Greg]

Aaron,

I too would like to participate in a regular support group get-together. On
August 11, I celebrated 35 years as a quad, and although I have been a
member of this email list for several years (thanks Jim), I have not really
interacted with other quads since my time in rehab back in the late 80s. It
would be nice to see how others get along and what solutions they have
found to some of the problems we face. Unfortunately, your proposed time to
meet will not work for me--at least not on a regular basis. Saturdays are
pretty well booked up for me. But if some of you decide to get together at
that time, please include me in any notice or email. I will login when I
can.

Thanks.

Greg



On Tue, Aug 23, 2022 at 12:20 PM Aaron Mann  wrote:

> I know that there have been intermittent greet and meet meetings set up
> over the last few months. I would like to propose a more formal weekly
> support meeting that we can do. Where I live there are no formal groups to
> meet up, so I'm kind of missing the conversations and input from my peers.
>
> I will propose that we set this up for Saturday's at 7 PM Central standard
> Time. What are your thoughts/input?
>
> Aaron Mann
>

Re: [QUAD-L] Colon Cancer

[Greg]

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

[QUAD-L] Colon Cancer

[Greg]

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

[QUAD-L] Phoenix Disability Expo

[Greg]

Anyone of you guys going to the Phoenix Disability Expo?

I haven't been to one in about 15 years. I'm about 40 years post. If I'm 
not really looking for anything specific, are they worth going to?



Greg

Re: [QUAD-L] Quadlist Zoom Meeting, 3/15

[Greg]

I hope the meeting is still on. Did I miss it, or is it an hour later than
advertised?

Greg


On Mon, Mar 7, 2022 at 4:57 PM Don Price  wrote:

> Hey all!
>
> We did a Quadlist Zoom meeting a few weeks ago, and even though only four
> of us attended it was still very enjoyable. I finally got to see and talk
> to my hero, Jim Lubin, the man who started the Quadlist.
>
> Anyhow, I want to schedule another meeting, and rather than trying to get
> a consensus on date/time, i'm just going to schedule it for Tuesday, March
> 15th at 5pm AZ time. That's:
> 7pm ET
> 6pm CT
> 5pm MT
> 4pm PT
>
>
> Topic: Quad-List Chat
> Time: Mar 15, 2022 05:00 PM Arizona
>
> Join Zoom Meeting
> https://us02web.zoom.us/j/85753852801
>
> One tap mobile
> +16699006833,,85753852801# US (San Jose)
>
> Join if you can!!!
>
> Don.
>

[QUAD-L] Breathing Probnlem

[Greg]

Just spent another three days in the hospital because of my breathing 
problem. I'm having a hard time inhaling without there being heavy 
pressure. And breathing like I just run a marathon. This time they did 
another CAT scan and at least found out my lung blood clots are gone. 
They also did a heart Echo, an ultrasound of my heart and it came out 
fine. They also did a sniff test, and it showed my diaphragm was pretty 
good. When I breathe feels like a rubber band around my chest. Then I 
start breathing very heavy and my shoulders go up and down just cuz it's 
so hard to breathe. It started seven or eight months ago, right after I 
had an ablation of my heart to fix a flutter. I had to be intubated, and 
right when I came out I was breathing like this and they thought I had 
too much CO2. So I was on a respirator for a week or so. But after that 
I still have the breathing issues. Since then I've had to be on a 
respirator at night just to help me breathe easy enough to sleep.


I've been to at least three lung doctors, a couple different heart 
doctors, the neurologist, a blood doctor, the quad doctor. No one can 
figure it out.


I thought maybe it was just getting older, muscles and lungs getting 
old, and my spine is curving a bit, but it happened so fast right after 
the heart ablation.


I am scheduled for one more test, a stress test on my heart, I just hope 
they can find something. I can't keep breathing like this it's 
constantly hard to breathe and then gets really hard times. Like I've 
run a marathon with someone sitting on my chest.


About 3 years ago I had a pleural effusion, where fluid fills up between 
your lungs. It kept coming back and I wood drain about a liter and a 
half a fluid once or twice a week. But I had a procedure to fix it. I 
keep saying that's what it feels like, but they all keep saying there's 
no fluid anymore in there.


I get so exhausted just typing a few words, haven't been able to go out 
for almost 3 years. Just too tired and breathe too hard.


Any ideas,
 thanks Greg

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

[Greg]

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] ARE QUADS IN CONSIDERD HIGH RISK FOR BOOSTER SHOT

[Greg]

they gave me one.
age 57

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?

[QUAD-L] breath

[Greg]

One more test done, that does not show what is causing my breathing 
problem. First they were sure it was CO2 buildup, so they put me on a 
BiPAP. Then they thought it was weak lungs. Then they heart issues. But 
those were both cleared buy a lung doctor and cardiologist. Then they 
were sure it was low iron, but now at 3 Iron IVs with two more to go, 
but so far no change. The hematologist said that's probably not the 
cause now. The last test they can think of is the EMG test I do next 
week. They will test the diaphragm. I just feel out of breath, heavy 
chested, like I've run a marathon with a belt across my chest very 
tight. I was perfectly fine until I had the heart ablation. I use a 
ventilator at night sometimes during the day just to make it easier to 
breathe. Just a little help on my inhale makes me feel fine. I just hate 
wearing that mask. No one else has any ideas, and it's getting very 
frustrating.

greg

Re: [QUAD-L] Covid and Vaccine

[Greg]

i had the pfizer shots and had no side effects at all.  4 family members 
had no side effects either.

going to get my update shot tommorow.
greg

On 8/31/2021 2:03 PM, Nichole Rohling wrote:


Just curious if anyone has had Covid and how did you feel, symptoms, etc.

If you got vaccine which did you get? Did you have a reaction?

Nicki

C5/6

[QUAD-L] iron

[Greg]

My heart, lung, blood, SCI, doc just can't find my issue. It feels like 
I ran a marathon and now a fat man is on my chest. If my EMG test shows 
a problem, I might need a diaphragm pace maker. But my iron is so 
low, the blood doc says it could be that. She said people with colostomy 
don't absorb iron or b12. no doc ever told me that. they took 8 vials of 
blood yesterday to do lots of specialty tests. next week i start an iv 
iron treatment, 1 a week for 5 weeks.


greg

[QUAD-L] Wound Vac

[Greg]

I have a butt sore that was almost healed until a hospital stay. Now its 
a smallish opening, but large undermining. Its not healing. Doc want me 
to think about a wound vac. But they would need to make the wound 
opening bigger. Anyone have good or bad issues with a vac on your butt?


Greg

Re: [QUAD-L] Stuck Again

[Greg]

I have no idea, but I've seen 2 cardiologists and they both gave me the 
OK. EKGs, Ultrasounds, etc.

It is a bit harder to breath when flat, but it always has been.
I go back to the one who did the heart ablation in a week or so. It all 
started after that. But my heart checks out ok.
I'm leaning towards diaphragm issues right now. The ablation goes up the 
leg by the diaphragm. And I read that getting intubated can mess up your 
diaphragm. Plus I feel its my inhale thats an issue. Long pauses, and 
harder than before. Just a light help inhale from the respirator helps a 
lot.

Hopefully the EMG and Sniff test will show something.
Thx, Greg

On 7/31/2021 9:51 AM, Eric Olson wrote:

Hey Greg,

Been thinking about your breathing problems.  Is it harder to breathe 
when you lie flat?  Are you sure this isn't cardiac related?


On Fri, Jul 30, 2021 at 2:27 PM Greg <mailto:g...@eskimo.com>> wrote:



I think I might be a little psychic. I wrote the below message
about 2 hours ago on my tablet so I can use the voice typing
easier. Then I forward it to my Facebook, then copy it to an
email. But before I could send it, I got stuck AGAIN. This time I
was out front and I hit my recline button, but when I let go, it
kept reclining. Then none of the buttons work. I was able to yell
and get help, but nothing they could do. I had to call the fire
department so they could get me inside and into bed. There's no
way my reclining chair would fit around the corners. But the
fireman played around with the wires and it started working. Thank
God. I'd hate to be stuck in bed for who knows how long. I'd have
to get a prescription, send it to the repair place, get the
appointment, have them look at it, order parts, then schedule
another appointment to have it fixed. I hate dealing with
insurance. Being that you need a wheelchair you should just be
able to go straight up there without all that waiting.

This was my earlier message.

I was sitting out front today, I decided to put the smell set of
weight on my wrist. I had an iced coffee in one hand and I hit the
recline button with the other. But when I tried to hit the recline
button to sit back up my fingers got caught in the recline button
cable. With a little extra weight on my hand I was not able to get
to the button. I tried to use my other hand to hook on the armrest
for leverage, but it slipped off and my hand went to my shoulder
with the coffee cup upside down. Luckily I was able to knock the
coffee cup off my hand and hook my arm rest for better Leverage
and got to my recline button. Lucky it didn't take too long it's
about a hundred degrees out and who knows how long I would have
laid there.

Got me thinking, I think I've been stuck like that or similar 3
times. Been stuck in gravel many times but not like that. Once I
was on my way home and I tipped forward and couldn't sit back up.
I laid with my head in my lap until a bicyclist came by and helped
me to sit up. Another time would like today without the weights,
but I was stuck I could reach the button, and yelled until finally
a neighbor heard me. I think the worst one, was when I was going
out the back door one wheel went over the threshold the the bump
made me fall forward, and I was jammed in the doorway, it was
about a hundred ten degrees out. I was there for so long and got
overheated. At least I've learned to always wear my chest strap
even when I'm home and families in the house. I just can't yell
loud enough.

Greg

[QUAD-L] Stuck Again

[Greg]

I think I might be a little psychic. I wrote the below message about 2 
hours ago on my tablet so I can use the voice typing easier. Then I 
forward it to my Facebook, then copy it to an email. But before I could 
send it, I got stuck AGAIN. This time I was out front and I hit my 
recline button, but when I let go, it kept reclining. Then none of the 
buttons work. I was able to yell and get help, but nothing they could 
do. I had to call the fire department so they could get me inside and 
into bed. There's no way my reclining chair would fit around the 
corners. But the fireman played around with the wires and it started 
working. Thank God. I'd hate to be stuck in bed for who knows how long. 
I'd have to get a prescription, send it to the repair place, get the 
appointment, have them look at it, order parts, then schedule another 
appointment to have it fixed. I hate dealing with insurance. Being that 
you need a wheelchair you should just be able to go straight up there 
without all that waiting.


This was my earlier message.

I was sitting out front today, I decided to put the smell set of weight 
on my wrist. I had an iced coffee in one hand and I hit the recline 
button with the other. But when I tried to hit the recline button to sit 
back up my fingers got caught in the recline button cable. With a little 
extra weight on my hand I was not able to get to the button. I tried to 
use my other hand to hook on the armrest for leverage, but it slipped 
off and my hand went to my shoulder with the coffee cup upside down. 
Luckily I was able to knock the coffee cup off my hand and hook my arm 
rest for better Leverage and got to my recline button. Lucky it didn't 
take too long it's about a hundred degrees out and who knows how long I 
would have laid there.


Got me thinking, I think I've been stuck like that or similar 3 times. 
Been stuck in gravel many times but not like that. Once I was on my way 
home and I tipped forward and couldn't sit back up. I laid with my head 
in my lap until a bicyclist came by and helped me to sit up. Another 
time would like today without the weights, but I was stuck I could reach 
the button, and yelled until finally a neighbor heard me. I think the 
worst one, was when I was going out the back door one wheel went over 
the threshold the the bump made me fall forward, and I was jammed in the 
doorway, it was about a hundred ten degrees out. I was there for so long 
and got overheated. At least I've learned to always wear my chest strap 
even when I'm home and families in the house. I just can't yell loud enough.


Greg

Re: [QUAD-L] Breathing

[Greg]

Thats how I feel, my mother has it.
But the ER, heart, and lung doctors say my heat and lungs are in great 
shape.


Greg

On 7/29/2021 10:18 AM, Eric Olson wrote:

Greg,

I had a diaphragm pacer implanted about 20 years ago.  They never 
could get it to work.  They said I was an "anomaly"  You sound like 
someone with COPD


On Tue, Jul 27, 2021 at 11:04 PM Jim Lubin <mailto:jlu...@makoa.org>> wrote:


I knew someone who was a C2 quad dependent on a vent to breathe
and changed to a diaphragm pacemaker. She wrote an article about it
https://files.wearesrna.org/newsletters/j5/journal-5-11.htm
<https://files.wearesrna.org/newsletters/j5/journal-5-11.htm>

She suffered from depression and stopped eating then passed away a
few years ago.

On Tue, Jul 27, 2021 at 5:28 PM Greg mailto:g...@eskimo.com>> wrote:


I'm still having problems with my breathing, I'm not on trech
now, I was last year for a week or two. I am on a respirator
but only at night, sometimes during the day if I'm really out
of breath. I've been to so many doctors they just can't find
my problem. My oxygen levels are fine, but I feel like I'm out
of breath. Sometimes it feels like a heavy chest, sometimes I
feel like I've been running around the block, and other times
I just don't feel like I'm getting air.

My next test is an EMG. To test the diaphragm for electrical
currents. And they also talked about a sniff test.

My breast feel like they're big enough, I'm just breathing
real hard. I have had blood pressure issues, often in the
70s/40s. So I am taking a blood pressure medication.

They're also talking about a diaphragm Peacemaker. Is anyone
ever had that or know someone who has? I worry that will make
my breathing not natural, like making me take breaths when I'm
trying to breathe out xcetera.

It all started the day after I had a heart ablation to fix
A-Flutter on my heart. But that shouldn't have anything to do
with it, except I was intubated. I left the hospital and had
to go back that night my breathing was so hard. They thought
it was a CO2 buildup, but that's gotten a lot better.

I haven't had a good breath in about 2 months now. At least
one that felt normal. I don't know what's worse not breathing
well for being on that darn ventilator. I don't want to go to
    trech again.

Greg

[QUAD-L] Breathing

[Greg]

I'm still having problems with my breathing, I'm not on trech now, I was 
last year for a week or two. I am on a respirator but only at night, 
sometimes during the day if I'm really out of breath. I've been to so 
many doctors they just can't find my problem. My oxygen levels are fine, 
but I feel like I'm out of breath. Sometimes it feels like a heavy 
chest, sometimes I feel like I've been running around the block, and 
other times I just don't feel like I'm getting air.


My next test is an EMG. To test the diaphragm for electrical currents. 
And they also talked about a sniff test.


My breast feel like they're big enough, I'm just breathing real hard. I 
have had blood pressure issues, often in the 70s/40s. So I am taking a 
blood pressure medication.


They're also talking about a diaphragm Peacemaker. Is anyone ever had 
that or know someone who has? I worry that will make my breathing not 
natural, like making me take breaths when I'm trying to breathe out xcetera.


It all started the day after I had a heart ablation to fix A-Flutter on 
my heart. But that shouldn't have anything to do with it, except I was 
intubated. I left the hospital and had to go back that night my 
breathing was so hard. They thought it was a CO2 buildup, but that's 
gotten a lot better.


I haven't had a good breath in about 2 months now. At least one that 
felt normal. I don't know what's worse not breathing well for being on 
that darn ventilator. I don't want to go to trech again.


Greg

[QUAD-L] Vent ?

[Greg]

you guys on vents ever get use to it?
I have to use one at night, I use a face mask not trach. I just can't 
get the breathing to match mine good enough. Plus the face mask is just 
too much. I keep trying different kinds.


I dont want the trech, when its not on, just the trech tube in the 
throat blocks too much air.


Greg

[QUAD-L] Not doing well

[Greg]

Ever since I went to the hospital to have my hearts e-flutter fixed, I 
haven't been doing too well. The flutter seems to have stopped, but I 
have all kinds of new things. At first they thought it was my diaphragm 
getting paralyzed from the anesthesia, but that's been too long now. 
Then they thought it was some lung issues, but that's been ruled out. 
Then they said it was a heart issue, but that seems to be okay too. My 
symptoms are that I get very dizzy, my blood pressure gets very low ( 
like 74 / 45), my chest gets heavy, it's very hard to breathe, I breathe 
like I just run around the block too many times. If I do anything like 
typing, just a few words exhaust me. Just eating a few bites wears me 
out. Now I'm going to a neurologist and they want to do a EMG test, that 
will test if my diaphragm is fluttering or spasming. I was fine right up 
until the heart procedure to fix an a-flutter. Most of the time my blood 
pressure is okay, my oxygen levels are in the high nineties. And 
sometimes my blood pressure is fine I still feel out of breath and 
exhausted and breathe very heavy.


I've often had autonomic dysreflexia but that makes my blood pressure go 
up. The neurologist said it could be something to do with dysautonomia​, 
never really heard of that, but she said it's kind of the opposite of 
dysreflexia making blood pressure go down. But no idea what would have 
caused it.


anyone go through anything like this? It's been very hard to breathe off 
and on. They have me on a BiPAP at night to make it easier to breathe 
and sleep.


My next doc will be a SCI doc, but my old one moved. Anyone go to one 
who specializes in SCI?


Thanks much
Greg

[QUAD-L] back on

[Greg]

am  back on

[QUAD-L] Exhausted

[Greg]

Still having a helluva problem breathing. I had a heart ablation, they 
use anesthesia and intubated me. The procedure was pretty simple, but 
when I woke up I was out of breath and breathing very hard. They thought 
the anesthesia just paralyzed my diaphragm for a little while. It's 
going on three weeks or so and things seem to be getting worse. They 
also thought it was too much CO2 in my blood because my breathing was so 
shallow. That seems to be getting better, I still get out of breath very 
easy. I can write about four words but then I'm exhausted. Or I can eat 
about two bites and I have to recline because I'm so exhausted. My vital 
statistics are all great blood pressure, oxygen levels, breathing well 
up in my chair, heart rate. The cardiologist and the lung doctor say 
everything looks good. But just laying in bed makes it hard to breathe 
and I need to use a respirator at night. Sometimes during the day when I 
feel bad. When I'm up in my chair I feel like I breathing just as well 
as normal. Just nothing makes sense. I was back in the ER last week and 
spent three days doing test. And they find nothing. Does anyone have 
sleep apnea? How tired you get throughout the day before you used to 
CPAP. The sleep studies the only thing I haven't had yet, but I know my 
breathing is very shallow at night. I just wouldn't think I could be 
that exhausted from sleep apnea. But maybe.


Greg

[QUAD-L] no mail

[Greg]

No mail for awhile, Still working?

Greg

[QUAD-L] Vent

[Greg]

At the hospital I was on a bipap, but I guess they sent me home with a 
full vent. No idea of the difference. I use a face mask.

I just can't get the settings right. Too fast, too strong,etc
Cant get to my lung doc until thur.
Any advice?

Greg

[QUAD-L] Hospital

[Greg]

I had to do another ablation on my heart, I did one before that was for 
AFib, now I had to do one for AFlutter. This one didn't go so well. The 
procedure went fine, but the anesthesia was hard on my diaphragm. So I 
wasn't exhaling enough CO2. So my CO2 levels went way too high. I ended 
up in the hospital for another 8 days. They had to put me on a BiPAP 
machine to help me breathe. I'm feeling better but I'm still not 
breathing good enough on my own so I still have to use the BiPAP at 
night and on and off throughout the day. I hate wearing that mask. I 
just cant get the breathing timing right.



Greg

Re: [QUAD-L] Covid

[Greg]

 I heard the 2nd shot felt worse, but don't understand why, since its 
thesame shot I thought.

I got the Pfizer

Greg

On 3/15/2021 3:22 PM, Danny Hearn wrote:
Greg--which one did you get of the 3 or 4 available?  Also do you have 
to get a 2nd shot ? I know that very many people have got pretty sick 
after the 2nd follow up shot that many types require.  Keep us 
informed on this..Thanks, Dan H***


On Monday, March 15, 2021, 04:43:29 PM CDT, Greg  wrote:


Got my first Covid shot today.
I only hope the alien they got the DNA from was treated well.
Or the tracker they implanted doesn't out too much personal info out. 
(grin)


Greg

[QUAD-L] Covid

[Greg]

Got my first Covid shot today.
I only hope the alien they got the DNA from was treated well.
Or the tracker they implanted doesn't out too much personal info out. (grin)

Greg

[QUAD-L] Alcohol

[Greg]

Once a year my insurance makes me do a PC Oc check-up thing. Blood, 
check med list, update all previous things that have been done 
throughout the year to see if they are resolved yet.  Like I had a butt 
sore, lung issues, etc.


One thing in my records was that I was an alcoholic. It didn't list what 
doc entered that. All my main docs see me enough to know I'm not. I 
hardly ever drink. Maybe 3 times a year I'll have a half a shot of 
something in my hot chocolate. Just to warm up.


It pissess my off that something like that can happen..

Greg

Re: [QUAD-L] Voice Operated TV Google, Alexa, others?

[Greg]

i bought a amazon fire tv to use alexaon. works pretty good, itcan do 
most everything, though not always perfectly.


greg

On 2/23/2021 5:26 PM, Randy Anderson wrote:

Thank you, Nicole
I'm not new to the site, but I don't say much. Although, I do read all 
the posts.

Does that make me a creeper? :-) :-)

On Tue, Feb 23, 2021 at 5:51 PM Nichole Rohling 
mailto:zoocr...@windstream.net>> wrote:


Hi Randy,

I don’t have any advice or input but just wanted to welcome you!

Nicki C5/6

*From:*Randy Anderson [mailto:randyanderson...@gmail.com
<mailto:randyanderson...@gmail.com>]
*Sent:* Tuesday, February 23, 2021 4:15 PM
*To:* quad-list
*Subject:* [QUAD-L] Voice Operated TV Google, Alexa, others?

Hello

I have a SCI 4/5, no movement from the neck down using a sip and
puff power wheelchair.
The picture on our TV went out yesterday morning so I'm looking
for another one.

I'm seeing that some TVs they come with an option of using your
voice with Google or Alexa, and maybe others.
I do have Alexa now, mostly lights, a phone call now and then, etc.
Do any of you have a TV with these functions?
How well does it work for you, do you prefer Alexa or Google?
Is Alexa or Google more user-friendly for a hands-free operation?
Are there other options I should be aware of?

If anybody has a TV with the Alexa and Google function, which TV
do you own?
Do or don't you like it?

Any suggestions would be appreciated.
Thank you, Randy

[QUAD-L] sell pdt help

[Greg]

A friend wants to sell a PDF file booklet online. Wants to put a link on 
their web page that goes to a place that takes the funds and sends them 
the file. All done automatically. So he does nothing but posts the title 
/ link on his page.


Tried Clickbank, but it as not user friendly.

Any advice?

Thx, Greg

Re: [QUAD-L] foley catheters

[Greg]

I use a Bardex I.C. Silver Coated Latex Foley Catheter. Its hard to say 
how much better they are, but i think they work better.


Greg

On 1/14/2021 5:00 PM, wheel...@centurylink.net wrote:

to those who use foleys.

I am going to use some foley until sore heals up due to condom catheter.

is the more expensive foleys made with silver worth buying? compared 
to silicone or latex? i have no allergy's.


thank you,

derrick w in pa c/5

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

[Greg]

All drugs have side effects, and long term issues can show up in even 
old drugs. I used Cipro for years and now they say not to use it if you 
can find other option.
From what I understand, the Cov19 vaccines does not have the active 
virus, so it can't give you Cov19. And other countries have been using 
it a bit longer than us. I'd trust enough considering how bad things 
are. 2 family members that live with me are scheduled to get the 1st 
shot next week. They work in high risk areas. So I'll get it as soon as 
I can.


If I lived in a rural area, not hard hit, I might pass for awhile.

Greg

On 1/14/2021 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***

[QUAD-L] Itching Head

[Greg]

My head itches so bad, all the time.
I have been to docs, dermatologists, etc. I've tried creams, lotions, 
meds, shampoos. I even shaved my head. So far, very short hair works 
best, but still drives me nutz. Finger nails feel best, but I can't 
reach the top o my head or open my hands.


I wish I could find a hat that had spinning, stiff, brushes, inside it. 
I'd wear it all day long and all night.

Greg

[QUAD-L] Covid

[Greg]

While at docs getting checked for uti and stomach xray, I was talking to 
the nurse abut covid and she says they get a number of people who get 
covid and refuse to except it or get very mad at her.

So stupid...
Greg

[QUAD-L] sweating

[Greg]

I have been sweating so bad the last few weeks. I have had lots of gas 
and it can cause sweating pain, but no idea why so much gas. My poo is 
soft and sticky and have a colostomy, but thats happened before but 
never this much sweating.

Checked for uti, but ok.  Its when sitting, laying, etc.
Anyone go through this?
Greg

[QUAD-L] Sunshine

[Greg]

I am so addicted to sunshine, I find it hard to stay inside on sunny 
days. So much so, I end up not doing things I'm supposed to be doing. I 
just put things off and say I'll do it later, but end up to late.
When inside and I know it's sunny, thats all I think about, knowing I'm 
missing it.


Greg

[QUAD-L] Leg Pain

[Greg]

This last few days my thigh has been THROBBING. Just sitting and in bed 
laying flat. Nothing helps. I know its probably not really hurting, but 
eeeks... Like a vice, squeezing.


Greg

Re: [QUAD-L] Sleep

[Greg]

I just wanted to see if there is an obvious thing I'm doing at night. 
Prob with sleep study is it doesn't happen every night. I could fast 
forward the video... Home study might be ok.

Greg

On 11/20/2020 10:27 AM, Eric Olson wrote:
So you're going to watch 8-10 hours of video of yourself sleeping 
every day and then diagnose yourself?  Me thinks you high.  I get that 
going to a clinic for a study would be a gigantic pain in the ass but 
sleep apnea, especially for a quad, could be life threatening


On Thu, Nov 19, 2020 at 8:20 PM Greg <mailto:g...@eskimo.com>> wrote:


I have sleeping issues as far as waking up a lot, but some days I
wake up breathing hard or out of breath. Doc wants a sleep study.
Not sure if I stop breathing or neck bends to much, etc. But I'm
not wanting to do that right now.

Anyone know a good, cheap, camera I can film myself to see what it
looks like?

All the ones I see are movement started and run for 15sec. Or hold
90 min max.
I'd like a 8-10 hour recording. Either on a chip or streamed to
laptop and recorded there.

    Thanks, Greg

[QUAD-L] Sleep

[Greg]

I have sleeping issues as far as waking up a lot, but some days I wake 
up breathing hard or out of breath. Doc wants a sleep study. Not sure if 
I stop breathing or neck bends to much, etc. But I'm not wanting to do 
that right now.


Anyone know a good, cheap, camera I can film myself to see what it looks 
like?


All the ones I see are movement started and run for 15sec. Or hold 90 
min max.
I'd like a 8-10 hour recording. Either on a chip or streamed to laptop 
and recorded there.


Thanks, Greg

Re: [QUAD-L] Fwd: external catheter

[Greg]

They have condom caths, but I hated them, easy to blow off.

On 10/21/2020 12:49 AM, kemal zakaria wrote:

-- Forwarded message -
From: kemal zakaria 
Date: Wed, Sep 9, 2020 at 12:22 PM
Subject: external catheter
To: 


dear fellows,
i am a quad incomplete c1 c2. i have a problem with the indwelling
catheter and would like to switch to an external one. i would ask for
your advice in choosing one, .. reusable, easy fit, self adhesive
etc. need it for night time use. thanks for the assistance.
with regards,
kemal

Re: [QUAD-L] Stuck

[Greg]

Thx, yeah I just need to wear my chest strap. I just don't like it on. I 
do use it when going out on my own though.

Greg



On 10/18/2020 9:44 AM, Eric Olson wrote:

Have you figured out how to keep from falling forward?

On Sat, Oct 17, 2020 at 8:38 PM Shelly Kerchner 
mailto:shelly.kerch...@yahoo.com>> wrote:


Thank goodness you are ok!  This happens every now and then to me,
its scary, frustrating I know. So very glad you are safe & out of
    danger Greg!

Shelly

On Saturday, October 17, 2020, 08:49:15 PM EDT, Greg
mailto:g...@eskimo.com>> wrote:


I feel asleep outside while I was reclined, my arms were spread
out, hanging. Woke up and my arms were sore and so dead I couldn't
reach my recline button. About 100 degrees outside. Luckily it
only took about 10 minutes before my arms woke up enough to get to
the button.

There's been 3 or 4 times I've feel forward and couldn't sit
backup. The worse was like 110 degrees, I was just out my front
door. I was yelling for help, but no one inside could hear me. It
felt like forever.
Bending forward I can't breath very good or yell loud. Luckily my
neighbor heard me after forever. I was so over heated. I was
getting really panicked.

Greg

[QUAD-L] Stuck

[Greg]

I feel asleep outside while I was reclined, my arms were spread out, 
hanging. Woke up and my arms were sore and so dead I couldn't reach my 
recline button. About 100 degrees outside. Luckily it only took about 10 
minutes before my arms woke up enough to get to the button.


There's been 3 or 4 times I've feel forward and couldn't sit backup. The 
worse was like 110 degrees, I was just out my front door. I was yelling 
for help, but no one inside could hear me. It felt like forever.
Bending forward I can't breath very good or yell loud. Luckily my 
neighbor heard me after forever. I was so over heated. I was getting 
really panicked.


Greg

[QUAD-L] Am I Cold?

[Greg]

I get s frustrated at night. I get freezing cold a lot, but at night 
I get feeling so cold I shake uncontrollable. Like my arms are in 
icewater. More and more heat / blankets makes it worse. I sware I'm 
cold... Yet as soon as I get up, it goes away. My temp doesn't change, 
yet I'm shaking, and feel the heat coming off my body. Over heating 
while I'm up just makes me feel hot


Only 2 things I can think of:
Either its a mild A.D.
Or its my arms get so tight, its cutting off blood or nerves?

Any Ideas?

Greg

[QUAD-L] NexStr 3 ?

[Greg]

I have a external hard drive (NexStar 3) I haven't used it in awhile. I 
see the drive and a cord tha plugs into the NexStar ad a USB port on my 
computer. A light on the Nexstar comes on, but I can not get my computer 
to read it. I've tried a few computers. No new drive shows. I know it 
use to work. I'd plug it in and a window would popup saying there is a 
new device. File Explorer would show a new F: drive.


I don't recall a power cord or anything else. A light turns on.

Any ideas? Could it just be dead? Thanks
Greg W

[QUAD-L] sweating ?

[Greg]

Can any of you figure out what's wrong when you are sweaing, by how bad 
you are sweating and or where you are sweating?


Sometimes I can tell when it's a blocked catheter or something else. 
Normaly I sweat mostly on my right face, neck, forehead. When its my 
cath it all over and harder.


Greg

[QUAD-L] Ear Wax

[Greg]

I have such a bad Ear Wax issue. My right ear starts to crackle inside, 
then gets plugged up. Over the counter drops don't help at all. Years 
ago, my doc used a water / hydrogen peroxide mix to flush it.Took 
awhile, but finely cleared. Now I have to do it about twice a year. It 
ends up flushing out a chunck the sized of a pencil earacer.  Always the 
right ear.


Greg

[QUAD-L] new chair

[Greg]

Anyone have ideas for a new powerchair? Hoping for 7.5mph +
Most seem to be 4-5 mph.
Is the Quantum still good?
I use a Quickie QM 710

Thx Greg

[QUAD-L] Butt Soee

[Greg]

ive had 2 sores on my butt for mounts now. they are so close to healing. 
the bigger one looks like it will heal first. my main problem is 
sweating when i sit in my chair. some days its fine, some days i sweat 
terribly bad. ive had sores bigger and deeper and never sweated like 
this. it seems to only be 1 side that causes the sweating. the smallest 
one. if i lift my hip up using a small pillow the sweating stops.


the doc has checked for tunnling, infectios, bone infection, everything 
looks great. no dead skin / meat etc.


anyone sweat that bad from a butt sore?

Greg

[QUAD-L] Spasms

[Greg]

I tried all those meds and nothing worked. I was spasming so bad my 
chest was heavy. I was dreaming of my thigh being crushed or burning.  I 
had a MRI and found out is was H.O.  Calcium growing on my hip to heel 
an injury, but it didn't stop growing. It was growing like a tree branch 
into the muscles. Extreme pain. Once the pain was under control, I 
rarely spasm.

Greg

On 5/20/2020 10:31 AM, Aaron Mann wrote:
> Every day:
> 30mg Baclofen/8 hours
> 600mg Gabepentin/8 hours
>
> Other:
> 5mg Diazpam as needed up to every 8 hours
> 10/325 Hydrocodone on "stand by" for severe pain related spasms
>
> Aaron Mann
>
>
> On Sun, May 10, 2020 at 11:25 AM Eric Olson  wrote:
>
> baclofen 20mg X 4
>
> On Fri, May 8, 2020 at 5:19 PM DAVID LEWIS 
 wrote:

>
> I have been taking Baclofen 20 mg 3 times a day..
> Now i take a Mustle relaxer 3 times a day with it for 2 weeks.
> Its working great.
> Can u fellow Quads tell me what you take for Spasms?
> Thank you guys,, Stay safe..
> Johnny
>

Re: [QUAD-L] Chair Prob

[Greg]

Pre 2004 when living in the Seattle area, my chair shop tried to come 
out that day or at least the next.  Or I could just drop by. They had 
all kinds of parts.

Greg

On 5/21/2020 7:35 AM, Aaron Mann wrote:

I've always been given a "loaner" chair. Did they not offer that?

In regards to just fixing the stripped cable. I'd call an electrician 
(or do like you did). Chair place have been gutted of their abilities 
to work outside the box by lawyers. They carry all the liability for 
their work. So, a new cord reduces that liability whereas patching a 
stripped one does not. I do remember when shops did all sorts of 
optional solutions

Aaron Mann


On Wed, May 20, 2020 at 6:00 PM Lori Michaelson 
mailto:lorilivin...@gmail.com>> wrote:


I have had this problem with these companies so many times. It's
just not right. You WERE very fortunate to have a friend to rewire
the ripped cable.

On Wed, May 20, 2020 at 3:53 PM Greg mailto:g...@eskimo.com>> wrote:

Last night I was raising my chairs seat and the joystick cord
came loose and hooked around the motor and as I raised it
ripped open the cable. Repair shop says 4-8 weeks to get
fixed. They carry no parts.


1. Get prescription.
2. After they get that, make appointment to get chair checked
out. (week +)
3. They pick up chair.
4. Get Insurance OK. (about 2 weeks)
5. Order part. (About a week)
6. Fix chair.
7. Make appointment deliver (week +)

They say if insurance oks, can get manual rental chair in a
week. Or maybe power chair in a few weeks.

I just dont get these guys. I know they can't have spare parts
for all chairs, but I don't understand why they can't just
send a joystick to use until.

LUCKILY, a friend of a friend was able to stop by and rewire
to ripped cable. But they got to get a better way to do things.

Greg



-- 
“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

[QUAD-L] Chair Prob

[Greg]

Last night I was raising my chairs seat and the joystick cord came loose 
and hooked around the motor and as I raised it ripped open the cable. 
Repair shop says 4-8 weeks to get fixed. They carry no parts.



1. Get prescription.
2. After they get that, make appointment to get chair checked out. (week +)
3. They pick up chair.
4. Get Insurance OK. (about 2 weeks)
5. Order part. (About a week)
6. Fix chair.
7. Make appointment deliver (week +)

They say if insurance oks, can get manual rental chair in a week. Or 
maybe power chair in a few weeks.


I just dont get these guys. I know they can't have spare parts for all 
chairs, but I don't understand why they can't just send a joystick to 
use until.


LUCKILY, a friend of a friend was able to stop by and rewire to ripped 
cable. But they got to get a better way to do things.


Greg

[QUAD-L] covid check

[Greg]

i finey got my check, it was mailed, not transferred.
greg

[QUAD-L] Neck Warmer

[Greg]

I saw this electronic neck warmer / cooler, very cool idea. I wonder if 
it works very well.



https://www.amazon.com/G2T-Electric-Adjustable-Ergonomic-Outdoors/dp/B07QN4B3KF

G2T

Greg

Re: [QUAD-L] Anyone know how Quads will fair if they get Virus?

[Greg]

My guess is not well. Higher the level, the less well.
Greg

On 3/18/2020 9:52 AM, DAVID LEWIS wrote:

Anyone know of Quads getting the virus yet?

Re: [QUAD-L] Bladder and stomach problems

[Greg]

drinking filtered water, the kind that uses salt tabs?

On 3/16/2020 9:55 AM, Eric Olson wrote:

hmm not sure I've ever heard anyone describe symptoms like that

On Sun, Mar 15, 2020 at 7:40 PM Toby Ausbun > wrote:


What’s it mean when you take a big drink of water and you get
stomach pain and your mouth tastes like you have sand in it???

Sent from my iPad

Re: [QUAD-L] Hello!

[Greg]

Not at all. Odds are very low unless you are a traveler, around 
travelers, etc. I might not go to a big event, but nt worred over it.

Greg

On 3/14/2020 1:32 PM, Nichole Rohling wrote:


Jeff,

With our compromised lungs I am just curious who is afraid of getting 
it. Do you feel at risk or are you in a hot spot? Not worried at all?


I am more likely to get the flu but like I said, I stay home mostly so 
my exposure to flu is pretty low.


However, my daughter and family live in Guam (Military) and they are 
supposed to be moving back the 1^st week of May.


Their travel will be military flights to Seattle then commercial to 
Oklahoma. They are staying with me 30 days.


Now their move might be postponed. So many things cancelled in OK and 
we only have 3 cases I think.


Nicki

*From:*Jeffrey Gaede [mailto:jsga...@yahoo.com]
*Sent:* Saturday, March 14, 2020 1:45 PM
*To:* Nichole Rohling
*Subject:* Re: [QUAD-L] Hello!

Bring on the drugs! Oh, I think you're talking about that bug. 
Rhetorical question? Don't you mean who is afraid of taking risk that 
can make them much more likely to catch the virus? Just curious… Jeff


On Saturday, March 14, 2020, 11:40:42 AM PDT, Nichole Rohling 
 wrote:


Still here!

Not much discussion but who is afraid of getting COVID-19? I stay home 
mostly so I’m not super worried.


Nicki

*From:*Jeffrey Gaede [mailto:jsga...@yahoo.com]
*Sent:* Friday, March 13, 2020 9:27 PM
*To:* quad-list@eskimo.com
*Subject:* [QUAD-L] Hello!

So who all is still here and what is everyone talking about?

Jeff

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

[Greg]

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 
mailto: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 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 mailto:aman...@gmail.com>> 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 wi

[QUAD-L] Podcasts Alexa

[Greg]

I coudn't sleep so I was playing around with Amazon Alexa. I found I 
could have it play podcasts, though I never played one before, no idea 
on what ones good. But I found they have Old Time Radio ones. Gunsmoke, 
Buck Rogers, Superman, Space Patrol, etc. Just say "Alexa, play Gunsmoke 
Podcast". I use to download them on my MP3 player.

Greg

[QUAD-L] Cold

[Greg]

I hate being so cold...
And its only in the 60s, you east coast people must just freeze.
I ear a tshirt at night and earmuffs. Otherwise I end up with blankets 
over my face.


I think my health is finely back to pretty good. Though still not very 
active yet.


Greg

[QUAD-L] Cold

[Greg]

I don't know how you guys do it, living in cold weather areas.
I'm near Phx and I'm freezing. Wearing a hat, sweater, blanket, siting 
by  portable heater, under ceiling heat vent. drinking hot drinks. Was 
using a heated blanket, but it stopped getting warm. Just ordered a new one.

I just can't get warm. Its been a very rainy month.

Greg

[QUAD-L] Bipap Mask

[Greg]

I have to wear a Bipap mask at night, but can't find one that feels ok.
It has to go on so tight so air does not leak out.
I bought liners, but still bothers my skin an bridge of my nose.
Anyone use one they like?

Greg

Re: [QUAD-L] Wondering

[Greg]

I used these Bullets and these enemeez.

https://www.allegromedical.com/otc-medications-c6752/enemeez-mini-enema-ducosate-sodium-283-mg-p564960.html

But changing to a colostomy, best thig ever

Greg


On 11/15/2019 10:24 AM, Eric Olson wrote:

https://www.allegromedical.com/bathroom-assists-c517/magic-bullet-suppository-p190938.html

On Fri, Nov 15, 2019 at 12:14 AM <mailto:ismaelcavaz...@gmail.com>> wrote:


Hello guys I wanted to ask you question to you know different
brands they are of suppositories that I could buy off the counter
to have a bowel movement take your God bless you

[QUAD-L] Hospital

[Greg]

I've been in-out of the hospital again. 1st time 2 was for months.

Butt sore, Bone infection, (antibiotics caused), Kidney failure – 
Respiratory failure (dialysis and ventilator). Finely weaned off both.


Since then I've had 4 ER 1 day visits, a 12, 7, 5, 5, and a 3 day visit.

A number of other bad issues, but mostly my lung keeps getting fluid 
around it. (Pleural Effusion) Had to drain it a few times a week. Finely 
had surgery. Looks ok now.


I lost so much weight and strength, I couldn't take big enough breaths 
at night to get rid of all the C02. Id sleep in my chair all day, no one 
could wake me up. My CO2 levels were in the 80s, supposed to be in the 
30s. Other times I would act normal for a few days, but then remember 
nothing.


So now I have to use a feeding tube at night and eat during the day. 
Plus I need to use a Bipap machine to make me breath deeper at night.



Greg

[QUAD-L] Health

[Greg]

After my big health scare, Kidney and Lung failure. My heart was in 
constant flutter mode. Got that fixed. But after 6 weeks, I still can't 
sit up. If I sit up for 30 secs, I get so out of breath, like I ran a 
mile. I need to recline for 30 min, I've had every test done. no doc can 
find the cause.


Greg

[QUAD-L] Weekk

[Greg]

After in bed for 2 months, how long before you get yor strength back?

Thx Greg

[QUAD-L] It's me Greg

[Greg]

Update on my health journey:

It all started with an antibiotic. The dose kept being too high and they 
kept lowering it, but it continued to be high and after about a week I 
ended up being very loopy in the head, so they took me to the hospital 
and by the time I got to the front door I don't remember anything for 
about a month.


I ended up being in complete kidney failure which snowballed into 
respiratory failure. I was on daily dialysis and a ventilator. Thank 
goodness I don't number the 1st month, but the 2nd month when they were 
trying to wean me off the ventilator was very hard. I still have a lot 
of fluid on my right lung so I have to drain it about every 3 days and 
that's pretty gross and uncomfortable.


This last Monday I had to go back in for an Ablation in my heart. They 
had to stick a catheter up a vein in my groin that allowed them to burn 
the extra cells that kept my heart in constant Aflutter for the past two 
months and wouldn’t stop. I'm still having trouble sitting all the way 
up. I'm very tired, out of breath, very weak and I not able to type very 
long, so I haven't been writing. I'm am speaking into a phone right now 
as I can't type all this.


The doctors had told me I’d be on dialysis and a ventilator the rest of 
my life at one point and was on the verge of death multiple times during 
the first weeks. My kidneys started showing a glimmer of function after 
a few weeks, but they still didn’t think they would ever be back to 
normal. I am relieved to report that I am free of both the dialysis and 
the tracheotomy. I just went to the kidney doctor this week and he told 
me my kidneys are back to normal, so that's good.


Thanks for all your kind words and prayers and I hope I can be back to 
posting soon. -Greg

Re: [QUAD-L] Baclofen ?

[Greg]

Is it just spasms or sweating too?
Is your blood pressure going up at the time?
If sweating too, I doubt its a Syrinx.

Greg

On 5/17/2019 9:29 AM, Danny Hearn wrote:
I just got out of the hospital after about a 10 day stay..I went 
in trying to find out what was causing dysreflexia and bad spasms in 
legs,belly and back. They were clueless and just kept pumping me full 
of tons of oral and IV antibiotics of all kinds thinking it must be a 
UTI infection. All they did was cause me to get my bowels impacted 
from so much antibioticsthat caused me a 3 day stay to turn into 
10 days. I have been home for 2 days now and all the Dysreflexia and 
Spasms are coming back. I can't find the causethey did CT Scans 
and X-Rays but can't find anything. I have been a C-6/7 Quad for over 
21 Years but have never needed Baclofen but starting to wonder how 
many of You use it and may that help???  About the only thing I can 
think of other than what we have checked is that I have a Syrinx in my 
spine, but most doctors don't want nothing to do with that issue. I 
sure wish my life could just get back to my normal Quad life without 
all this Dysreflexia and Spasms going on. Dan H***  St.Louis, Mo.

[QUAD-L] TV, Into The Badlands

[Greg]

Anyone watch Into The Badlands?
Great show.
Greg

[QUAD-L] Anxiety

[Greg]

Any of you guys have anxiety issues?
I went through a bad spell a few year ago. It would hit any time, for no 
reason. Like I could not get enough air. It was really bad if it 
happened in bed. I would start to feel like I had to get up right then, 
even if it was 2am. It started happening 3 or 4 times a week. I ended up 
staying in my chair all night, knowing it was going to happen that 
night.  It was the fear of it happening that really got to me. Not even 
sure what the fear was. Mostly worrying about getting old I think.


Greg

Re: [QUAD-L] Bad Autonomic Dysreflexia

[Greg]

My BP is usually low 90/??, but when I get the sweats and bad headache, 
I've hit 225/??.
90% of the time its bowel or bladder related. Never had Kidney stones, 
but had bladder stones before. I have sweated, but not headaches, from 
shoes, butt sore, burn, ingrown toenail, tc.

Greg

On 5/5/2019 9:48 AM, Eric Olson wrote:

How high is your BP?  What usual suspects have you checked?  kidney stone?

<https://www.avast.com/sig-email?utm_medium=email_source=link_campaign=sig-email_content=webmail_term=icon> 
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On Fri, May 3, 2019 at 6:43 PM Greg <mailto:g...@eskimo.com>> wrote:


Can you get yourself to sweat by pushing on areas? Push all over
your pecker. I had an issue like that and it was a yeast
infection. Doesn't always show up unless tested for it. Touching
my crotch or tip sent me into a painful headache. Of course ankles
can get sores too.

Greg


On 5/3/2019 3:00 PM, Danny Hearn wrote:

Hi  All, I've been having an ongoing serious problem with
dysreflexia, It has now been going on about  20 days now1st I
went to Emergency at hospital and they thought it was just a bad
infection and put me on cipro 500 mg.--- Then about 3 or 4 days
of taking that nothing was any better so then my urologist told
me to quit taking that and put me on another antibiotic called
cefdinir 200mg. and I took those for 10 days---I'm still having
trouble so my family doc sent me for 2  different CT Scans, One
with Contrast and One without but say they can't find nothing. I
can't hardly ever lay down in bed very long or the A.D. gets bad
and I have to spend most of my time up in my powerchair. We can't
find anything such as bedsores or the basic things to look for.
Now I'm starting to even get strong spasms even up in the chair.
My Neurologist is retired so I got to find a new one. I do have
syringomeyalia ( a Syrinx ) Not sure if that can be the problem
but never getting much sleep is killing me and my wife. Do any of
you have any idea's on this ?? Thanks, Dan H***

[QUAD-L] Sweating

[Greg]

I'm been having the sweating issue for almost 2 months now, but mine is 
sweating whenever i sit up in my chair. though i found the cause. I had 
a sore growing under the skin on my butt. It tunneled and broke open.


I was put on 2 IV antibiotics, but last night I had to call 911. I was 
so dizzy, BP was 62/50. The meds gave me such a stomachache I wasn't 
drinking. Got dehydrated. One of the IVs they need to check blood levels 
for kidneys, mine was way too high, was toxic. I have to stop for a few 
days.


But they are going to put me on a IV just for extra fluids. I'm going to 
see if I can do that monthly after too. I've called 911, 4 or 5 times 
now for dehydration. I'm always sitting outside in AZ. And just don't 
drink enough.


Greg

Re: [QUAD-L] Bad Autonomic Dysreflexia

[Greg]

Can you get yourself to sweat by pushing on areas? Push all over your 
pecker. I had an issue like that and it was a yeast infection. Doesn't 
always show up unless tested for it. Touching my crotch or tip sent me 
into a painful headache. Of course ankles can get sores too.


Greg


On 5/3/2019 3:00 PM, Danny Hearn wrote:
Hi  All, I've been having an ongoing serious problem with dysreflexia, 
It has now been going on about  20 days now1st I went to Emergency 
at hospital and they thought it was just a bad infection and put me on 
cipro 500 mg.--- Then about 3 or 4 days of taking that nothing was any 
better so then my urologist told me to quit taking that and put me on 
another antibiotic called cefdinir 200mg. and I took those for 10 
days---I'm still having trouble so my family doc sent me for 2  
different CT Scans, One with Contrast and One without but say they 
can't find nothing. I can't hardly ever lay down in bed very long or 
the A.D. gets bad and I have to spend most of my time up in my 
powerchair. We can't find anything such as bedsores or the basic 
things to look for. Now I'm starting to even get strong spasms even up 
in the chair. My Neurologist is retired so I got to find a new one. I 
do have syringomeyalia ( a Syrinx ) Not sure if that can be the 
problem but never getting much sleep is killing me and my wife. Do any 
of you have any idea's on this ?? Thanks, Dan H***

Re: [QUAD-L] Butt Wound

[Greg]

Thx, I use to heal fast, but the last 20 years has really slowed down,
Greg

On 4/28/2019 9:51 AM, Eric Olson wrote:
Glad you're home.  Unfortunately, it sounds like you've got a long 
road ahead of you.


On Sat, Apr 27, 2019 at 2:26 PM Greg <mailto:g...@eskimo.com>> wrote:


Finely out of hospital. Went in Wed got out Sat.
Infectious Disease Doc wanted to cut me open and debride the
wound, scraping to the bone. Plastic Surgeon didn't want to open
the wound that much and make it that big.
So we will bebride a little weekly, but try IV antibiotics for 6
weeks first. Hopefully  getting rig of the bone infection will
help it start to heal up.

Greg

On 4/24/2019 2:00 PM, Greg wrote:

Got results back from my MRI on my butt wound. Both sides have an
infections. The wound was swabbed and had no infection, it's in
the bone. Getting admitted to get a PIC Line for IV antibiotics.
I've never sweated so bad so long. At least they found the cause
of why it's not getting better.

One cool thing, it qualifies me to be able to use the Hyperbaric
Chamber.
Never been in one before. My wound docs office has the only one
for wounds in AZ.

Greg

Re: [QUAD-L] Butt Wound

[Greg]

Finely out of hospital. Went in Wed got out Sat.
Infectious Disease Doc wanted to cut me open and debride the wound, 
scraping to the bone. Plastic Surgeon didn't want to open the wound that 
much and make it that big.
So we will bebride a little weekly, but try IV antibiotics for 6 weeks 
first. Hopefully  getting rig of the bone infection will help it start 
to heal up.


Greg

On 4/24/2019 2:00 PM, Greg wrote:
Got results back from my MRI on my butt wound. Both sides have an 
infections. The wound was swabbed and had no infection, it's in the 
bone. Getting admitted to get a PIC Line for IV antibiotics. I've 
never sweated so bad so long. At least they found the cause of why 
it's not getting better.


One cool thing, it qualifies me to be able to use the Hyperbaric Chamber.
Never been in one before. My wound docs office has the only one for 
wounds in AZ.


Greg

[QUAD-L] Butt Wound

[Greg]

Got results back from my MRI on my butt wound. Both sides have an 
infections. The wound was swabbed and had no infection, it's in the 
bone. Getting admitted to get a PIC Line for IV antibiotics. I've never 
sweated so bad so long. At least they found the cause of why it's not 
getting better.


One cool thing, it qualifies me to be able to use the Hyperbaric Chamber.
Never been in one before. My wound docs office has the only one for 
wounds in AZ.


Greg

[QUAD-L] Sweating

[Greg]

When you sweat from A.D. do you sweat in same areas no matter the cause?
I sweat either on my forehead, right temple, back of neck, or all 3 areas.
But, I found no pattern. As far as Bladder is forehead, Bowels are 
temple, etc.

Anyone notice a different sweating location caused by different causes?

Greg

[QUAD-L] MRI

[Greg]

Getting an MRI tomorrow on my butt. I hate getting those. My sore was 
just surface, but after a month broke open and was tunneling deep. I 
sweat very bad just sitting up for a few minutes. My last sore was much 
worse but never made me sweat. No infection, but they want to see inside 
an check for bone infection.


Greg

Re: [QUAD-L] Butt Sore

[Greg]

I'm not sure ours are worse. Id rather my butt bleed than my brain.
Good luck
Greg

On 4/12/2019 6:50 PM, Eric Olson wrote:
Wow!  You guys make me feel like such a whiner.  If it makes you feel 
any better, a caregiver dumped me out of bed and my head hit the floor 
so hard it caused a couple brain bleeds.  Of course, I picked up a 
respiratory infection while in the hospital and have to take an 
anti-seizure medication because brain bleeds can cause seizures.  
Still nothing compared to what you two are going through


On Thu, Apr 11, 2019 at 1:38 PM Judy Meredith <mailto:jmeredith...@gmail.com>> wrote:


Greg, I'm dealing with a bone infection and they are shearing the
bone to assist with healing. The tunneling was 12 centimeters but
now only 3. Truly it is imperative to have a good bed and PROTEIN.
I have been thru he'll with this. I would not wish this on anyone.

Meredith

On Wed, Apr 10, 2019, 2:30 PM Greg mailto:g...@eskimo.com>> wrote:

I had a butt sore on my left side. It looked like just a piece
of skin sheared off. Only a surface wound. For a month it
would heal half way, then shear again. I got my cushion
pressure mapped, by the next week I had another sore on my
other side. Today I got checked and its very deep. It must
have been tunneling under the skin and broke open. Its almost
an inch deep, then goes sideways. I'm getting checked for an
infection, and for a bone infection.

    Errrr Greg

[QUAD-L] Butt Sore

[Greg]

I had a butt sore on my left side. It looked like just a piece of skin 
sheared off. Only a surface wound. For a month it would heal half way, 
then shear again. I got my cushion pressure mapped, by the next week I 
had another sore on my other side. Today I got checked and its very 
deep. It must have been tunneling under the skin and broke open. Its 
almost an inch deep, then goes sideways. I'm getting checked for an 
infection, and for a bone infection.


E Greg

[QUAD-L] Sweating

[Greg]

You would think after 36 years as a quad, my family would understand, 
when I sweat, I'M NOT OVERHEATED! I keep sweating and they keep saying, 
"Its probably too hot outside." I keep saying "Its not that kind of 
sweating." Oh well,they mean well.

Greg

[QUAD-L] Colostomy Sweating

[Greg]

I got to go see  a doc this week, I'm sweating extremely bad when going. 
I've not seen a doc about my colostomy since I got it. Do I see a: 
Internal Medicine Doc. Wound Doc. Gastroenterologist.


Thanks, Greg

Re: [QUAD-L] Pressure sores

[Greg]

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

[QUAD-L] Sore

[Greg]

I have a small butt sore, been going to the wound doc once a week to get 
debrided. It was just a surface wound, like a sheered area of skin. It 
was 66% healed on Mon. Today its twice as big as when it started. 
Something caused sheer, but only sometimes. Wearing jeans 1 day is what 
caused the sore. Doc said it looked like sheer, not pressure.


Greg

[QUAD-L] Sweating

[Greg]

I am going crazy sweating on the back of my neck.
First I thought is was because of a small sore on my butt. But its not.
Then I thought UTI, but no.
It seems to be my colostomy, but only when I'm going while sitting up. 
Reclining stops it.


I've had it for years now, never caused an issue. From liquid to rock, 
never caused sweating. I guess its time to see someone about it. 
Everything is working fine, but sweating while going.


Anyone ever have this issue?

Thx
Greg

Re: FW: [QUAD-L] BOWEL PROGRAM: What works best - Magic Bullet/Enemieez/Other?

[Greg]

I used Dulcalax for years, then went to Magic Bullets. But it was taking 
hours. Then went to Enemeez. Worked better for awhile. But things just 
got slower. So just "Bagged It" altogether. Got a colostomy. Best thing 
I ever did. 60 seconds a day. Every 5 days takes an extra 60 seconds.


Greg

[QUAD-L] Pressure Mapped

[Greg]

Just got my chair cushion pressure mapped. I was worried I didn't have 
enough air in it, but they took out sooo much more. I feel so low, sunk 
in. Butt, the map went from 2 dark red areas to no red. Its great to see 
real time pressure. So I can move my legrest around and see exactly 
where the pressure moves, see what position has the least pressure. Its 
really interesting.

They suggest mapping every 6 months.

Greg

Re: [QUAD-L] Sweating

[Greg]

I've checked everything. Even though my butt wound is small, more like a 
skin sheer, just the skin rubbed off a tiny spot. I've been seeing a 
wound doc just in-case it was the cause. He doesn't think so, even when 
he pokes and prods I don't sweat.


Bladder makes me sweat more than anything, but no UTI. I don't think a 
draining issue, because I can sweat just seconds after sitting up. 
Sometimes hours after, it comes and goes.


Thinking bowel, but everything is moving fine. I am having a lot of gas, 
that can be painful. But when ever I sweat a lot, it seems to cause some 
gas. My Uro says uti's, etc can cause abdomen area spasms and that can 
cause gas.


The back of my neck is just wet today. Driving me nuts. Can't get into 
my Uro until the 25th. He just left on vacation. But if not better soon, 
I'll see if I can see someone else.


Greg

[QUAD-L] Sweating

[Greg]

I am just sweating when I sit up. I recline and it goes away. But can't 
find the cause. No UTI, my butt sore, very tiny, has healed up fine. My 
cushion is fine. Crotch is fine. The only thing I can think of is my SP 
Cath, the skin around it is "prouding". Where the skin kind of flares 
back. We use these sticks that cauterizes the skin. But thats never 
caused this sweating before.


I'm trying to get back in to my Uro to get my bladder scoped. Its beet 
awhile, might as well check for issues in the bladder too.


Frustrating...

Greg

Re: [QUAD-L] Colostomy

[Greg]

Agreed..
Though I've never had a blow out.
A few times the skin wafer part lifted but never leaked out.
I wish I did it day 1.

Greg


On 2/27/2019 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 
mailto: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] Sunburn / Antibiotics

[Greg]

Remember to not sit in the sun too long while on antibiotics.
Though it was not very warm, my doorway sets back a few feet. It blocks 
the wind and stays warmer in there. I feel asleep for an hour. I got 
these mini sunburn blisters on my nose and forehead. Ouch, they hurt. My 
lips are burnt too. Something in antibiotics makes you burn fast.


Greg

[QUAD-L] UTI?

[Greg]

I hate UTIs, I don't do sick very well, I'm a bad patient .
Just sweating, shaky, stiff, I have a small butt sore, but its healing 
fine. I went to Urgent Care and they said yes its a UTI. The antibiotics 
they gave me I think gave me Ebola, liquefied my insides. But after 3 
days they said the culture showed no UTI. Yet I feel worse. So I went to 
my doc and they think UTI, so culturing again and going to my old 
standby Cipro. Also checking my sore for infection and blood tests. But 
only UTIs have ever made me feel this way.

Greg

[QUAD-L] Re: [QUAD-L] the Pro bed – does anybody have one? – Voice-activated self turning bed

[Greg]

I've used this mattress for years with no probs.
Its circulates the air, every other tube deflates then inflates.


https://www.amazon.com/Drive-Medical-Mattress-Replacement-Alternating/dp/B002VWKO9W/ref=sr_1_fkmr0_1_a_it?ie=UTF8=1549811935=8-1-fkmr0=Drive+Medical+Med-Aire+8%22+Alternating+Pressure+and+Low+Air+Loss+Mattress+System+Pump+ONLY%2C+14027P



On 2/10/2019 2:40 AM, DEBRA DEW wrote:
– hospital bed to turn me while I'm sleeping so I could sleep through 
the night and bye-bye. Sleep deprivation –.


https://www.pro-bed.com/models-and-accessories


*Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
Formerly: Homeschooling mom of 9 and pvt. pilot
Currently: tetrapeligic due to advanced MS and living in a nursing 
home hell 18 years

Phone: 561-58 6-9399
SC student 20yrs  … can not brag about my love for YHVH God because I 
fail Him daily, but I can brag about His love for me because He never 
fails me.
ROMANS 8:28… Kindness is the language the deaf can hear and the blind 
can see – Mark Twain*

B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH
THE FACT THAT THERE IS A HIGHWAY TO HELL AND ONLY A STAIRWAY TO HEAVEN 
SAYS A LOT ABOUT ANTICIPATED TRAFFIC NUMBERS

*Jesus is the living word*

[QUAD-L] Web Hosting

[Greg]

Anyone have their own web page, where you own the domain and have email 
with it?


Where is a good place to host it? GoDaddy / Wik ?
Is it very complicated?

Thx, Greg

Re: [QUAD-L] Sores

[Greg]

I never thought an electric blanket would get that hot.
I have burned my self so many ways. The worst was dropping a cup of 
coffee. I had an insulated cup that got so hot it burned my hand and 
leg. I rest my cup on a pillow on my lap often leaning it on my stomach. 
I'v burned my stomach many times.

Greg



On 1/31/2019 1:03 AM, Dana Wray wrote:
   I am so sorry. We need to really check our roho’s  every day but we 
don’t. I have heard of many people getting burned On heating pads  and 
electric blankets, since I first joined the Quad-list.
 I recently was burned when my hot coffee glass’s straw broke . It was 
a Drink Aide straw attached to insulated mug that I got at CVS. We   
Were duct  taping it together. A caregiver was not carefully watching 
and it  siphoned .I am now I am using a Fleximug by Fleming. You can 
order different lengths of straws. We don’t know we are getting burned 
because we can’t feel.
 I have had long straw siphon quite a number of times causing burns, 
but I didn’t need surgery. They did need debriefing and  wound care 
appointments for several weeks .


It is terribly unfortunate that the Roho  Corporation cannot make a 
device to check the quantro cushion  for the proper air distribution . 
Why sell a product that can cause wounds on Spinal cord injuries. It 
has happened to me several times .

Dana C 4-5 44 yrs post

On Fri, Jan 25, 2019 at 7:08 PM Greg <mailto:g...@eskimo.com>> wrote:


I wanted to dress up a bit for a photo, jeans instead of sweats.
Only 1 day and I got a sore on my butt. It was not bad, but kept
getting worse. Found out I was bottoming out my Roho. The cover I
used was a bit too big. So the Roho was spreading out too much.

Now last night my shoulder really hurt so I used a heating pad.
Like a mini electric blanket 2x2 feet. It left a big burn blister
about 2 inches.


Greg

[QUAD-L] Magazine Article

[Greg]

Hey, check it out, I was just in an article in a local magazine about my 
photography.


This is the online version, pages 18-21. Click on the cover with the 
girl in a dress.

http://www.chandlerlifestyle.com/

This is jut the article but has extra photos.
http://www.chandlerlifestyle.com/2019/01/28/photographer-greg-wickenburg/


Greg

[QUAD-L] Sores

[Greg]

I wanted to dress up a bit for a photo, jeans instead of sweats. Only 1 
day and I got a sore on my butt. It was not bad, but kept getting worse. 
Found out I was bottoming out my Roho. The cover I used was a bit too 
big. So the Roho was spreading out too much.


Now last night my shoulder really hurt so I used a heating pad. Like a 
mini electric blanket 2x2 feet. It left a big burn blister about 2 inches.


Greg

Re: [QUAD-L] Viewers Choice surveys

[Greg]

How may surveys do you need to do for $50?
Greg

On 1/19/2019 12:43 PM, Jim Lubin wrote:
Anyone interested in doing surveys for points to redeem for 
gift cards? This one is for  Bravo, USA, E!, SYFY and Oxygen. Last 
year I got $50 in Amazon gift cards.


Let me know if you are interested and I can submit your email address. 
If you join before Feb 14, 2019 I will receive 50 points per person 
(up to 250 points).

Re: [QUAD-L] completely hands-free nurse call bell

[Greg]

You can call other Echos as long as they are in your contacts.
Greg

On 1/13/2019 8:56 PM, Noel wrote:

I received an Amazon echo a few weeks ago, can make phone calls
completely hands-free. I suppose you could use it to call the nurse's
station, or the front desk.  I only wish it could be used to receive
phone calls.

On Sun, Jan 13, 2019 at 6:09 PM DEBRA DEW  wrote:

please assist if you have information – desperate –


I need a completely hands-free nurse call bell.


And are there any groups for paralyzed people from the neck down on Facebook

?


Debra Scruggs-Scruggs phalanx-dragon slayers -PRISONER OF HOPE ZECH. 9
Formerly: Homeschooling mom of 9 and pvt. pilot
Currently: tetrapeligic due to advanced MS and living in a nursing home hell 18 
years
Phone: 561-58 6-9399
SC student 20yrs  … can not brag about my love for YHVH God because I fail Him 
daily, but I can brag about His love for me because He never fails me.
ROMANS 8:28… Kindness is the language the deaf can hear and the blind can see – 
Mark Twain
B.I.B.L.E.-BASIC INSTRUCTIONS BEFORE LEAVING EARTH
THE FACT THAT THERE IS A HIGHWAY TO HELL AND ONLY A STAIRWAY TO HEAVEN SAYS A 
LOT ABOUT ANTICIPATED TRAFFIC NUMBERS
Jesus is the living word