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Medical Forum / Diseases and Disorders / Arthritis / March 2006

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otp: prayers needed

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Diane - 06 Mar 2006 23:34 GMT
i've hesitated to ask for prayers on this because it's going to be a
long, on-going battle rather than a one time thing, but my sister and
brother-in-law can really use the asa prayer machine. john and i just
got back from visiting them in NJ and things are not good. my
brother-in-law has lung cancer and COPD (he's 70 and a life-long
smoker) nd diabetes (not on insulin). he had chemo and now is getting
radiation and he looks like he's wasting away. he gets bouts of
confusion when his oxygen level is low. (i'm very afraid he may set the
house on fire, since he still occasionally lights up and he will fall
asleep at the drop of a hat.)

to make matters much worse, my sister has advanced MS, uses a scooter,
can't walk and is losing the use of her arms. she is still a very vital
person, active in little theater and just a dynamo within her
limitations. but my bro-in-law was her helpmate and now he needs help.
while we were there, he was so confused and feverish at one point, we
called an ambulance (on his doctor's recommendation), but he refused to
go and it was such an unhappy scene. i know some  of you have been
through this and know what i mean. my sister doesn't think they need a
visiting nurse yet, but i hope she will not wait too long.

i feel so helpless now that i live a plane ride away from them. i'd
appreciate your prayers to help them through this time. i still have
hope he can recover. i don't have much experience with oncology, so
don't have a sense of what is possible. do people really recover when
they are so completely drained by radiation and still have weeks to go
on it?

diane
Alix M. Hall - 07 Mar 2006 01:02 GMT
always praying--and will pray for your sister and BIL--

Signature

Love,
        Alix

Always remember, a cat looks down on man, a dog looks up to man,
but a pig will look  man right in the eye and see his equal".
- Winston Churchill

Kelly - 07 Mar 2006 01:30 GMT
Prayers definitely going out in full force Diane.  What a mess - and I agree
it is so hard from a distance.  Hope that she willl accept help sooner than
later.

Thinking of you,
Kelly

> i've hesitated to ask for prayers on this because it's going to be a
> long, on-going battle rather than a one time thing, but my sister and
[quoted text clipped - 25 lines]
>
> diane
vickie b. - 07 Mar 2006 03:25 GMT
Yes!  I'll pray.

Vickie B.
Gwen Love - 07 Mar 2006 03:42 GMT
Prayers on the way for both their medical conditions, and also that your
sister will ask for help very soon.  A visiting nurse would be good for
both.
Gwen

> i've hesitated to ask for prayers on this because it's going to be a
> long, on-going battle rather than a one time thing, but my sister and
[quoted text clipped - 25 lines]
>
> diane
Harvey R. Stone - 07 Mar 2006 12:45 GMT
> Prayers on the way for both their medical conditions, and also that your
> sister will ask for help very soon.  A visiting nurse would be good for
> both.
> Gwen

Well said and a prayer for strength for you to be able to deal with what
takes place.   We are there with you.
Harv
DianeW - 07 Mar 2006 14:13 GMT
Diane - Prayers on the way. My dad had lung cancer and COPD so I know
what they are going thru. Dad used to fight the use of oxygen which
left him a bit confused at times. Hard to make good decisions when you
are not getting enough O2. Many a time he refused to go in the
ambulence and I think it was from the lack of O2 that he was unable to
make the best decisions.

Please encourage your sister to get some help. I am a perfect example
of what can happen to your MS with trying to do too much and stress.
This is the worse MS flare I've ever had and your sister doesn't need
that for sure. Did you see the other post about help for seniors? Maybe
that would be good for them on a temp basis. I think it's under aid for
housework but someone listed the name of a Senior org that they can
check into. Also, their doctor can order a home evaluation where a
nurse comes to the house and evaluates their needs to see exactly what
they need and then they can take it from there. Maybe if your sister
sees it only as an evaluation, once the nurse comes and checks things
out she will feel different about it.

As far as the weekness goes, Is he on Procrit? Dad was given Procrit to
fight the fatigue while on radiation. He lived another 2.5 years after
the radition before the cancer returned. And yes, he did recover from
the fatigue from the radiation. But it is hard to know = there are diff
types of radiation and lung cancer. Also, is he showing signs of
respiratory distress where is is hard to breath and he's getting panicy
and heaving a lot? If so, please know that this can be treated with
ativan and a small dose of morphine which makes the RD less scarey for
the patient and also lowers the blood pressure. Dad didn't need the
morphine untill much later but the ativan was crucial in his comfort
level. Unfortunately, we didn't know about this until very late in his
illness but I was glad I knew about it when Mom was dying.  The doctors
didn't give it until I ask for it which is why I'm telling you about
it. There is no need for someone to suffer I always say.  Anyway, email
if you need to know more about this.....I've been there.

Prayers coming your way.......Cyberhugs.. Diane W
Alex - 07 Mar 2006 15:12 GMT
Sending Good Thoughts,
{{{{Diane, Sister, bil}}}}

GramPaHugs,
Alex,

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Navy1 - 07 Mar 2006 15:19 GMT
Prayers coming and hugs, ((((((((((((((Diane and family)))))))))))))).

When my dad died, for the last two weeks, he didn't know anyone and
wouldn't respond when my mom would press his hand.  He was so wasted
away, it was hard to see them try to get a blood sample.  We're
thankful that he did slip away as easily as he did, comparatively.
The night before he died, my sister and her grandson came.  Dad and
Andrew played like two toddlers, giggling and so.  It left a nice
memory.

I agree with DianeW.  Sometimes they will take information and advice
easier from a stranger than a family member.  I would try it - getting
some one in to make an evaluation.

Loujean

>i've hesitated to ask for prayers on this because it's going to be a
>long, on-going battle rather than a one time thing, but my sister and
[quoted text clipped - 25 lines]
>
>diane
d'huit - 07 Mar 2006 17:57 GMT
((((((((((((((((((diane, sister, bil, john and family))))))))))))))))))))
oh, hon, what a sad and difficult/delicate situation.  and how
heart-wrenching it must be for you.  all of you absolutely have mine.

your sister sounds amazingly courageous!  hon, there may, or may not, be
some kind of a husband and wife pact/agreement involved here, like there was
between butch and me, while he was alive and battling for his life.  (some
of these kinds of pacts/agreements can even be unspoken between spouses, but
still be understood because of knowing each other so well.)  she may be
honoring his wishes, their pact, without considering her own needs, putting
herself second

is there a friend or neighbor who can look in on them, for you, and keep you
apprised of their situation?

do they have (and would your sister be able to use) those emergency call
buttons/service that can be worn around their necks? (the kind advertized on
tv by dr. koop, the ex-national medical officer---i'm sorry, brain fog is
stealing nouns from me and i have to use wordy description, instead, to say
what i mean.).  those devices might help them both and give you some peace
of mind.

kate

i've hesitated to ask for prayers on this because it's going to be a
long, on-going battle rather than a one time thing, but my sister and
brother-in-law can really use the asa prayer machine. john and i just
got back from visiting them in NJ and things are not good. my
brother-in-law has lung cancer and COPD (he's 70 and a life-long
smoker) nd diabetes (not on insulin). he had chemo and now is getting
radiation and he looks like he's wasting away. he gets bouts of
confusion when his oxygen level is low. (i'm very afraid he may set the
house on fire, since he still occasionally lights up and he will fall
asleep at the drop of a hat.)

to make matters much worse, my sister has advanced MS, uses a scooter,
can't walk and is losing the use of her arms. she is still a very vital
person, active in little theater and just a dynamo within her
limitations. but my bro-in-law was her helpmate and now he needs help.
while we were there, he was so confused and feverish at one point, we
called an ambulance (on his doctor's recommendation), but he refused to
go and it was such an unhappy scene. i know some  of you have been
through this and know what i mean. my sister doesn't think they need a
visiting nurse yet, but i hope she will not wait too long.

i feel so helpless now that i live a plane ride away from them. i'd
appreciate your prayers to help them through this time. i still have
hope he can recover. i don't have much experience with oncology, so
don't have a sense of what is possible. do people really recover when
they are so completely drained by radiation and still have weeks to go
on it?

diane
Diane - 07 Mar 2006 18:54 GMT
thanks for all the advice and prayers. diane w, how are you doing?
kate, my sister does wear a pendant that's linked to the home security
system and thus to the police. she's had to use it a couple of times
when she's fallen with her hubby out of the house.

i'm thinking about dana reeve today. is that unfair or what??

diane
d'huit - 07 Mar 2006 19:11 GMT
thanks for all the advice and prayers. diane w, how are you doing?
kate, my sister does wear a pendant that's linked to the home security
system and thus to the police. she's had to use it a couple of times
when she's fallen with her hubby out of the house.

i'm thinking about dana reeve today. is that unfair or what??

diane

me, too.  it certainly is unfair.  i keep thinking about their teenaged son,
poor kid.  how devastating for him.  her kind of love and courage is a loss
for all of us.

kate
DianeW - 08 Mar 2006 15:23 GMT
Diane - I'm not getting stronger and I'm growing impatient. Did get my
MRI results yesterday and it confirmed new MS activity. I'm not liking
this can't walk without a walker thing. I'm so off balance and so weak
it is really limiting what I can do. I have to have someone with me
when I shower. And I can't stay on my feet very long.

On a positive note, I bought an old out of print hardback book  - Fire
and Rain - and have been reading that. My left eye is a bit blurry so
it is slow going but I'm hooked on yet another wonderful tale!  I don't
know how you do it!  I have one shelf filling up nicely with your
books. I only buy hardback copies so some of the older ones have to be
used -- sorry !  One of them had your autograph in them!  LOL
Cyberhugs, DianeW
Diane - 08 Mar 2006 20:08 GMT
oh, diane w, i'm sorry about the increase in MS activity. that disease
is so miserable. if tysabri comes back on the market, can you take it?

you're forgiven for buying used. sometimes you have to with the out of
print books. i'm just glad you get to enjoy them.

diane c
DianeW - 08 Mar 2006 22:27 GMT
My neuro isn't too keen on tysabri. He said the post-marketing studies
are so short. No one really knows what will happen when the drug is
withdrawn and he has some concerns about it.  Something about how it
prevents the passage of something but what happens to all that
accumulates when you stop the medicine. I know that's vague but that's
all I can remember.  DianeW
Kelly - 09 Mar 2006 00:58 GMT
Diane,
You were asking about a walker - check out this
http://www.ustep.com/walker.htm .  Have no idea the price but looks
interesting.  Not sure about the brake system though.

Kelly

> My neuro isn't too keen on tysabri. He said the post-marketing studies
> are so short. No one really knows what will happen when the drug is
> withdrawn and he has some concerns about it.  Something about how it
> prevents the passage of something but what happens to all that
> accumulates when you stop the medicine. I know that's vague but that's
> all I can remember.  DianeW
DianeW - 09 Mar 2006 04:13 GMT
Thanks but my husband made me buy one last week. We couldn't get anyone
to fix the brakes and it was too dangerous without them. I'm getting
used to it. It's a bit bigger than my old one but I like it.  DianeW
DianeW - 09 Mar 2006 04:16 GMT
That is a very unusual walker!  My mother would have benefited from
that one. It has features that at this time I don't need. My Mom had
trouble walking "behind" a walker. Her basic medicare walker where she
walked "inside" it made it easier for her. That is how that one is
made. Gonna look around the site a bit more......DianeW
Kelly - 09 Mar 2006 00:49 GMT
Diane,
I have Her Mother's Shadow in paperback - can I mail it to you if you don't
have it?  I am in the states next week so the postage will be cheap!

Kelly

> Diane - I'm not getting stronger and I'm growing impatient. Did get my
> MRI results yesterday and it confirmed new MS activity. I'm not liking
[quoted text clipped - 9 lines]
> used -- sorry !  One of them had your autograph in them!  LOL
> Cyberhugs, DianeW
DianeW - 09 Mar 2006 04:11 GMT
Thanks for the offer Kelly but I already have it....and read it!  I'm
hooked on Diane C's books!  Where are you going to be next week?
Anywhere near me?  DianeW
Kelly - 10 Mar 2006 04:32 GMT
I wish I was - could use just a tiny bit of heat (it snowed here today and
trust me Victoria rarely snows.)  no I am going to Seattle to spend some
quality time with my brother, sil and 3 3/4 year old going onto 20 year old
nephew who I adore.  My son and dil are driving me down and spending a
couple of days with me and then i am coming back on Saturday by the Clipper
which is a large catamaran.  We are doing a renovation (final one) to sell
our house and next week they are tearing out 880 square feet of tile and
retiling.  Needless to say i am getting out of dodge.  The new cupboards
come in the week after, countertops two weeks after, painter sometime in
there and then the hardwood floors will be sanded and redone in the living
room.  Then we sell.  My out of pocket expenses with this ms like thing are
about $1000 a month after loss of part time job pay ($300) and meds that my
extended care and the provincial government public fund don't cover.  That
doesn't include the money my husband is losing (he is self employed) by
driving me to doctor's appointments, shopping and doing all the things I
used to do.  Amazing how life changes.  Anyhow we will downsize and probably
would have anyhow.  The house is 3000 square feet and we have a half and
acre one house up from the ocean.  Needless to say it is worth a fair amount
so downsizing will help.  The boys have left home now for good so we can do
it now.

I am actually looking forward to it.  Never thought I would say that.  Of
course the last few weeks have been a lot of work packing up boxes and
clearing out the cupboards.  The cupboards, dishwasher, sink get removed
tomorrow.  Can you say "dine out"  Yes!!!!

Wish I was near to you Diane. But must tell you between the Lyrica and the
Valium I am getting a bit better quality of life.  The pain before was 9/10
24/7.  Now it is 6-7/10 and maybe only 22/7.  Have another neurologist
appointment on april 18, rd appointment on march 21.  They are also
scheduling an eeg.  Apparently that is one test they missed - not sure yet
what that will tell.  I am also hoping they get the one part of me that they
didn't mri last time and also look at contrast. Apparently that sometimes
catches what they miss.

Sorry to hear you aren't out of this flare yet.  I sympathize.  How long is
a flare suppose to last anyhow?  I am now 5 months with no relief whatsoever
and the spasming is still pretty much steady.  The foot spasticity has never
let up.  Glad I have a new appointment scheduled.

Anyhow let me know if there are any of Diane's books you haven't read.
Might have them.  I especially like her earlier books but might now have
many of those left - I tend to lend them out.  I am also hooked on Catherine
Coulter's FBI series right now.  Have one I just can't find - ticking me
off.  Have searched every second hand store I go into - will find it yet.

Take care,
Kelly
> Thanks for the offer Kelly but I already have it....and read it!  I'm
> hooked on Diane C's books!  Where are you going to be next week?
> Anywhere near me?  DianeW
RoseB - 10 Mar 2006 04:44 GMT
 I am also hooked on Catherine
>Coulter's FBI series right now.  Have one I just can't find - ticking me
>off.  Have searched every second hand store I go into - will find it yet.
>
>Take care,
>Kelly
What is it called Kelly?
I can look here in the windy, but not yet snowy, interior.
    Rose   @}>->--
    Being educated means that rather than fearing the unknown, one seeks to understand it. RB

    Please remove "Ima" to reply.
Kelly - 10 Mar 2006 15:31 GMT
have to find the name Rose and the series is in a box in the living room -
buried somewhere!  Will let you know.

kelly

>  I am also hooked on Catherine
>>Coulter's FBI series right now.  Have one I just can't find - ticking me
[quoted text clipped - 9 lines]
>
>     Please remove "Ima" to reply.
DianeW - 10 Mar 2006 15:55 GMT
Kelly - The nurse practioner at my neuro's office said I should be
better at about the 3 month point but my first attack was more like 6
months. The second 3 months. This one is much more severe than the
others or at least to me it is. How do your feet feel? Mine feel like
they do when you are outside in really cold weather for a long time and
when you come in the house and the rest of you warms up but your feet
are still numb in your boots. Do you know that feeling? They have
improved but it varies from day to day. Left worse than right.

I'm good on Diane's books right now cause I've been buying the hard
copy out of print books on Amazon.com. You might try that for the
author you said you couldn't find. They have both hard and soft copies
of used books. I've found the sellers to be very truthful in what they
descrbe they have. Of course, I check their ratings. It works out ok. I
am trying to buy her newer books when they come out so I can keep my
book shelf looking consistant. Can you say obsessive?  LOL I'm really
liking this earlier book of hers that I'm reading. The style seems a
bit different but I really like it a lot.

Thanks for the update on the Lyrica and Valium. I used to take Ativan,
which is similar to Valium, but stopped it last year due to sleepiness.
Maybe its time to try it again. I am not sure if I can take Lyrica or
not. I take zanaflex for the spascity at bedtime. Sounds like your
hubby spends his time off just like mine....picking up the slack and
driving me to doctors appts. I really hate not being independent. I
haven't been this bad before and some days it's really getting to me.
My son is coming over this afternoon to help me make dinner. We got him
to commit to two nights a week to come a fix a dinner for me and Dad.
DH doesn't get home until 8 at night and he's been bringing carryout
with him. Not only is it fattening it's expensive. So he's off two days
and Nick comes two days so that only leaves 3 days. I'm going to try
and get a one day commitment from two of my other friends and see what
happens. One of Nick's friends used to clean for me and now she's in
college right down the street. I think she might do a day. It took Nick
a bit to assimilate what was going on with me but now I think he gets
it. He fixed sloopy joes last night when he came to borrow the van to
transport his band gear. Of course he ate half of it too!  LOL  But I
don't mind that! Gives him a free meal and a little leftover $$$ for
spring break!  Hope you enjoy your trip! I can't imagine going anywhere
yet. We have a wedding in PA in July I am hoping to
make.......Cyberhugs...DianeW
Kelly - 10 Mar 2006 17:05 GMT
My feet feel the same way - but if I wear warm socks the heat kills the rest
of me and the spasms last forever.  Heating bags are out.  So I just elevate
my feet and live with it.  I agree Diane's early books are quite different -
my sister likes them best.  I like them equally.  I read a lot lately mainly
because I have to lie down so many times in a day.  Often skim because the
words dance on the page - will have lots of books to re read one day.

6 months would be nice.  I am at 5 months right now.  The lyrica is fairly
new on the market and does take the edge off the pain for me.  I am at the
high end of the doseage.  If I am even an hour late for the dose my pain
level is a 10 1/2 out of 10 so that says something.  If not it brings it
down to a 8 or 9.  Unfortunately demerol does not touch the neurological
pain at all although it does help the RA pain when things get tough at
night.  We think the zanaflex was giving me epeleptic type spells - best we
can describe. We were at the highest dose and again it really wasn't helping
that much so it was dropped. Because the spasticity in my foot is so bad it
is throwing off my balance and my hip is suffering badly (as well as knees
and ankles but I don't care about those right now). Because I can't wear
shoes also my plantar fasciatis is screaming on my good foot.  No answers by
anyone until I can tolerate something permanent on the left foot and the
spasticity calms down even a bit.

The valium is helping and is not making me drowsy one bit.  Of course the
doctor who replaced my doctor on holidays yesterday was not going to renew
it because it is so addictive - I think he was afraid of what was going to
happen to his organs if he didn't so he wrote me a 8 day prescription to get
me through to Seattle.

Our family situation is similiar.  I occasionally make dinner but nothing
comes out at the right time and it is quite often burnt or I have added
something I shouldn't.  Consequently Pat and my son are getting good at
sneaking in before I do.

The trip is necessary.  I would have to sleep upstairs during the reno
(can't do that) and Ken is going to drive and I have the backseat.  Can cope
at my brothers the same as here but better - I will have Kyle.  To quote
Kyle - I love you Auntie Kelly and miss you.  Since your leg is still owie
we can read and sing and cuddle.  When I get up from the couch he hands me
my cane or runs to get my walker.  Last time he put on my shoes so I didn't
have to bend over and could make it to see his preschool.  I think I am show
and tell this time.  We do a little shopping (mainly a lot of stopping to
drink a coffee or eat so I don't overdo it.)  All this with a 3 1/2 year
old.  Better than meds and if it hurts getting there - well it does my
spirit good and right now that is worth everything.

Despite everything I am not depressed - only in unbearable pain.  Would take
antidepressants but they really don't agree with me and the valium does help
the spasms as well as the depression.  I hate being out of control as you
can imagine.  this is a mind control as well as a body control.  Quite
different than my ra.  I have had one autoimmune disease for 18 years
(interstititial cystitis) and RA for 11 glorious years now and have immense
coping devices and pain control.  Nothing works on this.

Hope this ends soons for you Diane.  I have an eeg supposedly scheduled in
the next month and a repeat appointment with the neurologist on April 18th.
Hope for some more answers but suspect they won't be there. i just want this
over sometimes in the next year - even a little break would be nice.
Luckily my kids have borrowed my car - there have been times I have been
tempted to see if I could just drive again just to know I could - what a
disaster that would be.

Hang in there and I will too.  This too has to end eventually - right??

Kelly

> Kelly - The nurse practioner at my neuro's office said I should be
> better at about the 3 month point but my first attack was more like 6
[quoted text clipped - 37 lines]
> yet. We have a wedding in PA in July I am hoping to
> make.......Cyberhugs...DianeW
DianeW - 10 Mar 2006 23:03 GMT
Enjoy the trip. I know I enjoyed the little ones that were here for
Mom's funeral.  We have to have the bathrooms and kitchen redone this
year if I'm to ever us them in a meaningful way. That's going to be a
big trouble I'm sure. One at a time, not all at once.  Nick and I made
lasange today. That was fun but exhausting. It was good to see him of
course and I think he's going to come back and eat with DH and me. He's
a messy cook!  But at least he doesn't drop things. I had him put it in
the oven before he left so  I hope that doesn't mess things up when I
preheat the oven with it in there. Too heavy for me to put it in there.
Now I just have to remember to cook it!  LOL

My neuro's office called and told me that they feel that this is a
structural problem and I should go see an ortho. I do have a few bad
vert so I called and made an appt with a neuro-surgeon for March 28th.
I'm going to try and get an appt for a new MRI of the spine before then
so he has an up to date one. Of course if I hadn't called and bitched
about why they hadn't called me with my results I wouldn't have known
what they thought. I was so mad. So the brain MRI didn't show anything
new......what were they thinking in not calling me???  I've been doing
some major bitching today. Apparently they don't call you if the test
shows nothing.....uuuhhhh....then why can't I walk and what am I
supposed to do about it? A little guidence here was in order I thought.
I spoke with the office manage three time to get my answers but I'm not
so sure I like the way they are running things these days.

TTFN - Cyberhugs. DianeW
Kelly - 11 Mar 2006 01:25 GMT
i agree Diane - seems to me they need to do some more testing.  Did an
interesting tests with my husband yesterday that apparently they test for in
MS.  Stand in bare feet or stocking feet together with your arms in front of
you.  You should be steady (both of us were) with your eyes open.  Close
your eyes - Pat stood perfectly still and had no problem.  I fell down.
Oops!  Failed that one.  The next test they are giving me is an eeg sometime
in the next 2 weeks.

What do they find with a lumber puncture with you?  Did they do contrast and
non MRI and MRI in brain stem, thoracic and lumbar spine?

Darn - didn't know any of this before.  Also need to ask about an eyesight
test they didn't do which would explain the eye problems.  The one they did
was a field vision test which duh I could have told him I would pass.  That
involves concentrating on one dot.  I have trouble with movement from one
thing to another or where the words move - like on a computer.

Major Bitching is deserved!!!!!!

kelly
> Enjoy the trip. I know I enjoyed the little ones that were here for
> Mom's funeral.  We have to have the bathrooms and kitchen redone this
[quoted text clipped - 22 lines]
>
> TTFN - Cyberhugs. DianeW
Diane - 11 Mar 2006 03:18 GMT
okay, so i want to know how many of us did this "standing barefoot and
closing our eyes test" right after we read kelly's post? lol. i passed.
sorry you didn't, kelly.

diane c
Gwen Love - 11 Mar 2006 23:09 GMT
I didn't fall but I sure was wobbling!
Gwen

> okay, so i want to know how many of us did this "standing barefoot and
> closing our eyes test" right after we read kelly's post? lol. i passed.
> sorry you didn't, kelly.
>
> diane c
Nann Bell - 12 Mar 2006 00:34 GMT
> I didn't fall but I sure was wobbling!
> Gwen
[quoted text clipped - 4 lines]
>>
>> diane c

heh, I didn't try it right away, but I sure thought through it and decided I
COULD do it!  Then again, with my talent(?) for getting distracted and
falling or walking into things, I make a point of doing balance exercises in
with everything else.  Hard to believe how well I can balance and even could
dance at one point when you see how much of a klutz I can be when not paying
attention!  LOL

I've read that hypermobiles can have proprioceptive difficulties (walking
into door frames, etc.) and I suspect that includes me - but the years of
dancing lessons growing up and years of marching band trained a bit of it out
of me.

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Squirrely - 12 Mar 2006 01:07 GMT
Hey Nann, that is great info about hypermobiles and the doorframes. I was
wondering why I kept kissing the door frames around here and the
entertainment center. My entertainment center sits right against the wall
from the kitchen. You make a turn to go down hallway and there it is. I am
always bouncing off of it.

They sure can't call me grace can they. :-)

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Hugs, prayers, good thoughts,
Warm fuzzies, TLC, and Love
Squirrely Jo

>
> heh, I didn't try it right away, but I sure thought through it and decided
[quoted text clipped - 13 lines]
> out
> of me.
d'huit - 12 Mar 2006 04:15 GMT
LOL!  i  wobbled with my eyes opened or closed.LOL  dang!

kate

I didn't fall but I sure was wobbling!
Gwen

> okay, so i want to know how many of us did this "standing barefoot and
> closing our eyes test" right after we read kelly's post? lol. i passed.
> sorry you didn't, kelly.
>
> diane c
Kelly - 12 Mar 2006 01:39 GMT
Doesn't mean you have MS just one more test.  Of course the feet have to be
right together too - not apart.

Was tempted to try it again but don't dare without Pat right there.  Was
interesting.!

Hope you are doing okay Diane.  Too many bad things happening in a short
period of time.  How is John doing?  Did you convince him to try the
remicade?

Kelly

> okay, so i want to know how many of us did this "standing barefoot and
> closing our eyes test" right after we read kelly's post? lol. i passed.
> sorry you didn't, kelly.
>
> diane c
Alix M. Hall - 12 Mar 2006 02:39 GMT
Okay--I admit--I tried it--I lean to the left and if I didn't open my eyes,
I would have fallen to the left, I think.....wonder what THAT means!!

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        Alix

Always remember, a cat looks down on man, a dog looks up to man,
but a pig will look  man right in the eye and see his equal".
- Winston Churchill

Kelly - 12 Mar 2006 05:34 GMT
probably absolutely nothing Alix.  is interesting though that with my eyes
open I have no problem.

Kelly

> Okay--I admit--I tried it--I lean to the left and if I didn't open my
> eyes, I would have fallen to the left, I think.....wonder what THAT
> means!!
DianeW - 12 Mar 2006 04:52 GMT
Gosh I missed this one!  Haven't tried the standing barefoot thing but
failed the finger to the nose with my eyes closed test in the doctors
office and the toes position in space with my eyes closed.  When they
do a lp they look for something called oglioclonial bands. I didn't
have them in mine but that's not always conclusive. you can still have
MS if you don't have them and do have it if you do have them. Also look
for the same kind of things they check your blood for with lupus.
Looked for lyme titers in mine as well. Just make sure you drink a lot
of caffine before and after the test -- the caffine helps you rebuld
the lost fluid during the test and helps avoid the dreaded headache so
many talk about with the test. And this is on advice of Mayo Clinic.
Worked for me. My MRI of the brain was done with contrast and showed
nothing new but didn't include the brain stem neck or spine. Hopeing to
have them repeated this week with contrast as when they were done last
I wasn't this bad. Have an appt with neuro-surgeon on the 28th and the
scheduler recommended repeating the MRI's before then as the dr would
just re-order them and it would be a longer delay.  DianeW
Squirrely - 11 Mar 2006 21:26 GMT
Kelly,

I hope you get some wonderful time with your family. I hope it does not wear
you out or do you in.

I hope the renovation goes well for you also. I hope your house will sell
soon also.

I feel for you with the medical bills and such. I am praying for something
to work out for you in all of this.

I hope the eeg goes well and gives them the info they need to help you out.

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Hugs, prayers, good thoughts,
Warm fuzzies, TLC, and Love
Squirrely Jo

>I wish I was - could use just a tiny bit of heat (it snowed here today and
>trust me Victoria rarely snows.)  no I am going to Seattle to spend some
[quoted text clipped - 45 lines]
> Take care,
> Kelly
Squirrely - 11 Mar 2006 21:28 GMT
Diane,

I have you in my prayers and thoughts. I sure hope you start getting
stronger soon. I can only imagine what you are going thru. I talk alot with
Denise and she has MS and I see how hard it is for her.

I can understand you growing impatient. You have had so much to deal with
the last few years and it always seems to be one thing after another. It
would be nice if you could have a rest from it for awhile.

I am hoping for a speedy recovery from the MS flare for you.

Signature

Hugs, prayers, good thoughts,
Warm fuzzies, TLC, and Love
Squirrely Jo

> Diane - I'm not getting stronger and I'm growing impatient. Did get my
> MRI results yesterday and it confirmed new MS activity. I'm not liking
[quoted text clipped - 9 lines]
> used -- sorry !  One of them had your autograph in them!  LOL
> Cyberhugs, DianeW
Squirrely - 07 Mar 2006 22:17 GMT
Diane never hesitate to ask for prayers even if it is an on going battle. I
know I pray for people all the time that have issues that are not being
quickly solved.

So I will be more than glad to keep your sister and brother in law in my
prayers. I know it is going to be touch and go for a long time. So will put
them on my prayer list to remember to be praying alot for them.

Also have you and John oon there too. It is stressful for the rest of the
family and those involved in situations like this.

You take care and remember never hesitate to ask for prayer. Otherwise we
would not know to do so. ;-)

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Hugs, prayers, good thoughts,
Warm fuzzies, TLC, and Love
Squirrely Jo

> i've hesitated to ask for prayers on this because it's going to be a
> long, on-going battle rather than a one time thing, but my sister and
[quoted text clipped - 25 lines]
>
> diane
Cindy - 08 Mar 2006 15:41 GMT
My thoughts and prayers are with you Diane. I know you are not going to be
able to rest at all knowing that your sister and her husband are alone...I
wish I had some better words or advice...
Hugs Cindy
> i've hesitated to ask for prayers on this because it's going to be a
> long, on-going battle rather than a one time thing, but my sister and
[quoted text clipped - 25 lines]
>
> diane
 
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