Re: (unknown)

[Guest guest]

Hi everyone I want to say that I am really happy with this group. You all are

very infomative and quick to respond to the Questions. Thank you.....Copper

dianne hayter wrote: although oxycontin supposedly

lasts 12 hours, most people find it lasts 8.

your dr. won't be surprised if he works with chronic pain patients. my

shrink said that anymore than 30 mg./day is addctive. i take 5mg. 4 time's

a day, and 2 clonazepam(valium family) at night. i f your dr. gives you any

" addict vibes " , he is not educated to the fact the people in REAL PAIN,

don't get addicted, just addicts, and they have to crush it to get immediate

release(snort it, or inject it with saline!). angel

Re: (unknown)

>

> In this message I ment to say I don't have pain for 8 of the 12 hours but

then I suffer for 4 hours till my next dose. Does that make sence? Sorry

about the type O thanks......... Copper

> Penny Hutcheson wrote:

> Hi everyone I wanted to ask some ? on the subject of Oxycontin my self and

this seems like the right time to do it.

> I just started taking Oxycontin 30 mgs twice a day on the first of October

and I have had sleepy days since. I also take Soma 350 mgs and Amitiptyline

25 mgs at bedtime. I want to know how long the sleepiness will last since it

has been three weeks now with no end in site. I am also in pain for about 8

hours into the med with 4 hours to go till the next dose. Should I tell my

doctor this? With the hopes he will not think I am just a drug seeker. He

has told me in the past that if he put me on Valium for muscle spasms that I

would get addicted to it and would never get off it with out help. This is

when I put in to my Attorney for a new Doctor but I can't change Doctors for

I have used all my requests according to the Workers Comp laws in my State.

>

>

> Thanks Copper

>

>

[Guest guest]

> what is a good protein powder to buy? let me see if I

> can list a good day of eating that would fit my

> schedule...

>

> Breakfast-bananna, protein powder and milk

>

> snack-apple,protein powder and water

>

> lunch-fat free yogurt ham and water

>

> snack-orange,protein powder and water

>

> dinner-chicken breast with baked potato, green beans

> and water

>

> snack-tuna on letuce and strawberries and water

>

>

> does this look about right?

You are going to need some Metamucil with all that protein powder you

are drinking.

MP

[Guest guest]

Hi,

I am new to the group so I would like to introduce

myself. I am annie. Welcome back and I think that is

great news about your friend. I do believe in miracles

and I also believe that your attitude makes a big

difference. I get depressed from time to time but then

I just try to deal with it. I have degenerative

arthritis and my back and leg pain gets bad. My

biggest problem lately is increasingly

headaches/migraines. Alot of people in the group have

been very helpful and I thank them all. annie

--- muddlissa@... wrote:

> I wanted to check in and say hello. I have pain

> related to repeated

> back strains/trauma and continuing degenerative

> process and a new

> herniation recently. I haven't been in this group

> for awhile, I had

> taken a hiatus but will be reading posts and seeing

> how everyone is

> doing for awhile.

> But I did not come in to talk about me tonight. I

> have some very

> good news to share with you I am just busting at the

> seams to tell

> someone so please bear with me!

> Some of you I may have told this to previously, I

> have a friend

> that has Neurofibromatosis. It's a condition that

> causes tumors on

> the skin, discolorations, sometimes other effects

> that I'm not

> entirely familiar with and inside tumors as well--

> it is genetic,

> they didn't know it ran in her family until she was

> born with it at

> which time her father was diagnosed for the first

> time. She has

> tumors in her brain. The ones she has are in a

> common location for

> the condition (on the auditory nerve area in the

> center of her

> brain). She is 28 years old and her father died from

> it at 38, when

> she was 14 years old. She has had nightmares and

> migraines among

> other things her whole life but if you met her you'd

> never guess in a

> million years that she has this, she is so fun and

> spirited. A lovely

> girl and a loyal friend. Well today, she went for a

> routine MRI to

> track the growth or any changes and instead of 3

> tumors, the

> technician mentioned ONE very tiny tumor...this is

> the first time

> since they looked that this has happened! I think it

> is because she

> quit smoking, hasn't smoked in over a month. She

> doesn't think so but

> I think it could have contributed. The last MRI was

> 6 months ago.

> Right before that they had gone in for a biopsy but

> missed the tumor

> and got healthy tissue. In any event it does not

> matter why, I am

> just SO relieved that it is diminished it's like a

> miracle! I think

> she had not taken care of herself very well after

> her father died

> because she was on some level depressed about what

> might happen to

> her no matter what, like it was inevitable so why

> bother kind of

> attitude. I think she has been greiving a long time.

> Anyway, I know

> this is all just a jumble of words spilling out I am

> just wanting to

> share this! She is so wonderful and deserves a long

> decent life.

> Thanks for listening. I will write about my health

> another time. I

> may now be a surgical candidate for my neck problems

> but that is not

> as important as this other news. I can still hardly

> believe it. Take

> care all and have a very nice Thanxgiving : )

>

>

__________________________________________________

[Guest guest]

Welcome back! Have a good week.

Carol

[Guest guest]

welcome back jami!

>From: CairnMom@...

>Reply-To: chronic_pain

>To: chronic_pain

>Subject: Re: (unknown)

>Date: Wed, 2 Jan 2002 09:08:09 EST

>

>Welcome back! Have a good week.

>Carol

>

>

>

[Guest guest]

Changing or discontinuing medications is always a big issue. One needs to

gradually downsize medications and to go away on a much to much close contact

type of trip is in itself a literal PAIN-----like camping well I always hated

those trips with the kids even tho I loved nature the work was always on my

shoulders and that alone is difficult. Actually you need xtra sleeping

medications when away and not in ones own good bed...Camping for me now

entails a cabin and a decent bed and a soft sleeping bag..we learn the hard

way. Usually my husband loves it more than me. He will wait til I go to

sleep and he then takes his bag, or a chair and go out into the meadows and

get his " nature fix " ......The altitude has a big bearing on me now with my

weight gain from physical inactivity.

Plan ahead I say.... Well next time you will prepare ahead o.k. Best of the

seasons''''''''' Alice

[Guest guest]

on the subject of, uh, constipation.....I've always

heard - could be wrong -- that metamucil and bulk

things like that aren't always a good idea for people

on opiates. that's because opiates tends to drain all

the water out the of the stool.

If we take bulk.....or extra fiber material, we're

just adding more bulk. Stool softeners have always

been what I've been recommended.

And if it's been a really really long time, and

laxatives aren't working, there's always that gross

lime otc green stuff...what is it... citrus

magnuisium? but it works ---- quick... i'm not a

doctor and these my own opinions. gary.

--- carpenter20012002

wrote:

> ---No apologies needed, if we can't talk about these

> problems too

> then I'd say we have problems. Unfortunately the

> meds do have this

> effect. Your note mentioned metamucil and laxatives,

> have you tried a

> stool softener? These are different in that they

> make the stool

> softer rather than being a laxative/stimulant. Its

> important to take

> it with a full glass of water to get its full

> benefit, the generic of

> a common stool softener is called docusate sodium.

> Since I'm not a

> pharmacist I would talk about this with your gp in

> regards to your

> other meds...the prune juice and roughage is super

> for you too, have

> you tried the prune juice warm? I wish good resultss

> for you-Darcy

>

>

>

>

>

>

>

> In chronic_pain@y..., " Terry Melanson "

> <clasldy@t...> wrote:

> > Dear Friends,

> > My apologies for a very sensitive subject, but, I

> feel we are all

> close

> > enough to ask it. I have a problem coping with

> constipation bought

> on by the

> > MS Contin. Metamucil and the like do not agree

> with me and

> laxitives per se

> > are much too harsh. I use prune juice and lots of

> roughage. At the

> moment I

> > am forced to go off my medication for 24 hrs to

> relieve the

> problem. The

> > downside is I am in intense pain during the time I

> am off. Any

> advice

> > please??? again my apologies for the subject. By

> the way Melatonin

> is not

> > available in Canada.

> > Thanks TerryM

> > God Bless

>

>

=====

sincerely, gary wiremen

__________________________________________________

[Guest guest]

At 09:45 AM 1/30/02 +0000, wrote:

>The last time I asked for an appointment they

>asked for my medical records. They didn't specify what so I sent them

>whatever I had...

I'd imagine what they wanted was the records from other doctors who have

treated you. They will probably be hesitant to see you without those

records, and certainly, the first appointment (at least) would be longer

and more involved if they have to repeat tests and agther information that

other doctors have already taken care of.

Hower

http://home.dejazzd.com/hower

[Guest guest]

> Yes of course and that is why I sent them whatever I had, which is

alot. They were then supposed to make me an appointment and all they

said was am I sure I can afford to go which I said YES, we can't

afford it but I will have to. I am just upset that they are so

difficult to communicate with, they don't pick up their phone and

they said they prefer emails-they don't reply to emails- only rarely

and I wonder if I will hear from them again.

> I'd imagine what they wanted was the records from other doctors who

have

> treated you. They will probably be hesitant to see you without

those

> records, and certainly, the first appointment (at least) would be

longer

> and more involved if they have to repeat tests and agther

information that

> other doctors have already taken care of.

>

> Hower

>

> http://home.dejazzd.com/hower

>

>

>

>

[Guest guest]

Hi Jami,

I too had endoscpoic shoulder surgery about 2 years ago. The injury was from

one of my students (I teach special ed.) trying to run into the road and

pushed me into a chain link fence. I hit one of the solid metal poles.

I was unable to lift my arm at all for a while so I could not wear

tee-shirts. It had to be a button down the front type so I could put the

injured arm in first.

Good luck with the surgery. Just thought I'd let you know about the shirts

so if you find you can't get into tee-shirts you'll have some sort of back up

shirt.

Kathleen in Calif.

[Guest guest]

,

I had surgery in Nov. and had a shot for pain as I was leaving and it was

painful for about 6 weeks. I've never had this happen before and I've had

hundreds of shots. Don't know why it happened,

Kathleen in Cal,

[Guest guest]

Thanks for the advice. What about putting the injured arm in first and then

putting the head and other arm in? I wear a size larger than I normally take. I

like loose t-shirts.

Hugs,

Jami

Krag52@... wrote:

>Hi Jami,

>

>I too had endoscpoic shoulder surgery about 2 years ago. The injury was from

>one of my students (I teach special ed.) trying to run into the road and

>pushed me into a chain link fence. I hit one of the solid metal poles.

>

>I was unable to lift my arm at all for a while so I could not wear

>tee-shirts. It had to be a button down the front type so I could put the

>injured arm in first.

>

>Good luck with the surgery. Just thought I'd let you know about the shirts

>so if you find you can't get into tee-shirts you'll have some sort of back up

>shirt.

>

>Kathleen in Calif.

>

>

>

[Guest guest]

,

This is so scary. I cannot believe it. Did the police catch the poeple who did

this. It is just getting worse everyday to be safe. It must have really been

frightening with it being in your own neighborhood. Thier is nothing that

someone like this will not do to get the drugs they want. I am happy to hear

that you were not seriously hurt.

/CA

muddlissa wrote: My boyfriend and I were brutally attacked

by some people behind our

house- they were driving in our neighborhood buying and using crack

cocaine. While they were high (we did NOTHING to provoke these

people other than being outside) they tried to run him over with

their car and if not for police getting there in time they would have

killed him. The police got there in time because I ran for help, with

my very bad back, up flights of stairs and 2 blocks away very quickly

which I shouldn't have done. It was the closest person who would

answer the door.I ran because if I'd stayed there I would have been

very hurt maybe paralyzed trying to save my boyfriend who I had to

leave there to fend for himself until I could get help.That was not

my first encounter with someone high and out of control. I may not

know what it is like to need a drug but I know what it is like to be

the victim of someone who has no control over their behavior.

I have had many many friends in recovery over the years. I used to

drive people to meetings and sometimes go in with them to offer

support and encouragement. I hide my medication if they are ever

around. I may care but I do not trust them. There is a guy who asked

me for my pills. What have MY medicines got to do with his addiction?

NOTHING. It isn't that I don't understand addiction or dont' want

to. I just am tired of having other people's problems affect me. I

have a right to feel as I do, that my medicine is a separate issue

and is not for any other purpose or discussion. If I am offending

people then perhaps I should not be here, I may be in the wrong

group.

[Guest guest]

,

Mine did the same thing! You won't leave my house

with anything routine. I hated it, it was all tied in

to her money control issues... and the fact that

nothing was my own. Not my thoughts, not my feelings,

and certainly not the items in my room.

When I did leave the house, I did indeed leave with my

clothes and that was it. A couple of years later I

moved from the dorm to an apartment and wanted my

waterbed... a GIFT for my birthday. She said it

wasn't mine and I couldn't have it. I never asked her

for another thing again.

Mine never threw me out though, her approach was to

tell me if tried to go anywhere she would find me and

make me come home (read public humilation of which she

knows no bounds!). I left briefly when I was 18, the

summer before college. We physically fought in the

driveway while she tried to pull the clothes I was

wearing off, and when I came home all of my things

were packed and moved. The posters on my walls, my

clothes, everything, just an empty room. OMG I hated

that woman.

Sometimes I find that I " forget " how bad it really was

until I write a post. I guess its a good sign that I

don't think too much about the details anymore.

, she reminded me that

> if I ever left

> home, all I'd be allowed to take with me were the

> clothes I had on my

> back at the time and I could never, ever come back.

> Effectively

> making sure I knew that I'd be out on the street

> with no help and no

> second chances. Lovely parenting technique.

>

>

__________________________________________________

[Guest guest]

Mona,

Are you sure? Is it true? LOL I like the thought that everything that

happens is supposed to happen, how do I know? It happens! So if it is

new, then whoopee! If it is here, oh yeah! If it goes? What do I get

to look at now? Yee Ha!

What I am " getting " is that the " work " inside me is the same! (The

events and names can change to protect the innocent, LOL dragnet.) But

if my issue is with say my mom, then it can be with my mom when relating

to cooking a cake, washing the dishes, doing my bills, or looking at

myself in the mirror. I stay me. The issues stay in here. Some times

things can press my buttons but geeze have you ever had the most mundane

thing bring out a reality that was dependant upon who left the mayo out?

LOL When I lose my train of thought it is because it left! The next

one is waiting eagerly! Finally I do not need to create a story to

combat boredom! God forbid I should be boring! LOL <sarcasm>

April

[Guest guest]

If I can help in taking care of your dad, or your mom...or for that

matter, you...when your mom has her surgery please don't hesitate to

call. I also work a day job, but they are very flexible and they know

my commitment and dedication to my family and friends. It would be my

honor to help you.

You are right about taking your dad out of his environment. I do think

though that after the first day or two he would settle in and be fine.

Would anyone be around when you are working? If not maybe that is when

I could help. Just let me know. I look forward to meeting you, and

your mom, in person.

Take Care of yourself and know that many people are praying for you.

Sure worked (and still works) for me.

Sandie

Des Moines, IA

[Guest guest]

Shirley

Hang in there. Praying for an open door and strength for you.

Many many hugs to you!!

Sandie

[Guest guest]

Shirley, we are all in the same boat. I feel terrible for not sending any

responses to most peoples posts, but I read every one of them and they help.

Even though they are full of misery, I know I am not alone. I fear for what is

ahead. The discriptions are not pleasant but I would rather know what I can

expect and then I can deal with it, than be surprised and not be able to cope.

When we first put my mother in the place she is in, they mixed up her meds and

she ended up getting two thyroid pills (synthroid and eltroxin) at the same

time. I caught it after 4 days of her taking double the amount. They also put

her eye drops in the wrong eye. They have a negative reporting system so they

only write down meds when there is a problem, otherwise you are to assume that

everything went as it is supposed to. They have screwed up her resident account

so that it looks like she has only $8.00 left instead of $160.00. They will not

give her money as they think she has none. I have tried twice to get this

fixed. One nurse told my mother she can not smoke in the room. (this is why we

chose this place). I spoke with her about that, but my mother cannot let that

go. She keeps telling me they wont let her smoke in her room. They lost a

nightgown (it wasn't labelled) and she will not send clothes down to the

laundry. I have insisted that she put her clothes in the laundry bag, that I

can't take her clothes home as I have too much laundry that I don't get done

because of visiting her as it is. The breakfast comes cold, she can't get a

good seat at the entertainment, the trips are boring, the food is leftovers (

not really), the elevator is slow, yada yada yada. But it is the best place I

have seen. And it isn't half bad. The nurses are nice, pretty attentive from

what I have seen, and I am there ALOT. I know most of the residents, a huge

amount of the staff, and several people from the agency that does companion type

care. They offer alot for the residents to do, even though my mother wont join

in. I don't see alot of family from anyone else. I do see lots of residents

constantly asking for help, some of them have problems that no one can help

with. It is there own delirium or whatever. I have been comforted by the

nurses/ and aides when I could only sit and cry at my frustration with mom and

her attitudes/moods. I was told that I am a good daughter and that it is great

that I am there that often for my mom. They do their best, most of them anyway.

And they like her for the most part, even if she complains most of the time. I

can see the dismay when she had a period of halluciating after her eye surgery.

One of the nurses said " oh my god, that is too bad your mom is going through

this, she is so nice and so funny. " I see them helping her and doing nice

things and then I hear from her that they are stealing and up to something and

so on...

So be a presence as much as you can in the NH without losing your mind. There

is no perfect place. I saw some places that were definitely worse than the one

mom is in. I keep that in mind, and the fact that the one my grandmother was in

also made mistakes, and wasn't perfect either. It is institutionalized care and

therefore despite what help there might be it cannot be what it was at home with

her daughter, but it is probably safe and reasonably good care.

It is okay to tell deepest and saddest feelings here. It is the only place that

LBD can't destroy. All the other horrible things it does to our loved ones

destroys them, but by sharing those horrible experiences WE GET STRONGER. LBD

discussions in this forum only help us. we can educate each other and the rest

of the world. We can do all we can to not let it drag us down with the ones we

love.

Take care and I will keep you in my thoughts,

Kath

[Guest guest]

Group

Just wanted to pass along an interesting conversation I had...

Still struggling with a Medicare Reimbursement my dad received monthly

from the company he retired from. It was direct deposited into his bank

account. He passed away Sept. 20 so from the 20 to the 30 I tried to

get October's stopped...to no avail. I have called, called, and called

again the company. I ended up mailing back a personal check (in the

amount of a whopping $43.80) to " pay back " his October payment. I

waited over 3 weeks, shopped and paid for a headstone, waited for that

check to clear, then closed out dads account to be finished with the

financial side of LBD. UNTIL, I received a notice from the bank showing

the $43.80 check had been returned due to insufficient funds and closed

account. ARGGHHHH!!! The company took their sweet time to send the

check through...which led me to my wonderful conversation today. I had

talked to a customer rep. yesterday and today she called me back. Her

mom passed away Nov. 8 of a disease like Parkinson's and Alzheimer's.

Guess what, I think her mom had LBD. I asked many questions as to

symptoms to find the many similarities of LBD, and now I have a friend

in New Jersey. She will be calling me again, personally instead of for

business, and I have her phone number.

Guess the point of my story is what I have taken from this disease is

the many blessings, friendships, and knowledge to pass on that " I have

been there done that, I truly know what others are/have gone through,

and I think I may be able to help. " Guess I usually look at the

positive side of life and feel so very blessed.

Hang in there everyone, there really is a reason and purpose for

everything in life. :-))

Sandie

Des Moines, IA

[Guest guest]

Gail

Wanted to answer your question of falling. It is very common for LBD

patients to fall for several reasons. One reason is depth perception is

off, making it tough to determine distances. Also, sometimes blood

pressure is affected, usually being lower than normal, which can lead to

dizziness. Then there is the Parkinson's side of LBD with stiffness and

rigidity. The LBD patient falls frequently due to their balance being

off. All of this causes falls which may or may not be an ongoing

struggle. For my dad, the falls stopped after a while yet his walk was

slow, with a gait, and when he turned he had to make a U turn or he

would fall backwards. I hope some of this helps.

One last thing, my opinion is if someone is diagnosed with Parkinson's

and Alzheimer's...that equation equals LBD. Lewy Body Dementia has

characteristics of both PD and AD. Again, this is just my opinion.

Please keep us posted as to how your dad is doing. Keeping you in my

prayers.

Sandie

Des Moines, IA

[Guest guest]

Gail

Hang in there. We are here for you and with that comes many prayers.

Hugs to ya!!

Sandie

Des Moines, IA

[Guest guest]

You gott'a be tough to live long enough to be old... :<

That poor 3 year old is already tougher than me,

as " I live to EAT! "

Shirley L wrote:

> Oh my when will all this be over.

> We know a 3 yr old boy who has a rare disease which leaves him with no

> digestive system. He has been in and out of the hospital most of his life.

> He just got out of intensive care 3 days ago and is back on his way to try

> and recover. How much can his little body take.

> Our good friend of over 35 years was recently diagnosed with lung cancer and

> is undergoing chemo. My sons future father in law has a very bad heart and

> actually has a pace maker now and his dad has Parkinsons and his brother

> died a few months back of gangerine in his leg and other problems. Now my

> sons future mother in law is dying due to some type of disease which I don't

> know what it is yet but according to the doctors she should have died years

> ago. A close family friend of 45 years has Alzheimers and isn't doing well.

> My cousin has a severe back problem.My mom cries daily and wants to go home

> and my dad is very depressed.

> Everyone on this list seems to have someone other than their LBD patient who

> has some horrible disease or illness. Why is there so much pain and saddness

> in the world. Thinking and praying for everyone, Shirley

>

>

>

>

> _________________________________________________________________

> MSN 8: advanced junk mail protection and 2 months FREE*.

> http://join.msn.com/?page=features/junkmail

>

>

>

[Guest guest]

Shirley

We were not promised life without pain and suffering on this side of the

garden, but we were promised that we would not be left alone during

those times. Look at the many people in the group who have reached out

and offered help, offered prayers and support to complete strangers.

The bond we all share here is a devastating disease, yet it has not torn

the many friendships apart. Thank you for opening up your heart and

your concerns. I will say an extra prayer for the situations you

mentioned.

I am here for you if you need an ear to talk, or a shoulder to cry on.

Blessings!

Sandie

Des Moines, IA

[Guest guest]

Hi -

Thanks so much for your sweet thoughts. It is truly awesome to know that

you all are out there supporting, caring, thinking and praying. I have

learned to go on your " gut " at times and just " know what you know " . This is

what my brother and I are doing right now. We are just listening to that

small voice inside (I believe it is God's voice) and going on what be believe

to be as true.

Please let me know if I can help you in any way. We are going down a

path rather quickly right now with mom. I will be happy to share anything

that I have discovered.

God bless - Martha (S.C. where we are expecting an inch of snow tonight

and lows in the teens - BURRR!)

[Guest guest]

Thank you for the acknowledgement of my dad and his LBD. See, there are

ways to get the word out...worked for us, and I am so lucky that you

found me. Life has mysterious ways of working out. Keep in mind, I am

a phone call away if you need any help.

Hugs to you and your family!!

Sandie

guess I need to watch the news to find out if all schools are closing or

delaying....ooops