Update - hi everyone - long

Well it seems an update is probably due but I was desperately trying not to
do it. If Diane is out there - hi Di. I think I owe you a phone call but
not sure where to send it to. hope you are still due to be sprung by
Christmas - praying for that.

Can't remember where the saga of my life ended but we are now doing Orencia
first, then if it fails moving to rituxan. This is because I am RA negative
and despite the active state of my RA apparently the drugs must have been
working a tiny bit or perhaps because of being on the prednisone all this
time as well but I have no erosions in my feet and hands (swan necking and
tendon problems but no erosions). Apparently they like to save the rituxan
for RA positive people and people with erosions because it works better on
them. My RD still would rather do rituxan but because the other opinion he
had to get in order to get the infusion for me was from another good RD and
that is on file, he doesn't feel he can just bypass her recommendations in
case there was a problem (especially after all the hoopla last year with
enbrel).

So we have had to start the process over again. BMS (the drug company the
manufactures orencia or abatacept) seems a little slow on the uptake and it
has taken a bit to figure out how to get the med, how to start the
compassionate assistance program (my provincial med will not cover it and
neither will my extended because the provincial med program won't and it
will be about $24,000 Canadian for the med a year - 26,000 for the first
year), who will do the infusions etc. This process has taken approximately
a month and I now will start the process of filling out forms etc. The
review committee will meet sometime in the next 2 weeks to discuss the
assistance. I am so sick of this. I have written ever politician alive I
swear and no longer have the patience. Now the drug company. Critical
illnesses are the pits!

I have gotten away for a couple of weekends by upping my prednisone to 15 mg
a day. I am so sick of being up and about for only 1 hour or so a day of
function - my brain just doesn't work welll through the pain. Other than
that we have boosted the prednisone to 12.5 mg a day regularly which my rd
hates but sees no choice right now. The keppra we have doubled to try to
get a handle on the neurological pain caused by the enbrel and we have
switched from the lyrica to gabapentin to try to correct some of the blurry
eye. Of course the fatique caused by the gaba is restricting my driving to
morning only. Pain meds have tripled which goes against my grain but can't
be helped.

Anyhow going to Seattle come hell or high water to spend Christmas. Have
the hotel booked and am just damn well going to spend it with my family and
my 4 year old nephew. It is going to be a lovely holiday - stress free.
Pat will drive, I will take whatever it takes in the way of meds to get me
through, the scooter will be used and we have a hotel booked with a double
jacuzzi tub so I can get in an out of it and have a bath. 3 days of bliss.

They figure I might start the med infusions in January because of course it
is the christmas Season and people are off so things take longer, yada, yada
yada.
Then maybe in 3 weeks it might start to work. If it doesn't work in 3
months they will take me off of it and start Rituxan.

We did take the house off the market for Christmas and to give me a break.
It will go back up February 1st - the house we wanted to buy is still not
sold but is off the market as well. So maybe eventually things will work
out. We need to sell the house to help pay for meds, the scooter etc. We
have been taking out of retirement savings. But the health is more
important.

Anyhow have received a couple of cards from people and want to say thank
you. My hands are bad and I obviously did not do them this year so really
want you to know how special they have been. I read the group most of the
time and am still here - still smiling and trying to get through the day
without pissing off too many people with my pain moods. All in all doing
okay but getting tired. It has been a long 14 months.

My prayers and thoughts to those who need it (and yes I do know who you are
even if I have missed emailing you.) Gwen so glad to hear things are
working out a bit better. Melinda - one day I would still like an address I
could get something to you at. It is in an envelope on my desk and is a
pass it on type of thing for people who have had a bad day. Seems to me you
could use that book now - no it is not gloomy - you know I wouldn't do that.
It is a positive thing!

Take care everyone,
Kelly in BC

((((((((((((((((((kelly))))))))))))))) dang! after all that, i think you
deserve 3 days (heck, 3 months is more like it) of bliss over christmas!!!
i hope you have a totally stress-free and pain-free time, kelly!

kate
(sounds like you'll only be about 15 to 20 miles from where i live. maybe,
i'll catch ya next time you're in town, if you're willing, cuz christmas is
for family.)


"Kelly" <kelly.e1@shaw.ca> wrote in message
news:0brfh.463582$1T2.99712@pd7urf2no...
Well it seems an update is probably due but I was desperately trying not to
do it. If Diane is out there - hi Di. I think I owe you a phone call but
not sure where to send it to. hope you are still due to be sprung by
Christmas - praying for that.

Can't remember where the saga of my life ended but we are now doing Orencia
first, then if it fails moving to rituxan. This is because I am RA negative
and despite the active state of my RA apparently the drugs must have been
working a tiny bit or perhaps because of being on the prednisone all this
time as well but I have no erosions in my feet and hands (swan necking and
tendon problems but no erosions). Apparently they like to save the rituxan
for RA positive people and people with erosions because it works better on
them. My RD still would rather do rituxan but because the other opinion he
had to get in order to get the infusion for me was from another good RD and
that is on file, he doesn't feel he can just bypass her recommendations in
case there was a problem (especially after all the hoopla last year with
enbrel).

So we have had to start the process over again. BMS (the drug company the
manufactures orencia or abatacept) seems a little slow on the uptake and it
has taken a bit to figure out how to get the med, how to start the
compassionate assistance program (my provincial med will not cover it and
neither will my extended because the provincial med program won't and it
will be about $24,000 Canadian for the med a year - 26,000 for the first
year), who will do the infusions etc. This process has taken approximately
a month and I now will start the process of filling out forms etc. The
review committee will meet sometime in the next 2 weeks to discuss the
assistance. I am so sick of this. I have written ever politician alive I
swear and no longer have the patience. Now the drug company. Critical
illnesses are the pits!

I have gotten away for a couple of weekends by upping my prednisone to 15 mg
a day. I am so sick of being up and about for only 1 hour or so a day of
function - my brain just doesn't work welll through the pain. Other than
that we have boosted the prednisone to 12.5 mg a day regularly which my rd
hates but sees no choice right now. The keppra we have doubled to try to
get a handle on the neurological pain caused by the enbrel and we have
switched from the lyrica to gabapentin to try to correct some of the blurry
eye. Of course the fatique caused by the gaba is restricting my driving to
morning only. Pain meds have tripled which goes against my grain but can't
be helped.

Anyhow going to Seattle come hell or high water to spend Christmas. Have
the hotel booked and am just damn well going to spend it with my family and
my 4 year old nephew. It is going to be a lovely holiday - stress free.
Pat will drive, I will take whatever it takes in the way of meds to get me
through, the scooter will be used and we have a hotel booked with a double
jacuzzi tub so I can get in an out of it and have a bath. 3 days of bliss.

They figure I might start the med infusions in January because of course it
is the christmas Season and people are off so things take longer, yada, yada
yada.
Then maybe in 3 weeks it might start to work. If it doesn't work in 3
months they will take me off of it and start Rituxan.

We did take the house off the market for Christmas and to give me a break.
It will go back up February 1st - the house we wanted to buy is still not
sold but is off the market as well. So maybe eventually things will work
out. We need to sell the house to help pay for meds, the scooter etc. We
have been taking out of retirement savings. But the health is more
important.

Anyhow have received a couple of cards from people and want to say thank
you. My hands are bad and I obviously did not do them this year so really
want you to know how special they have been. I read the group most of the
time and am still here - still smiling and trying to get through the day
without pissing off too many people with my pain moods. All in all doing
okay but getting tired. It has been a long 14 months.

My prayers and thoughts to those who need it (and yes I do know who you are
even if I have missed emailing you.) Gwen so glad to hear things are
working out a bit better. Melinda - one day I would still like an address I
could get something to you at. It is in an envelope on my desk and is a
pass it on type of thing for people who have had a bad day. Seems to me you
could use that book now - no it is not gloomy - you know I wouldn't do that.
It is a positive thing!

Take care everyone,
Kelly in BC

Hi Kelly,
There is light at the end of the tunnel somewhere for you Kelly. It
has been a very long tunnel though, and it about time you made it
through. I hope that the orencia is the answer.
I will keep everything crossed.

Have a great Christmas.
Rose @}>->--
Being educated means that rather than fearing the unknown, one seeks to understand it. RB

Please remove "Ima" to reply.

You bet you. Still intend to stop at Bellingham to see Carole one of these
trips too. It is just easier when I am on my own not with my hubby. I am
going to Bellevue actually as that is where my brother and family is. Near
crossroads actually.

You have a good Christmas Kate and hopefully will be spending the time with
your son etc.

Kelly

"d'huit" <threecedars1@comcast2.net> wrote in message
news:2LidnVUrBob98uPYnZ2dnUVZ_vmqnZ2d@comcast.com. ..
> ((((((((((((((((((kelly))))))))))))))) dang! after all that, i think you
> deserve 3 days (heck, 3 months is more like it) of bliss over
> christmas!!!
> i hope you have a totally stress-free and pain-free time, kelly!
>
> kate
> (sounds like you'll only be about 15 to 20 miles from where i live.
> maybe,
> i'll catch ya next time you're in town, if you're willing, cuz christmas
> is
> for family.)
>
>
> "Kelly" <kelly.e1@shaw.ca> wrote in message
> news:0brfh.463582$1T2.99712@pd7urf2no...
> Well it seems an update is probably due but I was desperately trying not
> to
> do it. If Diane is out there - hi Di. I think I owe you a phone call but
> not sure where to send it to. hope you are still due to be sprung by
> Christmas - praying for that.
>
> Can't remember where the saga of my life ended but we are now doing
> Orencia
> first, then if it fails moving to rituxan. This is because I am RA
> negative
> and despite the active state of my RA apparently the drugs must have been
> working a tiny bit or perhaps because of being on the prednisone all this
> time as well but I have no erosions in my feet and hands (swan necking and
> tendon problems but no erosions). Apparently they like to save the
> rituxan
> for RA positive people and people with erosions because it works better on
> them. My RD still would rather do rituxan but because the other opinion he
> had to get in order to get the infusion for me was from another good RD
> and
> that is on file, he doesn't feel he can just bypass her recommendations in
> case there was a problem (especially after all the hoopla last year with
> enbrel).
>
> So we have had to start the process over again. BMS (the drug company the
> manufactures orencia or abatacept) seems a little slow on the uptake and
> it
> has taken a bit to figure out how to get the med, how to start the
> compassionate assistance program (my provincial med will not cover it and
> neither will my extended because the provincial med program won't and it
> will be about $24,000 Canadian for the med a year - 26,000 for the first
> year), who will do the infusions etc. This process has taken
> approximately
> a month and I now will start the process of filling out forms etc. The
> review committee will meet sometime in the next 2 weeks to discuss the
> assistance. I am so sick of this. I have written ever politician alive I
> swear and no longer have the patience. Now the drug company. Critical
> illnesses are the pits!
>
> I have gotten away for a couple of weekends by upping my prednisone to 15
> mg
> a day. I am so sick of being up and about for only 1 hour or so a day of
> function - my brain just doesn't work welll through the pain. Other than
> that we have boosted the prednisone to 12.5 mg a day regularly which my rd
> hates but sees no choice right now. The keppra we have doubled to try to
> get a handle on the neurological pain caused by the enbrel and we have
> switched from the lyrica to gabapentin to try to correct some of the
> blurry
> eye. Of course the fatique caused by the gaba is restricting my driving
> to
> morning only. Pain meds have tripled which goes against my grain but
> can't
> be helped.
>
> Anyhow going to Seattle come hell or high water to spend Christmas. Have
> the hotel booked and am just damn well going to spend it with my family
> and
> my 4 year old nephew. It is going to be a lovely holiday - stress free.
> Pat will drive, I will take whatever it takes in the way of meds to get me
> through, the scooter will be used and we have a hotel booked with a double
> jacuzzi tub so I can get in an out of it and have a bath. 3 days of
> bliss.
>
> They figure I might start the med infusions in January because of course
> it
> is the christmas Season and people are off so things take longer, yada,
> yada
> yada.
> Then maybe in 3 weeks it might start to work. If it doesn't work in 3
> months they will take me off of it and start Rituxan.
>
> We did take the house off the market for Christmas and to give me a break.
> It will go back up February 1st - the house we wanted to buy is still not
> sold but is off the market as well. So maybe eventually things will work
> out. We need to sell the house to help pay for meds, the scooter etc. We
> have been taking out of retirement savings. But the health is more
> important.
>
> Anyhow have received a couple of cards from people and want to say thank
> you. My hands are bad and I obviously did not do them this year so really
> want you to know how special they have been. I read the group most of the
> time and am still here - still smiling and trying to get through the day
> without pissing off too many people with my pain moods. All in all doing
> okay but getting tired. It has been a long 14 months.
>
> My prayers and thoughts to those who need it (and yes I do know who you
> are
> even if I have missed emailing you.) Gwen so glad to hear things are
> working out a bit better. Melinda - one day I would still like an address
> I
> could get something to you at. It is in an envelope on my desk and is a
> pass it on type of thing for people who have had a bad day. Seems to me
> you
> could use that book now - no it is not gloomy - you know I wouldn't do
> that.
> It is a positive thing!
>
> Take care everyone,
> Kelly in BC
>
>
>

Thanks Rose - I know there is light just seems this year it has kept itself
hidden more time than not.

Have been thinking of you this week and wondering how it has been going.
This time of year is always dicey with the concerts etc and then throw in
the weather this year and..... We have had incredible storms and I know the
Coquihalla has too. The wind and rain yesterday made the ferry ride
incredible. They were telling people where the "ralph" bags were and telling
people not to get out of their seats. The cafeteria apparently was only
giving out coffees in cups with lids and asking people not to put them down
on the table.

Have a good Christmas too Rose. Is your sister doing any better? Think of
her often.

Kelly
"RoseB" <Imarosab.1@shaw.ca> wrote in message
news:74gtn2davdrf7k1bfks6jiank2ajflim3q@4ax.com...
> Hi Kelly,
> There is light at the end of the tunnel somewhere for you Kelly. It
> has been a very long tunnel though, and it about time you made it
> through. I hope that the orencia is the answer.
> I will keep everything crossed.
>
> Have a great Christmas.
> Rose @}>->--
> Being educated means that rather than fearing the unknown, one seeks
> to understand it. RB
>
> Please remove "Ima" to reply.

Kelly, will be praying the Orencia will work and you will get relief very
soon. Sorry you're being bombarded with so much paper work when you just
don't feel like being bothered with it. Holidays are nice but they do get
in the way of medical procedures and other things that are important to us.
But hope your Christmas with your family and your nephew will be
onderful -- maybe just what the doctor ordered for a new start in the new
year. Let's count on it.
Gwen


"Kelly" <kelly.e1@shaw.ca> wrote in message
news:0brfh.463582$1T2.99712@pd7urf2no...
> Well it seems an update is probably due but I was desperately trying not
> to do it. If Diane is out there - hi Di. I think I owe you a phone call
> but not sure where to send it to. hope you are still due to be sprung by
> Christmas - praying for that.
>
> Can't remember where the saga of my life ended but we are now doing
> Orencia first, then if it fails moving to rituxan. This is because I am
> RA negative and despite the active state of my RA apparently the drugs
> must have been working a tiny bit or perhaps because of being on the
> prednisone all this time as well but I have no erosions in my feet and
> hands (swan necking and tendon problems but no erosions). Apparently they
> like to save the rituxan for RA positive people and people with erosions
> because it works better on them. My RD still would rather do rituxan but
> because the other opinion he had to get in order to get the infusion for
> me was from another good RD and that is on file, he doesn't feel he can
> just bypass her recommendations in case there was a problem (especially
> after all the hoopla last year with enbrel).
>
> So we have had to start the process over again. BMS (the drug company the
> manufactures orencia or abatacept) seems a little slow on the uptake and
> it has taken a bit to figure out how to get the med, how to start the
> compassionate assistance program (my provincial med will not cover it and
> neither will my extended because the provincial med program won't and it
> will be about $24,000 Canadian for the med a year - 26,000 for the first
> year), who will do the infusions etc. This process has taken
> approximately a month and I now will start the process of filling out
> forms etc. The review committee will meet sometime in the next 2 weeks to
> discuss the assistance. I am so sick of this. I have written ever
> politician alive I swear and no longer have the patience. Now the drug
> company. Critical illnesses are the pits!
>
> I have gotten away for a couple of weekends by upping my prednisone to 15
> mg a day. I am so sick of being up and about for only 1 hour or so a day
> of function - my brain just doesn't work welll through the pain. Other
> than that we have boosted the prednisone to 12.5 mg a day regularly which
> my rd hates but sees no choice right now. The keppra we have doubled to
> try to get a handle on the neurological pain caused by the enbrel and we
> have switched from the lyrica to gabapentin to try to correct some of the
> blurry eye. Of course the fatique caused by the gaba is restricting my
> driving to morning only. Pain meds have tripled which goes against my
> grain but can't be helped.
>
> Anyhow going to Seattle come hell or high water to spend Christmas. Have
> the hotel booked and am just damn well going to spend it with my family
> and my 4 year old nephew. It is going to be a lovely holiday - stress
> free. Pat will drive, I will take whatever it takes in the way of meds to
> get me through, the scooter will be used and we have a hotel booked with a
> double jacuzzi tub so I can get in an out of it and have a bath. 3 days
> of bliss.
>
> They figure I might start the med infusions in January because of course
> it is the christmas Season and people are off so things take longer, yada,
> yada yada.
> Then maybe in 3 weeks it might start to work. If it doesn't work in 3
> months they will take me off of it and start Rituxan.
>
> We did take the house off the market for Christmas and to give me a break.
> It will go back up February 1st - the house we wanted to buy is still not
> sold but is off the market as well. So maybe eventually things will work
> out. We need to sell the house to help pay for meds, the scooter etc. We
> have been taking out of retirement savings. But the health is more
> important.
>
> Anyhow have received a couple of cards from people and want to say thank
> you. My hands are bad and I obviously did not do them this year so really
> want you to know how special they have been. I read the group most of the
> time and am still here - still smiling and trying to get through the day
> without pissing off too many people with my pain moods. All in all doing
> okay but getting tired. It has been a long 14 months.
>
> My prayers and thoughts to those who need it (and yes I do know who you
> are even if I have missed emailing you.) Gwen so glad to hear things are
> working out a bit better. Melinda - one day I would still like an address
> I could get something to you at. It is in an envelope on my desk and is a
> pass it on type of thing for people who have had a bad day. Seems to me
> you could use that book now - no it is not gloomy - you know I wouldn't do
> that. It is a positive thing!
>
> Take care everyone,
> Kelly in BC
>

Kelly, glad to get your update and that you're getting started on the
orencia. i hope it helps. the paperwork sounds like the pits.

glad you're planning on making the trip to seattle and i hope your
holidays are as enjoyable as they can be.

hugs,

diane

Yea, come to B'ham! Preferably on a day when we have electricity! LOL!
We've lost it a few times this week...these winds are NUTS!! And
everything in my apartment is electric. Oh for the days when I had a gas
stove )))

Carole


Kelly wrote:
> You bet you. Still intend to stop at Bellingham to see Carole one of these
> trips too. It is just easier when I am on my own not with my hubby. I am
> going to Bellevue actually as that is where my brother and family is. Near
> crossroads actually.
>
> You have a good Christmas Kate and hopefully will be spending the time with
> your son etc.
>
> Kelly
>
> "d'huit" <threecedars1@comcast2.net> wrote in message
> news:2LidnVUrBob98uPYnZ2dnUVZ_vmqnZ2d@comcast.com. ..
>
>>((((((((((((((((((kelly))))))))))))))) dang! after all that, i think you
>>deserve 3 days (heck, 3 months is more like it) of bliss over
>>christmas!!!
>>i hope you have a totally stress-free and pain-free time, kelly!
>>
>>kate
>>(sounds like you'll only be about 15 to 20 miles from where i live.
>>maybe,
>>i'll catch ya next time you're in town, if you're willing, cuz christmas
>>is
>>for family.)
>>
>>
>>"Kelly" <kelly.e1@shaw.ca> wrote in message
>>news:0brfh.463582$1T2.99712@pd7urf2no...
>>Well it seems an update is probably due but I was desperately trying not
>>to
>>do it. If Diane is out there - hi Di. I think I owe you a phone call but
>>not sure where to send it to. hope you are still due to be sprung by
>>Christmas - praying for that.
>>
>>Can't remember where the saga of my life ended but we are now doing
>>Orencia
>>first, then if it fails moving to rituxan. This is because I am RA
>>negative
>>and despite the active state of my RA apparently the drugs must have been
>>working a tiny bit or perhaps because of being on the prednisone all this
>>time as well but I have no erosions in my feet and hands (swan necking and
>>tendon problems but no erosions). Apparently they like to save the
>>rituxan
>>for RA positive people and people with erosions because it works better on
>>them. My RD still would rather do rituxan but because the other opinion he
>>had to get in order to get the infusion for me was from another good RD
>>and
>>that is on file, he doesn't feel he can just bypass her recommendations in
>>case there was a problem (especially after all the hoopla last year with
>>enbrel).
>>
>>So we have had to start the process over again. BMS (the drug company the
>>manufactures orencia or abatacept) seems a little slow on the uptake and
>>it
>>has taken a bit to figure out how to get the med, how to start the
>>compassionate assistance program (my provincial med will not cover it and
>>neither will my extended because the provincial med program won't and it
>>will be about $24,000 Canadian for the med a year - 26,000 for the first
>>year), who will do the infusions etc. This process has taken
>>approximately
>>a month and I now will start the process of filling out forms etc. The
>>review committee will meet sometime in the next 2 weeks to discuss the
>>assistance. I am so sick of this. I have written ever politician alive I
>>swear and no longer have the patience. Now the drug company. Critical
>>illnesses are the pits!
>>
>>I have gotten away for a couple of weekends by upping my prednisone to 15
>>mg
>>a day. I am so sick of being up and about for only 1 hour or so a day of
>>function - my brain just doesn't work welll through the pain. Other than
>>that we have boosted the prednisone to 12.5 mg a day regularly which my rd
>>hates but sees no choice right now. The keppra we have doubled to try to
>>get a handle on the neurological pain caused by the enbrel and we have
>>switched from the lyrica to gabapentin to try to correct some of the
>>blurry
>>eye. Of course the fatique caused by the gaba is restricting my driving
>>to
>>morning only. Pain meds have tripled which goes against my grain but
>>can't
>>be helped.
>>
>>Anyhow going to Seattle come hell or high water to spend Christmas. Have
>>the hotel booked and am just damn well going to spend it with my family
>>and
>>my 4 year old nephew. It is going to be a lovely holiday - stress free.
>>Pat will drive, I will take whatever it takes in the way of meds to get me
>>through, the scooter will be used and we have a hotel booked with a double
>>jacuzzi tub so I can get in an out of it and have a bath. 3 days of
>>bliss.
>>
>>They figure I might start the med infusions in January because of course
>>it
>>is the christmas Season and people are off so things take longer, yada,
>>yada
>>yada.
>>Then maybe in 3 weeks it might start to work. If it doesn't work in 3
>>months they will take me off of it and start Rituxan.
>>
>>We did take the house off the market for Christmas and to give me a break.
>>It will go back up February 1st - the house we wanted to buy is still not
>>sold but is off the market as well. So maybe eventually things will work
>>out. We need to sell the house to help pay for meds, the scooter etc. We
>>have been taking out of retirement savings. But the health is more
>>important.
>>
>>Anyhow have received a couple of cards from people and want to say thank
>>you. My hands are bad and I obviously did not do them this year so really
>>want you to know how special they have been. I read the group most of the
>>time and am still here - still smiling and trying to get through the day
>>without pissing off too many people with my pain moods. All in all doing
>>okay but getting tired. It has been a long 14 months.
>>
>>My prayers and thoughts to those who need it (and yes I do know who you
>>are
>>even if I have missed emailing you.) Gwen so glad to hear things are
>>working out a bit better. Melinda - one day I would still like an address
>>I
>>could get something to you at. It is in an envelope on my desk and is a
>>pass it on type of thing for people who have had a bad day. Seems to me
>>you
>>could use that book now - no it is not gloomy - you know I wouldn't do
>>that.
>>It is a positive thing!
>>
>>Take care everyone,
>>Kelly in BC
>>
>>
>>
>
>
>

Kelly,

I sure wish some treatment would work miracles for you. I feel for you
having to had to endure this for so long.

I can imagine the frustration is something else when you can only be up and
about for 1 hour. I sure hope you get the right dose to work with the pred
and it does wonders for you.

I hope your trip to Seattle goes well and you loads of fun. You deserve it.


--

Love and hugs Jo

(\__/) .~ ~. ))
/O O ./ .'
{O__, \ {
/ . . ) \
|-| '-' \ } )) Warning: squirrels.
.( _( )_.'
'---.~_ _ _&

> Well it seems an update is probably due but I was desperately trying not
> to do it. If Diane is out there - hi Di. I think I owe you a phone call
> but not sure where to send it to. hope you are still due to be sprung by
> Christmas - praying for that.
>
> Can't remember where the saga of my life ended but we are now doing
> Orencia first, then if it fails moving to rituxan. This is because I am
> RA negative and despite the active state of my RA apparently the drugs
> must have been working a tiny bit or perhaps because of being on the
> prednisone all this time as well but I have no erosions in my feet and
> hands (swan necking and tendon problems but no erosions). Apparently they
> like to save the rituxan for RA positive people and people with erosions
> because it works better on them. My RD still would rather do rituxan but
> because the other opinion he had to get in order to get the infusion for
> me was from another good RD and that is on file, he doesn't feel he can
> just bypass her recommendations in case there was a problem (especially
> after all the hoopla last year with enbrel).
>
> So we have had to start the process over again. BMS (the drug company the
> manufactures orencia or abatacept) seems a little slow on the uptake and
> it has taken a bit to figure out how to get the med, how to start the
> compassionate assistance program (my provincial med will not cover it and
> neither will my extended because the provincial med program won't and it
> will be about $24,000 Canadian for the med a year - 26,000 for the first
> year), who will do the infusions etc. This process has taken
> approximately a month and I now will start the process of filling out
> forms etc. The review committee will meet sometime in the next 2 weeks to
> discuss the assistance. I am so sick of this. I have written ever
> politician alive I swear and no longer have the patience. Now the drug
> company. Critical illnesses are the pits!
>
> I have gotten away for a couple of weekends by upping my prednisone to 15
> mg a day. I am so sick of being up and about for only 1 hour or so a day
> of function - my brain just doesn't work welll through the pain. Other
> than that we have boosted the prednisone to 12.5 mg a day regularly which
> my rd hates but sees no choice right now. The keppra we have doubled to
> try to get a handle on the neurological pain caused by the enbrel and we
> have switched from the lyrica to gabapentin to try to correct some of the
> blurry eye. Of course the fatique caused by the gaba is restricting my
> driving to morning only. Pain meds have tripled which goes against my
> grain but can't be helped.
>
> Anyhow going to Seattle come hell or high water to spend Christmas. Have
> the hotel booked and am just damn well going to spend it with my family
> and my 4 year old nephew. It is going to be a lovely holiday - stress
> free. Pat will drive, I will take whatever it takes in the way of meds to
> get me through, the scooter will be used and we have a hotel booked with a
> double jacuzzi tub so I can get in an out of it and have a bath. 3 days
> of bliss.
>
> They figure I might start the med infusions in January because of course
> it is the christmas Season and people are off so things take longer, yada,
> yada yada.
> Then maybe in 3 weeks it might start to work. If it doesn't work in 3
> months they will take me off of it and start Rituxan.
>
> We did take the house off the market for Christmas and to give me a break.
> It will go back up February 1st - the house we wanted to buy is still not
> sold but is off the market as well. So maybe eventually things will work
> out. We need to sell the house to help pay for meds, the scooter etc. We
> have been taking out of retirement savings. But the health is more
> important.
>
> Anyhow have received a couple of cards from people and want to say thank
> you. My hands are bad and I obviously did not do them this year so really
> want you to know how special they have been. I read the group most of the
> time and am still here - still smiling and trying to get through the day
> without pissing off too many people with my pain moods. All in all doing
> okay but getting tired. It has been a long 14 months.
>
> My prayers and thoughts to those who need it (and yes I do know who you
> are even if I have missed emailing you.) Gwen so glad to hear things are
> working out a bit better. Melinda - one day I would still like an address
> I could get something to you at. It is in an envelope on my desk and is a
> pass it on type of thing for people who have had a bad day. Seems to me
> you could use that book now - no it is not gloomy - you know I wouldn't do
> that. It is a positive thing!
>
> Take care everyone,
> Kelly in BC
>

Thanks Squirrely. It will work - I am determined. A lot less bitchy than
my email the other day sounded (ouch - reread that one - sounded like I need
back on some major antidepressants.)

Am defininitely going to Seattle. Kyle phoned me yesterday and said we are
going to dance and sing (4 1/2 and I am his music aunty!)

I heard from the company the morning and they are trying to get me some
financial assistance for the med so will see. She said she would be back to
me today or tomorrow to say when the med would be delivered as I said
regardless of what happens - assistance or none - we would be getting it. I
told her this would be our retirement money we would spend next - will take
it out of the house sale when it happens but will leave a bit less for
future years or Pat will work longer. You make due - the important thing is
health.

Hope you have something special planned for Christmas. Enjoy SQ - the two
of you deserve the best this year.

Kelly
"Squirrely" <sqjo@sonic.net> wrote in message
news:45804552$0$69015$742ec2ed@news.sonic.net...
> Kelly,
>
> I sure wish some treatment would work miracles for you. I feel for you
> having to had to endure this for so long.
>
> I can imagine the frustration is something else when you can only be up
> and about for 1 hour. I sure hope you get the right dose to work with the
> pred and it does wonders for you.
>
> I hope your trip to Seattle goes well and you loads of fun. You deserve
> it.
>
>
> --
>
> Love and hugs Jo
>
> (\__/) .~ ~. ))
> /O O ./ .'
> {O__, \ {
> / . . ) \
> |-| '-' \ } )) Warning: squirrels.
> .( _( )_.'
> '---.~_ _ _&
>
>> Well it seems an update is probably due but I was desperately trying not
>> to do it. If Diane is out there - hi Di. I think I owe you a phone call
>> but not sure where to send it to. hope you are still due to be sprung by
>> Christmas - praying for that.
>>
>> Can't remember where the saga of my life ended but we are now doing
>> Orencia first, then if it fails moving to rituxan. This is because I am
>> RA negative and despite the active state of my RA apparently the drugs
>> must have been working a tiny bit or perhaps because of being on the
>> prednisone all this time as well but I have no erosions in my feet and
>> hands (swan necking and tendon problems but no erosions). Apparently
>> they like to save the rituxan for RA positive people and people with
>> erosions because it works better on them. My RD still would rather do
>> rituxan but because the other opinion he had to get in order to get the
>> infusion for me was from another good RD and that is on file, he doesn't
>> feel he can just bypass her recommendations in case there was a problem
>> (especially after all the hoopla last year with enbrel).
>>
>> So we have had to start the process over again. BMS (the drug company
>> the manufactures orencia or abatacept) seems a little slow on the uptake
>> and it has taken a bit to figure out how to get the med, how to start the
>> compassionate assistance program (my provincial med will not cover it and
>> neither will my extended because the provincial med program won't and it
>> will be about $24,000 Canadian for the med a year - 26,000 for the first
>> year), who will do the infusions etc. This process has taken
>> approximately a month and I now will start the process of filling out
>> forms etc. The review committee will meet sometime in the next 2 weeks
>> to discuss the assistance. I am so sick of this. I have written ever
>> politician alive I swear and no longer have the patience. Now the drug
>> company. Critical illnesses are the pits!
>>
>> I have gotten away for a couple of weekends by upping my prednisone to 15
>> mg a day. I am so sick of being up and about for only 1 hour or so a day
>> of function - my brain just doesn't work welll through the pain. Other
>> than that we have boosted the prednisone to 12.5 mg a day regularly which
>> my rd hates but sees no choice right now. The keppra we have doubled to
>> try to get a handle on the neurological pain caused by the enbrel and we
>> have switched from the lyrica to gabapentin to try to correct some of the
>> blurry eye. Of course the fatique caused by the gaba is restricting my
>> driving to morning only. Pain meds have tripled which goes against my
>> grain but can't be helped.
>>
>> Anyhow going to Seattle come hell or high water to spend Christmas. Have
>> the hotel booked and am just damn well going to spend it with my family
>> and my 4 year old nephew. It is going to be a lovely holiday - stress
>> free. Pat will drive, I will take whatever it takes in the way of meds to
>> get me through, the scooter will be used and we have a hotel booked with
>> a double jacuzzi tub so I can get in an out of it and have a bath. 3
>> days of bliss.
>>
>> They figure I might start the med infusions in January because of course
>> it is the christmas Season and people are off so things take longer,
>> yada, yada yada.
>> Then maybe in 3 weeks it might start to work. If it doesn't work in 3
>> months they will take me off of it and start Rituxan.
>>
>> We did take the house off the market for Christmas and to give me a
>> break. It will go back up February 1st - the house we wanted to buy is
>> still not sold but is off the market as well. So maybe eventually things
>> will work out. We need to sell the house to help pay for meds, the
>> scooter etc. We have been taking out of retirement savings. But the
>> health is more important.
>>
>> Anyhow have received a couple of cards from people and want to say thank
>> you. My hands are bad and I obviously did not do them this year so
>> really want you to know how special they have been. I read the group
>> most of the time and am still here - still smiling and trying to get
>> through the day without pissing off too many people with my pain moods.
>> All in all doing okay but getting tired. It has been a long 14 months.
>>
>> My prayers and thoughts to those who need it (and yes I do know who you
>> are even if I have missed emailing you.) Gwen so glad to hear things are
>> working out a bit better. Melinda - one day I would still like an
>> address I could get something to you at. It is in an envelope on my desk
>> and is a pass it on type of thing for people who have had a bad day.
>> Seems to me you could use that book now - no it is not gloomy - you know
>> I wouldn't do that. It is a positive thing!
>>
>> Take care everyone,
>> Kelly in BC
>>
>
>

Kelly,

For one I didn't think your post sounded bitchy. I thought it sounded like
you were sharing with us where you were at in your process of trying to get
better. So don't pick on my friend Kelly like that ok. ;-)

Oh how cute about Kyle your musical Aunty, that is so cute. ;-)
Aren't kids so great.

Oh Kelly, I so hope and pray that you will get the medicine assistance and
won't have to pay so much. I know you are trying all you can to get so much
better.

Nothing special planned for Christmas. No money to do anything. But that is
ok, I am ok with it. It makes me have my mind where it is suppose to be on
the more important things that have to do with Christmas.

Thank you Kelly and you and your family deserve the best for the year too.
;-)

I feel blessed because my one son Chris came down and brought all the food,
pots and pans etc to cook us a really nice Thanksgiving dinner. He didn't
want us to have to clean up either after it so that is why he brought his
cooking stuff. I know he and his girlfriend are going to her parents for
Christmas so I am happy with that.

It is funny how hardships make you happy for the smallest things. I am happy
with what we have for now. I feel blessed.

I feel blessed to have so many wonderful caring friends (sisters and
brothers) on this group and the support that we offer each other.

Sorry I got carried away there.

You take care and have a great holiday. Give Kyle a hug for me and give him
a bit more musical dancing Aunty for me. ;-)


--

Love and hugs Jo

(\__/) .~ ~. ))
/O O ./ .'
{O__, \ {
/ . . ) \
|-| '-' \ } )) Warning: squirrels.
.( _( )_.'
'---.~_ _ _&

> Thanks Squirrely. It will work - I am determined. A lot less bitchy than
> my email the other day sounded (ouch - reread that one - sounded like I
> need back on some major antidepressants.)
>
> Am defininitely going to Seattle. Kyle phoned me yesterday and said we
> are going to dance and sing (4 1/2 and I am his music aunty!)
>
> I heard from the company the morning and they are trying to get me some
> financial assistance for the med so will see. She said she would be back
> to me today or tomorrow to say when the med would be delivered as I said
> regardless of what happens - assistance or none - we would be getting it.
> I told her this would be our retirement money we would spend next - will
> take it out of the house sale when it happens but will leave a bit less
> for future years or Pat will work longer. You make due - the important
> thing is health.
>
> Hope you have something special planned for Christmas. Enjoy SQ - the two
> of you deserve the best this year.
>
> Kelly

{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{Kelly}}}}}}}}}}}}}} }}}}}}}}}}}}}}}}}}}}}}}}}}}},

you are hangin' tough kiddo. I didn't realize the severity and
progression had been so bad this last year. sorry i have'nt been more
supportive. i will try to do better. You shouldn't worry about the
higher dose needed for the pain meds. thats pretty normal in our
business and it will stabilize. there is no such thing as too high a
dosage because with opiods everybody has a unique tolerance level. what
is important is to reduce that pain level and do not try to tough it
out. the good news is no severe erosion yet and one of the drugs is
gonna work which will let you taper the pred and the pain meds. this is
going to be a turn-around year for you. i can hear it in the cold
canadian air that is starting to move thru the desert down here. you
enjoy your holiday. you do deserve some long luxurious jacuzzi time.

johnie

It has been an awful year Johnie but I made it. The reaction to the enbrel
was October 14th of last year, it took until July to get my meds to a point
I could drive and even now I usually only drive in the mornings for a short
bit. Unfortunately the damage is permanent until they move along in
research for spinal cord injuries etc. The toughest thing with the demerol
is I can't drive after I take it with the combination of the neuro drugs.
Also they really don't like people taking demerol - they prefer morphine or
codiene or derivitives. I am allergic to those. As you say the no severe
erosions is great though and I am sure the meds I have taken for the last 12
years have helped along with that. It will be a turn around year
though -and you have been supportive - just knowing people have been here
for me or for another on the group helps.

We are looking forward to going away a couple of times this year now - we
will be able to afford to do it now. Pat is so close to retirement and this
is our year to go for a few days to probably Southern Arizona or preferably
Sante Fe and Albequerque. I am taking the daughter in law and the youngest
son's girl friend to Disneyland in March for a weekend. They have been
before - I am the only 48 year old in the world I swear who hasn't been.
They are so excited it is contagious. Staying at Candy Cane Inn and renting
a scooter. Just a weekend but it will be a great girl's weekend. Only
things better than 2 boys - having 2 girls you didn't have to raise through
to Graduation. Love them both and I know they feel the same about me which
is good. I butt out of their lives just enough and give great gentle hugs.

So glad to hear the construction is going well - just give it a rest for a
couple of weeks. And enjoy that grandson of yours this Christmas. I know
that I will be in heaven with Kyle (4 1/2 you know)this year. He is so
excited I am coming to Seattle and he has my Christmas present purchased and
wrapped! Won't tell anyone what he asked Santa for (he is only allowed one
thing from Santa) - it is a secret you know. Last year no one knew until
the week before Christmas when he told us what not to get him (we surmised
that must be the one thing he asked Santa for and good thing it was. Was a
little dicey - boy I didn't know 3 1/2 year olds could keep secrets like
that.)

Have a great Christmas Johnie. Let's all bring the year out with a bang and
start 2007 out with a great start.

Kelly

"johnie" <jhugh@cox.net> wrote in message
news:1166253949.558304.31900@l12g2000cwl.googlegro ups.com...
> {{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{Kelly}}}}}}}}}}}}}} }}}}}}}}}}}}}}}}}}}}}}}}}}}},
>
> you are hangin' tough kiddo. I didn't realize the severity and
> progression had been so bad this last year. sorry i have'nt been more
> supportive. i will try to do better. You shouldn't worry about the
> higher dose needed for the pain meds. thats pretty normal in our
> business and it will stabilize. there is no such thing as too high a
> dosage because with opiods everybody has a unique tolerance level. what
> is important is to reduce that pain level and do not try to tough it
> out. the good news is no severe erosion yet and one of the drugs is
> gonna work which will let you taper the pred and the pain meds. this is
> going to be a turn-around year for you. i can hear it in the cold
> canadian air that is starting to move thru the desert down here. you
> enjoy your holiday. you do deserve some long luxurious jacuzzi time.
>
> johnie
>

Kelly, Demerol is a great pain killer but it does tend to shut too much
of the brain down or that is how I react to it. I am sorry you can't
take an opiod like oxy although not everyone reacts to it the way i do.
It moderates the pain but leaves my brain clear and with lower pain
levels i am able to sorta function. You know how 'sorta function' is a
very relative term for us gimpers.

Your "kyle" sounds deliteful. Such a special age in my book. Acacia is
5.5. Its hard to believe and he is a freakin' handfull. He has been
spending a fair amount of time in the school principals office and he
is only in pre-grade school. Apparently its hard to keep up with him.
He has a good school but does need more challenges than is getting. We
discovered that this summer when he was here for 3 months. It takes a
lot of energy to stay ahead of him. Im sure (i hope) he will mature
enough the next 7 months to deal with his restlessness better.

Disney land will be a hoot. When I took miguel 17 years ago my ankle
was flared up so used a wheelchair and in those days you got to always
go to the front of the line using a different entrance. One person was
allowed with you so we did the stuff miguel liked over and over and
over again..... Felt a little quilty but not enough not to take
advantage of it....>g<....You will have to check the rules for your
scooter.

If you are in southern arizona i better get a phone call. you have to
at least have a tamale with me.

You have a wonderful holiday with your family. Having little ones
around makes it fresh all over again. What a difference they make in
our lives. It is truly one of the greatest blessings (grandchildren) we
can receive. I am getting excited cause my little guy will be here in a
week. He wants to work on the house so i have fixed up an area where he
can help build a short snake wall using small brick that he can handle
alone. Gonna turn him into a mason....>g<....

All my best to you,
johnie

Luckily the demerol doesn't work that way for me but I know it can so I am
careful with it. The last ER doctor freaked (as they all do) and decided i
should try a morphine derivative - good man. Broke into a rash and threw
up - just made the bucket and missed his shoe. He won't question that
again. Needed lots of benedryl. Actually the sorta function works for me.

Kyle is a hoot. He is doing pre-kindergarten right now. His mom is chinese
and he is in a chinese preschool and was boosted up to pre-kindergarten.
Learning chinese, spanish and of course knows english as a first language.
Despite my brother's last name being Lee we are as white as they come - good
Irish and French Canadian stock I am afraid. I can understand the challenge
of 5.5. Worked with that age for several years - I love it but the boys do
tend to be a handful. It can take up until age 7 in my opinion - get him
into something like soccer to wear off some of that energy. I love the idea
of the masonry - Kyle and I have been planning a fort for the last year -
not too high off the ground because Kyle says Marcy the beagle has to be
able to get up. (I think he isn't sure about the heights himself. Of
course the planning is the fun part.

I am looking forward to the trip. And not going to feel guilty at all!

And yes if in Southern Arizona I will be calling. Just waiting to find out
how soon I react to the med. My husband doesn't want to take me in the pain
I am in right now - really hard on him - I know it hurts. Sometimes being a
caregiver hurts too - in different ways.

Go easy on the work - do some light stuff and keep the big guys working -
that is why you pay them the big bucks. Have a great holiday Johnie.

Kelly

"johnie" <jhugh@cox.net> wrote in message
news:1166415253.528796.220170@f1g2000cwa.googlegro ups.com...
> Kelly, Demerol is a great pain killer but it does tend to shut too much
> of the brain down or that is how I react to it. I am sorry you can't
> take an opiod like oxy although not everyone reacts to it the way i do.
> It moderates the pain but leaves my brain clear and with lower pain
> levels i am able to sorta function. You know how 'sorta function' is a
> very relative term for us gimpers.
>
> Your "kyle" sounds deliteful. Such a special age in my book. Acacia is
> 5.5. Its hard to believe and he is a freakin' handfull. He has been
> spending a fair amount of time in the school principals office and he
> is only in pre-grade school. Apparently its hard to keep up with him.
> He has a good school but does need more challenges than is getting. We
> discovered that this summer when he was here for 3 months. It takes a
> lot of energy to stay ahead of him. Im sure (i hope) he will mature
> enough the next 7 months to deal with his restlessness better.
>
> Disney land will be a hoot. When I took miguel 17 years ago my ankle
> was flared up so used a wheelchair and in those days you got to always
> go to the front of the line using a different entrance. One person was
> allowed with you so we did the stuff miguel liked over and over and
> over again..... Felt a little quilty but not enough not to take
> advantage of it....>g<....You will have to check the rules for your
> scooter.
>
> If you are in southern arizona i better get a phone call. you have to
> at least have a tamale with me.
>
> You have a wonderful holiday with your family. Having little ones
> around makes it fresh all over again. What a difference they make in
> our lives. It is truly one of the greatest blessings (grandchildren) we
> can receive. I am getting excited cause my little guy will be here in a
> week. He wants to work on the house so i have fixed up an area where he
> can help build a short snake wall using small brick that he can handle
> alone. Gonna turn him into a mason....>g<....
>
> All my best to you,
> johnie
>