Re: PG Assistance/Information Needed....

[Guest guest]

Hi ,

Thank you so much for your kind response. I have looked over the PG files and

got a bit

confused/overwhelmed with all the information. I'll have another look and maybe

now that

I've calmed down a bit, more will sink in!

Appreciate you a a great deal!

Beah

[Guest guest]

Hi ,

Thank you so much for your kind response. I have looked over the PG files and

got a bit

confused/overwhelmed with all the information. I'll have another look and maybe

now that

I've calmed down a bit, more will sink in!

Appreciate you a a great deal!

Beah

[Guest guest]

hi rebecca and gayle,

gayle wrote to me and we have been discussing. i also suggested your

archives. she is gathering some info for me, but so far my

suggestion is to get her....FAST....to a teaching medical center

where they can do " grand rounds " and deep dive her medical problems.

pg, nuttin to mess with!!!

be well all,

jeff,

pg,

cd

>

> Hi Beah,

> I'm sorry to hear that your sister is having such a rough go of it.

> Jeff is our PG expert and resource person, but until he sees your

post and gets a chance to reply, take a look at our PG forum files at

our Group site:

>

http://health.groups.yahoo.com/group/erythema_nodosum_Group/files/Pyod

erma%20Gangrenosum%20Forum/

>

> Pay special attention to whatever you see posted by Jeff, [and

Elaine, who has had the worse case of PG we are aware of.] 

> Try to stay positive. It is always darkest before the dawn.

> Love,

>

> idio. EN '68

>

>

>

> Please enter

> Erythema Nodosum.........Thanks!

>

> Donation Information

>

[Guest guest]

Hi Beth,

I have been fighting a battle with PG for almost two years now. I am

happy to say that the final wound is about 90% healed :-)

As for the injections into the wound, it did not work for me. In fact,

the invasive procedure of inserting the needle actually created more

wounds. I ended up with nine total wounds, and I believe that at least

three were caused by the injections. With that being the case, I would

not go there. Both Stanford and the Mayo Clinic agreed.

I may have missed it, but I am wondering what is causing your sister's

outbreak. For me, it has been determined that it is due to my RA.

Since this is the case, we are dealing with that as the underlying

cause. I have been on various regimines of medication, and many would

work and then just stop.

Currently, I am on a lowered dose of Prednisone (10 mgs. from a high of

120 mgs at one point) and Remicade infusions. So far, this is

working. We also avoided any debriding of the wounds for fear that

they would get worse, but we finally started that process a couple of

months ago, and it has proven to expedite the healing. So far, it has

not created another wound, nor has it caused the current ones to grow.

While we know that successful treatment plans vary vastly based on the

individual and underlying causes, my experience has been to keep the

affected area elevated, if possible, seek excellent wound care (I

changed doctors three times before finding one who was familiar with

the disease), try different bandaging and ointment techniques, and

avoid injections into the wound.

The other issue for any of us is to keep your spirits up and know that

this takes time and experimentation. While you don't believe it, you

will get through it. As Jeff always recommends, finding a teaching

hospital is the very best course of action. I am certain that I would

have healed much faster with a lot less loss if I had sought it out in

the beginning.

I became frustrated with the doctors in the 'regular' medical community

after almost a year of this, so I went to Mayo in sdale who then

turned my case over to Stanford. I am told that the Cleveland Clinic

is also an expert in this field.

Good luck to your sister. I wish her the best and hope that her

doctors can find the right balance of meds and wound care that will

expedite her healing and provide her the utmost of comfort. Also,

encourage her to find others who suffer from the same disease, like

those of whom are on this board. 'We' know what we are going through,

and while you do not wish it on anyone, it helps to know that you are

not alone out there and that you can be honest in terms of how you feel

and what you are dealing with day in and day out.

Best wishes,

Elaine

PG/RA/OA

>

> Hi ,

>

> Thank you so much for your kind response. I have looked over the PG

files and got a bit

> confused/overwhelmed with all the information. I'll have another

look and maybe now that

> I've calmed down a bit, more will sink in!

>

> Appreciate you a a great deal!

> Beah

>

[Guest guest]

wow elaine,

you have come a long ways! such great news! i knew you could do

it. i am proud of ya!

love,

jeff,

pg,

cd

> >

> > Hi ,

> >

> > Thank you so much for your kind response. I have looked over the

PG

> files and got a bit

> > confused/overwhelmed with all the information. I'll have another

> look and maybe now that

> > I've calmed down a bit, more will sink in!

> >

> > Appreciate you a a great deal!

> > Beah

> >

>

[Guest guest]

Ah, my dear Jeff -- thanks so much for your kind sentiments. Truly,

while we have never met, you have been my support through this all.

You encouraged me along the way and assured me to just hang tough.

You have been honest and compassionate, and I thank you for it all.

Hopefully, I will have all of this behind me soon, but we shall see.

Either way, I now have the strength to get through it, and I do all

that I can to help others now, as you have done for me.

Love,

Elaine

PG/RA/OA

P.S.-How is the job search going? I hope that you are getting some

hits out there.

> > >

> > > Hi ,

> > >

> > > Thank you so much for your kind response. I have looked over

the

> PG

> > files and got a bit

> > > confused/overwhelmed with all the information. I'll have

another

> > look and maybe now that

> > > I've calmed down a bit, more will sink in!

> > >

> > > Appreciate you a a great deal!

> > > Beah

> > >

> >

>

[Guest guest]

my dear elaine,

how wonderful for you to say that! i feel as though i know you. i

admire your strength and stemina, both physically and mentally.

obviously, pg puts one to the ultimate test. there were times i just

wanted to give up. but then you have to ask yourself, " then what? "

the pain is one thing, but then dealing with all the other stuff. the

medications and side effects, running to doctors and clinics. then if

you aren't working, what about finances, dealing with the family

because all we all know, close family members have a pretty tough time

dealing with a loved one in this condition. early on, very early

before any of my diagnoses, my wife actually left me for a while. i

was in so much pain, cd and some pg, but no one knew what it was. i

was frustrated, irritable and just basically hard to live with. local

doctors almost pushed me over the edge and my life was about to go into

ruins. thank God for teaching hospitals and the univeristy of michigan!

for me and you, the battle is not over. we are onto maintenance

treatments now, but there continues to be some caution on our side. it

can wear on ya. without a very good understanding of the mechanisms of

this disease, but on top of that, we don't even know why the treatments

work as they do, we proceed cautiously.

job front. heh. well, i just got out of an interview with Cobasys,

LLC. the only interview i have had in 3 months. it went very well and

i even met a former textron automotive employee (was called in to be

part of my interview). so I will be milking that one for all its

worth! i think i will get a 2nd interview from the sounds of it.

cobasys makes NiMHax (called nickel metal hydride)batteries for hybrid

and plug & play vehicles. they also have product lines for the

stationary market. they are being bought so their name will prolly

change, but they really liked me. right now, the NiMHax battery is the

only current production battery for hybrids short of the li ion

(lithium ion) battery. for automotive applications, the li ion has not

proved itself yet, but gm is running with it for their new volt car.

funny thing about this industry tho, they have back up plans to re-

engineer to the current production battery technology, NiMHax if the li

ion does not develop and overcome its shortfalls in the next year or

so. cobasys has a development contract with gm for the li ion and they

feel they will be the front runner in this technology.

ok, i rambled on enough. i have had very few jobs to even apply for,

let alone interviews, as i said. i am putting all my marbles into

cobasys at this point.

take care and write me anytime,

jeff,

pg,

cd

>

> Ah, my dear Jeff -- thanks so much for your kind sentiments. Truly,

> while we have never met, you have been my support through this all.

> You encouraged me along the way and assured me to just hang tough.

> You have been honest and compassionate, and I thank you for it all.

> Hopefully, I will have all of this behind me soon, but we shall see.

> Either way, I now have the strength to get through it, and I do all

> that I can to help others now, as you have done for me.

> Love,

> Elaine

> PG/RA/OA

>

> P.S.-How is the job search going? I hope that you are getting some

> hits out there.

[Guest guest]

Hi Jeff,

I hope that you are doing well. Thanks, as always, for your

kindness, knowledge, and support. I have been crossing my fingers

that you have found a job, so I certainly hope that is the case for

you. Let me know.

I wanted to let you know that I just hit my 2-year anniversary with

this bout of PG. My leg is finally almost healed except for a small

patch, which is about 3 " x3 " . That is not too bad considering that my

entire calf was 'eaten up.'

I am now on Remicade, 10 mgs. of Prednisone, Imuran, in addition to

Potassium, and an antibiotic for an infection that developed where I

lost my finger. While it sounds as if things are still bad, it is

all relative and all good.

I have to tell you that life as I knew it has totally changed. I

don't care about the minor things any longer and enjoy the smallest

of things, like watching the wind whip through trees. I don't know

if I ever stopped to appreciate those things before.

I am still a 'student' of Stanford. I see a doctor, or two, or three

every week. Hopefully those visits will taper off soon, but I am

just grateful to have them care for me. Who knows how this would

have ended up otherwise.

I do hope that you are doing well, Jeff. I do feel as if we are

friends, even though we have never met. I need to to know that when

I start getting down, I think of what you have taught me. Thanks for

that.

Happy Halloween,

Elaine

PG/RA/and now OA

> >

> > Ah, my dear Jeff -- thanks so much for your kind sentiments.

Truly,

> > while we have never met, you have been my support through this

all.

> > You encouraged me along the way and assured me to just hang

tough.

> > You have been honest and compassionate, and I thank you for it

all.

> > Hopefully, I will have all of this behind me soon, but we shall

see.

> > Either way, I now have the strength to get through it, and I do

all

> > that I can to help others now, as you have done for me.

> > Love,

> > Elaine

> > PG/RA/OA

> >

> > P.S.-How is the job search going? I hope that you are getting

some

> > hits out there.

>

[Guest guest]

hi elaine,

you are one wonderful and special lady. you wrote this post to me

and keep me updated. you know i will always be here for you, thru

thick and thin. you know you are not out of the woods yet, but you

certainly are on the right track. this thing is finally under

control. now you have to work on keeping it that way. and i have to

agree, this whole cd/pg thing changed my life too. i can appreciate

things now that i simply ignored before.

job, well, lots of things have changed. after 1 year and 3 months of

not being able to fine a direct hire engineering job, i am phasing

out of that and picking up on my first career.....teaching. i taught

for 13 years, probably should have never left, but times change.

i am onboard with 2 temp agencies and a couple of other school

districts to substitute teach. i got my first assignment at a public

charter school tomorrow. the assignment runs thru monday. i have 2

charter schools and 2 public school districts and the local RESA

career center that i am on call for now. so i am looking forward to

tomorrow morning, k-10 music, lol. i can't hold any notes on my own,

thank God i don't have to either.

i also decided if i am going to do this, i am going to want to be

needed in a critical teacher shortage area. so i decided to apply

for the graduate programs at univ of mich-flint for master of arts in

education, special education, learning disabilities. i have a

masters of arts in education already, its the endorsement i want to

get added to my teaching certificate i am after. and it will be a k-

12 endorsement also.

so many changes and i am simply thrilled by them. i hope to be very

busy soon.

still without health insurance. that concerns me. i got my last

remicade due to underinsured with help from remistart and patient

access network foundation. i should be getting their reimbursements

any day now. for my infusion next week, the drug is being given to

me by centocor. i had to apply to them for patient assistance and

got approved. so the docs office orders the remicade directly in my

name and it is sent to the hospital with my name on it. the hospital

is now offering a 20% discount on balances due if paid in 21 days.

so i can basically cover the majority of the costs for the infusion

center by taking advantage of the 20% discount from the last

infusion. that was nice the first time getting reimbursed and me

paying the bill, the 20% adds up to over $300. in the future, it

won't work quite that way however. i will get the 20% discount only

on the infusion center costs, but at their regular higher rate, no

health insurance company discount rate. i spent hours on this stuff,

applying and getting approved. what a nightmare! i had to do it and

i had the time, but no normal person should ever have to go thru all

this hassle. the system is way too difficult.

well you continue to get better, and always know that i am thinking

about you. you keep me posted now, ok?

love,

jeff,

pg,

cd

>

> Hi Jeff,

> I hope that you are doing well. Thanks, as always, for your

> kindness, knowledge, and support. I have been crossing my fingers

> that you have found a job, so I certainly hope that is the case for

> you. Let me know.

> I wanted to let you know that I just hit my 2-year anniversary with

> this bout of PG. My leg is finally almost healed except for a

small

> patch, which is about 3 " x3 " . That is not too bad considering that

my

> entire calf was 'eaten up.'

> I am now on Remicade, 10 mgs. of Prednisone, Imuran, in addition to

> Potassium, and an antibiotic for an infection that developed where

I

> lost my finger. While it sounds as if things are still bad, it is

> all relative and all good.

> I have to tell you that life as I knew it has totally changed. I

> don't care about the minor things any longer and enjoy the smallest

> of things, like watching the wind whip through trees. I don't know

> if I ever stopped to appreciate those things before.

> I am still a 'student' of Stanford. I see a doctor, or two, or

three

> every week. Hopefully those visits will taper off soon, but I am

> just grateful to have them care for me. Who knows how this would

> have ended up otherwise.

> I do hope that you are doing well, Jeff. I do feel as if we are

> friends, even though we have never met. I need to to know that

when

> I start getting down, I think of what you have taught me. Thanks

for

> that.

> Happy Halloween,

> Elaine

> PG/RA/and now OA