Re: OT I'm alive

[Christina Peterson]

Poor Sooz,

So sorry to hear about your pain. Hope the relief has continued.

Tina


"Dr. Sooz" > wrote in message
...
> Hi, guys, I'm back.
>
> After trying to wade through the millions of posts, I finally marked 'em
all
> read. Good god! So I answered a few -- then gave up. Please let me know
if I
> missed anything Important, or hurt anyone's feelings by ignoring them.
>
> My report:
> The pain has kicked my butt. I was out of commission for a while, and am
> crawling back slowly. (I mean, I'm in serious pain 24/7 -- it hasn't
stopped
> for 15 1/2 years, not for a second -- so I'm no sissy.) It knocked me out
of
> the game for a while. I'm pretty tough with pain itself -- it was the
> trembling, dizziness, and weakness when the pain gets too bad, *that*
stopped
> me cold.
>
> I'm doing better the past month because of the new meds, but for one
thing: It
> gave me new (physical) boundaries. I didn't really know where those
boundaries
> are! So I overdid it, and maxed out.
>
> Now I have a better idea of where my pain boundaries are.......sheesh.
I'm
> still a mess, but at least I'm a walking-around mess. My in-laws arrive
from
> St.Louis at 4pm today for a weekend with us. Haw haw haw! The
> carpet-shampooers [temporarily] ruined our carpet -- we have to get it
redone
> (next week, of course, *not* before the in-laws arrive....oh well). Our
new
> furniture arrived yesterday, but we can't put it on the carpet. So the
couch
> is in the kitchen (haw!), etc.
>
> Mercury got a bee sting in his paw last night during his late-night
walkie, at
> the end of a jam-packed freeeeaky day (I'd tell you about it, but I do NOT
want
> to relive it) -- ever try to get a stinger out of a reluctant
73-pound-dog's
> paw? And soak the paw afterward? Yikes. I'm so glad I started messing
with
> his paws etc. when he was a tiny little pup. He was pretty good, even
though
> it hurt. Then he got a Benadryl and went to sleep.
>
> At least I look cute. I finally got my hair cut. :-D
>
> Glad to be back. Please tell me if I mmissed anythig. I know about the
Birth
> Of Beautiful Ophelia Clementine!!!!
>
> ~~
> Sooz
> -------
> ESBC
> You've got to ac-centuate the positive,
> E-liminate the negative,
> And latch on to the affirmative --
> Don't mess with Mr. In-Between!

[Dr. Sooz]

>So sorry to hear about your pain. Hope the relief has continued.

Sweetie, your words touch me and warm me.

Just to keep everyone abreast of what's been going on, as briefly as I possibly
can -- I haven't been keeping it to myself on purpose. It's just been hard to
know when to say anything. It's been so unresolved for a long time.

To start with: when Kevin graduated law school in May 2002, it started a
cascade of events from which there was no respite for me (or for him, but this
is about me, me, ME!). Fibromyalgia reacts badly to stress, blah blah blah. A
couple of the events were really hard on me physically, mentally, and
emotionally -- not bad events, but demanding. The damp winter cold in the SF
Bay Area made things worse.

The fibro pain, and other symptoms, got gradually worse and worse and worse. I
didn't notice it at first, and I had so much going on that I didn't notice it
for a long time. Finally Kevin ended up in the hospital himself, with several
scary events (including ambulances carrying him away twice). I lost a lot of
sleep, really crucial for fibro folk.

About a month after he got better, I noticed I had gotten so bad I wasn't
getting out of bed anymore -- not because I was depressed (though I was!), more
that the pain had completely beaten me and was ruling my every move. I wasn't
able to make myself feel better -- I didn't have the energy to do the necessary
stuff, but I also was unable to make any difference in the pain. Nothing
worked. I saw my doctor, who helped with new meds (not painkillers, but an Rx
that neurologically prevents pain). The first two months of the Rx made me
sleep most of the time. I had to cancel everything.... dentist appointments,
haircuts, bead classes, everything -- too hazardous to drive!

It started to help. I was so grateful! Two weeks ago, I reached the full
dosage of the meds (it takes a couple of months to slowly, gradually increase
the dosage to therapeutic levels). Whew. I was starting to lose my usual
personality; it was rough. I'm now starting to bead, be able to have Mercury
for a real visit, get my hair cut again. And my teeth are really clean again!


I had some ups and downs, and serious setbacks, during the gradual increase of
the new meds. It was a struggle. The side effects are almost nonexistent,
except for the (now past) sleepiness, but that wasn't true at first. The pain
fluctuated without warning, and affected my morale a lot. I didn't bring news
of it here, because I didn't know what was going on from one moment to the
next. I was so confused, freaked, afraid, struggling, and really suffering
that I didn't know what to say. My memory was totally screwed up (worse than
usual) because I was using up all my energy trying to get through the next half
hour.

Thanks for the treats anyone sent me during this time. It really helped me not
come completely unraveled. I was slow about thanking everyone, and not
consistent in where I posted or emailed my gratitude. I may even have
not-thanked someone, or more than one someone. I apologize if I did that.

It's been indescribably awful; I don't know that it's over yet. I'm still kind
of in shock. I feel like a different person. It just went on for way too
long. If I'd known, last May, what I know now, I don't know that I'd have had
the courage to put one foot in front of the other. I'm still gun-shy and not
up to whatever "normal" is for me.

That's the story.


~~
Sooz
-------
ESBC
Dr. Sooz's Bead Links
http://airandearth.netfirms.com/soozlinkslist.html
One of the advantages of being disorderly is that one is constantly making
exciting discoveries. ~ A. A. Milne

[BeckiBead]

Dear God, Sooz. I hope the new meds continue to work for you and I am SO GLAD
that something was able to relieve all that.

Love you.


Becki
"In between the moon and you, the angels have a better view of the crumbling
difference between wrong and right.." -- Counting Crows

[Cheryl]

Dear Sooz,

whatever it takes - keep it up.
I am sure Mercury and Kevin are glad you are back to a more normal state...

I hope, however, that the drug they are giving you is NOT neurotonin.....
If it is - please give second thoughts to continuing it.... and contact me.

Cheryl of <A HREF="http://www.dragonbeads.com"> DRAGON BEADS </A>
Flameworked beads and glass
http://www.dragonbeads.com/

[SmartAlecBlonde4]

>It started to help. I was so grateful! Two weeks ago, I reached the full
>dosage of the meds (it takes a couple of months to slowly, gradually increase
>the dosage to therapeutic levels). Whew. I was starting to lose my usual
>personality; it was rough.

I'm glad you are doing better now. It must of been a really horrible time for
you.

Jo Jo

[Dr. Sooz]

>NOT neurotonin.....
>If it is - please give second thoughts to continuing it.... and contact me.

It's neurontin, not neurotonin (I've heard of both before). Uh oh....why? :-(
~~
Sooz
-------
ESBC
Dr. Sooz's Bead Links
http://airandearth.netfirms.com/soozlinkslist.html
One of the advantages of being disorderly is that one is constantly making
exciting discoveries. ~ A. A. Milne

[Dr. Sooz]

>It must of been a really horrible time for
>you.

It's not over yet. Of course, having it be *Over* isn't something anyone can
deliver. I've just gotten my pain level down from an 8 - 9 to a 6 1/2 - 7,
which I find I can deal with and still get a few things done here and there.

Pain management is the biggest part of my life, unfortunately, and it's been
that way for over 15 years. I'm doing great when I can finish a strung
bracelet in 3 days! I'm the typical beading student who never, ever finishes a
project in class. I hate that. I love to make stuff, no matter what, and I
just don't have the stamina to get stuff done (this is the big reason behind my
not being digi-camera fluent yet).

I get frightened when the pain level creeps up to 8 again -- you know, what if
it doesn't go down, like it didn't for the past year? I know, what-ifs are
just stupid -- but dang, it's hard not to what-if when you have enough pain
*already*. It twists everything else in your life. I get really scared. It
already destroyed my work life, and my marriage, and lost me my dogs full-time.
Sure, I was married to a creep who was enraged with me for being ill -- but if
he could be like that, what other, milder versions of that will other, better
people feel regarding me? It's scary on so many levels.
~~
Sooz
-------
ESBC
Dr. Sooz's Bead Links
http://airandearth.netfirms.com/soozlinkslist.html
One of the advantages of being disorderly is that one is constantly making
exciting discoveries. ~ A. A. Milne

[Shelby]

Cheryl, not to horn in but Rich takes Neurontin for his diabetic
neuropathy. Is there something we should know that maybe we don't?

Shelby

Cheryl wrote:
> Dear Sooz,
>
> whatever it takes - keep it up.
> I am sure Mercury and Kevin are glad you are back to a more normal state...
>
> I hope, however, that the drug they are giving you is NOT neurotonin.....
> If it is - please give second thoughts to continuing it.... and contact me.
>
> Cheryl of <A HREF="http://www.dragonbeads.com"> DRAGON BEADS </A>
> Flameworked beads and glass
> http://www.dragonbeads.com/
>

[Barbara Otterson]

On 06 Jul 2003 17:54:34 GMT, (Dr. Sooz)
wrote:
>I get frightened when the pain level creeps up to 8 again -- you know, what if
>it doesn't go down, like it didn't for the past year? I know, what-ifs are
>just stupid -- but dang, it's hard not to what-if when you have enough pain
>*already*. It twists everything else in your life. I get really scared. It
>already destroyed my work life, and my marriage, and lost me my dogs full-time.
> Sure, I was married to a creep who was enraged with me for being ill -- but if
>he could be like that, what other, milder versions of that will other, better
>people feel regarding me? It's scary on so many levels.
>~~

OK, been here, done this. Well, except for the creep.
My husband is also disabled, so what can he say?
I have a yet-to-be-named neurological problem that causes
intense pain in, well, everything from my hips down. It started
in my left leg, now it's in both. And not just sciatic, it's front,
sides, back, hips, tailbone, you name it. It got so bad that I
finally set a date. July 4, 2003. My independence day. The
day that I was going to jump off a bridge because I couldn't
take the non-stop pain anymore. It has come and gone. I'm
still here. Why?
I finally found a pain specialist that understood that living
with that kind of pain is not an option. And the fact that
none of the 17 specialists that I saw could find the cause
didn't make it any less painful. Now I'm on a 100mg
Duragesic patch. I change it every 3 days. I also use
vicoden (hydrocodone), when the pain overcomes the
patch. I also have RLS and take a lot of other drugs
when I go to bed at night so that I can sleep. This,
of course, leaves me too exhausted to move during the
day (sound familiar?). Enter Provigil. It's a new drug
developed for narcolepsy. But it has proven very
effective for people with chronic exhaustion due to
poor sleep or a lot of meds. It took some wrangling
to get my insurance company to approve it, but we
got it done. Now I function almost like a "normal"
person. I can drive a car. Work in my studio. I
can even do shows if I have someone to help me
so that I can take a nap if I have to. Also to do all
the heavy lifting.
If you do not have a pain specialist, get one.
Explore the Duragesic patch. Get Provigil. You
will get your life back.
Oh, and anyone who doesn't understand what
pain can do to your life and gets holier-than-thou
about it -- pour some cayenne pepper in their
shorts. When the pain finally stops, ask them
how they would feel if that burning kept up for
months, then years, without ever stopping.
Not even for a minute. If they still don't get it,
throw them off the bridge.
Barbara
Dream Master
www.dreamweaverstudio.com


"Do not spoil what you have, by desiring what
you have not; remember that what you now have
was once among the things only hoped for."

[Jeanne Harney]

On 06 Jul 2003 17:45:23 GMT, (Dr. Sooz)
wrote:

>>NOT neurotonin.....
>>If it is - please give second thoughts to continuing it.... and contact me.
>
>It's neurontin, not neurotonin (I've heard of both before). Uh oh....why? :-(
>~~
>Sooz

Um...let me know too? I've been in a major fibro flare and my doctors
and I are discussing neurontin therapy. I've researched it a little
bit on the fibro groups and it seems to be touted as a miracle drug
for many people

Jeanne
who has been lurking, not posting, because of a LOT of stuff...

[Christina Peterson]

Sooz, You are loved even when you don't go above and beyond. Take care of
yourself.

Tina


"Dr. Sooz" > wrote in message
...
> >So sorry to hear about your pain. Hope the relief has continued.
>
> Sweetie, your words touch me and warm me.
>
> Just to keep everyone abreast of what's been going on, as briefly as I
possibly
> can -- I haven't been keeping it to myself on purpose. It's just been
hard to
> know when to say anything. It's been so unresolved for a long time.
>
> To start with: when Kevin graduated law school in May 2002, it started a
> cascade of events from which there was no respite for me (or for him, but
this
> is about me, me, ME!). Fibromyalgia reacts badly to stress, blah blah
blah. A
> couple of the events were really hard on me physically, mentally, and
> emotionally -- not bad events, but demanding. The damp winter cold in the
SF
> Bay Area made things worse.
>
> The fibro pain, and other symptoms, got gradually worse and worse and
worse. I
> didn't notice it at first, and I had so much going on that I didn't notice
it
> for a long time. Finally Kevin ended up in the hospital himself, with
several
> scary events (including ambulances carrying him away twice). I lost a lot
of
> sleep, really crucial for fibro folk.
>
> About a month after he got better, I noticed I had gotten so bad I wasn't
> getting out of bed anymore -- not because I was depressed (though I was!),
more
> that the pain had completely beaten me and was ruling my every move. I
wasn't
> able to make myself feel better -- I didn't have the energy to do the
necessary
> stuff, but I also was unable to make any difference in the pain. Nothing
> worked. I saw my doctor, who helped with new meds (not painkillers, but
an Rx
> that neurologically prevents pain). The first two months of the Rx made
me
> sleep most of the time. I had to cancel everything.... dentist
appointments,
> haircuts, bead classes, everything -- too hazardous to drive!
>
> It started to help. I was so grateful! Two weeks ago, I reached the full
> dosage of the meds (it takes a couple of months to slowly, gradually
increase
> the dosage to therapeutic levels). Whew. I was starting to lose my usual
> personality; it was rough. I'm now starting to bead, be able to have
Mercury
> for a real visit, get my hair cut again. And my teeth are really clean
again!
>
>
> I had some ups and downs, and serious setbacks, during the gradual
increase of
> the new meds. It was a struggle. The side effects are almost
nonexistent,
> except for the (now past) sleepiness, but that wasn't true at first. The
pain
> fluctuated without warning, and affected my morale a lot. I didn't bring
news
> of it here, because I didn't know what was going on from one moment to the
> next. I was so confused, freaked, afraid, struggling, and really
suffering
> that I didn't know what to say. My memory was totally screwed up (worse
than
> usual) because I was using up all my energy trying to get through the next
half
> hour.
>
> Thanks for the treats anyone sent me during this time. It really helped
me not
> come completely unraveled. I was slow about thanking everyone, and not
> consistent in where I posted or emailed my gratitude. I may even have
> not-thanked someone, or more than one someone. I apologize if I did that.
>
> It's been indescribably awful; I don't know that it's over yet. I'm still
kind
> of in shock. I feel like a different person. It just went on for way too
> long. If I'd known, last May, what I know now, I don't know that I'd have
had
> the courage to put one foot in front of the other. I'm still gun-shy and
not
> up to whatever "normal" is for me.
>
> That's the story.
>
>
> ~~
> Sooz
> -------
> ESBC
> Dr. Sooz's Bead Links
> http://airandearth.netfirms.com/soozlinkslist.html
> One of the advantages of being disorderly is that one is constantly making
> exciting discoveries. ~ A. A. Milne
>

[Dr. Sooz]

Neurontin links I found this morning below. I'm going to ask my Dr. about
this.

Public Citizen's eLetter: Neurontin (GABAPENTIN)
http://www.citizen.org/ELETTER/ARTICLES/neurontin.htm

Neurontin Significantly Reduces Chronic Neuropathic Pain
http://www.pslgroup.com/dg/D6AC6.htm

neurontin
http://www.burningneuropathy.com/neurotin.htm
~~
Sooz
-------
ESBC
Dr. Sooz's Bead Links
http://airandearth.netfirms.com/soozlinkslist.html
One of the advantages of being disorderly is that one is constantly making
exciting discoveries. ~ A. A. Milne

[Deirdre S.]

Sounds hellish. I am glad there is light dawning at last.

Deirdre

On 06 Jul 2003 06:02:43 GMT, (Dr. Sooz)
wrote:

>>So sorry to hear about your pain. Hope the relief has continued.
>
>Sweetie, your words touch me and warm me.
>
>Just to keep everyone abreast of what's been going on, as briefly as I possibly
>can -- I haven't been keeping it to myself on purpose. It's just been hard to
>know when to say anything. It's been so unresolved for a long time.
>
>To start with: when Kevin graduated law school in May 2002, it started a
>cascade of events from which there was no respite for me (or for him, but this
>is about me, me, ME!). Fibromyalgia reacts badly to stress, blah blah blah. A
>couple of the events were really hard on me physically, mentally, and
>emotionally -- not bad events, but demanding. The damp winter cold in the SF
>Bay Area made things worse.
>
>The fibro pain, and other symptoms, got gradually worse and worse and worse. I
>didn't notice it at first, and I had so much going on that I didn't notice it
>for a long time. Finally Kevin ended up in the hospital himself, with several
>scary events (including ambulances carrying him away twice). I lost a lot of
>sleep, really crucial for fibro folk.
>
>About a month after he got better, I noticed I had gotten so bad I wasn't
>getting out of bed anymore -- not because I was depressed (though I was!), more
>that the pain had completely beaten me and was ruling my every move. I wasn't
>able to make myself feel better -- I didn't have the energy to do the necessary
>stuff, but I also was unable to make any difference in the pain. Nothing
>worked. I saw my doctor, who helped with new meds (not painkillers, but an Rx
>that neurologically prevents pain). The first two months of the Rx made me
>sleep most of the time. I had to cancel everything.... dentist appointments,
>haircuts, bead classes, everything -- too hazardous to drive!
>
>It started to help. I was so grateful! Two weeks ago, I reached the full
>dosage of the meds (it takes a couple of months to slowly, gradually increase
>the dosage to therapeutic levels). Whew. I was starting to lose my usual
>personality; it was rough. I'm now starting to bead, be able to have Mercury
>for a real visit, get my hair cut again. And my teeth are really clean again!
>
>
>I had some ups and downs, and serious setbacks, during the gradual increase of
>the new meds. It was a struggle. The side effects are almost nonexistent,
>except for the (now past) sleepiness, but that wasn't true at first. The pain
>fluctuated without warning, and affected my morale a lot. I didn't bring news
>of it here, because I didn't know what was going on from one moment to the
>next. I was so confused, freaked, afraid, struggling, and really suffering
>that I didn't know what to say. My memory was totally screwed up (worse than
>usual) because I was using up all my energy trying to get through the next half
>hour.
>
>Thanks for the treats anyone sent me during this time. It really helped me not
>come completely unraveled. I was slow about thanking everyone, and not
>consistent in where I posted or emailed my gratitude. I may even have
>not-thanked someone, or more than one someone. I apologize if I did that.
>
>It's been indescribably awful; I don't know that it's over yet. I'm still kind
>of in shock. I feel like a different person. It just went on for way too
>long. If I'd known, last May, what I know now, I don't know that I'd have had
>the courage to put one foot in front of the other. I'm still gun-shy and not
>up to whatever "normal" is for me.
>
>That's the story.
>
>
>~~
>Sooz
>-------
>ESBC
>Dr. Sooz's Bead Links
>http://airandearth.netfirms.com/soozlinkslist.html
>One of the advantages of being disorderly is that one is constantly making
>exciting discoveries. ~ A. A. Milne

[Dr. Sooz]

Barbara, I love you. :-D

> OK, been here, done this. Well, except for the creep.
>My husband is also disabled, so what can he say?
> I have a yet-to-be-named neurological problem that causes
>intense pain in, well, everything from my hips down. It started
>in my left leg, now it's in both. And not just sciatic, it's front,
>sides, back, hips, tailbone, you name it. It got so bad that I
>finally set a date. July 4, 2003. My independence day. The
>day that I was going to jump off a bridge because I couldn't
>take the non-stop pain anymore. It has come and gone. I'm
>still here. Why?
> I finally found a pain specialist that understood that living
>with that kind of pain is not an option. And the fact that
>none of the 17 specialists that I saw could find the cause
>didn't make it any less painful. Now I'm on a 100mg
>Duragesic patch. I change it every 3 days. I also use
>vicoden (hydrocodone), when the pain overcomes the
>patch. I also have RLS and take a lot of other drugs
>when I go to bed at night so that I can sleep. This,
>of course, leaves me too exhausted to move during the
>day (sound familiar?). Enter Provigil. It's a new drug
>developed for narcolepsy. But it has proven very
>effective for people with chronic exhaustion due to
>poor sleep or a lot of meds. It took some wrangling
>to get my insurance company to approve it, but we
>got it done. Now I function almost like a "normal"
>person. I can drive a car. Work in my studio. I
>can even do shows if I have someone to help me
>so that I can take a nap if I have to. Also to do all
>the heavy lifting.
> If you do not have a pain specialist, get one.
>Explore the Duragesic patch. Get Provigil. You
>will get your life back.
> Oh, and anyone who doesn't understand what
>pain can do to your life and gets holier-than-thou
>about it -- pour some cayenne pepper in their
>shorts. When the pain finally stops, ask them
>how they would feel if that burning kept up for
>months, then years, without ever stopping.
>Not even for a minute. If they still don't get it,
>throw them off the bridge.
>Barbara
>Dream Master
>www.dreamweaverstudio.com
~~
Sooz
-------
ESBC
Dr. Sooz's Bead Links
http://airandearth.netfirms.com/soozlinkslist.html
One of the advantages of being disorderly is that one is constantly making
exciting discoveries. ~ A. A. Milne

[Dr. Sooz]

>Sooz, You are loved even when you don't go above and beyond. Take care of
>yourself.
>
>Tina

~blubber~ ~sniff~
~~
Sooz
-------
ESBC
Dr. Sooz's Bead Links
http://airandearth.netfirms.com/soozlinkslist.html
One of the advantages of being disorderly is that one is constantly making
exciting discoveries. ~ A. A. Milne