Update on Me (new post)

[Guest guest]

rebecca and all,

i hope your manuscript is coming along rebecca. don't forget, if i can

help, let me know.

my sore spot/pg soreness on my leg is reducing. of course i upped my

mtx to 15 mg for last 2 weeks and did get a remicade infusion. so good

news there. it really scared me because it came on so fast and severe,

within 24 hours. 3 weeks later it is prolly 80% improved. it might

have even been en for all i know. but the soreness was so tender and

went to the bone.

i keep looking for work. i do have a couple of perspective places i

have talked to. screening interview one this am even. so its just a

matter of time. back on unemployment. i will be getting an app for

extended benefits here shortly.

still waiting to here from the patients access network foundation on

how much of my remicade co-pay they will help cover. they called me a

week ago to clarify that no one in the household was working, so i

expect to hear from them any day now.

hope ev1 is having a great day,

love ya all,

jeff,

pg (en?),

cd

[Guest guest]

Hi Jeff,

The book is coming along, thanks for asking. I'm editing everything

and have recently determined that the poems need to be separated into

the various grade and reading levels. This will add to the work and

require more writing, but will then result in more books to publish. I

found a way to self publish and the good news is they will create one

book at a time. It's expensive though and I doubt it could generate a

profit if I did it that way. Still, something to keep in mind,

especially for the smaller books for kids--and yes, I may very well

ask for your help in doing the downloading if I go that route. :-)

I'm so glad the leg is improving for you! Hopefully one of the jobs

will pan out soon too! It's about time for the tide to change.

Yeah, it could have been EN you had. It does get sore to the

bone--feels rather deep. If I had to locate how it feels to me it's

between the bone and skin. Not on the skin, but below it. And it feels

like it is tearing the skin away from the bone as it expands--Very tender.

Take care and have a Great Weekend!

Love,

idio. EN '68

[Guest guest]

Hello Jeff, , and group:

I have finally had the time and energy to cruise through the posts,

and it has felt good to be reconnected. While I am sorry to hear

about Jeff's outbreak of PG, it is still nice to know that I

have 'family' out there.

Jeff, I hope that you are feeling better by the time you get this

message and that the wound is healed over. I, of course, also wish

you much luck with your job search.

As for me, I have had the usual starts and stops. I am on Remicade

now with infusions every six weeks. While the Remicade is working on

my RA and PG, it has caused some problems. To that end, I have an

infection that developed, and it is being monitored very closely. I

also contracted a very painful bout of Shingles. Oh, did I mention

that I was also diagnosed with Osteoarthritis? :-)

We had to decide if it was worth taking me off of Remicade, but I

decided that it was worth staying with it since my wounds as FINALLY

healing. As you know, it has been almost two years with open wounds,

but my leg wound has finally shrunk to the size of a silver dollar.

I have a terrible scar from my ankle to my knee, but at least I still

have my leg.

I am still on Prednisone, but I am only at 10 mgs a day now. It has

been three weeks, and I am already seeing a difference. I have my

neck back :-) I am also more pleasant to be around. I do have the

residual cataracts, which don't get better, and the extra 50 lbs.,

but it was part of the medicinal cocktail that helped the healing.

All of my doctors are at Stanford now, which has made everything a

lot easier. I am now a usual during grand rounds, so I have reached

Jeff's level!!! I just know that there was a reason for me going

through this battle, and I would like to think that it was to help

others. Who knows . . .

, I wish you well with your book, and I thank you, again, for

moderating this wonderful site.

Love,

Elaine

PG/RA

>

> rebecca and all,

>

> i hope your manuscript is coming along rebecca. don't forget, if i

can

> help, let me know.

>

> my sore spot/pg soreness on my leg is reducing. of course i upped

my

> mtx to 15 mg for last 2 weeks and did get a remicade infusion. so

good

> news there. it really scared me because it came on so fast and

severe,

> within 24 hours. 3 weeks later it is prolly 80% improved. it

might

> have even been en for all i know. but the soreness was so tender

and

> went to the bone.

>

> i keep looking for work. i do have a couple of perspective places

i

> have talked to. screening interview one this am even. so its just

a

> matter of time. back on unemployment. i will be getting an app

for

> extended benefits here shortly.

>

> still waiting to here from the patients access network foundation

on

> how much of my remicade co-pay they will help cover. they called

me a

> week ago to clarify that no one in the household was working, so i

> expect to hear from them any day now.

>

> hope ev1 is having a great day,

> love ya all,

> jeff,

> pg (en?),

> cd

>

[Guest guest]

Hello Jeff, , and group:

I have finally had the time and energy to cruise through the posts,

and it has felt good to be reconnected. While I am sorry to hear

about Jeff's outbreak of PG, it is still nice to know that I

have 'family' out there.

Jeff, I hope that you are feeling better by the time you get this

message and that the wound is healed over. I, of course, also wish

you much luck with your job search.

As for me, I have had the usual starts and stops. I am on Remicade

now with infusions every six weeks. While the Remicade is working on

my RA and PG, it has caused some problems. To that end, I have an

infection that developed, and it is being monitored very closely. I

also contracted a very painful bout of Shingles. Oh, did I mention

that I was also diagnosed with Osteoarthritis? :-)

We had to decide if it was worth taking me off of Remicade, but I

decided that it was worth staying with it since my wounds as FINALLY

healing. As you know, it has been almost two years with open wounds,

but my leg wound has finally shrunk to the size of a silver dollar.

I have a terrible scar from my ankle to my knee, but at least I still

have my leg.

I am still on Prednisone, but I am only at 10 mgs a day now. It has

been three weeks, and I am already seeing a difference. I have my

neck back :-) I am also more pleasant to be around. I do have the

residual cataracts, which don't get better, and the extra 50 lbs.,

but it was part of the medicinal cocktail that helped the healing.

All of my doctors are at Stanford now, which has made everything a

lot easier. I am now a usual during grand rounds, so I have reached

Jeff's level!!! I just know that there was a reason for me going

through this battle, and I would like to think that it was to help

others. Who knows . . .

, I wish you well with your book, and I thank you, again, for

moderating this wonderful site.

Love,

Elaine

PG/RA

>

> rebecca and all,

>

> i hope your manuscript is coming along rebecca. don't forget, if i

can

> help, let me know.

>

> my sore spot/pg soreness on my leg is reducing. of course i upped

my

> mtx to 15 mg for last 2 weeks and did get a remicade infusion. so

good

> news there. it really scared me because it came on so fast and

severe,

> within 24 hours. 3 weeks later it is prolly 80% improved. it

might

> have even been en for all i know. but the soreness was so tender

and

> went to the bone.

>

> i keep looking for work. i do have a couple of perspective places

i

> have talked to. screening interview one this am even. so its just

a

> matter of time. back on unemployment. i will be getting an app

for

> extended benefits here shortly.

>

> still waiting to here from the patients access network foundation

on

> how much of my remicade co-pay they will help cover. they called

me a

> week ago to clarify that no one in the household was working, so i

> expect to hear from them any day now.

>

> hope ev1 is having a great day,

> love ya all,

> jeff,

> pg (en?),

> cd

>

[Guest guest]

Hi Elaine,

Good to hear from you, and glad that despite new health challenges,

the PG is in much better control now.

I know you will help many doctors and patients by participating in

Grand Rounds. It is certainly not the legacy you chose, but an

important one nonetheless.

I work on my book daily, either editing it or writing additional

chapters. By speaking with teenage girls and friends of friends I have

determined that the work lends itself best to 5th and 6th grade girls

in subject matter and poetic style. By this grade, students know how

to use a dictionary, so I can use a more advanced vocabulary and even

sneak in fun references that will tickle an older audience. At least

that is the current thinking, and a publisher may choose a different

audience--which is fine.

Take good care of yourself, and keep in touch, Elaine. Your updates

are always inspirational. They show that special people, like you, can

rise to any occasion with grace and good humor.

Love,

idio. EN. 68

[Guest guest]

Hi ,

As always, it is great to hear from you. Thanks for your kind

words. I just keep on truckin' (please excuse the term, but I did

come of age in the mid-70's).

I just cannot let all of this keep me down. In fact, while the

doctors were not thrilled, I left for New York the day after my

Shingles diagnosis. It was tough, but I played a game with myself by

looking two blocks ahead for seating and then pushed myself to get

there for a little rest. It was like a serious of small feats, so to

speak :-)

The mind game worked, and I felt a lot better to at least do my best

to get around. The drugs made me tired, so I took a little nap in

the lobby while waiting to see Wicked. In another time, I would have

been embarrassed, but I don't care now. I just think: I have to do

whatever makes it okay, and it does not matter what others think.

I also had a realization during that trip. I was waiting to get into

the Yankee Stadium and enjoying the people watching. Well, there was

a man who was panhandling, and I noticed from afar that there was

something different about him. When I got closer, I saw that he had

two amputated arms at the forearm.

I gave him some money, wished him well, and when I got back to the

hotel, I only bandaged my leg where the wound was and left the

remainder exposed. This man taught me that it is not the look of the

scar that matters. I am now rather proud of my scars, as it is a

reminder of how hard I have fought.

So, this entire ordeal continues to have its sadness and hurdles, but

I keep finding the silver lining somehow. They are good lessons, and

while it seems strange to say, my life almost seems more enriched

now. I value every day and enjoy those around me much more. I seem

to ignore the little things that bothered me before and embrace what

is new.

Well, I guess I will leave this for the book :-) Maybe I will be

inspired when you are published. With that, I know that you will be

very successful with it.

Love,

Elaine

PG/RA/ and I now must add OA

>

> Hi Elaine,

> Good to hear from you, and glad that despite new health challenges,

> the PG is in much better control now.

>

> I know you will help many doctors and patients by participating in

> Grand Rounds. It is certainly not the legacy you chose, but an

> important one nonetheless.

>

> I work on my book daily, either editing it or writing additional

> chapters. By speaking with teenage girls and friends of friends I

have

> determined that the work lends itself best to 5th and 6th grade

girls

> in subject matter and poetic style. By this grade, students know how

> to use a dictionary, so I can use a more advanced vocabulary and

even

> sneak in fun references that will tickle an older audience. At least

> that is the current thinking, and a publisher may choose a different

> audience--which is fine.

>

> Take good care of yourself, and keep in touch, Elaine. Your updates

> are always inspirational. They show that special people, like you,

can

> rise to any occasion with grace and good humor.

>

> Love,

>

> idio. EN. 68

>

[Guest guest]

hi elaine,

funny, i was just thinking about you yesterday. reached my level?

sometimes i don't know whether to laugh or cry! not a nice one is

it? you certainly have had a much more trying time with this than i.

i got my remicade treatment, late but, i did it not really knowing

how i would pay for it. turns out i am approved to get most of my

insurance deduct covered by remistart and my copay by the patient

access network foundation. here it is 3 weeks later and the soreness

is about 90% gone. i don't know what it was, but it scared the

living xxx out'a me. next week i will lower my mtx dose down to 10mg.

job situation is really nasty. not one phone call last week. fewer

and fewer jobs to even apply for. not sure what i am going to do.

my extended unemployment benefits start tomorrow for 13 weeks. of

course, my cobra eats up about half of it. so not much after that.

it sounds like the wounds are healing good, now if only you could

find a maintenance med to keep them away and preserve the rest of

your body. i think you have a great medical team there, in fact, i

know you have one of the best in the world. can you imagine the

local doctor trying to deal with this? omg! you are living proof of

what i have been advocating here for the last 5 years. many people

either don't believe me or think they can't do it. it can and it

does work. it makes all the difference in the world.

i can't tell you how happy i am for you but also that you come here

and update us. i will never forget when you first came here and our

discussions back and forth. that's what this group is all about.

you see, you are my support too!

take care,

love,

jeff,

pg,

cd

>

> Hello Jeff, , and group:

>

> I have finally had the time and energy to cruise through the posts,

> and it has felt good to be reconnected. While I am sorry to hear

> about Jeff's outbreak of PG, it is still nice to know that I

> have 'family' out there.

>

> Jeff, I hope that you are feeling better by the time you get this

> message and that the wound is healed over. I, of course, also wish

> you much luck with your job search.

>

> As for me, I have had the usual starts and stops. I am on Remicade

> now with infusions every six weeks. While the Remicade is working

on

> my RA and PG, it has caused some problems. To that end, I have an

> infection that developed, and it is being monitored very closely.

I

> also contracted a very painful bout of Shingles. Oh, did I mention

> that I was also diagnosed with Osteoarthritis? :-)

>

> We had to decide if it was worth taking me off of Remicade, but I

> decided that it was worth staying with it since my wounds as

FINALLY

> healing. As you know, it has been almost two years with open

wounds,

> but my leg wound has finally shrunk to the size of a silver

dollar.

> I have a terrible scar from my ankle to my knee, but at least I

still

> have my leg.

>

> I am still on Prednisone, but I am only at 10 mgs a day now. It

has

> been three weeks, and I am already seeing a difference. I have my

> neck back :-) I am also more pleasant to be around. I do have the

> residual cataracts, which don't get better, and the extra 50 lbs.,

> but it was part of the medicinal cocktail that helped the healing.

>

> All of my doctors are at Stanford now, which has made everything a

> lot easier. I am now a usual during grand rounds, so I have

reached

> Jeff's level!!! I just know that there was a reason for me going

> through this battle, and I would like to think that it was to help

> others. Who knows . . .

>

> , I wish you well with your book, and I thank you, again,

for

> moderating this wonderful site.

>

> Love,

> Elaine

> PG/RA

[Guest guest]

Hi Jeff,

Thanks so much for your response and kind words. You make me both

laugh and cry. I feel as if I keep reconnecting with an old friend

(well, not old in age -- ya know).

I want you to know that I thank you for all of the support over the

last two years and for what I know will continue way beyond. When

things get tough, I think of your encouraging words and find strength

in them.

I have known that I am not alone in this, and I have embraced that

fact to muster courage. You have been a rock, and I feel so

fortunate to have found such a compassionate and informed resource to

assist in the battle of this terrible disease.

I wish you well in your search for employment. I know that any

employer would be honored to have you on their team. Hang in there

and keep the faith.

Thanks, again, for all that you do for us all!

Love,

Elaine

RA/PG/OA

> >

> > Hello Jeff, , and group:

> >

> > I have finally had the time and energy to cruise through the

posts,

> > and it has felt good to be reconnected. While I am sorry to hear

> > about Jeff's outbreak of PG, it is still nice to know that I

> > have 'family' out there.

> >

> > Jeff, I hope that you are feeling better by the time you get this

> > message and that the wound is healed over. I, of course, also

wish

> > you much luck with your job search.

> >

> > As for me, I have had the usual starts and stops. I am on

Remicade

> > now with infusions every six weeks. While the Remicade is

working

> on

> > my RA and PG, it has caused some problems. To that end, I have

an

> > infection that developed, and it is being monitored very

closely.

> I

> > also contracted a very painful bout of Shingles. Oh, did I

mention

> > that I was also diagnosed with Osteoarthritis? :-)

> >

> > We had to decide if it was worth taking me off of Remicade, but I

> > decided that it was worth staying with it since my wounds as

> FINALLY

> > healing. As you know, it has been almost two years with open

> wounds,

> > but my leg wound has finally shrunk to the size of a silver

> dollar.

> > I have a terrible scar from my ankle to my knee, but at least I

> still

> > have my leg.

> >

> > I am still on Prednisone, but I am only at 10 mgs a day now. It

> has

> > been three weeks, and I am already seeing a difference. I have

my

> > neck back :-) I am also more pleasant to be around. I do have

the

> > residual cataracts, which don't get better, and the extra 50

lbs.,

> > but it was part of the medicinal cocktail that helped the healing.

> >

> > All of my doctors are at Stanford now, which has made everything

a

> > lot easier. I am now a usual during grand rounds, so I have

> reached

> > Jeff's level!!! I just know that there was a reason for me going

> > through this battle, and I would like to think that it was to

help

> > others. Who knows . . .

> >

> > , I wish you well with your book, and I thank you, again,

> for

> > moderating this wonderful site.

> >

> > Love,

> > Elaine

> > PG/RA

>