Re:

December 25, 2003

HI Donna ..

I sat yesterday at the window for the longest time watching the eagles ..

swooping and circling .. at first they were very very high in the

sky. I heard them before I saw them.

I had to get out my binoculars to watch them. But as I watched, they came lower

so I no longer needed to hold up the binoculars to

watch them .. good thing .. smiles .. binoculars are heavy.

I have had asthma all my life. I remember several years ago complaining about

having asthma and my grandmother telling me, " You're

young .. you can deal with it. Quit complaining it could be worse. " Oh .. how

right she was .. I wish asthma was all I had to deal with

now.

Between the heart attacks .. diabetes .. the lupus .. the fibromyalgia .. the

asthma .. the diverticulitis .. and now this degenerative disk

disease with the back and neck pain .. I would be oh so grateful if asthma was

the only thing I had to worry about. But .. I am alive ..

still kicking .. smiles .. just not as high! So that in itself is a blessing.

I cherish even the smallest of blessings now a days!

Bright Blessings to you ..

December 25, 2003

, Ralph and I have to pay, 5,15 and 30 for one month of meds 3 months is 15, 45, 90. I would rather just get them for the reg, 5, 15 and 30. Thank God most of our meds are 5 dollars with 2 at 15 dollars and 3 at 30 dollar- Plus our insurance makes us try the new over the counter meds for all our expeniseve drugs.. then after we get sick from not getting our meds they will let us have them... I'm ready to hand them. lol Carol

From: (Brat)

To: LUPIES

Sent: Thursday, December 25, 2003 8:24 AM

Subject:

Starting the first of January I will have to start paying my co-pays on my meds by tiers too. I've never had to do that before. It has always been $5.00 for three months of generic and $10.00 for three months of brand name. I think I'm going to be having a little culture shock come next month.

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

December 26, 2003

,

I would have insisted on them NOT letting you go

home. While I don't enjoy the hospital, I would not take a chance

on the lipase being so high.

I hope your pacreas takes a vacation and doesn't flair up anymore......if

it does, I would get your butt right back in the hospital!!!!

Rest easy!

Love, Becky

Weston wrote:

Now, for the rest of my story. I

had done well pain/nausea wise on both

Christmas Eve day, Wed., and Christmas Day, Thurs. I steered

clear of meat

and ate very light. Thought I had finally found the secret

to staying away

from the ER. I should have known that sometimes there is

no secret and it

just doesn't matter what you do or do not eat. When you have

cp, you are

sometimes going to have bad attacks no matter what you do.

I was in bed and

almost asleep when the pain hit around midnight. I barely

made it to the

bathroom before throwing up. This was a 10+ attack and I

was in so much

pain I could barely move. Bud had just fallen sound asleep

and was in a

deep sleep. I called his name over and over (from the foot

of our bet) and

he didn't move a muscle. I finally had to make my way to

the bed so I could

touch him to wake him up. After throwing up a few times,

I managed to get

zofran and oxycodone down with a sip of water. After laying

curled in a

ball on the bed for a few minutes the pain improved for just a

bit.

However, just a few minutes later, it was back to a 10+, so the

ER was

calling me! We tried to go to the local hospital (5 minutes

away) but found

out the ER doc I'll filed a complaint against was there and I just

said,

"Never mind. We'll go to Crestwood in Huntsville."

We made the 45-60

minute treck with me in misery. They got me in immediately

and it wasn't

that long til the doc had the nurse give me a shot of dilaudid

and

phenergan. She accessed my port a cath, drew the blood, and

then started an

IV at 400 cc/hour. She had done the blood pressure test to

see if I was

dehydrated and probably was because of the drastic drop in my blood

pressure

standing vs sitting. It didn't take long for the shot to

kick in and I fell

asleep since it's about 3 a.m. at this time. Around 5 the

doctor came in

and told me he was letting me go. I assumed all my labs were

okay and I was

much better, so going home sounded good to me. I asked if

he would give me

one more dose of med for pain and nausea before I left so I could

get a few

hours sleep before needing to take oral meds. They gave me

another shot of

dilaudid/phenergan. The nurse told me he wanted it given

IM vs IV because

it would last longer. No problem and the pain that was at

about a 5 was

quickly down to a 2 (about as good as gets for me). I was

ready to go and

asked for a copy of my labs. They were not horrible, but

they were not

normal either. My lipase was elevated to 665, one liver enzyme,

AST, was

110 (almost 4 times normal), total protein, globulin, RBC, HGB,

and HCT were

all low. When I saw that, I told the ER doc, he should call

my internal med

doc because even though I was much better at that point, that from

past

experience, if my lipase was elevated, as soon as the shot wore

off and I

even began clear liquids, I'd be back at the ER. The ER doc

said, "but you

said you were feeling better". I told him I was but I just

didn't want to

have to come back a few hours later. I could tell he wasn't

happy (but he

was nice enough) but he said he called my internal med doc and

the internist

said that since i was feeling better we shouldn't go by the numbers,

we

should go by my symptoms and since I was better I should try to

make it at

home. I agreed that I would give it my best shot at home.

They told me if

I got worse again to come back.

I decided I will do nothing but clear liquids for the next day or

two and

see if I can manage with just my oral meds. I am scheduled

to have another

celiac plexus block on Monday. The hope is that even though

the first one

didn't really do much to help, the second one will do more.

I called both my internist's office and my GI/Hep's office and both

offices

are closed today. It ends up that my GI/Hep is the one on

call for his

group this weekend. I asked the answering service to have

him call me so I

can tell him what's going on. It was 9 a.m. when I called

the answering

service and I haven't heard from him yet. I am hoping that

if I do get

worse, he will do a direct admit and not make me go back through

the ER.

I was given the shot of dilaudid/phenergan at about 5:30 a.m. and

it is

wearing off, but it lasted longer than I expected. I've had

only ice chips

and a popsicle, but they've stayed down. I went ahead and

took my morning

meds when we got home at about 7 a.m. The meds included MS

Contin 30 mg and

phenergan 25 mg tablet. I am allowed 3 MS Contin daily and

also 4 oxycodone

5 mg per day. I'm going to take an oxycodone and another

phenergan tablet

in hopes of keeping the pain/nausea at bay.

My last two hospitalizations, my amylase and lipase were normal.

That's

when both the GI and internist told me that since I have CP, my

enzymes may

never elevate again so we have to just go by symptoms. My

amylase has not

been above normal since Oct 2002. My lipase has not been

elevated since

August 2003. Since Oct 02, my amylase has been almost dead

center normal at

around 45-55. This time it was 73, not above normal but higher

than it has

been in over a year.

I don't know if I'm over reacting, but from past experience, I really

feel

that since my lipase is elevated, I probably need to be on IVs

and NPO for

at least a day or so. Hopefully I am wrong and I'll manage

fine with my

clear liquids and oral meds.

Just wanted to get an opinion from the group.

thanks,

"The LUPIES Store" Come check out our store...

http://www.cafepress.com/thelupies

"The LUPIES Web Page"

http://www.itzarion.com/lupusgroup.html

"The LUPIES online photo albums!"

Check out what your fellow Lupies look like...

http://www.picturetrail.com/gallery/view?username=lupies

June 19, 2004

- Did you get as fond of yours as I am of mine? I actually proposed to it last night and am thinking about who to invite to the reception and what music to play. Any ideas on the subject? "Chains...My baby's got me locked up in chains" or "Tie a Yellow Catheter 'round the Old Oak Tree" Hmmm. Although it hasn't given me an answer yet, I'm hoping !!! (Barbara who is being waaaaay good...only went to the bank and the dump and did a load of laundry in my spanking new dryer....will now "chill")KM86@... wrote:

Barbara

Enjoy your relief, but please don't overdo it.

Definitely sounds like he's being permissive. When I had my continuous catheter, I could only have it for a week.

June 19, 2004

Hmmmm. Maybe it was the concentration or something. Mine has bupivicaine, fentanyl and clonidine. Barbara

KM86@... wrote:

Barbara

It had Marcaine (Bipuvicaine) and Fentanyl in it.

June 25, 2004

There have been a couple of posts lately that have been, at a minimum, insensitive and petty

I have to agree with you Barbara, though I've kind of let it slip by.

I also have to ask that people remember that there are no definitives in RSD. What works for one will not work for another, and your experiences will always vary from others.

We are NOT Doctors here, simply a support group, and our experiences cannot be taken as medical advise of any type.

Thanks,

Jo

January 10, 2005

I hope it picks up I'd like to meet some new people.

January 24, 2006

,

With the Peace Corps, I don't think the in-depth look into things CHARGE

just has to do with the syndrome. My non-CHARGEr has spent time in

Ghana and worked through World Teach (I think that's the name - it's

through the Kennedy School in Cambridge, MA) on an isolated island in

the S. Pacific.. She had to have one heck of a physical. Luckily, my

brother knew the ex-head of medicine for the Peace Corps in Africa, so we

were able to get all sorts of information. By the time E. headed to the

Pacific, we'd fought (and I do mean fought) to put together a year's supply

of disposable syringes, various prescription drugs because she wouldn't

necessarily have access to doctors. From her friends' experiences, I think

you'll need to do the identical thing with Peace Corps.

When you find out where you're going, please drop me a line. I can put

you in touch with who probably has friends who've been to the

same area.

As a parent, I must tell you that this sort of thing is nerve wracking (jelly

fish stings, burns, creepy guys harrassing E.), but she gained absolutely

endless confidence and learned - and gave - one heck of a lot.

So, go for it. Martha

July 11, 2006

Good I'm glad you are doing okay!! I was scared too. You will be

fine!! Do you have any help for when you get home? I had my Mom with

me for the 1st week. She was a huge help. I was just tired and didn't

want to be around food. You will be okay. ;D It will be so worth it

especially when you start losing!! We are here if you ave any

questions.

OXOXOX

>

> Thanks, . I feel like I am content with my decision to have

this

> surgery, but still scared to death! I think I'm more worried about

coming

> home, feeling crummy, and regretting that I did this.

>

> I joined a support group and got a lot of information from the

members on

> Friday night - stuff I didn't know even after reading everything I

could get

> my hands on - so hopefully, having them to rely on will be helpful

in the

> time frame after my surgery.

>

> Thanks again!

>

> See Our Latest Family Pictures and Blogs

> www.skamarakas.com

> www.upallnightgaming.com

>

July 17, 2006

That's a great Goal !!! I look forward to those kinds of things myself!!

" O. " wrote:

I love your new pix. My family does the dirt bike thing too. My

husband and 8 year old ride the 2 wheelers and my 3 year old and I

ride the quad. He will start on the PW 50 this winter and I'll be able

to get a dirt bike!! My ultimate goal (material goal) of WLS.

Thanks for sharing!!

Hugs!!!

---------------------------------

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

__________________________________________________

November 12, 2007

I'm still dealing with extra pain and pain meds that aren't strong enough to

help, but I guess that this is a new stage and I just have to accept that t

his is the new " me. " At the same time, with this new realization, I'm trying

not to let it depress me. How are you now?

Love and gentle hugs,

Debi/So.Cal.-54

In a message dated 11/12/2007 7:56:13 A.M. Pacific Standard Time,

herbal7@... writes:

Hey there, How are you? Hope you are doing alright. Sounds to me though like

you and I are in a bad flare and just trying to make it through the day. My

back is hurting so badly it is hard to walk around. I have been doing very

little this past 2 days. Hope things improve for you soon.

Hugs,

************************************** See what's new at http://www.aol.com

November 12, 2007

I'm still dealing with extra pain and pain meds that aren't strong enough to

help, but I guess that this is a new stage and I just have to accept that t

his is the new " me. " At the same time, with this new realization, I'm trying

not to let it depress me. How are you now?

Love and gentle hugs,

Debi/So.Cal.-54

In a message dated 11/12/2007 7:56:13 A.M. Pacific Standard Time,

herbal7@... writes:

Hey there, How are you? Hope you are doing alright. Sounds to me though like

you and I are in a bad flare and just trying to make it through the day. My

back is hurting so badly it is hard to walk around. I have been doing very

little this past 2 days. Hope things improve for you soon.

Hugs,

************************************** See what's new at http://www.aol.com

November 13, 2007

, I too have a herniated disc in l4 and l5. Some days I think that is where

the majority of my pain radiates from. When I walk my legs go numb, when I sit

my legs go numb and the pain in my back is just horrible. My Neurologist ordered

the MRI of my spine in Sept 07 and the radiologist said spine was fine, found

nothing. While I was at my appt with Neuro doctor he found it!!! My nerves are

severely pinched he stated that my nerves have about .4cm to go through and I

had an EMG done and it showed that my left side is receiving but my right isn't

getting them. I am just one big messed up person. My neuro suggested swimming

for my back so I joined a low impact water aerobics class at our local YMCA. It

has helped both with the back and the fibro. I also have some degenrative stuff

happening. I don't want surgery, but if the pain isn't better by summor 08 I am

going to opt for surgery. On top of everything else I also suffer from major

depression and

panic disorder. There are days that I don't want to leave the house and just

going to the grocery store when it is busy puts me over the edge. I am trying to

work through all these issues with meds but I am to the point now I take about

12 pills in the morning and about 6 at night and I have nothing for pain. I do

have another appt with a different pain management doctor next wednesday but

until then I am in pain everyday. I can't sit stand or walk for very long. Oh my

gosh I have rambled.....sorry. Just wanted to say I feel your pain with the back

issues.

Debra B

Gladewater, Texas

Re: The monster and back problems -- delurking

I have l-4 and l-5 problems and they were herniated and fused by themselves. I

avoided the surgery and am glad I did. i live everyday in pain also. You learn

to adjust and live life around it. I hope whatever choice you make, it all turns

out for you.

Melody <sunshineangel@ gmail.com> wrote: Thinking of you Teri!

Teri Wallner wrote:

> Good morning.

>

> I have fibro.diagnosed 3 years ago, but have dealt with it for many years.

> I also don't seem to have a day that is pain free - the level just varies.

> My meds take the edge off and allow me to function day to day, but it's

> always present. I've kind of learned to just accept that it's a fact of

> life for me and have had to make various lifestyle changes as I'm sure many

> of you have too. I found a way to work from home doing transcription but

> even that affects the monster. But along with that I have back problems.

>

> A little background - 49 year old female with back problems for over 10

> years. I have now what they call an " end stage " herniated lumbar disk.

> First MRI in '98 showed a herniated disk and treatment was suggested.

> Second MRI in '03 showed progression of the herniation and degeneration.

> Surgery was suggested. I was told I could either have the surgery or live

> with it. Third MRI showed " Marked disk space narrowing L4-5, with loss of

> hydration and subligamentous disk bulging at L4-5, posterolaterally, more

> severe on the right with some root sheath compromise on the right at L4-5.

> There is some bony diskogenic sclerosis of the vertebral bodies L4 and L5

> anteriorly " .

>

> My pain level has increased since this all first started and I take meds

> daily just to be able to be productive. The fibromyalgia which only adds to

> the problem. On a daily basis I take Tylenol 4's, morphine 30 mg ER,

> anti-inflammatories , anti-depressants and muscle relaxers.

>

> I've run the gamut through doctors and pain clinics for what seems like

> every imaginable type of treatment out there. Nothing. So I take my meds

> and have adjusted my lifestyle to include the chronic pain.

>

> Finally decided after a number of people telling me I should have the

> surgery, including my own family doc, to go ahead and look into it. The

> first surgeon said I was a prime candidate for a fusion or disk replacement

> but he wouldn't do it because of my fibro. He said that would make it

> worse. I sort of understand that logic, but then again, I don't.

>

> The second surgeon said he would be willing to do the surgery, but said it

> wouldn't help my fibro. Well, that's a given. But if it would lessen my

> back and leg pain, I would be willing. He said he would do a Direct Lateral

> Interbody Fusion, meaning they go in from the side, which I've never heard

> of. I've been denying having surgery always saying I've never seen anyone

> get better from back surgery, only worse. He also said I didn't " have " to

> have it. But what are my options? Chronic pain for the rest of my life,

> which it seems I'm going to have anyway because of the fibro? Or having

> surgery that " might " help or might not. They are also a very anti-narcotic

> clinic and I was told I would have to wean off my meds for a few weeks and

> then be totally narcotic free for a solid two weeks.

>

> I would die. I would not be able to function much less work or anything

> else. Again, not only because of the back problems but because of my fibro

> and typing doesn't help, but it pays the bills and I have no choice but to

> work.

>

> The one doctor told me if he could put me in a time capsule and launched me

> ahead 10 years or so, my back would not be as bad. My father, a long time

> ago, said the same thing, that they sort of " fuse " themselves.

>

> I have no idea what to think anymore. I am totally confused. I'm almost

> thinking I should just not have the surgery because there is a good chance

> of the surgery NOT working and even if it does, I'll have chronic pain

> anyway because of my fibro. I'm afraid that the surgery would just flare my

> fibro immensely. I know how bad my fibro gets just from a common cold. I

> would think having major trauma such as surgery would send me to the moon.

> Is it true about the " self-fusion " thing? If anyone has any opinions,

> advice or suggestions on anything I've said - I would welcome them.

>

> Thank you all for listening as I'm sure many of you know what chronic pain

> is.

>

> Confused -

>

> Teri

>

November 13, 2007

Debra,

Why didn't the Nuero prescribe anything for you? As far as taking alot of

Pills I agree with you but you just have to get use to it. Hopefully insurance

companies will help a little more in the future. In Jan. we will get to find

out what my husbands insurance will be. It is always changing. I think I have

about 8 prescriptions. I get rid of what ever I feel like isn't working. But

girl you need something for the pain, I would call the nuero and have him

prescibe something.

Lori H

debra bunt wrote:

, I too have a herniated disc in l4 and l5. Some days I think

that is where the majority of my pain radiates from. When I walk my legs go

numb, when I sit my legs go numb and the pain in my back is just horrible. My

Neurologist ordered the MRI of my spine in Sept 07 and the radiologist said

spine was fine, found nothing. While I was at my appt with Neuro doctor he found

it!!! My nerves are severely pinched he stated that my nerves have about .4cm to

go through and I had an EMG done and it showed that my left side is receiving

but my right isn't getting them. I am just one big messed up person. My neuro

suggested swimming for my back so I joined a low impact water aerobics class at

our local YMCA. It has helped both with the back and the fibro. I also have some

degenrative stuff happening. I don't want surgery, but if the pain isn't better

by summor 08 I am going to opt for surgery. On top of everything else I also

suffer from major depression and