My blog

Vera,
I thought Johnny Cash issued a denial that he has Shydrager and instead
claims to have some other type of chronic illness. Is he now saying he has
Shydrager?
Jerry C.

First off I want to ask if I have breeched an ettiquete by replying to each
and everyone of the e-mails separately. I do not know if I take one reply
from my question or story and supply all of the info of the others I have
read and combine them into that one. Please someone tell me if I have did it
right or if I need to combine them all next time.
Now about the tape. When I was finally diagnosed and started my journeys
into the hospital they could use any type of tape on me that they had. Over
the years I have became sensitive to tape. Now I know that you can all of a
sudden acquire an allergy, so that is not the question. My question is does
anyone know a tape that is hypoallergenic? The nurses and IV teams give me
choices of tapes that are sensitive, but they all make me break down. When I
have a line inserted they cant even use Tegaderm because I am allergic to it.
It is really cute having to change the dressing everyday because they are
afraid of infection.
If anyone has a suggestion I would appreciate it.
Sincerely, Alicia

Dear Ann,
How great that you found someone who was supportive of your information and
did the necessary things. Hope Al is much better by now.
Mary S.

hi,
it is so nice that you asked. I have been eading the poss. But I went to
Canada o each for a couple of days ans the to Dalas with my husband for him
to work at a business show where he displays and hopefully sells his
promoional products.
Ate too much good food tere and got sick. So now I amback home having a bad
attack. although whe i read what the rest of you go through i have to
consider myself lucky because i am not near as sick as some of you are.
excuse my typing but i fell in prague and ore endons in my hand and i is in
a brace
hope you are having a well period
lynnear

Sorry I irked you.. but if you had read the post rather than just scanning
it, you would have seen that I was just trying to point out the very thing
you said !
This is a site to help.. not hurt anyone. But we are not the only people in
the world who have problems and understanding is a whole lot better than
judging.
Aloha,Rich

[INLINE]

Pam,

We've been saying on the list that liquids help for over two years. Nice to know that we are right.

Take care, Bill and Charlotte

=======================================

In a message dated 1/27/01 8:23:53 PM Eastern Standard Time,
Tweeter1001@... writes:

told me they didnt get to do the procedure because I knoced one of the
nurses
out cold.

This is a bit rare but not so that it was given a name. I think it was called
"combative anesthesia." It was more common with ether. When I had my tonsils
removed in 1949, I did the same thing. But then they just got another nurse
and redid the ether. While I was very young I remember the incident and I
know my parents were billed for two applications of the ether. Anyway I got a
bit of a laugh from your story.
Poncho

I don't want to be unduely insensitive to alcoholics and junkies.
They do have a condition that needs treating. However, they volunteer
for their condition by choosing to begin using their drug. That is
different from someone who suffers from a congenital condition or a
disease caused by circumstances not at all within their control. I
deal with alcoholics and junkies every day. They make selfish choices
which impact the lives of others in negative ways, and few of them
care. They care only for feeding their habit. Resources are made
available, including support through ssi. They are less worthy of
such care than those on this list who are denied care for a disease
they did not elect to begin.
It is grand to be kind, generous and sensitive. However, most of the
habitual drug users I know (and I know most of those who live in my
county) take that kindness and generosity as an invitation to exploit
and take more and more. They should not be denied care, but neither
should they be granted care in the place of others in genuine need.
It is wrong for good people to be denied care and a dignified life no
matter what the cause of their disability. Some on this list are so
denied, and that is an injustice.
Mike Lockridge

Dearest Shirley,
We are here for you! I am so sorry you are feeling pain. (I am too) And
that you have been disappointed from your hopeful surgery. It is interesting
however that you have pancreatitis pain and no pancreas..... Maybe it might
go away???? Anyway, you are a wonderful person and we want you to be with us
either in pain or not. (Did that make sense?) I'm on powerful pain meds.
Love you and God bless,
Staci

Anna and Linda,
My Endocrinologist prescribed an antidepressant as well. He says that
depression goes along with 1) a long term serious illness and 2) any illness
that involves sugar ups and downs.
I hope this info. helps....
Staci

Very interesting about the stem cells being taken from bone marrow. I would
think this would be quite an advancement as it would certainly be much less
controversial than that of embryonic stem cells!
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633
Hello All,
Thought this might be of interest to some of you.
God Bless,
Jim Stark

Hello All,

Thought this might be of interest to some of you.

God Bless,

Jim Stark

Parkinsonism Relat. Disord.
2001 Jul;7(3):253-256
Biochemical changes in multiple system atrophy detected with positron
emission
tomography.
Gilman S.
Department of Neurology, University of Michigan Health System, 1500 E.
Medical
Center Drive/1914TC, 48109-0316, Ann Arbor, MI, USA
Multiple system atrophy (MSA) is a sporadic neurodegenerative disorder
manifested by parkinsonism and dysfunction of autonomic, cerebellar,
urinary,
and pyramidal systems. The most frequent presentation is with a
combination of
parkinsonism and autonomic dysfunction, but cerebellar ataxia with
autonomic
failure occurs frequently as well. Striatonigral degeneration (SND) and
sporadic
olivopontocerebellar atrophy (sOPCA) can progress to include autonomic
failure
and thus may be forms of MSA, but it is not known whether all such cases
progress to MSA. Utilizing positron emission tomography (PET) with
various
ligands, my colleagues and I have investigated the biochemical changes
in sOPCA
and MSA to understand the relationship between these disorders. An
initial study
revealed decreased local cerebral metabolic rates for glucose in the
brainstem,
cerebellum, putamen, thalamus and cerebral cortex in both MSA and sOPCA,
suggesting that many sOPCA patients would evolve to develop MSA. Later
studies
confirmed this by demonstrating decreased monoaminergic nigrostriatal
terminals
in both sOPCA and MSA patients. The studies suggest that the ligand used
might
be helpful in determining the risk that an individual patient with sOPCA
will
progress to develop MSA. An investigation of the course of sOPCA
patients
observed clinically over several years revealed that approximately
one-fourth of
them progress to MSA within five years. Studies of gamma-aminobutyric
acid type
A/benzodiazepine neurotransmitter receptors revealed that these sites
are
largely preserved in sOPCA and MSA, indicating that symptomatic
pharmacological
therapy may be possible in these disorders.
PMID: 11331195 [PubMed - as supplied by publisher]

In a message dated 1/27/01 7:12:50 PM Central Standard Time,
BravDave63@... writes:

since then) I've been on methadone for the pain since Oct. and my life has
almost returned to normal thanks to this blessed drug.

hi dave! so good to hear from you - and to hear that you are doing so well.
how do you take the methadone and how often? i'm curious. your friend,
debbie (ark)

See also: http://www.shy-drager.com/reports.htm#priority
Regards,
Pam
---
Parkinsonism Relat. Disord.
2001 Jul;7(3):257-260
Multiple system atrophy: new developments in pathophysiology and
therapy.
Robertson D, Shannon JR, Jordan J, Davis TL, Diedrich A, Jacob G,
Garland E,
Tellioglu T, Biaggioni I.
NPF Nathan Blaser Shy-Drager Research Program, Autonomic Dysfunction
Center,
Departments of Medicine, Pharmacology, Neurology, and Psychiatry,
Vanderbilt
University, 37232-2197, Nashville, TN, USA
There have been substantial advances in the last five years in
understanding the
basic and clinical pathophysiology underlying multiple system atrophy
(MSA).
Identification of glial cytoplasmic inclusions has been the most
important
organizing principle for further elucidation of underlying mechanisms.
Recently,
several unexpected developments at the clinical level have been
reported. In
this article, we will focus on two of these: (1) the recognition that
substantial autonomic function is retained in MSA but not modulated
appropriately, and (2) a potent pressor effect from ingestion of water,
which
cannot be explained by currently understood physiologic and
pathophysiologic
mechanisms. In some patients, water has elicited a 50% increase in blood
pressure and been more therapeutically effective than any available
pressor
drug. By careful coordination of the pressor effect of water and the
depressor
effect of carbohydrate-rich food, many patients with MSA can now have
their
blood pressure controlled without pharmacological intervention.
PMID: 11331196 [PubMed - as supplied by publisher]
---

The first link is a brief article talking about some specific research.
The second link is the full text article about that same research.
http://www.craniospinal.net/netpages/physicians/parkvsmsa.html
http://jnnp.bmjjournals.com/cgi/content/full/68/4/434

In a message dated 1/27/01 2:17:43 PM Central Standard Time,
bluesuede3@... writes:

Thanks Debbie for the info!
Jim (PA)
you are welcome. hope it and the information someone else had given
regarding this was helpful to you. let us know how things are going for you.
your friend, debbie (ark)

Hi Cindy,
I'm not sure what you mean by "supporting the website". Do you mean our ONLINE

Thanks for sharing Alicia I bet they listen the next time.. this made
me laugh thanks...
your pal Anna

Thank you for that insight. I believe I may have said that in regard to my
trying to get help. ANY help. I have no money for my meds this month, I'm
diabetic as well. I have not a dime for food. I clear $220 month after hosp
ins. deduction. can't work. The state is garnishing my check 25% for a
repayment from 1996 emergency help. when I was near death and hospitalized,
no income, and I can't even remember if I got food stamps for a month. My
income was $5000. that year. I can't get Medicaid in this state, The IRS took
my refund, and I have been trying to get SS for the last 4 months and a
medical card. I am against the wall now. I have been on a fed disability
since 1996 because of Hyperlippidemia, severe Now I am insulin diabetic, with
as many shots a day to regulate glucose as needed. and no money for test
strips or insulin or syringes. Maybe some of you remember me for APHEURISIS
treatments < I was a member of early group. I suddenly lost my 48 yr. old
sister and the trauma just spiraled me downward. I am now trying to pull out
of it and return to the "living".I believe I said that alkies and druggies
get SS. I did not mean that they didn't deserve it. I meant that my pain is
as great although may not be as obvious or as understandable to others.
Therefore I am not getting any help. My medical records are exact and yet, I
fail to succeed. I never ever meant this as a disparaging comment. please
accept my utmost embarrassment and I apologize if I hurt anyone. I feel so
awful about this. I would post this but can't manage to do this on this new
site. will you please do it for me? thanks Paula

Pam,
The wide range of this research shows how important it is to understand the
whole problem. The research projects attack the problem from stem cells, to
medicines, to how the medicines work, to deep brain stimulation. Yet in the
USA some politicians want to cut the most promising phase of that research.
It is amazing to me that politicians who say they are Pro-Life can ignore the
suffering of over a million people and not help them (and their caregivers).
At the same time they argue over the question of a stem cell (which will be
destroyed in any case) being a human, but ignore the fact that in theory a
blood cell could be altered to be a human also. :o) Jurassic Park III :o)
I'm glad Canada is paying more attention to Parkinson's - we seem to put all
our attention and money into AIDS.
Take care, Bill and Charlotte

Christine.
rThanks you are wonderful you really are...Who do you see again at U of
M? and you sound like you are being reasonable, I know the feeling as I told
Jim they tell me to give it time.. I think I get the maddest at that cuz its
like give it time it has been 9 mo and my counts aren't normal yet and I have
pain... lol
as far as my brother he just feels like the doctors aren't doing enough for
me he feels I should be better by now .. I wish he was right but I am so
different then he was I guess and hard for him to understand I gave him this
site to read some of the post so that he could see I am not the only one that
is having all these problems...
Now the antidepressandt is helping me sleep at night but I feel so depressed
again and that isn't like me till the disease anyways. I was a happy go lucky
person.. and with the paxil pretty much stayed positive and keep the happy
face... but with this one I don't feel it and the doctor again tells me give
it time... time I guess so it is all I have right....lol so I don't know what
to do.. there is alot going on in my life with this disease and then not
having my personal life at all.. I don't leave the house but to go to the
doctors lately and haven't really seen anyone I get all kinds of phone calls
but you know you just need the loving caring hug sometimes.... oh god enough
of that I am getting all teared up... sorry for rambling.. hope you are
feeling better...and thanks again...
Hugs and kisses
your pancreatis pal Anna from Michigan

Nancy,
The sensitivity to light is normal for MSA and wearing sunglasses helps
Charlotte. There is info on one of the PD sites about blue tinted lenses
helping. The doctor is the best one to contact about the one eye vs. both
eyes.
In general I've read that it is best to take the smallest amount of Sinemet
that can hold down the symptoms. The more Sinemet you take, the less it
seems to help in our experience. Too much Sinemet can cause dyskinesia and
hallucinations. I have also seen a limit of 1000 mg of levodopa and 200 mg
of carbadopa - but that is evidently not followed closely, so I am not sure.
Charlotte is presently close to the limit on the L-dopa and at the limit on
the carbadopa.
I don't know about the taste. Charlotte complained about the taste of some
of her pills when she was taking them bu mouth. Are you taking anything for
acid reflux - that can cause horrible tastes in your mouth.
Take care, Bill and Charlotte

Jim,
I just wanted to say I am sorry that I can't help you with this .. and
sorry that you are going threw so much you are not alone.. I feel the same
way and couldn't say it better... I want my life back too.. and then have
the doctor tell me it takes time I have to be patient but I can go back to
work on the 5th.. doesn't make since to me.. but off I will go as I am
told... hang in there my friend..you are not alone...
Hugs and kisses
your pancreatis pal Anna from Michigan

http://www.parkinson.ca/research/recipients.html

why is one eye tw itchiing?
package insert says blepharospasm can be excesss of sinemet.
dyskinesias can be excesss of sin.
merck says blepharospasms can be dystonia
m.d. said dystonia can be too little sinemet.
also ey es s eeem s e nsitive to l ight and
mouth tastes of med or like metal. yuk.
will call dr mon but any advice?
tx nancy spires

Hi all,
Frank and Maddy from the Boston area were in the Washington area this
weekend visiting their daughter's Family. While we did not get the
message out early, we still had a group get together at the C & O Canal
Historical site (Great Falls of the Potomac - Maryland side). We got
there just in time to watch them take a barge into a lock and raise it
to the next level. It was nice of them to stage the event just at the
time we got there and they were all dressed in the 1800's garb.
It was a good chat session with
Frank, Maddy and their daughter
John and Terri Moller
Charlotte and I
Our daughter Rhonda and 11 year old grandson
Maddy has most of the same problems as Charlotte, but there are the
typical MSA differences. John is having movement problems, but is able
to stand on his own with difficulty. Sorry that we did not have more
time to set up a full fledged meeting.
Take care, Bill and Charlotte

Thanks Tull for the reply, How is Karyn doing? sure do miss her.. you don't
know how much you helped
Hugs and kisses
your pancreatis pal Anna from Michigan

My cousin just sent this to me and I thought it was cute.
Bill and Charlotte
===========================
You have just received the Amish Virus.
Since we don't use electricity and we don't have any computers or
programming experience, this virus works on the honor system. Please
delete all files from your hard drive and then manually forward this
virus to everyone on your mailing list.
Thank you for your cooperation and God bless you.
The Amish Computer Engineering Department.

The last time I was hospitalized I had a procedure done. I am not sure of
the name, but it was a scope like an ERCP, but they used an ultrasound on the
end to see inside the pancreas.
Anyway, I told them before they did the procedure not to use Versed because
I do strange things under it. They of course being Docs and
anesthesiologists and nurses of course know it all and decided to use it
anyway. I told them when I had the port-o-cath placed they had a hard time
keeping the IV in me, i kept pulling it out because I was under Versed
instead of all the way under, but they didnt listen.
I woke up after the procedure and asked what happened, how did it go. They
told me they didnt get to do the procedure because I knoced one of the nurses
out cold. They put me under Versed like I told them not to and when they
started to put the scope in I apparently freaked out and hit her so hard she
was out for about 7-10 minutes. Needless to say I was put completely under
the next day and the procedure comminsed. They did not have the problem
again.
I thought it was funny when it happened and I think it is much funnier now.
It just goes to show what some of us have been saying, we know more than the
Docs and nurses do.
Thanks for reading this,
Sincerely, Alicia

Thanks Staci...............Lots of Hugs, Linda

...at http://home.inforamp.net/~pbower/msachat.htm
Perry Sennewald 804-244-0018

Hi group,
Al had surgery last week and the Dr. that gave the anesthetic got info
from the Internet and met with us before the surgery and I took info that
I had.
He had us come in two hours earlier that he was scheduled to come so that
he could start giving him fluid by IV.
He also came in to see us before they took him to surgery and said that
he had a wedge to elevate his head 6 in.
I found out his full name and address, if we have to have surgery again I
can request that he be the one.
Ann from Soddy, TN

Dear Barbara,
How very sorry I am to hear about your beloved Ken. You have shared so many
ups and downs with all of us going through this terrible illness. Thank you
for being there for us and your family is in our prayers.
Jeanie

I also heard that it is not good to have high levels of pan enzymes in the
blood for long periods of time. Does anyone know what can result from that.
tom

Shirley , I read much more than I ever post here. Sorry to hear about your
pain. I pray for you that in time, even if it takes a while, your body will
eventually adjust following surgery and you will not have this pain any more.
tom

Dear Shirley

You have been going through hell, and it's a hell no one should ever go through alone. Reading your story brings tears to my eyes and makes me realize how lucky I am in that I do get occasion reprieves from the pain of this disease. And that I do not have it severe enough to require surgery.

I can understand how dissapointed you are. Back when I was 17 I had 3 surgeries on my abdomen to remove mysterious adhesions. I was having severe daily pain that was causing me not to eat and had all the doctors thinking I was anorexic. All 3 of these surgeries were supposed to cure me of my pain. They didn't. It wasn't until they finally removed one of my ovaries that the pain went away, but until then I went through the same thing you are going through.

Please, never feel you are being a crybaby, or complaining too much on this list. You have every right in the world to complain, and to feel awful. If I were you, I think I would be a heck of a lot worse. And I would be complaining a hell of a lot more than you ever have! Heck, I already do complain a lot more than you ever have and I have gone through nothing compared to you!!

I wish I knew something to say to make you feel better, or a magic wand that I could just wave and remove all your problems. I wished for that when my mom was dying of cancer last year too. But i don't.

All I can do is let you know that you are in my thoughts, and you have my support and friendship anytime you need it.

Hugs

Shana

Thanks Debbie for the info!

Jim (PA)

Linda,
My, when it rains, it pours! I will be holding you in my thoughts and
prayers today. Try to rely on God and some good friends ( like us!) and
things will lighten up for you.
Hugs to you,
Staci

Dearest Becky,
Thanks for your well wishes. Actually, yesterday at the end of school, I
felt a twinge of pain, and today I woke up with much more pain. I missed a
rehearsal I promised to attend. I hate that! I have a question for
you....When you are in pain, do you go into the hospital immediately or do
you wait it out? I heard that it is dangerous to have high levels of enzymes
in your body, and the hospital is the only place where I can get blood test
results in an hour. I am taking very strong pain meds. that help (although I
feel woozy) and am on a clear liquid diet. My problem is that I do not have
time to be in the hospital. I lead church choirs on Sunday and there is no
one to take over for me.
I am so tired of all these dilemmas.
I hope you are well today.
Love, Staci
P.S. No blackouts down here in Southern California! Yet....

Hi all,
I thought and thought about ignoring this latest "offense" and
decided to go ahead and say something. Someone said something
about 'alkies and druggies" to which someone else took offense.
If we are all here to help each other and we don't want to judge
others if we haven't walked in their shoes (I am assuming the alkies
and druggies), then why, oh why can't we apply that to others in this
group?
I mean, the one who said itoriginally-we have no idea where he or she
has walked and decided on that view as his or her own. Nor do we
know what kind of day he or she has had or what kind of pain he or
she is dealing with.................
Get my point? I know it doesn't happen very often, but gosh you
guys, we are all in this together and should uphold each other at
every opportunity, not take offense at an opinion.
I guess I just needed to vent at that. I hope you are all doing well
today..
Be well,
Christine

Hi again,
I forgot to say something earlier. You said you were not wanting to
tell us about your pain, etc. Don't, please don't forget that we are
here for you. You don't have to be the one at the top of the
mountain guarding against all invaders. We are not only willing to
fend off the monsters, we are more than capable. We cannot do
anything for the pain, but please don't shut us out of your life.
Thank you for finally sharing what you are going through. We want,
and need to know those things as well as the positive things. what
kind of friends would we be if we bailed at the first sign of trouble?
We care about you a lot Shirl, and we need you!
Rest well and remember, it all takes time.
Love you,
Christine

In a message dated 1/26/01 6:58:07 PM Eastern Standard Time,
shana@... writes:

I'm sorry if I got off topic and rambled, like I usually do.

Shana, don't worry about your posts, we all do that sometimes. Sounds like
you have been under a lot of stress lately so I remind you that stress can
trigger a Panc. attack so try to take it easy. Remember, "first things
first," and try to always have a "plan in mind." If you try that it can cut
down on that feeling of being overwhelmed with problems.
I hope it will all come out for the best for you
Poncho

Click here: LISpine - Spinal Cord Stimulation
check this out. debbie (ark)

In a message dated 1/27/01 1:03:48 AM Central Standard Time,
bluesuede3@... writes:

The doctor had mentioned a spinal cord stimulator
for the pain. Has anyone ever tried this?
Hope everyone has a good painfree night (and day tomorrow).
Jim Campbell, PA

hi jim. i have heard of having a 'tens' unit, which i had after a
hysterectomoy years ago. it was a slight electrical impulse that you could
control with a knob and it interfered with the nerves so that you did not
feel the pain as much. i am sure that this would be of the same kind of
nature - to interfere with the pain without medication. i'll bet we can
find out something definate about it on the internet. i'll see what i can
find for you. meantime - - rest and relax. your friend, debbie (ark)

Mike,
Ok I have been out of it a bit but I am not sure what transition we are
talking about could you help me...sorry I guess I am having a blonde
moment...lol
Hugs and kisses
your pancreatis pal Anna from Michigan

Hi Anna,
I am glad you are feeling a teensy weensy :-) bit better, but so
sorry to hear about the antidepressant. the only thing I can say is
that we can't live with meds, but we can't live without them either.
It sucks, to use today's venacular! I hope the doc can help you with
your pain. I am so sorry to hear your brother is giving you a bit of
a hard time. Is he saying that maybe if you would buck up it
wouldn't be so bad? That's kinda what I heard in your post. I mean,
lucky him that he can eat and all. It's just not the same for all of
us, is it? And unfair? Definitely! But I guess I just got to the
place where I don't ask, why me? I just ask why not me? I mean,
there are a lot of things out there that are unfair. Like the
parents who lose their precious child. Or losing a limb. Or having
cancer. So I just try to focus on the positive and I find I don't
get sucked into that Unfair game. Because the unfair game just isn't
played fair!!! :-)
Enough of my ramble.....I truly hope your docs can help you get to
feeling more like yourself.
Thanks for the update on Tam. I truly hope she can get something for
the depression. Does she seem to be doing better? We all know the
physical side of this thing is not the only side we need to deal with.
I had a really hard day yesterday with nausea. I woke up in the
middle of the night sick and stayed sick the whole day. Yuck! My
doc at U of M keeps throwing me curve balls though, and I am going to
call her office next week and address it.....she told me the other
day that maybe I am just taking things too fast

Hi Jim, I'm Rich.
Regarding the spinal stimulator, I know a lady (very good friend) who had one
for her hand. The pack they put in has to be changed every two years,
infection is a major concern and it hasn't done her much good. It sounds
good,but please be careful. Plus once they put it in you have to have it
replaced every two years (or did I just say that). Anyway, it is serious
surgery and unless you have good insurance, it can add up over time. The
other problem is that the wires can move around, get twisted and generally
screw up. Not to mention the scar tissue that builds up around them, now
that's fine, and then they have to move it.
I don't know if this is what they are recommending to you but these are some
of the questions you might want to ask them about.
Hope this is helpfull, if not please just ignore it. Just trying to help.
Aloha, Rich

Hi all,
I'm Jim and my wife Lorrie usually types any messages as I'm not that
fast at typing. Just wanted to tell everyone I can definitely relate
to you all. I read the posts alot as I am off work now on long term
disabiltiy. I WANT MY LIFE BACK! Every day seems like such a blur.
The pain meds make me sleep ALOT. Lorrie has said she'd love to be
able to stay home with the kids and she feels like she's missing alot
with them (she works 3 days a week but 10-12 hour days. Actually I'm
here but I feel like I'm NOT here if that makes any sense. Tonight
Lorrie took our 3 kids to swim at the YMCA (family night) and they
(the kids especially) begged me to go. I wanted to so bad but that
pain in my left side is pretty bad today. So I went to sleep (or
tried to). At least when I sleep I don't feel any pain. I went to
Cleveland Clinic earlier this week for my 3rd radiofrequency but the
doctor decided that another nerve block would be better for helping
to alleviate the pain. Well, after the procedure I was in SO much
pain (more pain than when I went there). For us Ohio is a 2 hour
drive. The doctor gave me demerol and I had my Duragesic patch to
put on and my percocet so I took it. I'm trying to have a positive
outlook on this all but it is so hard. The doctor said that the
block may take longer to work because he used phenol instead of
alcohol (which has a more immediate effect to the pain). I'm hoping
that tomorrow I'll wake up and boom!!!! the pain will at least
subside a little to where I can take my kids sledriding. Lorrie did
reiki on me 2 nights ago and it was actually gone for a long time and
I had a good nights sleep. We plan to do more tonight or tomorrow.
She's just so tired all the time because she's doing so much around
here just taking care of the kids, laundry, etc. Well, goodnight to
everyone. If I have no relief from this procedure soon I don't know
which way to turn. The doctor had mentioned a spinal cord stimulator
for the pain. Has anyone ever tried this?
Hope everyone has a good painfree night (and day tomorrow).
Jim Campbell, PA

Thanks for the message Carol you seem to know just what to say. I just read
Shirley's post. I feel like I should say something but what do you say? I
just cryed. I'm just so sorry this happened to you Shirley.
Well I finally got threw a couple days of emails I missed. I need to figure
out how to put them in another place. As you can tell I'm not really into
the computer very much, I usually have my husband sit down and try to figure
it out for me, I know thats lazy, but they have always frusterated (sp?) me
:-/ Everyone take care, Teresa (no h)

In a message dated 1/26/01 5:58:13 PM Central Standard Time,
shana@... writes:

I just wanted to share this story with you all. It goes to show, that
there are still good people out there, people who care, and want to help.
Its not every man/woman for themself, as I was starting to think. So never
lose hope. Because someone, somewhere out there is willing to help, and
does care.

that's so good to hear, shana. i always love to hear of the goodness in
people. i am a dog lover too - our bassett hound ellie mae is asleep beside
my husband on the recliner at this very moment. she is like our child and has
been such a comfort to me here at home. sorry you had such a bad day - -
but remember the song from "Annie" - the sun will come out, tomorrow. soon
it will be here. rest well tonight. give all your doggies a kiss. i'll
be thinking about you. debbie (ark)

In a message dated 1/26/01 4:35:29 PM Central Standard Time,
shirlf3542@... writes:

. If I have to take strong
drugs then I will do that. If a nerve block will help I will do that. I
have to do something to get food into my body. I just can't stand to think
that I will have to live on tpn the rest of my life. I have had enough of
that.

shirley i am soooooooo sorry that you are having so much pain. you have gone
through so much already. i am sure that it has been a let down for you
emotionally. and don't worry about scaring someone else off of the
procedure, because everyone is different - so varied we know from all the
posts. some things we share in common - and other things seems to be freaky,
flukes that each of us go through. you will be in my thoughts constantly.
we all have been worrying about you - i don't always repeat someone elses
comments because i hate to say the same thing over and over. but you know
that i care about you and will be praying for you. with love, debbie (ark)

In a message dated 1/26/01 2:50:18 PM Central Standard Time, loggiekw@...
writes:

My daughter's 19th birthday is Monday, so my husband and I are going to
drive down to the town where she goes to college and take her and her
boyfriend out to dinner Saturday. It's 2 1/2 hour drive each way, so that
will take up the whole day Saturday. I'm looking forward to it, though.

Have lots of fun Monday. Take a nap while your husband drives! debbie
(ark)

Hi Everyone, So many angels here

In a message dated 1/26/01 5:35:30 PM Eastern Standard Time,
shirlf3542@... writes:

I am very depressed and sad. I have been crying constantly. I am so sorry
for being a cry baby to you but I went thru so much and have gone thru so
much for so long and now I have to accept my lot.

Hi Shirley,
You are not a cry baby, Shirley...never have been and you never will be. You
have a right to feel all the emotions you are feeling right now. You need to
let out all those emotions you have inside you but please, please remember
it's only been seven weeks since you had major surgery...not once but twice.
I'm sure the others who have had this same surgery did not have the problem
with bleeding which made the surgeon have to go back in the second time. I'm
sure you still have swelling from the surgery in your Pancreas area which, I
think, could possibly cause Pancreatitis pain. Try to give yourself at least
another month and see how things go.
We all need you here and need to know how things are going with you...the
negatives and the positives. We will help you through this as you have
always helped us....we need each other.
As I've said before, we all love you, Shirley, and I'm sure once the healing
is completed inside your body, that pain will go away. Just get plenty of
rest and allow the time needed for you to heal both mentally and physically.
You are and always will be in my daily thoughts and prayers. May God bless
you and give you the strength you need right now.
Shirley, my friend, you can cry on my shoulder anytime. I will always be
here for you if you need me.
Hugs & Prayers
Carole

In a message dated 01/25/2001 11:41:54 PM Eastern Standard Time,
rmntrout@... writes:
<< oh, I wanted to ask one more question. Does anyone else experience
leg pains? It's like a dull ache deep in your legs. It's just
enough to keep you awake if you're not awake from the pancreatic
pain. At first I thought it was just the dehydration, but I notice
it now even when I'm adequately hydrated.
Everyone take care and God Bless!
Danielle (aka, Karen A. from Indiana)
Hi Karen (or Danielle hee hee) I experienced leg pains when I was on
Lipitor, are you by chance taking that drug? If not that one, then maybe it
is a reaction from another. I am now on Zocor and I don't seem to have any
trouble tolerating that one. Just a thought!
Best wishes,
Jul

In a message dated 01/26/2001 7:35:02 PM Eastern Standard Time,
ingallslhitmx4@... writes:
<< Hi Carmen and everyone, I just wondered how they find out if you have a
thyroid problem? Blood Test?
All the doctors I've been to go straight to Alcohol as the cause. I lived
in
Colorado Springs for about 3 yrs. whey back when. Do you live anywhere
around all the action with the 7 fugitives? I used to work at that Holiday
Inn (whey back when). Hope everyone's having a good day! Teresa
Hi teresa,
Just thought I would chime in here. I have had underactive thyroid since I
was six years old and have been on medication for it ever since. They test
my thyroid function with a blood test called TSH. It is a pretty common way
of diagnosing a problem thyroid gland, but I have found that not too many
gp's seem to fully understand it. I would recommend an endocrinologist to
you. They have seemed to be the only ones who really get the picture for me.
However, I was seeing a GI during my acute panc attack and he actually upped
my dosage of synthroid because he had found my levels to be very low. If
they tell you that your levels are fluctuating but not bad enough for meds
and you still feel bad.......GET A SECOND OPINION!!!!!! :) I have been
misdiagnosed many many times over the years. I would tell them that I wasn't
trying to diagnose myself, but after having it for 30 years, I think I know
when it is off and when it isn't. Keep me posted on what you find out and
feel free to email me if I can answer any questions. Btw, what are your
symptoms?
Hugs,
Julie

Hi Carmen and everyone, I just wondered how they find out if you have a
thyroid problem? Blood Test?
All the doctors I've been to go straight to Alcohol as the cause. I lived in
Colorado Springs for about 3 yrs. whey back when. Do you live anywhere
around all the action with the 7 fugitives? I used to work at that Holiday
Inn (whey back when). Hope everyone's having a good day! Teresa

Well, I had a hellish day today. I woke up at 6 AM in withdrawal. I had run out of meds the night before, and missed my 3 PM and 11 PM dose of hydromorph contin (long acting dilaudid)

I don't see my doc uitil Monday, but fortunatly he called the pharmacy and authorized them to give me enough to do me the weekend.

I hate the fact that my body is so dependant on this stuff. It doesn't give me a high or anything, but whenever I try to drop below 2 pills a day, I go into withdrawal. I get the shakes, severe sweating, nausea, uncontrollable sneezing, that jittery feeling like my insides are crawling-the works. And I HATE it! I feel like I am a junkie. I HATE knowing that I am addicted to this stuff and there is nothing I can do about it, because if I don't take it I will end up in severe pain. I feel like I have no control over some issues of my life because of this stupid disease. And to be 100% honest, even if I didn't have pain, I think now that I would be too scared of the withdrawal symptoms to try to stop.

I feel stuck. I wonder if the paramedics course will even accept me when I apply this fall, if they know I am on chronic opiod therapy (it sounds much better in technical medical terms)

Oh well.

Moving on, I think my dogs are out to give me a nervous breakdown. Today when I fed my big dogs, my little boy pup, Dakota went and gobbled it all down in like 4 seconds. Then, he starts crying and whining and dry heaving. So when I went to see what was wrong, his little tummy was so distended, and so hard that every time I touched it, he yelped. So there I am thinking that he ate so much he ruptured something, sitting on the floor, crying and saying "Dakota it's ok, don't die Dakota, please don't die!"

All because my puppy ate too much! Am I a neurotic? Yeah, but just a bit!!! And to think the psychologist the pain clinic sent me too said that there was no need for me to see her. Oh, if she could have seen me today!

I have a story about how human kindness and generosity isn't lost.

My big husky Spirit has epilepsy, and had a seizure on the 22nd. When she seizes, she clusters, meaning she has seizures with less than a half hour in between. Not real good for her brain. So to prevent clusters, we give her valium as soon as she stops seizing.

Well, when I went to my vet to re stock the valium, she told me she wasn't going to give me any until I had Spirit's medication levels (phenobarb and potassium bromide) checked. Now medication levels are important, but have nothing to do with valium. Despite the fact that if SPirit had another seizure and we had no valium, she could wind up needing emergency hospitalization. And considering she always seizes between 11 PM and 1 AM, it would be pretty hard to find a vet.

To me it seemed like she was just trying to get more money out of me, money I just don't have right now. (The test is 50$, and if she needed to be hospitalized it would be close to 300$.)

The vet knew I had an appointment scheduled for feb 5th, as she gets her levels checked every 6 months. I explained to them that I had the appointment scheduled, but just didn't have the money right then. Still they wouldn't give us even enough valium for one seizure. And here I was under the misguided illusion that a vet's main interest was the well being of animals.

Anyhow, i wrote about this to the email list I belong to for people with epileptic dogs. And to my surprise, a woman I had never emailed or spoken to before sent me an email offering to pay for whatever was needed, and I didn't have to worry about paying her back!

I was amazed, and at first i refused, but she called me at home, and we had a long chat. She had to have a dog put down once because she just didn't have the money, but know has money to spare, and wanted to help. So she called my v et, and arranged not only to have her medication levels checked, but her thyroid as well. (low thyroid can cause seizures in dogs)

This woman, who I am now becoming very good friends with, single handedly restored my faith in human beings, which I had lost a lot of after being abandoned by my own family.

I just wanted to share this story with you all. It goes to show, that there are still good people out there, people who care, and want to help. Its not every man/woman for themself, as I was starting to think. So never lose hope. Because someone, somewhere out there is willing to help, and does care.

I'm sorry if I got off topic and rambled, like I usually do. I am so glad to have this group of people here who understand, and are willing to let me ramble. :o)

Hugs

Shana

Carole,
thanks for thinking of me. Yes, I am still feeling better. I'm not as perky as
I was the beginning of this week, but I am definitely more rested! I am at work
today and I've only got an hour to go.
My daughter's 19th birthday is Monday, so my husband and I are going to drive
down to the town where she goes to college and take her and her boyfriend out to
dinner Saturday. It's 2 1/2 hour drive each way, so that will take up the whole
day Saturday. I'm looking forward to it, though.
I hope everyone is having a good day.
Take care,
Karen

Thanks Christine, Sorry it's taken awhile to get back to you, I've been
dealing with some dental problems, and have had to have 4 teeth extracted in
the last week and have been layin on my couch as much as possible. I guess
it's at least a change from the stomach pain, it has completely overrided the
CP pain. How are you?
I haven't been keeping up the past few days, I'm trying to get caught up
now, but the kids are off school today, so I get distracted alot! But that's
OK
Hope everyone is having a few laughs this week, it hurts when I laugh, but
I've had a few anyway. Teresa

In a message dated 1/26/01 9:22:32 AM Central Standard Time,
tull@... writes:

Karyn still doesn't have access to a PC, I may bring her into the
office here at work sometime this weekend so she can use one here.
She really misses you all! In the meantime, I've been printing off a
copy of each day's "digest" for her so she can keep up with what's
happening with each of you.
Cheers,
--Tull

be sure and tell karyn how much we all miss her. i am so glad that she has
someone that is willing to contact us on a regular basis and let us know what
is going on. we are all just "hanging around." debbie (ark)

In a message dated 1/26/01 3:58:43 AM Central Standard Time, mrsteep1@...
writes:

Oh and Tammy is out of the hospital She got to go home Sunday I seen her
Tuesday and friend of hers and my brother inlaw is in the hospital and we
both ended up there at the same time she looked pretty good but yet I know
that that is a front for all of us looking good on the out side and feeling
like shit on the inside.. we had talked Monday night on the phone she is a
good person I am lucky to have her too... she is still very depressed and
we
all know that feeling..but our talks help both of us..ok I rambled long
enought so take care my friend and keep me up on what is going on with
you...
Hugs and kisses
your pancreatis pal Anna from Michigan

that's great! has anyone heard from crystal????? she was to have a procedure
done on the 18th - the nerve deal and i haven't heard from her or her
husband. she lives in quincy, ill.
debbie (ark)

In a message dated 1/25/01 10:41:50 PM Central Standard Time,
rmntrout@... writes:

oh, I wanted to ask one more question. Does anyone else experience
leg pains? It's like a dull ache deep in your legs. It's just
enough to keep you awake if you're not awake from the pancreatic
pain. At first I thought it was just the dehydration, but I notice
it now even when I'm adequately hydrated.

i've had this problem - especially at night and usually taking a couple or
three over the counter potassium pills helps. we lose so much of it
w/diarrhea and vomiting etc;. can also make you perspire really bad if it is
low.
debbie (ark)

Good idea, Mike. I agree it's kind of pain. MOstly I wish they
would
have sent out some kind of "warning" message they were going to do

Hi Anna, all,
Karyn also was on Remeron for a while. I think her doctor actually
chose it initially BECAUSE it is one of the anti-d's known to help
people with insomnia, a common side-effect of lots of pancreatic
sufferers (and depression as well). Even though she only took it at
night, she too felt "groggy" most of the time, which is why they
eventually switched her to another (prozac in the morning,
amitryptiline at night). I seem to remember from reading the package
insert that one of the "risks" of the medication that patients needed
to be alert for was something called agranulocytosis, whose symptoms
include flu-like symtpoms like fever, chills, sore throat, and other
symptoms associated with infection. If that's what's going on with
you, you probably need to call your doctor and let him/her know so
that can be checked out.
As far as your other symptom (gas), that seems to be a common problem
with panc. sufferers, but I've not heard of it ever being linked to
an anti-d med. such as remeron. It's usually more associated with
malabsorption, and can sometimes be alleviated but adjusting the
doseage of oral pancreatic enzymes (creon, viokase, pancrease, etc).
Of course, the fact that you have just gone through gall bladder
surgery may also be playing a role in your digestion/absorption ...
or lack thereof.
And if all else fails, lay off the beans for a while! *lol*
Cheers,
--Tull

Not the hardest thing to do, but not easy. We will have to watch for
people falling out and help them through. Kind of a pain. Not a good
thing to do to people who need this group as a lifeline. I recommend
everyone post a message like this so we all have some idea who might
be having trouble with the transition.
Mike Lockridge

Karen,
I have had bouts of leg pain you describe in the lower legs below the knee.
Where is your pain.
Tom

--- In pancreatitis@y..., "Karen A. from Indiana " <rmntrout@p...
wrote:
Does anyone else experience
Hello "member-formally-known-as-Karen-A-from-Indiana-aka-Danielle" :-)
re: leg pains. Karyn experienced this somewhat due to edema
(swelling) from severe fluid retention. I don't think she ever
really
started complaining about it until there was pretty noticeable
swelling, though ("pitting" edema, where you can press your thumb
into
the flesh in your leg, and the indentation stays there for quite some
time. That was when they started her on diuretics, and experienced
some complications/side-effects from those medications (it seemed to
exacerbate the pancreatitis itself at first, until her system
adjusted
to it; then it depleted her potassium to dangerously low levels; then
they added a "potassium-sparing" diuretic", which we think is what
was
primarily responsible for the constant nausea she went through
recently. BTW, that seems to be getting better at this point).
Jang recently posted a response from a doctor talking about the link
between pain meds in general, and fentanyl in particular (Duragesic),
with edema/swelling.
I'm not suffering from pancreatitis, but I also experienced the
symptoms you describe of "deep pain/ache" in my leg about a year ago.
When I went to my doctor to have it checked out, I was diagnosed with
"deep vein thrombosis", or a blood clot in my lower leg. I had to
give myself heparin injections for about 10 days, and then was on
coumadin for about 6 months. Of course, the clot was only in one
leg,
so all the pain was in just that one leg. They do "doppler
ultrasound" to diagnose it - totally painless!
Karyn still doesn't have access to a PC, I may bring her into the
office here at work sometime this weekend so she can use one here.
She really misses you all! In the meantime, I've been printing off a
copy of each day's "digest" for her so she can keep up with what's
happening with each of you.
Cheers,
--Tull

In a message dated 1/26/01 2:38:27 AM Eastern Standard Time, ichardj@...
writes:

I haven't posted for a while as it has been a bad time for me lately(much
pain, no fun!)

Hi Rich,
I'm sorry you are having bad days with your pain and hope you feel better
real soon.
That's what is so unique about this group....we don't judge anyone and you're
absolutely right about having to walk a mile in someone's shoes to really
understand. We are all allowed to say whatever we feel on this board and I'm
sure what was said wasn't meant to be hurtful in any way to others.
Rich, I hope you feel better soon and can go out and soak up that beautiful
sun there. My husband and I go to the coast as often as we can and rent a
place on the oceanfront because the ocean sound has such a calming effect on
me...better than any tranquilizer! :) I will keep you in my prayers for
brighter days!
Hugs & Prayers
Carole

Rich, I'm sorry for anything negative I may have said to upset you.
You are so right about not judging people. I know for a fact a few
people who are on disability for the reasons that were stated, but I
also know a few who are on it for other reasons. And besides, I would
not want to "walk a mile in" anyone shoes who has these problems.
They had to do that first drug, take that first drink themselves, and
I didn't have anything "self-distructive" to do with my illness. My
husband is a "Alkie" as you put it, but he works every day, he pays
the bills, he feeds us. Some people just take advantage of the
system when they know it is possible. Just my opinion, but Please
accept my apology. I'll try to keep my opinion to myself for now
on. I hope you are feeling better.
Linda

Dear Christine,
Hello my dear friend,, I haven't hear a thing from Shirley or Elizabeth I
am a bit worried,, I wish at times I had everyones number so that I could
call I tried to call Henry today and had to leave a message he is either out
or feeling bad still and not answering so I leave email and hope I hear from
him soon you are so right we all add to the group as a chain and when one is
missing our chain is broke.. I love this group and everyone in it...
I go to the surgeon today so I hope to find out if there is anything he can
do to help from here so I will let you know.. I do know this pain is a little
bit easier to handle then the other but should anyone have to live everyday
with pain? I just find this all so unfair, it takes away from my life as a
normal one and that I hate.. they changed my antidepressandts and I sleep now
but I feel more depressed so I don't know which is better??? another question
for the books... I am getting sick of this disease and I haven't had it as
long as others..
Oh and Tammy is out of the hospital She got to go home Sunday I seen her
Tuesday and friend of hers and my brother inlaw is in the hospital and we
both ended up there at the same time she looked pretty good but yet I know
that that is a front for all of us looking good on the out side and feeling
like shit on the inside.. we had talked Monday night on the phone she is a
good person I am lucky to have her too... she is still very depressed and we
all know that feeling..but our talks help both of us..ok I rambled long
enought so take care my friend and keep me up on what is going on with you...
Hugs and kisses
your pancreatis pal Anna from Michigan

Hi everybody,
I haven't posted for a while as it has been a bad time for me lately(much
pain, no fun!).I hope everyone is doing as well as can be expected and having
good days!!!
I finally got to read some of the posts and one thing really irked me. I know
it is tough to get SSI to realise how dibilitated and disabled are condition
can be,but,
let's not get into a bitching(sorry) match about this. "Alkies and drugies"
didn't decide to be that way either - sure they might have caused their
condition, but, who are we to judge?and do you know for a fact that they
actually get SSI because because they are 'Aor D's' or because of some
contributing factors we don't know about? Or because they get it because of
being A's or D's? I don't know.
I do know 'that until you have walked a mile in their shoes' I,for one, will
not judge them, no matter their condition is.
I know how frustrating it is to try for SSI ,I tried for 7 yrs before I
finally got it and I have a broken back as well.
To answer your unasked questions, no I have never taken drugs (except
prescribed)
I have never even been tempted - just scared I guess, and yes I did drink
(beer and wine ,good wine, only exceptionally good wine, I love good wine!
but that was then this is now!
Sorry to rant everyone, but I haven't been well and I really believe this is
a supportive site, not a forum to complain about other unfortunative souls.
Let's concentrate on getting the people who need it in our group, on it! How
can I help? I have already spoken to my Congressman ,a while ago, and my
Senators, and keep reminding them!! Maybe soon we'll get through to them.
I hope I didn't upset anyone. If I did,that's the way I feel, tough.
I really love you all, Aloha, Rich.

Hello everyone! This is Karen A. (from Indiana) writing. I know
there's been some confusion since there are so many Karen's,
especially from Indiana. Perhaps it would help if I go by my pen
name (the name I use for the book I'm writing!). The name is
Danielle Mitchell. So from here on out, I'll just go by Danielle.
Hopefully that'll reduce any confusion. I know it's difficult enough
trying to remember whose who!
oh, I wanted to ask one more question. Does anyone else experience
leg pains? It's like a dull ache deep in your legs. It's just
enough to keep you awake if you're not awake from the pancreatic
pain. At first I thought it was just the dehydration, but I notice
it now even when I'm adequately hydrated.
Everyone take care and God Bless!
Danielle (aka, Karen A. from Indiana)

Hi Carmen, I'm going to remember that I already have the
pancreatitis, and I really don't need to add to it by not taking my
synthroid. I honestly didn't know there was a connection, but not at
all suprised. Nothing suprises me anymore the this sickness. Hope
you are doing well.
Lots of Hugs, Linda

I know that my husband has endured so much in taking care of me and
sympathizing with my pain, I know that at times he is fustrated and because
there isn't some miracle at this moment to take this pain from my body he
gets angry, as do I .
My husband will sit in with me and read a few letters, and our spouses and
loved ones that are with us day in and day out know how this illness has
interupted our lives in such a way that everything seems that it has changed.
I see fear in my eyes when I look at myself in the mirror, I wish so hard not
to be like this and I pray that I don't want to go through this today. I am
overwhelmed as well as my husband is. I know that he hurts and has all these
feelings and the best way to for him would be to talk to people that are on
the receiving end of our illness, maybe they would help each other in knowing
that it's okay to feel certain ways and to be able heal themselves, because
they are also affected by this illness through us. I hope that I'm not just
rambling on.
I wish you a comfortable night.
Carmen

Hi Becky! Thanks for the birthday wishes! And better yet, for
telling me that 36 is NOT old! ha ha sometimes I just FEEL that
way! Hope everyone can have a wonderful and painfree day in honor of
my birthday!
Take care and God Bless!
Karen A.

In a message dated 1/25/01 7:16:42 PM Eastern Standard Time,
sunflower6668@... writes:

We can dream of bbq, steaks, etc, right?

Dream is all we can do with this disease....to eat them would only become a
nightmare and I'm sure we've all been there...it's just not worth the pain!
Even though I'm eating lowfat foods only right now, I feel the swelling and
know in time it will build up again for another attack. Christine, I hope
and pray you have a better day tomorrow. I want you to be able to eat
something without pain. I'll keep you in my prayers.
Hugs & Prayers
Carole

Hi Tammy from IL,
Where in Illinois do you live? I live in Michigan, about four hours
from Chicago. I am glad you found us. Keep those questions coming.
You will not only find answers, but support and comfort as well.
Take care of yourself,
Christine

In a message dated 1/24/01 11:08:52 AM Eastern Standard Time,
CJWatts88@... writes:
<< Shirley, where are you? Hope you are doing well but can't help but worry
because you haven't been posting. I miss you, Shirley....please let us know
how you are doing.
Elizabeth, are you okay?
Love,
Carole
Ditto again
Hugs and kisses
your pancreatis pal Anna from Michigan

Dear Henry,
I cannot tell you how relieved I was when I saw the Oliver
Williamson post. I am sorry about your latest bout. I guess the
hard part for us watching one another is that same old helplessness,
right? I hope they have you under control and stable. Thanks for
the short post. Take care and rest as much as you need to. We will
certainly be here whenever you are able to return. Be well, my
friend.
Lots of love,
Christine

I too forgot about his colonoscopy. Thanks for the info. We can
pray and not worry for the time being :-} Any word from Elizabeth?
Shirley? It is amazing how it affects us when one is absent. Each
one adds his own personality and we are at a loss when one is not
able to be here.
Anyway, I am sorry to hear your pancreatic pain is still there. Do
they know what they are going to do about it yet?
Take care of you, friend.
be well,
Christine

Hi Alicia,
so glad you have found us. I wonder what would happen if we could
advertise??!!!!!!!!! Wow, can you imagine the influx? I mean, if so
many of us found the site just by chance, imagine.............
Anyway, didn't mean to ramble. I am so sorry that you have to deal
with this ugliness, but am glad you are here. You will find much
love and acceptance here. And in the end, that is what counts the
most, right? Take care of you, and don't be shy!
Be well,
Christine

carole,
I have said that for months now, even though I hurt when I don't eat
as well. I guess my pat line for the docs is If you guys would quit
making me eat, I would be okay. I think that people don't know what
to say, so they have to laugh. I just wish sometimes that they just
wouldn't say anything at all. Oh well.
Take care of you,
Christine
We can dream of bbq, steaks, etc, right?

Hello friends
I just wanted to drop in and say hello. I hope everyone is doing well.
I've been doing unbelievably good for the past month. I can hardly believe
how good I feel. I don't know why, because nothing much has changed, except
getting rid of the stress now that I am no longer in touch with my family.
I guess I really underestimated how much stress they were causing, and how
much it was affecting me!
i wanted to write as well to tell everyone I talk to on AOL IM that if I
don't say hello when I come online, it is because I lost my entire buddy
list when I had to reinstall windows and reformat my hard drive. So if you
see me log on, just give me a yell so I can re add you. I go by the name

In a message dated 1/24/01 11:19:51 PM Central Standard Time,
briffle@... writes:

Mona,

Just wanted you to know I will keep you in prayer on Friday and I
hope all goes well for you! I know it takes a few days to get
results.....so keep us upto date!
Love, Becky
ditto here. debbie (ark)

In a message dated 1/25/01 9:00:11 AM Eastern Standard Time,
SHckb@... writes:

I am bad about not going to the ER or
calling the doctor when I am hurting bad. And because of that my doc
doesn't know how bad or how often I sometimes hurt.

Hi Tammy,
My name is Carole and I would like to welcome you to our group. I am very
sorry you have been diagnosed with Chronic Pancreatitis but glad you found
this site....you are in the right place for information and support from a
group of very compassionate people. For years I have done the same thing
about not going to the doctor or ER with my pain when I probably should have.
At least my doctor would have realized how often I was having attacks. I do
believe we all should see our doctors when we are in pain. Fortunately, I
haven't had many procedures but I did have surgery in 1986 for a Pseudocyst
and gallbladder removal. Now I have another Pseudocyst that's growing so
it's like...."been there, done that." I'm one of the lucky ones here who has
attacks for a couple of weeks and the pain is constant, it will go away just
to return later so I feel the others can offer you more from their
experiences than I. If your questions aren't answered, please post it
again....sometimes the posts don't get to us for whatever reason.
By the way, my best friend lives in Clinton, TN!
Hugs & Prayers
Carole

Hello, my name is Tammy and I am new to this group. I have so many
questions about this disease. I was diagnosed recently with chronic
pancreatitis in Dec of 2000. I had another ERCP and the doctor told my
husband while in recovery time. We got on the internet to find out
more about it and what it all meant and that is how I found this
support group, which I am grateful for. Reading all your posts makes
me realize that I am not alone and I do not have it as bad as many of
you do. I was having severe pain after this last ERCP, but now I just
have mild pain that comes and goes. My pharmacist sold me a bottle of
these capsules called...SUPER ENZYME CAPS...made by TwinLab. They seem
to really take the edge off of things. Has anyone ever tried these? My
Doc doesn't know yet that I am taking them. I have so many questions!
I'll just start with one more. I am bad about not going to the ER or
calling the doctor when I am hurting bad. And because of that my doc
doesn't know how bad or how often I sometimes hurt. When should I go
see a doc? Or is it safe to ride it out as I often do? My first bout
with this was in 1998, I had 2 ERCP's and my pancreas itself looked
fine, I just had closed up ducts...they cut on something and placed a
temporary stent in. After that I had several mild to moderate attacks
until this past fall. I had another ERCP done in December and my GI
doc told my husband that I had some small amounts of scarring on my
pancreas that wasn't there in '98....therefore he has diagnosed me
with chronic pancreatitis...I had another stent put in that is now
out. I thought back in 98 I was fixed! Needless to say, I did not go
to the doctor at all from 98 until this past fall...Did I wait to long
to go? Is it my fault for not listening to my body or what? Sorry this
is so long...I did not mean to ramble! Just so many questions!
Again I am so happy that this support group is here...I have read many
of your posts and have been touched.
Thanks for listening!
Tammy H. (IL)

Lynnear......Are you of on another teaching assignment? Haven't heard a peep from you since Christmas.....
Anyway, your missed!

Love, Becky

On another note, I have a breast biopsy scheduled for Friday.

Mona,

Just wanted you to know I will keep you in prayer on Friday and I hope all goes well for you! I know it takes a few days to get results.....so keep us upto date!

Love, Becky

Happy birthday to you!!!!

Happy birthday to you!!!!!

Happy birthday dear Karen!!!!!

Happy birthday to you!!!!!!

36 is not old!!!!!!

Love, Becky

Hi all,
Okay...you have me worried now. Everybody is aking about Henry, and
someone said something about him bleeding and needing blood???? Since
I have been sick for 2-3 weeks, I must have missed something. Could
someone please fill me in? Is he in the hospital? What happened??
I wouldlove to chat with anyone on aol instnat messanger I am
Beav62.Go ahead and add me to your buddy list if you are part of this
group. I'd like to get to know more about more people. I have such a
hard time keeping up with everyone. 8(

HI diane.
I'm not sure what is up with Henry as of yet. I know he is back
home. A lot help I am huh?
I will add you to my aol. Mine is BeckyE1999
Hope you are well!
Becky

--- In pancreatitis@egroups.com, Oliver Williamson <howmtp@h...
Hi Henry,
I'm glad you are home! I have missed you! Now, here is a story
about dilaudid - it makes me shiver just thinking about it! When
ever I was hospitalized at Ohio State they started giving me demerol,
then changed it to stadol, which I wish I could take all the time for
my pain, because it works the best for me. Anyways, on one of my
stays the resident doctors group decided to try dilaudid to see if
that helped any better. I had hallucenations (sp?) all night! I
thought my girls were there hiding under the beds, I kept trying to
talk them into coming out. I took at least 5 showers. I wondered
the hospital all night. I tried going into someone elses room
because I thought that was where they were hiding my stadol. I even
thought I shut Amy's, my oldest daughter, hand in the shower door &
started screaming. My roommate was the one who finally told the
nurse not to give me anymore. I called my husband & told him to come
get me, that they were trying to kill me. This was 4:30 in the
morning, and we live a hour & a half away. I barely remember any of
this. My roommate was so kind & understanding. After she told me
all the crazy things I was doing, I was so embarrased!!!! So, every
time I see the word dilaudid, chills run up my back!! And I ofter
wonder, why do people take hallucenation drugs to do this to
themselves on purpose? Very, very scary!
I hope you continue to get better. Please, my friend, rest and take
it easy so you can come back. I miss you!!
Lots Of Hugs, Linda

Dear Carole,
Thank you and all the others for remembering me during this recent short hospital stay. I posted earlier when I got home, but my head has cleared up some more since then from the I.V. Dilaudid. I feel better but stiill in pain and weak, but glad to be out of the hospital. I told the doctor resident that with my home health care after the immediate crisis of the initial severe pain attack was resolved; I should be able to handle the rest at home where I am happier and more comfortable. I've gotten a real dislike of the hospital in general even though I know all of the nurses who work on 10-West in the Digestive Disease Center, and they are all so nice to me. I'm just worn out with the whole hospital routine. As we all know you can't get much rest in there with them checking your vitals every two to four hours. Anyway after that horrible intense knifing pain subsided, I was relieved to be able to get back onto P.O. meds.
How are you doing? Have you decided whether or not to have surgery? Whatever you do please let me know what it is and when. I'm sorry that you have been feeling worse lately. I will write more later.
Your Pancreas Pal,
Henry

Hi Karen,
Thanks for the advise. How are you doing? When we were at the
doctors I told him how she has trouble with breathing when she plays
outside, and he still insist its allergies. But, he gave her an
inhaler, nasocort -use at bedtime, and an antihistimine. He said if
she doesn't stabilize in a week, let him know, and he will change her
pill to something else. She seems to be doing OK. They went home
from school with a friend, and I had to go get her early because they
had played outside & she was really coughing hard. She is wheezing
already, but the inhaler helps with that. I will keep on that doctor
& keep asking about asthma. Thanks again.
Lots of Hug, Linda

HI.....

Thanks for the get well wishes. I think I am on the down side of this. Everyone I know is sick. Even my Dr.
Hopefully I am getting better! Now if I can get past this tiredness! How are you doing?

Love, Becky

Becky,
sorry you haven't been feeling well. Hope today was a better day for you.
Karen
In a message dated 1/23/01 11:11:05 PM Central Standard Time,
briffle@... writes:

First, I need to say hello to all the new people. I apologize for not
saying hello.

I have been reading posts and I am sorry but I have not been feeling well,
so I have been neglecting you guys! Forgive me! Anna, How are you? What
has happened since your surgery? Much going on here...will write you more
later. How is Tam? Henry, what's up with you? Sandy, so nice to see you
back with us again!!!! Linda, are you better? Is the pnemonia gone yet?
Elizabeth, Where are you? Anyone heard from shirley? Hi Carole! Staci, How
are you feeling?
Lisa, nice to see you posting too! I have wondered about you often!
Steve, How is Tam?
Anyone else I missed???? I hope to be back on track soon!
*hugs* Becky

Carole, Thanks for the invite! It would be great to come see you. I
would love to sit face-to-face with someone who really understands
me!! I hope you continue to have nice weather. It is suppose to
snow here tonight, YUCK!! It all just melted!! Maybe it won't be
that much. The girls haven't even had any "snow-days" off school yet
this year!! I hope you continue to feel well. Thanks for all the
nice things you say & do for me. You are truly wondeful!!
Lots of Hugs, Linda...............P.S. I will continue to bug my
doctor........maybe he will get sick of me???????????

In a message dated 1/24/01 6:41:36 PM Eastern Standard Time,
shirlf3542@... writes:

. I had some pain last Thursday that was hard
to deal with. I have been sleeping and taking it easy.

Hi Shirley,
I'm so thankful to hear from you but I'm still concerned. Are you sure
you're all right. Was the pain coming from your surgery? Is there anything
I can do? Are you still having the pain? When you're up to it, please let
me know what has happened. Shirley, when I first joined this group, you were
one of the first to reply to my post and somehow we clicked and I truly miss
you and genuinely care about you and your health. You helped me so much and
now I'd like to be of some comfort to you with your pain.
Take care of yourself and I'll be looking forward to your posts.....hopefully
soon! You are and always will be in my daily thoughts and prayers.
Love you Shirley,
Carole

In a message dated 1/24/01 6:08:43 PM Eastern Standard Time,
feuerlotte@... writes:

Hi Carole!
Thanks for mailing me the message about IM. Sorry that I didn´t write
earlier, but I had to practice so much Piano-I have a concert next
monday- that I wasn´t in the Net for days...
I´m going to try to install the IM at my computer-or better-have my
friend install it for me...I´m kind of dumb with computers;-)

Hi Ilka,
Good luck with IM and I'll be looking for you on my Buddy List for IM. My
screen name is CJWatts88 so when you get it downloaded, go into setup and add
my screen name to your Buddy List. After you add me, you will always be able
to see when I'm online.
So you play the piano? That's wonderful.......I would love to hear you play.
I've always loved music especially piano. I Took lessons when I was young,
but I'm afraid I didn't have the interest to dedicate the time needed. I
play music all day...couldn't function without some type of music. Good luck
with the concert....wish I could be there! By the way, do you have any tapes
of your music? Hope you are doing well.
Hugs & Prayers
Carole

In a message dated 1/24/01 5:50:08 PM Eastern Standard Time,
liamhoha20@... writes:

of Hugs, Linda..............Nice? Sunshine? Where do you live
again? I miss Nice & Sunshine.

Hi Linda,
North Carolina...come visit and we'll have a nice long chat face to face. :)
Wouldn't that be nice? If you were close by, I would be glad to share the
pain meds I have since I don't need them every day. I only wish it could be
that way for you and the others here. I don't know how long that will last
but I am very thankful for the time I have without the severe pain....one day
at a time! Keep bugging your doctor until he gives you the medication/dosage
you need. Take care, Linda and I will keep you in my prayers.
Hugs & Prayers
Carole