Re:

[Guest guest]

THEY DID NOTHING TO BRING YOUR BP DOWN??? IF NOT U NEED A DIFFERENT

HOSPITAL..AND HWO DO U MAKE THOSE PAINS HAPPEN DID THEY TELL U?

ROSE

[Guest guest]

Thank you so very much le. The kind words do help ever so much. Sometimes

I think the isolation of these diseases is almost as bad or if not worst than

the pain. I use to be so outgoing - nothing stopped me in life. It is amazing

how people disappear when they do not understand the pain. Almost as if we are

contangious. lol I hope everybody has a painfree or somewhat painfree evening.

Take care.

Guardians wrote: You go right ahead and gripe, vent,

whatever....sometimes we can offer

advice, sometimes all we can offer is just some kind words of understanding.

..

Whatever helps, my friend...

I'm praying for you!

Love you...

gustate et videte quam bonus sit Dominus....

le

Sr. St. of the Cross, OCDS

" I always feel I have to take a stand, and there's always someone on hand to

hate me for standing there. I always feel I have to open my mouth, and every

time I do I offend someone somewhere. "

--Ani diFranco, " What If No One's Watching "

Wife to Salvador, Mom to (7), our child of the heart in Ecuador, Manda,

our child of the heart in Idaho, and 6 wee babes in God's tender arms.

[Guest guest]

lori-speaking as a nurse, you DEFINATELY need to not only be re-evaluated,

but report that physician! did they not give you meds to bring down that bp?

i would ask to speak with a patient advocate or a director-your situation

definately needs further eval!!!!!! sherri

Stay strong and healthy

>

>Reply-To: Hugs-N-Pain

>To: <Hugs-N-Pain >

>CC: " Lori "

>Subject: Date: Sun, 5 Feb 2006 14:14:30 -0500

>

>Hello everyone

>Well lastnight I ended up going to the ER I was have a feeling like stick

>pins going through my chest and down my left arm Also water on my leg foot

>I get there My Blood pressure was 219/113 well The Dr in his words said I

>was makeing that feeling in my chest happen I was told to go home and call

>my Dr Mon That is one reason I HATE Hospitals

>

>

[Guest guest]

Hi -

Thank you for checking in. Will continue to send up

prayers for your mom and your family.

Sandie and

-- Thanks for the Prayers!

Mom made it through the biopsy, recovery room, and overnight. Thank

you for all your prayers! Now we have to wait from 3 days to a week

for the results of the brain biopsy. It's done! Mom was groggy or

sleeping for the most part after the biopsy - but she did wake to eat

2 bowls of chocolate ice cream with whipped cream...

Will find out today if mom needs to stay 1 or 2 more nights at the

hospital. Most likely they'll discharge her today or tomorrow though.

And what a crazy day! I was told late AM. At 7:45 AM they called my

sister (called me first when I was in the shower) to say that mom was

in pre-op and the consent forms need to be signed (they had us sign

the wrong papers). Then we find out that instead of the drill/needle

brain biopsy that we had in mind - they were going to make an

incision, cut the bone out, do the biopsy, then return the bone. I

rushed to the hospital thinking what was I going to do - that was

much more invasive than what I thought was going to happen... When I

arrived she was already on the operating table (they took my sister's

consent over the phone). I was a nervous wreck! Then my sister, my

aunt, and my brother showed up... At 10:45 she finished and was moved

to the recovery room. At 2 PM she returned to her regular room.

Then... didn't realize the episode she'd have later as they gave her

Dilatin (anti-seizure meds) and Decadron (to prevent swelling) - my

first thought UGH! Was that a good drug or bad drug for LBD!! But

nothing for me to do - it had to be done. The first hour was critical

to get those drugs into her system. My aunt & I stayed with her - she

survived that and then her blood pressure dropped so low they gave

her IV. Then we left... at 8 PM... Then I called before I went to bed

last night - her nurse told me that her blood pressure went up and

down but returned to normal on its own. And mom pulled her IV out (he-

he). And she commented how strong mom was as she was trying to put

the IV back...

Will call again before I leave to work, visit during lunch, and then

again after work. (Took all my vaca days until April, need to work...

Wish I could tell my boss that I'll just show up when I feel like

it... )

THANK YOU AGAIN for all your prayers!

Welcome to LBDcaregivers.

[Guest guest]

Lori, eat some pumpkin...or bananas those will help put some firmness back

to you.

It might have been something you ate that cause it hon...I take water pills

too, and I just went on Nexium...well seems that is what is causing my

problems with it. But I started eating a banana a day and it has helped.

Blessings,

Kat

> Dr put me on water pills also to help with blood pressure but one thing in

the last 2 days Sorry I know this is gross but I have only passed water 3

times instead it has given my the bad case of Diarreha Pharmacy said its

unlikely but it has that affect on me should I worry not sure what to do

lori

>

>

[Guest guest]

Yes Maam born and raised in Boston. We love the Aquarium!!!!!

It is FREEEEEEEEEEEEEEEEZING here this week. We had some great 50 degree +

days a couple weeks ago and now its 11 below, its like living in

Ant-Friggen-Arctica!

[Guest guest]

In a message dated 3/9/2006 2:13:45 P.M. Eastern Standard Time,

mustangsally351@... writes:

but they

haven't figured me out yet.

Man, Id be so unhappy if doctors were unable to find out what was wrong with

me. With all the nerve problems I have been very lucky that I have a

neurologist that is on the money with all the diagnosis.

Ladies Im hoping you al feel better !

[Guest guest]

In a message dated 3/14/2006 12:29:53 P.M. Eastern Standard Time,

rachael79rsd@... writes:

*I hope you had a good night

Oh I had one hell of a night people. I ended up in the er with a demerol

line. My face and teeth were OUT OF CONTROL and I could not for the life of me

get on top of the pain. That demerol was HEAVEN though I was like LAH LAH

LAH ELMOS WORLD ... 3 hours of iv pain meds and a bed that i could control,

Im moving in to the er.

i woke up with major pain again this am. I dont know what the hell Im gonna

do. I need to call my neruo lady I think.

[Guest guest]

Lori--

Good luck with the surgery tomorrow, I hope everything goes smoothly

and your recovery goes quickly. You'll be in my prayers.

Marg

--

Hi everyone I go in tomorrow for surgery if something comes up I will have

to go to the other hospital Let me explain I have been haven pain really

bad the kind where you can't walk here they found my ovary left side to be

enlarged with a cyst with some abnormalities around it so i go in tomorrow

same day in and out ...Lori

[Guest guest]

Wow..., have you been delving into my head lately? You and I sound

so much alike. I have said all of those things lately...

I have no insurance....a great doctor that wants to do more to help me, but

we are strapped for cash and cant afford those things right now. I called

some number my Mom gave me about free prescriptions and I seem to qualify.

I have applied for SSD and I am still waiting...we sound like long lost

sisters....I told my hubby just the other day that I cant imagine living

the rest of my life like this...My Dr essentially told me to go home and

rest.....there is not much more that can be done. IM 33 FOR PETE'S SAKE!

The rest of my life is a long long time! Cant spend it sitting

around...that will make me go out of my mind.

Well, I just wanted to say that I truly appreciate everyone on this list.

Makes you know your not alone, and there are so many great ideas!

Blessings,

ORIGINAL MESSAGE:

Subject: Just got back from my RSD/Pain dr- long morning =(

*Hi all~~~*

*I just got home and wanted to post quick. I went to my RSD pain dr this

morning as I go monthly. We talked about the methadone he had put me on and

also the side effects. I was crying in his office again and I love that I

have such a good dr. He tried to brainstorm and see what else can be done.

He decided to put me on Lortab and said it shouldnt be much more than the

methadone I pay for. I ended up going to a walgreens down the rd from his

office and they said it would be over 100.00 just for the generic. I started

crying again caue I just cannot pay that much. Went back to his office

crying and he came out and said hold on one minute. He called around to a

few local pharmacies. He called me up to the window and said in plain

english 'rachael walgreens is raping people' He found a local pharmacy that

is family run and theyd only charge me 40.00 which is much better. Again i

thank god for my dr cause most wouldnt spend the time to do this. So i went

and got my new meds and pray they help. *

*Came home a little while ago and Im hurting like crazy. Dr talked about

options for me once i get insurance when approved for SSD. He knows it can

take quite a while but is happy I got a lawyer. He said we can do some type

of therapy like i was in before...the aquatic therapy did help me when i

could go so im hoping i can later on.*

*Im just so sick of being in so much pain all of the time and I told dennis

today i cannot live like this all my life. I wish this never happend to

me......and I hate that we are all suffering with pain levels.Sorry to vent

but i get so angry that i have to deal with this. I just don't know how much

more I can take.*

*Thank you all for being here and also thank you for being patient while I

catch up on emails. I hate being behind cause I feel like I am letting

everyone down. I will try to be on more tonight.*

*Love you guys!*

*

[Guest guest]

In a message dated 4/5/2006 1:44:42 P.M. US Eastern Standard Time,

rachael79rsd@... writes:

If you dont mine my

asking can I ask how much your taking?? I was on it for quite a while and it

did help me but made me nautious. dr is using that as a back up med in case

i cant tolerate the others like lortab. I hope it starts giving you relief

or maybe he can ''up'' your dosage?? I know alot of people who are on

methadone and once theyre given a bit more (with this med i was told by my

dr that its best to work up slowly) theyve gotten relief like i did.*

*Im here for you hun and hope you are doing better!*

**

*Moderator*

meth is stronger then lortabs perhaps the dr can allow u more methadone on

bad days or just raise the dosage..if u arent perfectly comfortable with your

dr dont name meds to him unless you are on it because some thing u are

reasearching meds and sadly if we know to much they think its about drugs not

about pain .. most drs will never understand util they know pain..

Rose

[Guest guest]

,

Stones are very painful! It's as bad as trying to push out twins at the

same time! lol

Glad you are feeling better keep drinking the water....cranberry juice is

good too!

Hang in there.

Gentle hugs, Debi

-- Re:

Hi

Went to doc and wasted 50.00 to be told can not do much for stone unless

its too huge to pass. I have no insurance so no xrays done. Did a urine

sample told blood in urine drink lots of water and given a script for a very

expensive antibotic. Anyways my husband saw his doc the same day and he told

him situation so he gave him samples of a different antibotic but better for

kidney stones that lead to infection. Oh yea this doc says we usually give

morphine but you already take it so we can not give you more. I said I don't

want more I want this thing crushed etc. I think she was surprised I was not

seeking more narcotics. Anyways feeling better today. The pain has been

there along time but got really worse and when I saw blood I knew it had to

do with kidneys. I have passed several small stones by drinking gallons of

water. I would not wish this on no one.

Thanks for thinking of me

from NC

~~ wrote:

I am sorry that i don't know much about the whole stone issue but I hope

you

are able to get some relief from it. Ive heard it can be very painful.

Please keep me posted on how you make out at drs and what happens.

We love ya!

[Guest guest]

In a message dated 6/15/2006 6:19:22 P.M. Eastern Daylight Time,

rachael79rsd@... writes:

Thanks for your email and support. It has been a long road as i tried

unsuccessfully to quit a couple of months ago- that was my first attempt

and my husband quit cold turkey with almost no problem....wish it were that

easy for me but its proven not. My dr wants me to quit cause it is the

worst thing you can do when you have rsd. I quit for 5 days and went thru

withdrawls while i was medicated from dental work...i have had a few ciggs

since then but trying not to get ''addicted'' so that once i get back from

myrtle i can quit 100%.

ps those smoking aids- dont help much at all i have the losenges and theyre

nasty LOL.

But hopefully within a week or so ill be completely quit with no going back

it is a hard rd but all i can do is what i can do LOL

Take care:)

Moderator

og if i knew i could smoke one and not get re addicted lol i would sure have

it lol ... the longer u smoke the harder it is i havent lit a cigerette in

over 3 years and it still drives me nuts at times..it is way better for any

nerve pain to not smoke though

Rose

[Guest guest]

Altoids helped me alot

with the patches & Zyban, i was very serious i went all out...lol

took me about 6 months to get over them

I have never missed them since

Steve

-- Re:

In a message dated 6/15/2006 6:19:22 P.M. Eastern Daylight Time,

rachael79rsd@... writes:

Thanks for your email and support. It has been a long road as i tried

unsuccessfully to quit a couple of months ago- that was my first attempt

and my husband quit cold turkey with almost no problem....wish it were that

easy for me but its proven not. My dr wants me to quit cause it is the

worst thing you can do when you have rsd. I quit for 5 days and went thru

withdrawls while i was medicated from dental work...i have had a few ciggs

since then but trying not to get ''addicted'' so that once i get back from

myrtle i can quit 100%.

ps those smoking aids- dont help much at all i have the losenges and theyre

nasty LOL.

But hopefully within a week or so ill be completely quit with no going back

it is a hard rd but all i can do is what i can do LOL

Take care:)

Moderator

og if i knew i could smoke one and not get re addicted lol i would sure have

it lol ... the longer u smoke the harder it is i havent lit a cigerette in

over 3 years and it still drives me nuts at times..it is way better for any

nerve pain to not smoke though

Rose

[Guest guest]

That is great and i envy any quitter that stays quit. I just cant be too

hard on myself cause it is a struggle- this is my 1st real attempt to

stoppping and i know smokers might fail a lil. Hope to be in your spots

soon!

>

>

> Altoids helped me alot

> with the patches & Zyban, i was very serious i went all out...lol

> took me about 6 months to get over them

> I have never missed them since

> Steve

>

> -- Re:

>

>

> In a message dated 6/15/2006 6:19:22 P.M. Eastern Daylight Time,

> rachael79rsd@... <rachael79rsd%40gmail.com> writes:

>

> Thanks for your email and support. It has been a long road as i

> tried

> unsuccessfully to quit a couple of months ago- that was my first attempt

> and my husband quit cold turkey with almost no problem....wish it were

> that

> easy for me but its proven not. My dr wants me to quit cause it is the

> worst thing you can do when you have rsd. I quit for 5 days and went thru

> withdrawls while i was medicated from dental work...i have had a few ciggs

>

> since then but trying not to get ''addicted'' so that once i get back from

>

> myrtle i can quit 100%.

> ps those smoking aids- dont help much at all i have the losenges and

> theyre

> nasty LOL.

> But hopefully within a week or so ill be completely quit with no going

> back

> it is a hard rd but all i can do is what i can do LOL

> Take care:)

>

> Moderator

>

> og if i knew i could smoke one and not get re addicted lol i would sure

> have

>

> it lol ... the longer u smoke the harder it is i havent lit a cigerette in

>

> over 3 years and it still drives me nuts at times..it is way better for

> any

> nerve pain to not smoke though

>

> Rose

>

>

[Guest guest]

It *is* hard to quit, nicotine is exceedingly addictive! So if it doesn't

" take " this time, pay attention to what went wrong, and start planning your

next attack. You *can* do it. You prove here on a daily basis what a

strong person you are.

Oh, and it is *so* important not to smoke after getting wisdom teeth out!

That suction in your mouth is the leading cause of dry sockets... Even now,

having experienced a couple of mind-bending kinds of pain, dry sockets might

possibly be the most horrible pain I've ever had. (Nobody knows how, but

when I had my wisdom teeth pulled -- all four bony-impacted -- I got four

dry sockets. The oral surgeon said he'd never seen anybody do that before,

especially someone as careful as I was about the suction thing. Oh. My.

God.) And nothing touched it. <shudder> Be careful!

>

> That is great and i envy any quitter that stays quit. I just cant be too

> hard on myself cause it is a struggle- this is my 1st real attempt to

> stoppping and i know smokers might fail a lil. Hope to be in your spots

> soon!

>

>

>

[Guest guest]

You're right, I hadn't thought about that! Clove everything... yuck. But

trying to answer " what do you mean, it hurts *more*??? " when you're in that

much pain already... whooooee. I'm glad I'll never have to do *that* again.

Yes, the tonsillectomy wasn't fun. Didn't eat anything for two weeks.

Water and liquid drugs. Even chicken noodle soup was too rough! But I'm

still really glad I did that... my tonsils were a *mess*. And now, I only

get every *other* bug that passes by, not every single one.

>

> --

>

> What a time to find out you're allergic to oil of clove! Of

> course, at least you (hopefully) didn't have to live with the taste of

> clove

> in everything. Wow, 37 for a tonsillectomy...that's serious surgery at

> that

> age (not that it isn't for a kid).

>

> Marg

>

> -- Re:

>

> Oh, jump in any time! Anyone who wants a private conversation should be

> taking it off-list.

>

> Clove... yeah, I remember that. I'm allergic to oil of clove. Guess when

> I

> found that out?

>

> I was 17. Over 30... owie. I had my tonsils out when I was...37? We

> don't

> heal well at that age!

>

>

>

[Guest guest]

--

What got me was when the dentist asked me to open my mouth wider...my

cheek looked like a chipmunk, and I had it open as far as I could, but he

wanted it open wider! I'm with you--never again!

I'm glad the tonsillectomy helped since you needed it. I'm lucky

that I don't teach anymore, and my daughter is home schooled, so we don't

get exposed to everything that comes along.

Marg

-- Re:

You're right, I hadn't thought about that! Clove everything... yuck. But

trying to answer " what do you mean, it hurts *more*??? " when you're in that

much pain already... whooooee. I'm glad I'll never have to do *that* again.

Yes, the tonsillectomy wasn't fun. Didn't eat anything for two weeks.

Water and liquid drugs. Even chicken noodle soup was too rough! But I'm

still really glad I did that... my tonsils were a *mess*. And now, I only

get every *other* bug that passes by, not every single one.

[Guest guest]

Hahahaha! Yes! " What do you mean, 'wider'? This IS wider! "

I'm still working full time, in a company that lost its mind and replaced

" sick " and " vacation " with " paid time off " -- which means that nobody wants

to waste their time off when they're *sick*, so they come to work when

they're sick, and pass it around the office. <sigh> If I were in charge, I

think I'd make it a policy that anyone who had some time off in their bank,

came in sick, and got somebody else sick, would get fired on the spot. It

seems like a form of assault, ya know?

>

> --

>

> What got me was when the dentist asked me to open my mouth

> wider...my

> cheek looked like a chipmunk, and I had it open as far as I could, but he

> wanted it open wider! I'm with you--never again!

> I'm glad the tonsillectomy helped since you needed it. I'm lucky

> that I don't teach anymore, and my daughter is home schooled, so we don't

> get exposed to everything that comes along.

>

> Marg

>

>

>

[Guest guest]

OK, good luck on the wisdom teeth, I just cant bring myself to go. Its

embarassing to say, but technically I have not been to the dentist in

oh, 22 yrs. last time I went ( and had cleaning etc) I was pregnant

with my son, who will be 22 in Sept. they told me then that the

wisdom teeth were impacted and they needed to come out as soon as the

pregnancy was over. Well its over, 22 yrs over almost lol. I tried

going in like 4 yrs ago cause was bugging the hell out of me which

they do every few months. had infection so they said had to wait till

that was cleard up. wasnt so much that but I couldnt sit still inthe

damn chair cause of my legs. since, it buggs me everyonce in a while.

thje tops just started poking there litte heads. but the b0ttoms, heck

I have broken off almost all of the bottom right one. I know needd to

go, hubby is bugging me like crazy about it. I just cant bring myself

to do it. So good luck with that and stopping smoking. Hubby and I

have tried a few times, but just cant. so we decided that after we

settle our car accident and get the settlement( we were dead stop and

she was doing like 45) we are going to use the settlement to buy a

house. When we do that, that is it no more smoking as well as guests

have to smoke outside the house.should stop now, but wel, just cant

seem tolast.

Blessed Be

Deb

[Guest guest]

--

The company my husband used to work for, before he retired, did that

same thing. He was having heart problems at the time (I think mainly job

stress related), and had to take time off quite frequently for doctor's

appointments, etc. His company actually made it policy that you couldn't

take a 1/2 day off, but had to take a full day off. And of course, that day

had to come out of their personal or sick leave days. GRRRR!!! I agree,

too...if someone is sick, stay home and don't spread it around. I used to

tell parents of the kids I taught that I'd much rather they keep their kids

home if they were sick, rather than sending them no matter what. For one

thing, when they didn't feel good, they didn't really learn a whole lot,

plus it spread the cold or whatever to everyone, including me. It never

helped much, the parents needed the " baby sitter " .

Marg

-- Re:

Hahahaha! Yes! " What do you mean, 'wider'? This IS wider! "

I'm still working full time, in a company that lost its mind and replaced

" sick " and " vacation " with " paid time off " -- which means that nobody wants

to waste their time off when they're *sick*, so they come to work when

they're sick, and pass it around the office. <sigh> If I were in charge, I

think I'd make it a policy that anyone who had some time off in their bank,

came in sick, and got somebody else sick, would get fired on the spot. It

seems like a form of assault, ya know?

[Guest guest]

Ha! And then they wonder why employee morale is low!!! <rolls eyes>

Fortunately, my company would rather have us for most of the day, so they're

reasonably flexible about doctor's appointments. But then, we make it up on

weeks like this one, where I'm doing some work today, and some tomorrow...

unpaid, of course.

>

> --

>

> The company my husband used to work for, before he retired, did

> that

> same thing. He was having heart problems at the time (I think mainly job

> stress related), and had to take time off quite frequently for doctor's

> appointments, etc. His company actually made it policy that you couldn't

> take a 1/2 day off, but had to take a full day off. And of course, that

> day

> had to come out of their personal or sick leave days. GRRRR!!!

>

[Guest guest]

LOL, I found your post soo funny. I live in Texas...and for the first time

we have actually had a cool summer!!! Its been running around 100 with the

heat index around 110. Usually by this time its around 117 and depending on

humidity can drive the heat index 125 plus.

Yes, I have seen shoes melt. A few summers ago the dashboard on my car

melted. Its one of the reasons we do not use the asphalt type roadways that

most

people are use to seeing. They would melt! Our roads are made of crushed

rock.

I have told many people how hot it is here and they do not believe me. My

MIL is one of them. She just left and vowed never to come back during the

summer...LOL that is great with me!! Then I told her its not really hot this

summer.

Seems like she was here in June the last time and we never had a day below

105 and she complained. But this time she came in July and its even hotter!!

Now she still has not realized that we really do not have a winter. We get

about 2 weeks of cold weather and the rest you just put on an extra sweater

or light weight jacket. Its been 94 here on Christmas day!

We went to NYC for vacation and they were complaining about a heat wave at

94 degrees. We were walking around very comfy...even with the humidity. Then

at nite we need to put on sweaters cause it was cold.

I just love to hear people's comments about the heat. They make me smile

Toni

[Guest guest]

I have RSD also and have had many surgeries on my shoulder. Changes in

weather and the barometer always affect me. For me, cold wet is the absolute

worst. I live in NJ and it kills me. DEB

In a message dated 9/3/2006 2:31:59 PM Eastern Standard Time,

rachael79rsd@... writes:

Im in nc too as you already know and i dont have fibro but RSD and feel its

effects...really any major weather changes

Hope you are doing ok!!!

rachael

Moderator

On 8/29/06, <_claudiarosser@claudiaro_

(mailto:claudiarosser@...) > wrote:

>

> My name is and I live in NC. I can now feel the effects that

> hurricanes leave on my body. I was wondering if anyone else is feeling

> it.

>

> NC

>

>

>

--

~*~~*~

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[Guest guest]

In a message dated 9/3/2006 2:23:05 PM Eastern Standard Time,

rachael79rsd@... writes:

He was told he cannot smoke fr 2 yrs cause of the cadaver bone put in his

neck. The smoking would restrict the bone from healing and adhering...from

how i understand it but he is home doing ok, in pain and wants a smoke LOL.

thanks for writing me

maybe this will give him the drive to kick the deadly habit