Re: kelly? long
- From: "Kelly" <kelly.e1@xxxxxxx>
- Date: Thu, 17 Nov 2005 03:43:59 GMT
I finally got to the mailbox today and your card was there. Thank you so
much - it meant so much.
It will work out - always seems to but does require a lot of work as always.
Didn't realize walking and telling your body what to do when walking was so
difficult. A real learning experience.
"Squirrely" <squirrely@xxxxxxxxxxxx> wrote in message
> Oh Kelly,
> I wish the report had been better. You are still in my thoughts and
> prayers. Still sending hugs and healing vibes your way. You take care and
> I sure hope things work out soon for you.
> Love and hugs to all
> Good thoughts coming your way too.
> Squirrely Jo
>> Hi Diane,
>> Frustrated and frustrated and frustrated. Oh and add some pain and
>> intolerance to meds and that about says it.
>> I got the report from the neurologist. He sees some funny signals at the
>> 6-7 level, some bright spots and low density signal changes in the
>> cervical cord. He sees some abnormality possibly indicating a mild
>> inflammatory myelitis - no surgical lesions. He figures it could be the
>> start of demyelinating disease or some side effect of the enbrel (which
>> is definitely what the rd says.) He feels it is too late to try
>> steroids, my rd says steroids if not an improvement in 10 days (of course
>> he left for the ACR convention at day 10 so obviously I will be waiting
>> another 7 days). My GP would just like to cover his head and hide and I
>> don't blame him.
>> I have an appointment with the urologist Wednesday as the main problem in
>> the catheter etc. I get constant spasms which I swear sometimes are more
>> like childbirth! I have a uti which the gp was hesitant to treat in case
>> I developed a second yeast infection within a week and blocked the
>> catheter again. The catheter only works properly if I lay down - doesn't
>> draw enough out if I am sitting or walking. Therefore about every 2
>> hours or so I go lie down to basically empty my bladder. Can you say
>> hell on my interstitial Cystitis - so I am back having uracyst again for
>> that. The catheter has fallen out once, lost all the water in the
>> balloon once, and I have a fair amount of tissue and blood that
>> frequently is discharged. To say the bladder is irritated is a good word.
>> Of course there have been funny times too - like the time I had a new leg
>> bag that was not closed properly and it leaked into my shoe and sock
>> (luckily not too much as I was sitting) as I was trying to sell quilts at
>> our quilt show. Or the time the dog lied on my bag this weekend and
>> disconnected the bag from the catheter during dinner with my son and his
>> girlfriend. My pants were wet and with the lack of sensation I couldn't
>> feel it right away. I think my words were "piss". Which described it.
>> My son hopped up from the table and mopped the floor very calmly and I
>> got changed and was back in time to eat dessert. Nothing is boring
>> around here. What I am asking is if I can catherize myself every few
>> hours instead of the bag. I know it is done and apparently the infection
>> rate is the same.
>> No new arthritis meds until at least the 30th when my next appointment
>> with my rd is. My physio took away the wheelchair unless someone is
>> pushing as it was wrecking my wrists and shoulders.
>> The good news is I am working very hard at the physio and now use a
>> walker and am slowly walking without it holding onto whatever is near.
>> It is hard, and hurts and is tiring but I am getting there. The
>> neuralgic response is still strong though so no ultrasounds or anything
>> from the physiotherapist. She is amazed at how well I am starting to come
>> back in strength though. Of course she also gave me a lecture on resting
>> and giving it a chance to heal. That is hard. I am working at keeping the
>> foot flat and learning how to tap my toes. Can you say music? It is
>> painful but I am getting there.
>> So good and bad but mainly frustrating. I got rid of the clomazapam as
>> it was making me stoned all the time but kept the lyrica and it seems to
>> help a bit. The demerol at night is the answer though. One clomazapam
>> gave me 24 hours of acting like I was totally stoned - my friends weren't
>> Anyhow - willl wait and see what my rd says from the conference. He was
>> talking to people there. I told Dr. Doc his name and where he was from
>> so who knows maybe they will meet.
>> Thanks for asking Diane - I am still here - just barely holding on
>> though. Lots of tears and frustration and this catheter and bowel problem
>> is exactly that - major!
>> "Diane" <dcham@xxxxxxx> wrote in message
>>> i've only been scanning lately, so may have missed an update on kelly
>>> and her partial paralysis. how is she doing?
- Re: kelly? long
- From: Squirrely
- Re: kelly? long
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