A Pity Party - want to come?long
- From: "Kelly" <kelly.e1@xxxxxxx>
- Date: Sun, 30 Oct 2005 19:27:19 GMT
Well I am having a pity party if you want to come. Cheese is welcome but
sorry due to the demerol no wine. If you have a funny joke bring it and if
you have kleenex come on too.
I have decided that too many things are happening around me and I just don't
seem to have control over a lot of them. I have a neurologist appointment
on Friday and a rd appointment on Wednesday but until then I struggle.
Yesterday the cathetor came out ( blue right across the bathroom floor when
I was trying to move the bowels - oops) and discovered that I really need
it. By the time home care nurse got here to replace it I was in agony and
full, full, full. Obviously the neurological problems caused by the enbrel
are still affecting the ability to urinate. Friends built me a ramp outside
so now I can get out if someone pushes me. Wouldn't be able to go on my
own - couldn't maneuver the wheelchair, car etc. But it is a huge step.
Hopefully the neuro guy will have some solutions and it won't be needed for
long. In the meantime the cathetor is not at all comfortable and the nurse
thinks I just can't feel the spasms that my urethra and bladder are doing -
that perhaps they are trying to expell this damn thing. That theory works
for me. She is coming back this afternoon.
I am cold all the time on my legs and still getting the electric prickly
feeling all the time. It damn well hurts - although I have cut my pain meds
in 1/3rds as I was not taking in what people were saying and can control the
pain not bad during the day. That is an improvement. I have been doing
excercises religiously and there is an improved range of motion and an
improved communication between my leg, foot and brain. Success although
very small.
My husband got back last night and that is also hard. This is so hard on
him as well and now as well as work he has my care to do. That is huge as
there is very little I can do to help right now. I have friends who have
pitched in for the last week but have to start doing some hiring etc. Also
we were undergoing marriage counselling before all this and making progress.
That is put on the backburner for now. I am sure our marriage will make it
but this understandably puts another strain on it. Can life just for once
go okay! The fall has been the pits after a very tough summer. Pat's
parents are 86 and 90 and we have just moved them over here from a fairly
isolated island home. We have been doing the moving, caregiving, doctor's
appointment etc. They are living on their own but lots of problems -
macular degeneration, large unruly dog, bit of demential for my father in
law, cancer spot waiting to be removed from my mother in law's cheek. Just
lots of little things.
Anyhow feeling overwhelmed today and of course it is raining. I don't often
feel low or stay low but can't get much lower today. Would love to cry and
cry and cry. Of course expecting yet another call from another nurse today
who is going to try yet another catheter and maybe tomorrow some
anti-spasming meds. What the hell - can't hurt.
Anyhow taking my miserable self back to bed. This feeling will be over
tomorrow I am sure but today just seems kind of bleak.
Kelly
.
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