[QUAD-L] What happened to me several years back and last week

[Ismael Cavazos]

It reminds me when I used to be in the nursing home but thank God I'm not
there anymore I was coming out of my room this stupid guy was standing
against the wall waiting to going in the room his mother room right beside
mine and they were busy with his mother we were talking and then she tells
me the stupid thing there is she said to me man you haven't made in life I
stared at him did not say anything and then you don't have any problems no
bills you don't have to get up early to work and repeat the same thing you
guys in your condition got it made in life I I just shake my head I could
not believe what he was saying she said also I bet you are very happy I said
to myself you don't know what you're saying I said to myself if you were
this wheelchair you will not be saying what you're saying stupid but I am
door him and I continue going down the hall that was several years back last
week 1 of my providers was given me a bath and she came out with the crap if
I did not have kids I will not mine being in your condition they do
everything for you and everybody is doing everything for you like a king
wipe your eyes give you some water scratch her head feet you and cleaning
your but what else you want you have it made I just sent to her sorry that
what I'm going to tell you you talking stupid if I was you just change the
subject and she did I got upset the following day in the morning she give me
the smart remark what my king which me to do for you I told her like I told
you yesterday just do what you're supposed to do and stop talking stupid

 

Re: [QUAD-L] What would you say & do?

[Lori Michaelson]

Well, that is great that the agency is going to report her and give you
another nurse. I am also glad that this particular nurse only *said *something
stupid, rude and ignorant - you didn't get hurt terribly physically by a
nurse like I did - twice. I have written this year on the list numerous
times but I will say it again and then what happened to me by another nurse
before that several years before that:

The first assigned nurse who changed my catheter in 2016 just 2 weeks after
moving back out to Arizona stretched my urethra beyond repair and it
required surgery. Not only did she do that but when she came out the one
and only time she was their "on-call" nurse and she didn't want to be here.
She was the most egotistic, arrogant nurse and person!  It was not until
after she left whereby I knew something right away was wrong. I knew that I
was not being able to urinate through my catheter so I asked my new live-in
caregiver (who was not yet familiar with seeing my catheter changed) to see
if my urethral catheter was actually IN. She looked and conceived the bulb
sitting right there ready to come out. The nurse had not been gone too long
so we call her right away. She didn't think it could possibly be the bulb
to the catheter and said that my aide was probably just seeing flesh
because there is a lot of flesh 'down there' with females. Well, my aide
could see that it was *not *flesh. She wasn't stupid!  The nurse said that
she had already gotten on the interstate and would have to turn around but
that's what she had to. She didn't like it but that is what she had to do.
Unfortunately, enough time had gone by and was just enough time for the
inflated bulb to stretch out my urethra too far (45 minutes).

I tried to get a lawyer and the lawyer I first spoke to said that he could
possibly help me IF I needed surgery and when I found out I did I kept
trying to call him back (he told me to call any time) he didn't return any
of my phone calls and then finally had one of his staff members that dealt
with medical malpractice called me (like he couldn't himself?) saying that
there was no way I could "prove" she did it which was the truth. So that
attorney would not help me as it would not be feasible for them to try and
prove something that couldn't be actually proven.  I tried a different
attorney and was told the same thing.  :-(

The only other time I was hurt by a nurse (and it was just as bad) was when
a nurse came when I had my pressure sore and she was required to measure it
for my doctor. Neither my husband nor I knew that she had taken a piece of
paper from her bag (and not a sterile strip for measuring things) whereby
she infected it so badly that it *spread *like any open wound exposed to
bacteria and therefore causing an infection would do so it turned into a
Stage I wound to a Stage III wound which had me bedridden for a great deal
of 3 years. It had to be debreeded by a wound doctor who turned out to be
the best doctor in the entire state but it still took 7 visits every other
week with me being in bed the rest of the time because each and every time
I would get up shearing would take place and a bubble would form which
would eventually break open. Just going over the slightest threshold did
that. Thankfully,  now all of that comprised wound area is fine but having
back-to-back bladder infections which I simply don't understand because we
are doing absolutely, unequivocally everything correctly. I just got those
infections from the hospitals I was going to or had to go to because that
type of bacteria was never present in my urine prior to going to them.

I couldn't do anything about the nurse who infected me with a strip of
paper from her bag (god knows how many homes she visits/visited back then)
because we did not realize that it was actually infected by her until it
was too late. The nurse was not so friendly anyway and then the agency gave
me an ultimatum (just because they were a-holes) and having to sign some
full document (I can't remember what it was all about now) that no one in
their right mind would sign. They said if we didn't sign it they would drop
us.

Well, in the meantime, a nurse that became my nurse through them (*after *the
nurse who infected my wound left the agency or something) left them also
because this agency was was changing her paperwork (and she was a SUPER
nurse so why they were doing that is beyond me or her - they were just
playing evil).  Anyway, like I said, she decided to leave them and told us
privately what they were doing to her and she also told us she knew about
the letter they were putting together that they would want to have us sign
- so she said she was going to first contact an attorney (about what they
were doing to her) but then didn't want to go through that whole rigmarole
and just joined another agency and told me I should sign up with this other
agency and she could become my nurse through them. Which was what happened
and between her and my 

Re: [QUAD-L] What would you say & do?

[RONALD L PRACHT]

 It depends on the situation. If she was new or been with a person for awhile. 
I think back to b4 I was a quad and how I felt then and what I possibly would 
have said. In the end, shes not your friend.just a person to get you 
through the day. Letting it go is probally the right answer although I know 
hurtful words can haunt you. Concentrate on Pete and your health. Over the 
years I have but told it all from, "Jesus will heal you" to" I would have just 
pulled the plug".  
Ron PrachtOn Saturday, January 5, 2019, 7:26:37 PM CST, Greg 
 wrote:  
 
  I would probably let it go.
 Unless she was overtly rude and treated you bad, like you were less of a 
person.
 A lot of people say things not thinking first.
 If I was injured but got my movement back, I'd thank God every day I was not 
me now.
 Same basic idea
 
 Greg
 
 
 
 
   
 She asked me 
 "How long have you been a quad"?
 I told her  46 years and she said as she looked to the ceiling  ... very 
loudly 
 "I thank God everyday that I'm not you"!
 
 What would have said and done?
 Bobbie 
   
 
 
   

Re: [QUAD-L] What would you say & do?

[Greg]

I've had people say things like that.
Like when a football player (Byrd) was injured, but started walking later.
Because they just know how to work so hard for what they want.

Greg

On 1/5/2019 5:19 PM, Bobbie Humphreys wrote:

Dan,
       I had an aunt tell me "If you really wanted to, you could walk."
Bobbie

On Jan 5, 2019, at 5:29 PM, Danny Hearn > wrote:


True, Bobbiesome folks say the most rude and crazy things...A 
close family friend of ours told me If I was paralyzed like you I 
could not live like that, I would just kill myself. How can people 
say such stuff like that?  Plus people talk a lot of smack, It is 
different IF it happens to them or their close loved ones.   Dan H.***


On Saturday, January 5, 2019, 4:21:05 PM CST, Bobbie Humphreys 
mailto:bobbiehumphre...@gmail.com>> wrote:



I had a nurse, 3rd time here, come Tuesday.
She asked me
"How long have you been a quad"?
I told her  46 years and she said as she looked to the ceiling  ... 
very loudly

"I thank God everyday that I'm not you"!

What would have said and done?
Bobbie

Re: [QUAD-L] What would you say & do?

[Greg]

I would probably let it go.
Unless she was overtly rude and treated you bad, like you were less of a 
person.

A lot of people say things not thinking first.
If I was injured but got my movement back, I'd thank God every day I was 
not me now.

Same basic idea

Greg



She asked me
"How long have you been a quad"?
I told her  46 years and she said as she looked to the ceiling 
... very loudly
"I thank God everyday that I'm not you"!

What would have said and done?
Bobbie 

Re: [QUAD-L] What would you say & do?

[Bobbie Humphreys]

So you know, I didn't say anything to the stupid nurse but I did call the 
agency and she gasped and told me she was going to report her to a supervisor 
and give me another nurse.
Bobbie 

> On Jan 5, 2019, at 6:42 PM, Jim Lubin  wrote:
> 
> I read my mom your message, she said, "what an ignrant bitch!" 
> 
>> On Sat, Jan 5, 2019 at 2:20 PM Bobbie Humphreys  
>> wrote:
>> I had a nurse, 3rd time here, come Tuesday.
>> She asked me 
>> "How long have you been a quad"?
>> I told her  46 years and she said as she looked to the ceiling  ... very 
>> loudly 
>> "I thank God everyday that I'm not you"!
>> 
>> What would have said and done?
>> Bobbie

Re: [QUAD-L] What would you say & do?

[Bobbie Humphreys]

Dan,
   I had an aunt tell me "If you really wanted to, you could walk."
Bobbie 

> On Jan 5, 2019, at 5:29 PM, Danny Hearn  wrote:
> 
> True, Bobbiesome folks say the most rude and crazy things...A close 
> family friend of ours told me If I was paralyzed like you I could not 
> live like that, I would just kill myself. How can people say such stuff like 
> that?  Plus people talk a lot of smack, It is different IF it happens to them 
> or their close loved ones.   Dan H.***
> 
> On Saturday, January 5, 2019, 4:21:05 PM CST, Bobbie Humphreys 
>  wrote:
> 
> 
> I had a nurse, 3rd time here, come Tuesday.
> She asked me 
> "How long have you been a quad"?
> I told her  46 years and she said as she looked to the ceiling  ... very 
> loudly 
> "I thank God everyday that I'm not you"!
> 
> What would have said and done?
> Bobbie

Re: [QUAD-L] What would you say & do?

[Jim Lubin]

I read my mom your message, she said, "what an ignrant bitch!"

On Sat, Jan 5, 2019 at 2:20 PM Bobbie Humphreys 
wrote:

> I had a nurse, 3rd time here, come Tuesday.
> She asked me
> "How long have you been a quad"?
> I told her  46 years and she said as she looked to the ceiling  ... very
> loudly
> "I thank God everyday that I'm not you"!
>
> What would have said and done?
> Bobbie

Re: [QUAD-L] What would you say & do?

[Danny Hearn]

 True, Bobbiesome folks say the most rude and crazy things...A close 
family friend of ours told me If I was paralyzed like you I could not live 
like that, I would just kill myself. How can people say such stuff like that?  
Plus people talk a lot of smack, It is different IF it happens to them or their 
close loved ones.   Dan H.***
On Saturday, January 5, 2019, 4:21:05 PM CST, Bobbie Humphreys 
 wrote:  
 
 I had a nurse, 3rd time here, come Tuesday.
She asked me 
"How long have you been a quad"?
I told her  46 years and she said as she looked to the ceiling  ... very loudly 
"I thank God everyday that I'm not you"!

What would have said and done?
Bobbie   

[QUAD-L] What would you say & do?

[Bobbie Humphreys]

I had a nurse, 3rd time here, come Tuesday.
She asked me 
"How long have you been a quad"?
I told her  46 years and she said as she looked to the ceiling  ... very loudly 
"I thank God everyday that I'm not you"!

What would have said and done?
Bobbie 

Re: [QUAD-L] Oldest living Quads

[Lori Michaelson]

Ditto along with what Greg said except I feel like I am dying of pain and 3
bacteria that keep coming that are multi-drug-resistant. Thing is... I was
healthy 3 years ago and it took "one insect to damage so much grain" (Elton
John's words) when a nurse ruptured my urethra forcing me to have surgery
and a different type of catheter that I never wanted. Then the hospitals I
was in for the ones that those bacteria are found in. Then once you get
these particular bacteria... it's almost impossible to get rid of them.

What is more disabling for me or has made quadriplegia 80% harder is
acquiring Posttraumatic Syringomyelia. I took my endurance down so much
that I had to quit working back in 1995. Then, when I began to have
different caregivers in 1997 pain started happening. It didn't feel like I
was being moved wrong or anything but something was going on because it
started where the shunt was put in (T1 or a little higher) and started
moving down my spine and wrapping around under my right shoulder blade. A
pain medication who keeps it tolerable but if I cry it hurts 100% more and
the pain lasts for several days, if someone touches it or pushes in on that
area it hurts badly like now because yesterday during a doctor visit she
wanted to listen to my lungs and the shunt is put into my pleural cavity so
I asked her what muscles are around that area because if I overuse my right
arm (those are the muscles I need to use my only working arm) it hurts 100%
more.

You are probably wondering if my shunt is working or have I been checked
out and the answer is yes.

Almost a year ago or close to it I have been having trouble getting in the
chair I can't figure out the reason. I only have my live-in caregiver to do
it with my electric lift. My scoliosis has gotten worse over the last 3
years and especially the first year after moving back to Arizona (2016) I
was leaking all over the place because of my urethra being stretched beyond
repair and until I could have surgery (or figure out the extent of what
happened before that) and I had to roll back and forth around 10 times a
day and stay in bed because of the amount of leaking around my urethral
catheter.

Since  my husband's death I still have those stress-related Psychogenic
Nonepileptic Seizures especially when it is a very stressful day and there
is pain accompanied by it as well as being tired. So those are now a part
of my life.

My lower extremity edema got worse the first three months after moving out
of here and I wouldn't put it past stress for that to get worse over the
years. I do everything I'm supposed to do and the compression stockings
(gradient or otherwise) do not help. My ankles and feet just stretch them
out and they are not old. So I can't spend as many hours in the chair as I
would like to.

I now feel like I am just a patient.

I am wondering if any of you have and to having neck fusion after your
injury? I did back in 1980 and I guess the neurosurgeon did not want my
neck going anywhere because it is used from C2 through C7 so I can't turn
my head left or right very far at all.

~Lori
C4/5 complete Quad.
Age - 54, 39 years post


On Sat, Jan 5, 2019 at 8:01 AM Greg  wrote:

> I'm 54, 36 years post. I feel like the body of the oldest quad ever.
> Yesterday I dressed up just a bit, jeans instead of sweats. That's all it
> took to break open my butt. Its only a skin break down, not deep, but did
> bleed.
>
> Greg
>
> On 1/4/2019 11:58 PM, Dana Wray wrote:
>
>  Congratulations Billy
> On Wed, Jan 2, 2019 yat 5:06 PM Billy Lang  wrote:
>
>> I will be 70 in May, 30 years post in July. Just got a real good reason
>> to hang around.
>>
>>
>> On Dec 26, 2018, at 4:48 PM, Jim Lubin  wrote:
>>
>> Some of the quads in this group are the longest living that I have seen.
>> Maybe it's the good company. 
>>
>> Merry Christmas
>>
>> On Wed, Dec 26, 2018 at 1:15 PM Bobbie Humphreys <
>> bobbiehumphre...@gmail.com> wrote:
>>
>>> Depends on a lot of factors
>>> I ca feel myself dying, I'm at 46 years
>>>
>>> Merry Christmas 
>>> Bobbie
>>>
>>> On Dec 26, 2018, at 1:48 PM, Shirley Bell  wrote:
>>>
>>> Hi Guys, Merry Christmas!! kinda late. My family has me dead and buried
>>> before long!  Made me mad. I am 59 been a quad 41 yrs. Are there any stats
>>> on life expectancy of us? thanks
>>>
>>>
>>
>

-- 
"Petting, scratching and cuddling a dog could be soothing to the mind and
heart and deep meditation and almost as good for the soul as prayer." ~Dean
Koontz

Re: [QUAD-L] Oldest living Quads

[Greg]

I'm 54, 36 years post. I feel like the body of the oldest quad ever.
Yesterday I dressed up just a bit, jeans instead of sweats. That's all 
it took to break open my butt. Its only a skin break down, not deep, but 
did bleed.


Greg

On 1/4/2019 11:58 PM, Dana Wray wrote:

 Congratulations Billy
On Wed, Jan 2, 2019 yat 5:06 PM Billy Lang > wrote:


I will be 70 in May, 30 years post in July. Just got a real good
reason to hang around.



On Dec 26, 2018, at 4:48 PM, Jim Lubin mailto:jlu...@eskimo.com>> wrote:

Some of the quads in this group are the longest living that I
have seen. Maybe it's the good company. 

Merry Christmas

On Wed, Dec 26, 2018 at 1:15 PM Bobbie Humphreys
mailto:bobbiehumphre...@gmail.com>>
wrote:

Depends on a lot of factors
I ca feel myself dying, I'm at 46 years

Merry Christmas 
Bobbie

On Dec 26, 2018, at 1:48 PM, Shirley Bell mailto:sbell...@cox.net>> wrote:


Hi Guys, Merry Christmas!! kinda late. My family has me dead
and buried before long!  Made me mad. I am 59 been a quad 41
yrs. Are there any stats on life expectancy of us? thanks