pain, pain, pain

It feels like this year will never end. First I figured it would end at
December - nope no cure, no relief, no med. Then orencia and I figured I
would be feeling better by my birthday - nope orencia failed, headaches and
then just before my birthday the shingles. Well got the anti-viral in me
quickly so obviously it must be my time at Easter - you know the good
catholic thing. Well not going to happen. The shingles are still so
painful - feels like someone is ripping my guts out without anaesthetic,
they still haven't approved the rituxan trial (I pay for med, they pay for
infusion and the close monitoring), I can't get it anyhow until the shingles
are healed and now to top it off a sinus infection or a cold (I vote for a
sinus infection - or a really bad stuffy nose that drips all the time.)

So the problem - what to do about the pain from the shingles. When you read
the internet basically it says "suck it up Kelly - you are already on all
the neuropathic pain meds!" This too shall pass. In the meantime life is
pretty damn horrible and the demerol is not doing it this time. I go back
to the doctor tomorrow. Am almost hoping he decides I have appendicitis or
something exciting that would tell me this isn't shingles - isn't going to
happen.

I understand there might be a shingles vaccine in the states. I would
recommend anyone who has had chicken pox and has an autoimmune disease ask
their doctor about it. If it would stop this I would recommend the person
who designed it get two nobel prizes. Because (and yes I know you never
start a sentence with because - get over it) this is much worse than my RA
has ever been (of course the RA is bad right now too. Really bad).

Anyhow there is my pity party. Would have some wine but it doesn't go with
demerol. Might just have to have another cold bath and tuck into bed with a
cold ice pack on the pain - only thing that works. Damn neurological stuff
anyhow. who invented this medical crap anyhow.

Soooooo just wanted everyone to know I am almost finished reading what
happened since Disneyland and yes I am alive but missing that extra
prednisone. Sounds like that was suppressing some of the pain - will bounce
that idea off the doctor tomorrow. Going to ask for some lidocaine patches
and see if he will go for that. Suppose to be going to Seattle for 2 nights
this weekend with my husband, 2 sons, and their respective wife and
girlfriend to see my 4 1/2 year old nephew. We are all looking forward to
this. Will go but don't want to be a wet blanket.

Off to bed and doctor's in the morning. Any homemade solutions greatfully
accepted. This is way down deep pain - not just the itching that was there
in the beginning. The touching lightly pain is still there too but that I
could possibly deal with.

Take care everyone. Prayers for everyone needing them being said.

Kelly

Kelly...Awwww sweetie...I just don't have any answers...Just prayers...I
know that shingles are probably the most painful thing you could have...I
know my Grandmother never complained with her arthritis at all even though
her hands were all deformed looking and her feet, but the Shingles...She
cried and cried...
I am so so sorry...
Go ahead and have a HUGE pity party...we will all be there to support
you...How many Margaritas do you think it will take
Let's don't do it in the sandbox though, cause I think that would be too
painful for you....Where ever you could dream to do it...Count me in...I
will be there...
And Pour it on...the more Whining the better...You deserve it...
HUGS and PRAYERS
Cindy
"Kelly" <kelly.e1@shaw.ca> wrote in message
news:_pjQh.18843$6m4.7359@pd7urf1no...
> It feels like this year will never end. First I figured it would end at
> December - nope no cure, no relief, no med. Then orencia and I figured I
> would be feeling better by my birthday - nope orencia failed, headaches
> and then just before my birthday the shingles. Well got the anti-viral in
> me quickly so obviously it must be my time at Easter - you know the good
> catholic thing. Well not going to happen. The shingles are still so
> painful - feels like someone is ripping my guts out without anaesthetic,
> they still haven't approved the rituxan trial (I pay for med, they pay for
> infusion and the close monitoring), I can't get it anyhow until the
> shingles are healed and now to top it off a sinus infection or a cold (I
> vote for a sinus infection - or a really bad stuffy nose that drips all
> the time.)
>
> So the problem - what to do about the pain from the shingles. When you
> read the internet basically it says "suck it up Kelly - you are already on
> all the neuropathic pain meds!" This too shall pass. In the meantime
> life is pretty damn horrible and the demerol is not doing it this time. I
> go back to the doctor tomorrow. Am almost hoping he decides I have
> appendicitis or something exciting that would tell me this isn't
> shingles - isn't going to happen.
>
> I understand there might be a shingles vaccine in the states. I would
> recommend anyone who has had chicken pox and has an autoimmune disease ask
> their doctor about it. If it would stop this I would recommend the person
> who designed it get two nobel prizes. Because (and yes I know you never
> start a sentence with because - get over it) this is much worse than my RA
> has ever been (of course the RA is bad right now too. Really bad).
>
> Anyhow there is my pity party. Would have some wine but it doesn't go
> with demerol. Might just have to have another cold bath and tuck into bed
> with a cold ice pack on the pain - only thing that works. Damn
> neurological stuff anyhow. who invented this medical crap anyhow.
>
> Soooooo just wanted everyone to know I am almost finished reading what
> happened since Disneyland and yes I am alive but missing that extra
> prednisone. Sounds like that was suppressing some of the pain - will
> bounce that idea off the doctor tomorrow. Going to ask for some lidocaine
> patches and see if he will go for that. Suppose to be going to Seattle
> for 2 nights this weekend with my husband, 2 sons, and their respective
> wife and girlfriend to see my 4 1/2 year old nephew. We are all looking
> forward to this. Will go but don't want to be a wet blanket.
>
> Off to bed and doctor's in the morning. Any homemade solutions greatfully
> accepted. This is way down deep pain - not just the itching that was
> there in the beginning. The touching lightly pain is still there too but
> that I could possibly deal with.
>
> Take care everyone. Prayers for everyone needing them being said.
>
> Kelly
>
>

Hugs and prayers, Kelly. You are in my prayers every day.

m



Kelly wrote:
> It feels like this year will never end. First I figured it would end at
> December - nope no cure, no relief, no med. Then orencia and I figured I
> would be feeling better by my birthday - nope orencia failed, headaches and
> then just before my birthday the shingles. Well got the anti-viral in me
> quickly so obviously it must be my time at Easter - you know the good
> catholic thing. Well not going to happen. The shingles are still so
> painful - feels like someone is ripping my guts out without anaesthetic,
> they still haven't approved the rituxan trial (I pay for med, they pay for
> infusion and the close monitoring), I can't get it anyhow until the shingles
> are healed and now to top it off a sinus infection or a cold (I vote for a
> sinus infection - or a really bad stuffy nose that drips all the time.)
>
> So the problem - what to do about the pain from the shingles. When you read
> the internet basically it says "suck it up Kelly - you are already on all
> the neuropathic pain meds!" This too shall pass. In the meantime life is
> pretty damn horrible and the demerol is not doing it this time. I go back
> to the doctor tomorrow. Am almost hoping he decides I have appendicitis or
> something exciting that would tell me this isn't shingles - isn't going to
> happen.
>
> I understand there might be a shingles vaccine in the states. I would
> recommend anyone who has had chicken pox and has an autoimmune disease ask
> their doctor about it. If it would stop this I would recommend the person
> who designed it get two nobel prizes. Because (and yes I know you never
> start a sentence with because - get over it) this is much worse than my RA
> has ever been (of course the RA is bad right now too. Really bad).
>
> Anyhow there is my pity party. Would have some wine but it doesn't go with
> demerol. Might just have to have another cold bath and tuck into bed with a
> cold ice pack on the pain - only thing that works. Damn neurological stuff
> anyhow. who invented this medical crap anyhow.
>
> Soooooo just wanted everyone to know I am almost finished reading what
> happened since Disneyland and yes I am alive but missing that extra
> prednisone. Sounds like that was suppressing some of the pain - will bounce
> that idea off the doctor tomorrow. Going to ask for some lidocaine patches
> and see if he will go for that. Suppose to be going to Seattle for 2 nights
> this weekend with my husband, 2 sons, and their respective wife and
> girlfriend to see my 4 1/2 year old nephew. We are all looking forward to
> this. Will go but don't want to be a wet blanket.
>
> Off to bed and doctor's in the morning. Any homemade solutions greatfully
> accepted. This is way down deep pain - not just the itching that was there
> in the beginning. The touching lightly pain is still there too but that I
> could possibly deal with.
>
> Take care everyone. Prayers for everyone needing them being said.
>
> Kelly

(((Kelly)))

You have had the year from hell, to be sure. I'm so sorry the shingles are
not responding to treatment. That sucks. I haven't heard anything about a
shingles vaccine, but will do some research, for sure.

Don't leave the doctor without _something_ for the pain. Make him think hard
about it.

Very soft hugs,
The other Kelly

"Kelly" <kelly.e1@shaw.ca> wrote in message
news:_pjQh.18843$6m4.7359@pd7urf1no...
> It feels like this year will never end. First I figured it would end at
> December - nope no cure, no relief, no med. Then orencia and I figured I
> would be feeling better by my birthday - nope orencia failed, headaches
> and then just before my birthday the shingles. Well got the anti-viral in
> me quickly so obviously it must be my time at Easter - you know the good
> catholic thing. Well not going to happen. The shingles are still so
> painful - feels like someone is ripping my guts out without anaesthetic,
> they still haven't approved the rituxan trial (I pay for med, they pay for
> infusion and the close monitoring), I can't get it anyhow until the
> shingles are healed and now to top it off a sinus infection or a cold (I
> vote for a sinus infection - or a really bad stuffy nose that drips all
> the time.)
>
> So the problem - what to do about the pain from the shingles. When you
> read the internet basically it says "suck it up Kelly - you are already on
> all the neuropathic pain meds!" This too shall pass. In the meantime
> life is pretty damn horrible and the demerol is not doing it this time. I
> go back to the doctor tomorrow. Am almost hoping he decides I have
> appendicitis or something exciting that would tell me this isn't
> shingles - isn't going to happen.
>
> I understand there might be a shingles vaccine in the states. I would
> recommend anyone who has had chicken pox and has an autoimmune disease ask
> their doctor about it. If it would stop this I would recommend the person
> who designed it get two nobel prizes. Because (and yes I know you never
> start a sentence with because - get over it) this is much worse than my RA
> has ever been (of course the RA is bad right now too. Really bad).
>
> Anyhow there is my pity party. Would have some wine but it doesn't go
> with demerol. Might just have to have another cold bath and tuck into bed
> with a cold ice pack on the pain - only thing that works. Damn
> neurological stuff anyhow. who invented this medical crap anyhow.
>
> Soooooo just wanted everyone to know I am almost finished reading what
> happened since Disneyland and yes I am alive but missing that extra
> prednisone. Sounds like that was suppressing some of the pain - will
> bounce that idea off the doctor tomorrow. Going to ask for some lidocaine
> patches and see if he will go for that. Suppose to be going to Seattle
> for 2 nights this weekend with my husband, 2 sons, and their respective
> wife and girlfriend to see my 4 1/2 year old nephew. We are all looking
> forward to this. Will go but don't want to be a wet blanket.
>
> Off to bed and doctor's in the morning. Any homemade solutions greatfully
> accepted. This is way down deep pain - not just the itching that was
> there in the beginning. The touching lightly pain is still there too but
> that I could possibly deal with.
>
> Take care everyone. Prayers for everyone needing them being said.
>
> Kelly
>
>

Responding to my own post to share this link, which says the shingles
vaccine is available for folks over 60 only. I hope I can hold out another
18 years.

http://www.webmd.com/news/20060526/f...ingles-vaccine

Kelly C.


"Kelly C." <kellcobb@hotmail.comspamtrap> wrote in message
news_ednRlSadWTQ4zbnZ2dnUVZ_qiqnZ2d@comcast.com. ..
> (((Kelly)))
>
> You have had the year from hell, to be sure. I'm so sorry the shingles are
> not responding to treatment. That sucks. I haven't heard anything about a
> shingles vaccine, but will do some research, for sure.
>
> Don't leave the doctor without _something_ for the pain. Make him think
> hard about it.
>
> Very soft hugs,
> The other Kelly
>

((((((((((((((((Kelly))))))))))))))) I wish I had more to offer than hugs,
but you're already on all the stuff I know about for shingles pain. I know
it's horrendous though. Someone I know finally had some spinal injections to
block some of her pain but I don't know how long they wait before doing that.
Her shingles was 3 weeks gone before it was diagnosed so she dealt with it
for some time.

--
Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

On Mon, 2 Apr 2007 21:58:13 -0700, "Kelly C."
<kellcobb@hotmail.comspamtrap> wrote:

>Responding to my own post to share this link, which says the shingles
>vaccine is available for folks over 60 only. I hope I can hold out another
>18 years.
>
>http://www.webmd.com/news/20060526/f...ingles-vaccine
>
>Kelly C.

Notice, however, this paragraph from the article:

"Up to one in ten older patients won't be candidates for the vaccine
because of weakened immune systems due to cancer therapy, organ
transplants, HIV/AIDS, or other causes. The vaccine contains live but
weakened varicella virus that could overwhelm the immune systems of
those patients."

Remember, many of you are on meds to suppress your immune systems in
an effort to reduce inflammation. My DH, the RA sufferer, is on
multiple meds to suppress his immune system. Because he suffered from
shingles in the past, and they were quite widespread, they decided to
place him on a prophylactic dose of Valtrex for as long as they are
suppressing his immune system (unless his body decides it doesn't like
Valtrex, which hasn't happened so far).

It would be nice if he could take one shot, instead of the really big
blue caplets every day. He said it is worth it to him to take the
pills because he remembers the pain he felt just from breezes blowing
on his body.

KarenF
>
>
>"Kelly C." <kellcobb@hotmail.comspamtrap> wrote in message
>news_ednRlSadWTQ4zbnZ2dnUVZ_qiqnZ2d@comcast.com ...
>> (((Kelly)))
>>
>> You have had the year from hell, to be sure. I'm so sorry the shingles are
>> not responding to treatment. That sucks. I haven't heard anything about a
>> shingles vaccine, but will do some research, for sure.
>>
>> Don't leave the doctor without _something_ for the pain. Make him think
>> hard about it.
>>
>> Very soft hugs,
>> The other Kelly
>>
>

Kelly,

my thoughts are with you and my prayers too. You take care.

--
Love and Hugs to all
Jo the squirrely one

> It feels like this year will never end. First I figured it would end at
> December - nope no cure, no relief, no med. Then orencia and I figured I
> would be feeling better by my birthday - nope orencia failed, headaches
> and then just before my birthday the shingles. Well got the anti-viral in
> me quickly so obviously it must be my time at Easter - you know the good
> catholic thing. Well not going to happen. The shingles are still so
> painful - feels like someone is ripping my guts out without anaesthetic,
> they still haven't approved the rituxan trial (I pay for med, they pay for
> infusion and the close monitoring), I can't get it anyhow until the
> shingles are healed and now to top it off a sinus infection or a cold (I
> vote for a sinus infection - or a really bad stuffy nose that drips all
> the time.)
>
> So the problem - what to do about the pain from the shingles. When you
> read the internet basically it says "suck it up Kelly - you are already on
> all the neuropathic pain meds!" This too shall pass. In the meantime
> life is pretty damn horrible and the demerol is not doing it this time. I
> go back to the doctor tomorrow. Am almost hoping he decides I have
> appendicitis or something exciting that would tell me this isn't
> shingles - isn't going to happen.
>
> I understand there might be a shingles vaccine in the states. I would
> recommend anyone who has had chicken pox and has an autoimmune disease ask
> their doctor about it. If it would stop this I would recommend the person
> who designed it get two nobel prizes. Because (and yes I know you never
> start a sentence with because - get over it) this is much worse than my RA
> has ever been (of course the RA is bad right now too. Really bad).
>
> Anyhow there is my pity party. Would have some wine but it doesn't go
> with demerol. Might just have to have another cold bath and tuck into bed
> with a cold ice pack on the pain - only thing that works. Damn
> neurological stuff anyhow. who invented this medical crap anyhow.
>
> Soooooo just wanted everyone to know I am almost finished reading what
> happened since Disneyland and yes I am alive but missing that extra
> prednisone. Sounds like that was suppressing some of the pain - will
> bounce that idea off the doctor tomorrow. Going to ask for some lidocaine
> patches and see if he will go for that. Suppose to be going to Seattle
> for 2 nights this weekend with my husband, 2 sons, and their respective
> wife and girlfriend to see my 4 1/2 year old nephew. We are all looking
> forward to this. Will go but don't want to be a wet blanket.
>
> Off to bed and doctor's in the morning. Any homemade solutions greatfully
> accepted. This is way down deep pain - not just the itching that was
> there in the beginning. The touching lightly pain is still there too but
> that I could possibly deal with.
>
> Take care everyone. Prayers for everyone needing them being said.
>
> Kelly
>
>

kelly, no answers for you, but plenty of sympathy.

diane

{{{Kelly}}}

Hugs from Rosie


--
"If you wanna get it done, you gotta fight for yourself." -- Meat Loaf, Bat
Outta Hell II
<shenmei9wise@gmail.com> wrote in message
news:1175574734.879148.136160@o5g2000hsb.googlegro ups.com...
> Hugs and prayers, Kelly. You are in my prayers every day.
>
> m
>
>
>
> Kelly wrote:
> > It feels like this year will never end. First I figured it would end at
> > December - nope no cure, no relief, no med. Then orencia and I figured
I
> > would be feeling better by my birthday - nope orencia failed, headaches
and
> > then just before my birthday the shingles. Well got the anti-viral in
me
> > quickly so obviously it must be my time at Easter - you know the good
> > catholic thing. Well not going to happen. The shingles are still so
> > painful - feels like someone is ripping my guts out without anaesthetic,
> > they still haven't approved the rituxan trial (I pay for med, they pay
for
> > infusion and the close monitoring), I can't get it anyhow until the
shingles
> > are healed and now to top it off a sinus infection or a cold (I vote for
a
> > sinus infection - or a really bad stuffy nose that drips all the time.)
> >
> > So the problem - what to do about the pain from the shingles. When you
read
> > the internet basically it says "suck it up Kelly - you are already on
all
> > the neuropathic pain meds!" This too shall pass. In the meantime life
is
> > pretty damn horrible and the demerol is not doing it this time. I go
back
> > to the doctor tomorrow. Am almost hoping he decides I have appendicitis
or
> > something exciting that would tell me this isn't shingles - isn't going
to
> > happen.
> >
> > I understand there might be a shingles vaccine in the states. I would
> > recommend anyone who has had chicken pox and has an autoimmune disease
ask
> > their doctor about it. If it would stop this I would recommend the
person
> > who designed it get two nobel prizes. Because (and yes I know you never
> > start a sentence with because - get over it) this is much worse than my
RA
> > has ever been (of course the RA is bad right now too. Really bad).
> >
> > Anyhow there is my pity party. Would have some wine but it doesn't go
with
> > demerol. Might just have to have another cold bath and tuck into bed
with a
> > cold ice pack on the pain - only thing that works. Damn neurological
stuff
> > anyhow. who invented this medical crap anyhow.
> >
> > Soooooo just wanted everyone to know I am almost finished reading what
> > happened since Disneyland and yes I am alive but missing that extra
> > prednisone. Sounds like that was suppressing some of the pain - will
bounce
> > that idea off the doctor tomorrow. Going to ask for some lidocaine
patches
> > and see if he will go for that. Suppose to be going to Seattle for 2
nights
> > this weekend with my husband, 2 sons, and their respective wife and
> > girlfriend to see my 4 1/2 year old nephew. We are all looking forward
to
> > this. Will go but don't want to be a wet blanket.
> >
> > Off to bed and doctor's in the morning. Any homemade solutions
greatfully
> > accepted. This is way down deep pain - not just the itching that was
there
> > in the beginning. The touching lightly pain is still there too but that
I
> > could possibly deal with.
> >
> > Take care everyone. Prayers for everyone needing them being said.
> >
> > Kelly
>

Gah
I'm right there with you. I have shingles right now too. One of my 2
outbreaks every year. SUCKS. I just posted before seeing your post how
it's one thing to deal with the pain from the AS, but shingles is a
whole different animal. And I'm almost out of pain meds. GRR.
Much sympathy.
Aim

Kelly wrote:
> It feels like this year will never end. First I figured it would end at
> December - nope no cure, no relief, no med. Then orencia and I figured I
> would be feeling better by my birthday - nope orencia failed, headaches and
> then just before my birthday the shingles. Well got the anti-viral in me
> quickly so obviously it must be my time at Easter - you know the good
> catholic thing. Well not going to happen. The shingles are still so
> painful - feels like someone is ripping my guts out without anaesthetic,
> they still haven't approved the rituxan trial (I pay for med, they pay for
> infusion and the close monitoring), I can't get it anyhow until the shingles
> are healed and now to top it off a sinus infection or a cold (I vote for a
> sinus infection - or a really bad stuffy nose that drips all the time.)
>
> So the problem - what to do about the pain from the shingles. When you read
> the internet basically it says "suck it up Kelly - you are already on all
> the neuropathic pain meds!" This too shall pass. In the meantime life is
> pretty damn horrible and the demerol is not doing it this time. I go back
> to the doctor tomorrow. Am almost hoping he decides I have appendicitis or
> something exciting that would tell me this isn't shingles - isn't going to
> happen.
>
> I understand there might be a shingles vaccine in the states. I would
> recommend anyone who has had chicken pox and has an autoimmune disease ask
> their doctor about it. If it would stop this I would recommend the person
> who designed it get two nobel prizes. Because (and yes I know you never
> start a sentence with because - get over it) this is much worse than my RA
> has ever been (of course the RA is bad right now too. Really bad).
>
> Anyhow there is my pity party. Would have some wine but it doesn't go with
> demerol. Might just have to have another cold bath and tuck into bed with a
> cold ice pack on the pain - only thing that works. Damn neurological stuff
> anyhow. who invented this medical crap anyhow.
>
> Soooooo just wanted everyone to know I am almost finished reading what
> happened since Disneyland and yes I am alive but missing that extra
> prednisone. Sounds like that was suppressing some of the pain - will bounce
> that idea off the doctor tomorrow. Going to ask for some lidocaine patches
> and see if he will go for that. Suppose to be going to Seattle for 2 nights
> this weekend with my husband, 2 sons, and their respective wife and
> girlfriend to see my 4 1/2 year old nephew. We are all looking forward to
> this. Will go but don't want to be a wet blanket.
>
> Off to bed and doctor's in the morning. Any homemade solutions greatfully
> accepted. This is way down deep pain - not just the itching that was there
> in the beginning. The touching lightly pain is still there too but that I
> could possibly deal with.
>
> Take care everyone. Prayers for everyone needing them being said.
>
> Kelly
>
>

Thanks everyone but Aim! I did not need to know I can get this again Aim!
My sympathy. Much sympathy and empathy.

I met with my doctor today and he renewed my demerol and told me we are
dealing with pain control right now - there are no other meds until
everything is approved with the rituxan and the shingle pain is gone. He
told me not to delay with the pain control as I have been and that I am
allowed to double what I am taking. Not to be hard on myself and to allow
myself as much sleep as I need. He agrees no antidepressants as I need no
more side effects or drowsiness (the gabapentin, keppra and the demerol are
all keeping me drowsy enough - duh!). He reinforced that I am doing a great
job and he can't believe I am coping as well as I am. I felt better,
renewed prescriptions, came home, had a bath and took my meds. cooked tv
dinner for Pat and I as he was late home and will go to bed early and not
feel guilty.

I knew that was the story but sometimes I doubt myself. As he said I have
been through a lot in the last 2 years and I have coped very very well so
stop beating myself up.

So my day ended better than the last couple of days. Off to bed - thanks
for listening to my pity party everyone. I know we all face challenges but
is nice to hear from a professional that we are doing ok! Or more than ok!
And not to have to fight when we need pain killers - very few of us really
want them or take too many.
And Aim - get those pain meds. this sucks! As I told my doctor too every
website on shingles basically says do what I have been doing and then suck
it up because the pain just is there and it damn well hurts. Duh - I
figured that out.

Kelly
"Aim" <aimnews@comcast.net> wrote in message
news:Lb-dnTFofbVolI7bnZ2dnUVZ_r2dnZ2d@comcast.com...
> Gah
> I'm right there with you. I have shingles right now too. One of my 2
> outbreaks every year. SUCKS. I just posted before seeing your post how
> it's one thing to deal with the pain from the AS, but shingles is a whole
> different animal. And I'm almost out of pain meds. GRR.
> Much sympathy.
> Aim
>
> Kelly wrote:
>> It feels like this year will never end. First I figured it would end at
>> December - nope no cure, no relief, no med. Then orencia and I figured I
>> would be feeling better by my birthday - nope orencia failed, headaches
>> and then just before my birthday the shingles. Well got the anti-viral
>> in me quickly so obviously it must be my time at Easter - you know the
>> good catholic thing. Well not going to happen. The shingles are still
>> so painful - feels like someone is ripping my guts out without
>> anaesthetic, they still haven't approved the rituxan trial (I pay for
>> med, they pay for infusion and the close monitoring), I can't get it
>> anyhow until the shingles are healed and now to top it off a sinus
>> infection or a cold (I vote for a sinus infection - or a really bad
>> stuffy nose that drips all the time.)
>>
>> So the problem - what to do about the pain from the shingles. When you
>> read the internet basically it says "suck it up Kelly - you are already
>> on all the neuropathic pain meds!" This too shall pass. In the meantime
>> life is pretty damn horrible and the demerol is not doing it this time.
>> I go back to the doctor tomorrow. Am almost hoping he decides I have
>> appendicitis or something exciting that would tell me this isn't
>> shingles - isn't going to happen.
>>
>> I understand there might be a shingles vaccine in the states. I would
>> recommend anyone who has had chicken pox and has an autoimmune disease
>> ask their doctor about it. If it would stop this I would recommend the
>> person who designed it get two nobel prizes. Because (and yes I know you
>> never start a sentence with because - get over it) this is much worse
>> than my RA has ever been (of course the RA is bad right now too. Really
>> bad).
>>
>> Anyhow there is my pity party. Would have some wine but it doesn't go
>> with demerol. Might just have to have another cold bath and tuck into
>> bed with a cold ice pack on the pain - only thing that works. Damn
>> neurological stuff anyhow. who invented this medical crap anyhow.
>>
>> Soooooo just wanted everyone to know I am almost finished reading what
>> happened since Disneyland and yes I am alive but missing that extra
>> prednisone. Sounds like that was suppressing some of the pain - will
>> bounce that idea off the doctor tomorrow. Going to ask for some
>> lidocaine patches and see if he will go for that. Suppose to be going to
>> Seattle for 2 nights this weekend with my husband, 2 sons, and their
>> respective wife and girlfriend to see my 4 1/2 year old nephew. We are
>> all looking forward to this. Will go but don't want to be a wet blanket.
>>
>> Off to bed and doctor's in the morning. Any homemade solutions
>> greatfully accepted. This is way down deep pain - not just the itching
>> that was there in the beginning. The touching lightly pain is still
>> there too but that I could possibly deal with.
>>
>> Take care everyone. Prayers for everyone needing them being said.
>>
>> Kelly
>>

On Tue, 03 Apr 2007 02:59:06 GMT, "Kelly" <kelly.e1@shaw.ca> wrote:

[...]

>Off to bed and doctor's in the morning. Any homemade solutions greatfully
>accepted. This is way down deep pain - not just the itching that was there
>in the beginning. The touching lightly pain is still there too but that I
>could possibly deal with.

My old MD moved to a new city a long ways away, so I have a new MD as my
primary. He's terrific when it comes to pain management! He helped me
identify when my pain was most acute, especially on a daily basis, and was
able to cite what the primary cause was for each stage. Then he balance my
meds out, certain ones at certain times, and a timed release one for during
sleep hours, and I can't believe what a difference it's made! Now it only
takes about an hour for my body to get its motor running warmly in the
mornings, instead of two or three hours.

You might want to consider talking to a pain management health care
professional if you get a chance, and see if perhaps a combination of
regular and timed released pain meds might make a difference for you.

{{{{{{{{{Kelly}}}}}}}}}

--
LadyKitt

"Life is not a journey to the grave with the intention
of arriving safely in a pretty and well preserved body,
but rather to slide in broadside, thoroughly used up,
totally worn out, and proclaiming: WOW...WHAT A RIDE!!!"

Unfortunately there are no pain management doctors in our city and the
nearest one would be so booked up it would take forever. The specialist I
saw in Seattle said the best I could hope for with the neurological pain
would be a 7/10. If the RA simmers down with the rituxan that is doable. I
have my meds pretty closely regulated and have a system of pain control
exercises, meditation, relaxation etc. Just need a bit of time and less
shingles! Thanks for your help though LadyKitt. Trust me any help and
encouragement these days helps.

Kelly

"DaKittster" <dakittster@yahoo.com> wrote in message
news:4k7913hkvqfbjtsl6up40f1nsi9bdprf7f@4ax.com...
> On Tue, 03 Apr 2007 02:59:06 GMT, "Kelly" <kelly.e1@shaw.ca> wrote:
>
> [...]
>
>>Off to bed and doctor's in the morning. Any homemade solutions greatfully
>>accepted. This is way down deep pain - not just the itching that was
>>there
>>in the beginning. The touching lightly pain is still there too but that I
>>could possibly deal with.
>
> My old MD moved to a new city a long ways away, so I have a new MD as my
> primary. He's terrific when it comes to pain management! He helped me
> identify when my pain was most acute, especially on a daily basis, and was
> able to cite what the primary cause was for each stage. Then he balance
> my
> meds out, certain ones at certain times, and a timed release one for
> during
> sleep hours, and I can't believe what a difference it's made! Now it only
> takes about an hour for my body to get its motor running warmly in the
> mornings, instead of two or three hours.
>
> You might want to consider talking to a pain management health care
> professional if you get a chance, and see if perhaps a combination of
> regular and timed released pain meds might make a difference for you.
>
> {{{{{{{{{Kelly}}}}}}}}}
>
> --
> LadyKitt
>
> "Life is not a journey to the grave with the intention
> of arriving safely in a pretty and well preserved body,
> but rather to slide in broadside, thoroughly used up,
> totally worn out, and proclaiming: WOW...WHAT A RIDE!!!"