Joan
Enjoyed your rambling. Keep it up.
Joan Anglin <[EMAIL PROTECTED]> wrote:
Over the years I have been amazed at the differences between
levels of spinal cord injury. As is so often noted, we vary tremendously. We
each have our own demons to deal with, and we each deal with them in often
ingenious ways. I have often felt frustrated that it was so difficult to find
the answers for seemingly small problems.
Until I came up on this list a couple of years ago, I had been relatively
isolated from other quads. Reno had no physiatrist, so I just used a family
practitioner and she and I dealt with problems as they came up. Lucky for me, I
hardly had any problems. The biggest whammy was being bitten by a brown recluse
spider, and not having it diagnosed until a lot of damage was done. Luckily,
that was during the time I had insurance. The people on this list have so much
experience, and are so willing to share it with the rest of us, that many of
the small problems can be resolved rather simply.
At Santa Clara Rehabilitation, they emphasized keeping everything simple.
Since I had very little access to information about quads, I kept it simple.
The first 14 years bowel care consisted of digital simulation every third day,
but after realizing that I was major lactose intolerant we changed it to four
times a week-Monday, Wednesday, Friday, Saturday-and Ive stayed on that
routine since then.
I did not even have a urologist that was familiar with quads, so I just
stayed with intermittent catheterization, not knowing the options. I do use an
overnight bag with a 14 F red rubber catheter overnight as I do not have
anybody to cath me. Ive been very fortunate and do not have many UTIs, and
have never had a serious one. I must admit that having to stop activities in
order to be cathed is somewhat of a nuisance, but if it means that I will not
have to deal with UTIs I will continue to live with the scheduling problem. Of
course, I cannot be sure that that is why I do not have UTI problems, but if it
aint broke, why fix it? My new urologist told me that one of the advantages of
using intermittent catheterization is that my bladder has stayed a normal size,
and I am able to hold around 500 CCs before my body lets me know it is time.
If I watch what I eat and drink that is usually around 6 to 7 hours.
Except for pressure sores I have enjoyed remarkable health, and thanks to the
clinitron bed my pressure sores have been cured, and I hope that I can remain
free of pressure sores.
Because I cannot feed myself, it has been relatively easy for me not to gain
weight because I hate being fed by other people. One would think after 17 years
that I would be comfortable with it, but the only time it works well is when I
share a plate and realize I am not keeping somebody from eating their food.
JIts also very difficult to snack when I have to ask somebody else to fix it
for me.
This summer I had many tests done, because my physiatrist was appalled that I
have not had scans done regularly. Everything was just OK, and luckily for me
everything was in its right place J. They noted I had a couple of gallstones,
and wanted to watch them.
But over the holidays everything changed. My years of being healthy made me
unaware of how sick I was. When my daughter said that I was yellow, and I had
several days of burning pain in my stomach, I went to the ER. Except for being
yellow, everything appeared to be OK-blood pressure, no fever, pulse rate OK,
and my urine was rather dark, but not really worrisome.
They were extremely busy in the ER, but we let them know I would need to be
cathed in a couple of hours. They were very understanding, and came out a
couple of times to let us know they had not forgotten us, and were able to get
me into a room as quickly as possible. Everything changed however when they
found out I was passing a gallstone and had pancreatitis, and they moved into
high gear. I was admitted, and they explained my options, and we all agreed
that I would have to have my gallbladder removed as soon as the pancreatitis
subsided. My body was ready two days later-not my mind J-and I went to surgery,
only to wake up with a tracheotomy! Certainly not what I was hoping for, as the
anesthesiologist had said there was a 5% chance that I would have to have a
tracheotomy. Unfortunately the scar tissue from my first tracheotomy prevented
a simple intubation, and my daughter had to agree to a tracheotomy.
Now I was facing a much longer stay in the hospital. I was in ICU for nine
days because I had a major bleed-rapid response and all the rest-and really
came face to face with my mortality. My care there was absolutely great, but
then I had to move to a more long-term facility. WOW what a difference. Got
there on Tuesday and, and by Thursday I wanted to leave. I went for hours
without anyone checking in, no call button that I could use, and no way to call
for anybody. Convinced my Dr. to take out the tracheotomy on Friday, and after
a night from hell on Friday night, convinced him I would be much safer at home
with people who would be there for me. Saturday night was rough, but certainly
not as bad as Friday night in the hospital had been, and from there on things
improved daily. I now empathize with those of you who have multiple hospital
stays, and I really hope that I will not have to return to a hospital anytime
soon. My trach has healed, and my energy has returned.
I know as I get older that my health issues may become more of a problem, but
hopefully I will be wise enough to catch them at the beginning and not let them
progress to the hospital state! At Santa Clara they emphasized that we should
be in control of our bodies, and not let our bodies be in control of us. I
continue to think that God has a purpose and a plan for us, and that our job is
to focus on the positive aspects of our lives, educate as many people as
possible that wheelchairs are only the way that we walk, and try to improve
things for those who will follow.
Forgive my ramblings, but thanks for listening. From snowy Reno Joan
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