I'm a C 4-6 quad, auto accident 30 yrs ago, female.
My normal temp. all year long is 96-97 degrees. Below 96 I'm physically cold,
when my temp is 99 or higher I'm too hot.
I drink very weak hot decaf tea all year long [my nephrologist calls it
colored water]. I am usually cold, but this last winter I just slept with a
very light blanket. I wear shorts all year long to make getting dressed and
undressed easier on my helpers. I wear long socks, leg warmers and a blanket on
my lower half and a coat, shawl like scarf over and around my head, I make sure
my ears, nose and mouth is covered when I go out in the cold.
I do have issues when it gets hot. I only drink hot tea indoors. [I'm a sun
person], I use a cold wet towel around the back of my neck, I constantly keep
wiping my face with a cold cloth, when possible I ask whom ever is around
to use a spray bottle to mist me down and I drink cold Propel water. I don't
drink plain water, my Dr. has me drink Propel to help me keep from getting
dehydrated and it helps keep me from getting light headed and too low blood
pressure [I run low normally anyway].
I've been a quad since 10/27/1978, I was in the hospital for 3 months got
sores on both on my heels, tailbone and both shoulder blades. I then went into
rehab for 3 months, the sores got healed within 1/2 of the time there [hubbard
tank w/ betadine added].
My 2nd sore I got was in 1983 at my tailbone [not caused by sitting], it
required surgery [skin-flap no. 1] 2 weeks in hosp. back up in w/c 16-18 hrs. a
day.
In 2000 I got 2 p/s one under each butt check at the underwear line,
the one on right side healed; the left had to be operated on [May 2001
skin-flap no. 2] 2 weeks in hosp. and I was gradually aloud up in w/c 6-10 hrs.
a day [I'd push it a couple of extra hrs. on special occasions].
2003 p/s on tailbone wound care Dr. said he could get me healed no
surgery, unless the tailbone has gotten infected. MRI done [May 2003 skin-flap
no. 3], but this time they removed my coccyx [tailbone] and sacrum [bone above
tailbone] had to be removed, was given 2 units of blood, in the hosp. 17 days
and in nursing home for 18 days. I was aloud up in w/c gradually up 20 mins a
day to no longer than 8 hrs. [on special occasions maybe 1-2 hrs. longer].
2008 I got a p/s under left butt check [again] went to wound care center
from Feb. to Sept.. On Sept. 24th I had surgery [skin-flap no. 4] I was in the
hosp. 5 days allowed to come home, stay in bed, get turned frequeintly [yawl
right] I've been given permission to get up in my w/c 3 times a day for 1 hr.
at a time [you bet ya]. I couldn't get turned as often as I should of and there
wasn't anybody around to get me in and out of bed and w/c, so... I got a p/s on
my right butt check close to the tailbone was, plus a small spot close to the
groin area [the opening the size of a q-tip top, but it's 4cm deep]. I haven't
been up in my w/c except maybe once every 10-14 days for abt. an hour since
I've been home. Well to cut this a little shorter, skin-flap no. 5 and 6 is
Mar. 25th. I'm not happy, I'm scared, I'm afraid I'm not going to make it and
if I do they want to put me in a nursing home indifinently.
I lost the love of my life Dec. 30, 2007. His name is Anthony. We were
together for almost 20 yrs. He took great care of me. He always told me that
nobody could ever take care of me as good as he did. He was so right. I lost my
best friend, lover and caregiver... my life. We have 3 grandkids [he had a
daughter 10 yrs. before we got together] and his daughter won't let them be in
contact with me because she never liked me and I wasn't a woman to take care of
him, he did everything for me. I tried.
I keep getting told that I handle everything going on in my life very well. I
feel like I'm about to explode. I hope it's not on anybody I love or care about
or somebody I depend on whether I care about them or not.
How do you all deal with the crap thrown at you?
Ruth
C 4-6 quad since 1978 [MO]
