Online Blog

Hi Jaci,
I am no sure about much of this. I have been searching endlessly
about this, and am just finding things that say the company is in
development of product to relieve intractable pain. ugh. I'm so
impatient about this. I am going to call my surgeon's office
tomorrow and see if there is anywhere he can direct me or send me
before I go to this teaching session I am supposed to attend.
I also am going to e-mail the company and see if they have any
answers or something to send.
About recharging the battery, i jokingly asked my doc "Gee, would I
be like my cell phone, plugged into an outlet recharging , sitting
next to the wall?". He said no, but then how on earth does it
work? He said it was place over the area where the implanted battery
is in my body. Then again, I may be wrong, it was a little
blurry. Not confusing, just like i say, still taken off guard. I
didn't even THINK to ask about how the others that they've done have
been working out. (they've done a small number of them)
I do wish I'd had more of my wits about me. I was his last
appointment on Friday. He had no info to give me, he works at two
diferent branches of the Texas Back Institute. I guess what he has
is at the other place. I don't think he was expecting me to be a
canditate. He spent a lot of time with me, but I was so taken off
gaurd (and disappointed that I would not have the stimulator for a
longer amount of time, even though this was my choice, but still, I
knew it was helping me, but i know even more so after going through
this weekend without it) (he said I could still, but after he brought
this up, a lot of time was spent talking about how the electodes work
differently than Medtronic,the control I'd have, etc. I was also a
little overwhelmed about what sounded like such a whole better deal,
I'm surprised I had the wits about me to even ask what I did to begin
with. My grandmother was with me. I'm going to call her and see if
she remembers what he said about the battery. (while waiting for the
doctor to call me and any other info)
I don't want to be so desperate for relief that I jump into this too
quickly. Although I've said I want to go through with this, i can
always change my mind
I hope to find out soon when the surgery is.
When I find out more about this, I'll definitely let you know.
So you actually have 3 batteries at once? wow. is it something that
is bothersome or that is super noticeable to you? Are the three
the largest sized ones? I didn't even know about having more than
one battery at once. I take it that it is very helpful for you? Do
you have multiple areas of pain, and have both leads? Are you like
me and require a very high degree of stimulation to get effective
pain relief?
I'm sorry you have to go through so much. I wish they could do the
surgeries at once. It would be wonderful if this turns out as good
as it sounds, so that one day you wouldn't haave to go through so
many surgeries.
I hope you have a good week, and a comfortable one at that.
Jody

I cannot give you solutions
to all of life's problems,
doubts, or fears.
But I can listen to you,
and together we will
search for answers.

I cannot change your past
with all its heartache and pain,
nor the future with its untold stories.
But I can be there now when
you need me to care.

I cannot keep your feet
from stumbling.
I can only offer my hand that
you may grasp it and not fall.

Your joys, triumphs, successes,
and happiness are not mine;
yet I can share in your laughter.

Your decisions in life are not mine
to make, nor to judge; I can
only support you, encourage you,
and help you when you ask.

I cannot prevent you from falling
away from friendship, from
your values, from me.
I can only pray for you,
talk to you, and
wait for you.

I cannot give you boundaries
which I have determined for you,
but I can give you the room to
change, room to grow, room to
be yourself.

I cannot keep your heart
from breaking and hurting,
but I can cry with you and help
you pick up the pieces
and put them back
in place.

I cannot tell you who you are.
I can only love you
and be your friend

~ ~ ~ ~
"May the Lord be as welcome in your world as you are in His."

"The price of hating other human beings is loving ones self less."

Visit us:
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Pat, you can put me in the bad back group too, 18 herniated discs, that is what OR nursing 20 yrs. did to mine. All of the thorsic + 5 between the cervicial and lumbar, many bilateral. The doc finally put me on the fentenal patches, what a help, not only for the RSD pain, but the general back pain too. I have many of the systemic problems Debbie has too. I also have had 2 heart attacks, COPD,asthma, RA, IBS, my RSD started after surgery for tennis elbow and having a too tight cast. Right now I have the flu again, for the 2nd time, so much for flu shots, lol, will write more later. Love & huggs, Lynda

Jody
Good luck with your scs. I have a question for you about the Bionics
SCS. Do you know how often you have to recharge the battery and what
you have to use and or do to recharge the battery. The reason I am so
interested in this is because medtronics has had a rechargeable battery
now for a while but has not used it because you would haved to recharge
it every day for at least an hour it might be two and you would be
stuck near an outlet sitting the whole time. I think there were some
other reasons that I don't remember
So they decided not to use it. I am very interested in this as I have
three medtronics batteries in me and have to undergo surgery to change
the batteries every two years and unfortunately not at the same time.
Thank you for you help.
I hope this works this for you and you get the relief you so
desperately need. I will be thinking of you. Good luck once again!
Let me know when the surgery is!
Oh yeah you husband sounds like my brother - I'm lucky he doesn't live
here or I'd have to deal with him playing around with my computer all
the time. Every time he comes to visit by the time he leaves my
computer end up with with 20 different things on it and everything is
supposed to be better!!!
Jaci
.

Cream scones
2 cups all-purpose flour
1/4 cup granulated sugar
2 teaspoons baking powder
1/8 teaspoon salt
1/3 cup butter, chilled (real butter, margarine won't do)
1/2 cup heavy cream
1 large egg
1 1/2 teaspoons vanilla extract1/2 cup currants (optional)
1 egg mixed with 1 teaspoon water for glaze (optional)
preheat oven to 425. lightly butter a baking sheet.
stir together dry ingrediants, cut in butter. In small bowl, mix together moist
ingrediants and add to flour mixture. Stir in currants.
with lightly floured hands pat dough into a 1/2 inch thick rounds on a prepared
baking sheet. Lightly brush
on glaze. Bake for 13-15 minutes or until lightly browned.
Gingerbread Scones
2 cups all-purpose flour
1/3 cup firmly packed brown sugar
2 teaspoons baking powder
1/8 teaspoon baking soda
1/2 teaspoon ground ginger
1/2 teaspoon ground cinnamon
1/8 teaspoon ground cloves
1/8 teaspoon ground nutmeg
1/2 teaspoon salt
1/3 cup butter, chilled
1 large egg
3 tablespoons molasses
3 tablespoons milk
1 teaspoon vanilla extract
1/2 cup raisins (optional)
preheat oven to 375. lightly butter baking sheet.
Stir together dry ingrediants, cut in butter until crumbly. Mix moist
ingrediants in seperate bowl. Stir into flour mixture. Stir in raisins. with
lightly floured hands, pat dough into eight rounds on sheet. Bake for
approximately 20 minutes.
Date Nut scones
2 1/4 cup all-purpose flour
1/3 cup firmly packed brown sugar
2 1/4 teaspoons baking powder
1/2 teaspoon salt
1/2 cup butter, chilled
1/3 cup milk
1 large egg
1 teaspoon vanilla extract
1 package chopped pitted dates
1/2 coarsely chopped walnuts (pecans work too)
1 egg yolk mixed with 1.2 teaspoon water for glaze (optional)
preheat oven to 375. Stir together dry ingrediants. Cut in butter. Mix moist
ingrediants in seperate bowl. Stir into flour mixture. Knead in dates and nuts.
Wiwth lightly floured hands, pat dough into 8 rounds on baking sheet. Brush
with glaxe. Bake for 25-30 minutes.
==
agape,
Christy
Proverbs 31:13 She seeketh wool and flax and worketh willingly with her hands.
My favorite bible verse:
1 Corinthians 1:18 For the message of the cross is foolishness to those who
are perishing, but to us are saved it is the power of God.
AIM user name: crochetin4Christ
http://www.geocities.com/christybritain/index
http://www.geocities.com/britainchristianacademy/indexofstudies.html

I am at the end of the trial.
I don't have much time right now, but plan to respond to your replies
and questions
this weekend. Of course, as soon as I post to a new board, our
internet went on vacation. That is, my computer programming husband
likes to play with our computers, and sometimes the play end in a
tantrum. hopefully the problems are fixed.
The trial went pretty well, except for the not so common pain I had.
Something about they had a hard time getting into my epidural space.
I have questions regarding it, and will ppost more about it (when I
should not be in bed, lol) but I did have a quick question about
another brand of stimulator.
Today the trial leads were taken out.
My doctor offered me to be in a research study (redundant, lol) for a
new SCS made by the company Advanced Bionics. This device is still in
the trial phase. Reasons: the amount I was using it was high enough
he thought I would have to have a low battery life, even with the
largest one. I really had to get that thing high to get coverage.
That, my pain complexity, and the limitations of the programmer I
would have with the permanent one. (I was instructed how to use the 4
electrodes, and manipulate the pulse width. They did that, due to
the complexity of my pain, and multiple areas of pain.
This is at the Texas Back Institue. There has been only a couple of
them done in the study so far. According to my surgeon, (although he
did not push it in any way) he brought it up for the reasons I
listed. I was still given the option of the Medtronic, but it
sounded like this other had so many benefits that would suit me.
Has anyone ever heard of the Advanced Bionics Stimulator. According
to their website, their current types of products are for hearing and
urinary incontinence. They're developing an SCS.
I agreed, and will start the protocol of teaching, and hopefully,
sooon, would start with the procedure. I am not sure if I would
have to go through another trial, but he gave me the impression I may
not have to since the SCS was helpful to me.
Oh, one of the bigger pros of this one, is that although you have a
permanent battery implanted, it can be recharged by attaching another
device on the area of the body where the battery is. Sounded like
how the RF stimulator works, but you don't need to wear anything
external during use, just while the battery is recharging. That's
the only time a person would have to wear anything external.
I most definitely liked the idea of not having battery replacement
surgery.
Another thing is that there are 8 electrodes on each single lead, as
opposed to the 4 in medtronic's.
I asked him about the ANS brand stimulator, but according to him, the
other would fit my needs better.
So i was just wondering if anyone has heard of this brand or has one,
and if so, do you know anything about it?
I hope I made the right choice to take part in the study. Half of me
feels very very lucky to have come across this doctor after years and
years of awful ones. The other half is going "egads, it's a study.
not one that has been around for awhile". I can always change my
mind, but went with my gut on this one. Hope my gut is right ;0
I am already missing having the stimulator from the trial. Big
time.
Well, so much for that so-called quick question.
That's one thing about me you'll find out, I tend to be long winded.
And i am lucky that I do not have any problems with pain in my hands
or fingers, and usually type faster than I think.
Hoping you all are feeling ok, and again, thank you for your welcome
to this board, and if I don't get back here this weekend, you have my
permission to wring my husband's neck.
Jody
(who should have been in bed hours ago to get ready for my 4 yr old's
birthday party. Thankfully I have family that drove in to help.)

Dear Stimulator Group,
I hope that you are all doing ok with your pain. Please let me know
if there is anything that I can do for you. I check the group to see
postings so that I can help in any way. You may private email me if
you need some information on stimulators or Mike even. We are hear
to help you and support you in any way we can.
Take Care
Holly Ut. Stimulator/Group Moderator

Sorry I have not been able to keep up w/posts,I try to read and keep up as much I can when I get in from work or in the morning,but seems the brain dont function well enuff to reply!!

Anyhow,for now I am second shift again,which I like since I am nite owl anyhow,and cant seem to keep functioning w/ the 5 am wake up call for more then day or 2<which was why 6 weeks of training was murder on me...how I survived was beyond me!

Jeff popped in for a day and 1/2 to see girls<funny about working at truck stop,he cant slip in any more!

Got the approval last week to fix car,so I now have new rearend on car/bumper and paint job.Today the front bumper is being repaired and new headlights.I had to put new brakes/rotors on and new starter....LOL-soon car will be brand new!! <as long as no one wipes it out in parking lot again!

Still having huge issues w/ back,they now feel the RSD has moved into back,everything is painful even wearing bra,feels like there is massive rash there,but there isnt-also have nasty lump I can feel when I sit or lay down.muscle relaxers do nothing,pain meds barely touch it...thinking my working days are numbered again anyhow...

Well hope everyone is well,good to see you all posting ...have to go get things ready for later for kids...

Luv to all

Sandy

Jody
Sorry it took me so long to get back to you I just got you letter. I
was wondering if you had made your decision yet or if you still wanted
to hear from other people. If you haven't decided whether or not if
you are going to have the surgery or want to hear about my experience
let me know. Good luck with what ever you decide
Jaci

Hi Debbie,

Thank you for the welcome. I have met a lot of RSDers that were in the medical field. I was a Respiratory Therapist. I had to give that up and then was an escrow officer until I couldn't do that any longer.

I always hate to hear of people with spine problems. I have had a bad back since I was 15. I injured it in gymnastics in school but I had birth defects that we didn't know of. I have had 7 neck surgeries and one lower back with at least one more to go. I have a cyst on L4-5.

I hope you are doing well and your hubby too. Please feel free to add me to your BL and IM anytime.

Hugs Pat CA

Hi Jody,
I received my implant in march of 99.
I seriously think it was the best decision of my life! I too had upper back, rib
and chest pain. And I'm talking excrucuating. I literally would have cut off my
left hand to get rid of the pain. Tried the pain clinic thing, which was ok but
I was on constant narcotics, which didn't leave much of a quality of life.
Anyway, I found my N.S. and he actually changed my life. I'm definately not
saying the pain is gone, but i went from a 8-10 pain level every single day,
down to something I could actually manage and live with. I also still work in a
very labor intensive job. (heavy lifting, pulling, pushing, etc.) It may not be
for everybody, but I couldn't imagine life with out my stimulator!
Good luck with whatever you decide and if you need some questions answered,
please don't hesitat to ask.
Jim

Hi Sandy

I'm happy to be here and so glad that you are here too. I know working is not always easy for you. You are a strong woman and I know you will make it through. How are the girls doing?

Hugs Pat CA

--- Hi Jody,
Welcome to the group I hope that you will be able to feel that you can
get the support that you need here. How has your pain been since you
have had the trail compared to before??
I had the trial be a success for me my pain from nerve damage from
have had a teathered spinal cord. It went from 8-10 to 0-1 I felt
better than I had in years. I had an implant put in after that which
helped until one of the leads moved. Than I had revisions of leads.
Right now I am in the appeals process with my insurance to get the
Medtronic System. It's my only hope for pain relief due to the
allergies that I have or bad side effects from pain medications.
If you have any questions feel free to ask one here we are all here to
help each other.
I hope that you are getting the results that you need. If you need
anything just ask. I am willing to help you with in concerns or
questions you might have about the stimulator.
take care
Holly Ut. Group Moderator

Pat

Glad ya joined us over here,know you will like the ladies here....

how ya been doing? been crazy working here,but switched to 2nd for few weeks ,which somehow is easier on my body since mornings are rough coz I dont sleep.....

luv ya

Sandy

Karen:

Renee will be in my prayers.

I started my new job yesterday (Monday). I am training to be a technical support person. My seat is under the AC duct. The cold air blows right down the back of my neck. I am not usually one to freeze, but I am seriously considering taking a sweater with me.

My hours are from 4:30 PM until 1:30 AM. That means that I get home around 2:30 AM. Tonight it is chilly (in the forties) and it was foggy.

Everyone please say a prayer for me before you go to bed that I will be alert until I get home.

This is not my permanent schedule; I will be getting that on the 16th. It could be better or worse but we have been told we will get our two days off together

Even if the majority agrees with an idiotic idea, it is still an idiotic idea.
Mary J

I am very happy to this site. I am in the middle of my trial, and am
very interested in reading the posts here. I feel like I'm having a
very hard decision to go ahead with the implant. I'm hoping even
just reading your experiences will help.
I have currently a single lead Medtronic for thoracic pain due to
unhealed fractured ribs. They never healed (and broke for no
apparent reason), and have formed rather large fibrous lumps. So I
have side and back pain where the ribs join the spine.
I also have upper back pain from herniated discs,(t-5 and 6, and t6
and 7).
After a horrible horrible experiece in the trial, we just got the mid
thoracic area covered.
I am supposed to have my leads removed on Wednesday, and if i want to
go ahead, have the implant surgery the following wednesday.
I was told that since i well be awake during the beginning of the
surgery, we can try to reach the upperback again, during the
reinsertion of the leads.
So, I hope you all don't mind my joining and saying hi.
jody

Holly,
I am so sorry to hear that you fell on Monday. How are you feeling?
Has there been any improvement? Are you still on the crutches? I hope
your ankle isn't causing you to much pain and you are back on two feet
soon.
I'm also sorry to hear that you are under so much stress because of
your case. I wish you insurance company would smarten up and approve
the surgery already. If there is anything I can do or you ever need
someone to talk to let me know.
I hope you are up and around soon and feeling better!
Jaci

Christy, I know that you did what you needed to do and what you thought God
was telling you. I am sorry that you didn't think that it would work out.
They will find a home for the baby and I am sure this was the right decision
for you.
Bless you and your family
Dorothy

Wouldn't you know as soon as I posted the welcome message in the actual group the email went through this time around LOL. So disregard one or 2 of them anyway LOL. I think my message got through finally. Ok now I am off to bed. Night or Morning all.

Debbie

---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.596 / Virus Database: 379 - Release Date: 2/27/04

Jayne, could you give me Hunter's date of birth and the time, if you have it?
I have a friend on another list that would like to make a memory quilt for
him. She is just the sweetest lady and very generous. When I mentioned that
I was crocheting this weekend while at my daughter's pageant, she asked what
I was making. I told her that I was making an outfit for a newborn and I
told her the circumstances and she wants to make something for him to.
Thanks,
Dorothy

Hello NIKROTT,

In reference to your comment:

Welcome Pat to the best online RSD group on the Internet. I have known Betty and Lynda for several years now. My name is Debbie and I live in Texas with my husband of 26+ years. We have 2 daughter's the oldest will turn 30 on the 21st and the youngest is 25. I am a walking medical nightmare with many problems other than my RSD which started from a work injury where I fell and blew out both knees so badly they both need to be replaced. My RSD is systemic and affects bother lower extremities fully from my lower back to the tips of my toes plus my bladder, kidney's and now my left arm. I fell in 1988 and broke my neck and that ended my RN career. I spent 3 yrs. rehabbing my let arm to use it again and went to work along side my husband in his General Contracting business. I was able to work from home and it was great. Besides my RSD I have numerous problems due to my broken neck with nerve damage in my arms, hands, neck, shoulder and face. I have a compromised
immune system due to bone implant rejection and have been on steroids since 1989 and will for the rest of my life. I also have asthma, IBS, Diverticuloses, Hiatal Hernia, GERD, acid reflux, Pelvic adhesions, Atrial fibrillation, high blood pressure due to vessel constriction caused by my RSD in my legs, migraines, Avascular necrosis, plantar Fasciitis both feet, muscle atrophy both legs, lumbar Radiculopathy, cervical myofascial pain syndrome, and some more. I have both an implanted Pain Pump and Spinal Cord Stimulator. I have seen the other side of life 3 times now but God brought me back each time for a reason. There are a few of us around who have worked in the past in the medical field and can help somewhat in some answers as far as what names mean and so forth. I myself will not give medical advice only suggestions but everyone should always check with their Dr. before making any changes at all to their regimen. My husband has a severe bad back with 5 Thoracic
disc herniations and 2 lumbar, spinal stenosis, Degenerative Disc Disease and 7 old compression fractures. He understands my pain all to well and helps me as much as he can. We live on acreage backing up to the National Forest and love it here in the woods. I am a huge animal lover and have 3 dogs now down from 6. We sold the cattle as we were unable to work them ourselves and put out feed for 62 head of cattle not to mention the cost of every soaring feed prices. Hope you like it here among us and feel free to email me anytime you like. I am the late nighter person so look me up if you like. [INLINE] [INLINE] [INLINE] [INLINE]

Dear Group,
I hope that you are getting the care that you need from your
doctors. It`s great to see you posting and giving each other
support. I am sorry I havent posted much the stress of my case has
been on my mind alot more than I think it should.
I fell monday night sprained my ankle the pain isnt letting up so I
am going to the doctor today. I will have to use crutches cause of
my back cant stand the way that I am walking.
Please let me know if there is anything that I can do for you all I
really care about how you are doing and what you are going through.
take care
Holly UT. Group Moderator

Oh what an emotional day for all of us!!!!!
yes, then no, then yes again....now it's no. Only, my hubby doesn't know yet.
We talked, we prayed..but I was so excited I couldn't hear what the Lord was
saying. The kids were okay with it, but only lukewarm..that should've been a
hint.but, no, I'm so thickskulled! Hubby came home from his lesson and said he
thought the Lord was telling him 'no'. Wel,, I talked him out of that real
quick! So, he called and left a message for the social worker, and she called me
back. We talked for a while....ended the conversation that the baby would be
here Thursday night. Then, she called back, and said it wouldn't be until next
week, the hospital was keeping the baby longer. After I spoke to her the first
time, something just didn't feel right. After the second time, I knew. This
baby was not for our family. Oh how I would've have loved to have aninfant.but
when the urgency was gone, then excitement gave way to reality, and then I knew
for sure, this was not meant for us. I could even tell that they kids were
tense. I went in the back room and called her back, leaving a message that this
was not the place for the baby. I told her we would keep the baby and the
parents in our prayers, but that I knew in my heart that God's will was not for
the baby to come here. I went out and told the kids......and their welled up
with tears and they looked as though a huge weight had been lifted on them.
They were tearful because they were relieved! I squeezed Emily and told her
that she was the only princess God meant us to have, and I told Ryan that he was
the baby of the family, and Avery looked like he was gonna burst....
these two boys have been so abused and neglected that developmentally in some
ways they are babies! So, now I have to tell my hubby. I know he would have
wanted me to give the social worker as much notice as possible...so, I know he
will support how I handled this. I couldn't get a hold of him.
so, thus ends the saga of the possible infantile additon to our family through
foster care........
==
agape,
Christy
Proverbs 31:13 She seeketh wool and flax and worketh willingly with her hands.
My favorite bible verse:
1 Corinthians 1:18 For the message of the cross is foolishness to those who
are perishing, but to us are saved it is the power of God.
AIM user name: crochetin4Christ
http://www.geocities.com/christybritain/index
http://www.geocities.com/britainchristianacademy/indexofstudies.html

TO ALL - THIS IS VERY, VERY IMPORTANT: Please take a moment of your time to
read this and fill out this form on the link and forward to GOOD HOUSEKEEPING.
This pertains to millions and millions of Americans. Some countries do have
tracking on implants but not here in the good old USA.
I read an article in the March, 2004 edition of GOOD HOUSEKEEPING and found that
there are NOT recalls to inform patients of any medical recalls on implants such
as heart valves, hips, lens implants, heart stents, artificial knees,
pacemakers, etc.
25 million Americans have implants and many million more will be getting them in
the future.
Please take a moment of your time to fill in this form from Good Housekeeping to
ask for federal help in setting up a database to notify patients of medical
implant recalls.
Please forward on to everyone you know....... THANK YOU!
They track cars for recalls by the VIN numbers, but not humans......something is
wrong with this!!! Yes, I have one and know of other people with implants such
as pacemakers, heart stents, hip and knee replacements, etc..... most of us know
at least one person that this applies to....it may be a parent, friend,
neighbor, co-worker, etc. but it effects many, many, many people. My implant
(and I'm sure most do) has a serial number and could have easily been tracked if
a recall was to come up on it. However, there is no database to do this
currently in operation.
You can also find a link to the copy of the article from GOOD HOUSEKEEPING on
the link.
THANKS!
Deb Courter Brennan

First I want to let Betty and Lynda know I was not able to send this
to the email address. I had to physically come to the group to send
this message for some reason. I do not know if all the settings are
set already or if they rolled over from the last group name or what
but If found this strange.
Welcome Pat to the best online RSD group on the Internet. I have
known Betty and Lynda for several years now. My name is Debbie and I
live in Texas with my husband of 26+ years. We have 2 daughter's the
oldest will turn 30 on the 21st and the youngest is 25. I am a
walking medical nightmare with many problems other than my RSD which
started from a work injury where I fell and blew out both knees so
badly they both need to be replaced. My RSD is systemic and affects
bother lower extremities fully from my lower back to the tips of my
toes plus my bladder, kidney's and now my left arm. I fell in 1988
and broke my neck and that ended my RN career. I spent 3 yrs.
rehabbing my let arm to use it again and went to work along side my
husband in his General Contracting business. I was able to work from
home and it was great. Besides my RSD I have numerous problems due
to my broken neck with nerve damage in my arms, hands, neck, shoulder
and face. I have a compromised immune system due to bone implant
rejection and have been on steroids since 1989 and will for the rest
of my life. I also have asthma, IBS, Diverticuloses, Hiatal Hernia,
GERD, acid reflux, Pelvic adhesions, Atrial fibrillation, high blood
pressure due to vessel constriction caused by my RSD in my legs,
migraines, Avascular necrosis, plantar Fasciitis both feet, muscle
atrophy both legs, lumbar Radiculopathy, cervical myofascial pain
syndrome, and some more. I have both an implanted Pain Pump and
Spinal Cord Stimulator. I have seen the other side of life 3 times
now but God brought me back each time for a reason. There are a few
of us around who have worked in the past in the medical field and can
help somewhat in some answers as far as what names mean and so
forth. I myself will not give medical advice only suggestions but
everyone should always check with their Dr. before making any changes
at all to their regimen. My husband has a severe bad back with 5
Thoracic disc herniations and 2 lumbar, spinal stenosis, Degenerative
Disc Disease and 7 old compression fractures. He understands my pain
all to well and helps me as much as he can. We live on acreage
backing up to the National Forest and love it here in the woods. I
am a huge animal lover and have 3 dogs now down from 6. We sold the
cattle as we were unable to work them ourselves and put out feed for
62 head of cattle not to mention the cost of every soaring feed
prices. Hope you like it here among us and feel free to email me
anytime you like. I am the late nighter person so look me up if you
like.
Debbie
Nikrott@...

Hi Lynda.

Thank you for the welcome. I hope that you and your family are doing well.

Hugs Pat CA

Holly,
Good luck with the conference call. I can't believe that they denied you
appeal letter. I never understand these insurance companies. They just don't
understand. Some times I would just like to make some of the people who are in
charge of the approval process spend a few hours in our shoes and then have them
deny the stimulators. I hope you have better luck with the conference call.
Keep me informed.
Jaci
On Thursday, February 19, 2004, at 11:23AM, hollym262002

LOL Christy...I was just signing off to go take my shower! And yesterday was when I prayed (in the shower) about the pennies being like the widows oil...ANYway... LOL I will get in the mindset of prayer and pray for you this afternoon.

~Karen

In a message dated 7/12/2005 6:18:04 PM Pacific Daylight Time, mcnrsd@... writes:

hi. wlecome to the group again. how old are you two daughters? and how old are you 9 geandchilder? how did you youger daughters get rsd? hope you have a good ngith. hope you have a pain free night too. talk to you laster.

anna.

Hi Anna,

My daughters are 32 and 34 and I'm 54. They are not sure how my yooungest got RSD. My Grandchildren range in age from 1yr to 16yr.

I hope you have a good evening and great day tomorrow.

Hugs Pat CA

hi all!
I am requesting prayer for our dear sister Diane (DMPANARO or Kickstarmom) who
lives with FMS and lupus. She is having a flare right now, and is also
experiencing a new (and rather odd) symptom....in that a finger on her right
hand is not only paralyzed, but stuck in the 'point at her palm' position. It is
not only awkward, but severly hampers her ability do many things. Please add
her to your prayer list.
==
agape,
Christy
Proverbs 31:13 She seeketh wool and flax and worketh willingly with her hands.
My favorite bible verse:
1 Corinthians 1:18 For the message of the cross is foolishness to those who
are perishing, but to us are saved it is the power of God.
AIM user name: crochetin4Christ
http://www.geocities.com/christybritain/index
http://www.geocities.com/britainchristianacademy/indexofstudies.html

I have a very urgent prayer request...urgent because we need to make a decision
within a matter of hours!
Here' the scoop......I am 33, have fibromyalgia....have a 10 year old daughter
from my previous mariage, Rob and I could not have children. We are in the
process of adopting 2 boys, ages 8 and 9. I homeschool all 3. The social worker
just called, and wants to place a 5 DAY old preemie with us..for concurrent
planning. Meaning she is not available for adoption right now, but she
proabably will be. Mom has already had parental rights on one child taken
awway. She is a habitual poly drug user.
I am not worried about the fibromyalgia, because I KNOW that God will give me
the ability to do this, if it of Him. I just want to make sure I am listening to
God, not just my heart. (MY heart of course is going all goo-ga ga at the idea
of a baby girl!!) I just want to make sure I am hearing His will, and that is
what I would like prayer about.....we need to call her back in a few hours.
I am off to shower...God talks to me mostly in the shower..perhaps it is that I
listen better in the shower :-)
thanks in advance!
==
agape,
Christy
Proverbs 31:13 She seeketh wool and flax and worketh willingly with her hands.
My favorite bible verse:
1 Corinthians 1:18 For the message of the cross is foolishness to those who
are perishing, but to us are saved it is the power of God.
AIM user name: crochetin4Christ
http://www.geocities.com/christybritain/index
http://www.geocities.com/britainchristianacademy/indexofstudies.html

Hi everyone,
First I would like to welcome the new people to the group I hope
that you all will enjoy this support group. I am glad that Mike took
time to make this group for people with spinal cord stimulators and
those that are in process of getting one or even a new one. Please
feel free to post your feels that you are going through good and bad
days. Also the stress`s that come with it. Just make sure that you
keep it clean in language.
I called my insurance and I am getting a denial for the appeal
letter that I sent and my doctor. Our next step is conferance
calling with the insurance doc`s. My surgeon is suppost to call me
soon. I left a message for his office to have him do so yestorday.
Well I hope that all of you are doing ok if not please let the group
and I know. I do realize that pain is hard to deal with but if we
can keep a postive mind on treatment and life. We can handle our
pain alot better.
take care everyone
Holly UT.
group Moderator

In case someone may have tried to go to the room in the past few minutes *blush* it wasn't there but it is now. I just saved it. LOLOL!!! I had it together in front page and forgot to click OK to save. but it IS there now and I AM in the chat now. LOLOL

~Karen

[INLINE]

[INLINE]

Hello everyone
Hi guys. I just wanted to say hi to you all and let you all know that I
have a new e-mail address. My old address was Jaci81@... and my new
one is Jacid@... I have been trying to post now for a while but have been
unable to. So I changed my e-mail address. Hello to all the new people I look
forward to meeting you. Thank you Holly for all your help in trying to figure
out why I couldn't post. I hope everyone is doing well.
Take care
Jaci

Marcia,
Welcome to the group and nice to meet you. I am Jaci. I am sorry to hear
that you have RSD. I too am a fellow suffer of RSD - I have it in my rt. ankle
up to my knee. It is from nerve damage and surgery. I can definitely
understand why you are nervous to have the scs done. Any surgery after RSD is
always scary. I have had good experiences with the spinal cord stimulator and
the 2 peripheral nerve stimulators (the peripheral nerve stims are like the scs
but done on specific nerves in the leg that I have had done. I have had no
problems with my RSD spreading from either of those surgeries. I also know 2
other girls who had SCS done who also have RSD. Neither one of them had any
problems with their RSD spreading. That is my experience with the scs. If
there are any other questions you have let me know.
Jaci

Dear ones, I would like to invite you to my site to chat if you'd like... it's at www.nibletsnook.com/chat.html I would very much like to have a regular time there

I also have a board I'm setting up and I'd like to invite you, Christy, to set up there to have a bulliten board for the group. My AIM has been locking up my computer a lot (not always, but often).

I'm heading to my chat room...my girls are having their quiet time/reading time so I may have to pop out to pray/tuck in...but I'll be back. If I'm away, I'll change my name to Niblet-brb or something ok?

See you in a bit.

~Karen

alright.....I've been trying for over a half an hour now to get in to the
blankety blankety chat room....
do you know what I think? I think chat rooms are just not good
ideas!!!!!!!!!!!!!
forget chatting in the chatroom...now I know why most lists don't use it!
Anyone who wants to chat....please just beep me! AOL username is
crochetin4Christ. Email me if you want to know how to get, or how to use AIM.
thanks.....
==
agape,
Christy
Proverbs 31:13 She seeketh wool and flax and worketh willingly with her hands.
My favorite bible verse:
1 Corinthians 1:18 For the message of the cross is foolishness to those who
are perishing, but to us are saved it is the power of God.
AIM user name: crochetin4Christ
http://www.geocities.com/christybritain/index
http://www.geocities.com/britainchristianacademy/indexofstudies.html

Hello I am new to the group, I have bilateral RSD started in the rt
ankle after a torn achilles with surgical repair then the RSD begain
and spread up my leg to my knee and I have the exact miorror image
on the left, my dr is now suggesting the spinal cord stimulator and
I have done a lot of research I would love to hear from people who
had one implanted for RSD with either negative or positive results.
Since my RSD came after surgery I am very reluctant to have any type
of surgery if the trial was successful. Any ijnformation would be
greatly appreciated Thank you, Marcia

am having difficulty getting the chatroom to load for me..........I am
trying!!!!!!
It's 5:45 pacific right now..I'll keep trying!
==
agape,
Christy
Proverbs 31:13 She seeketh wool and flax and worketh willingly with her hands.
My favorite bible verse:
1 Corinthians 1:18 For the message of the cross is foolishness to those who
are perishing, but to us are saved it is the power of God.
AIM user name: crochetin4Christ
http://www.geocities.com/christybritain/index
http://www.geocities.com/britainchristianacademy/indexofstudies.html

Dear Father, we come to you today to seek the truth in your Word. We ask for
discernment and understanding, and that the truth would be shown to each of us.
We ask that it will be used to guide us, reassure us, comfort us, and edify us.
Father, we thank you for your Word, and for the freedom we have in this country
to read it, and to worship you openly. We do not know the persecution of the
early church, or even the church of today in other countries around the globe.
We thank you Father for all our blessings, we give you the glory and the honor,
in the holy name of Christ Jesus. Amen.
1 Corinthians 15:1-19
As you read, consider:
According to Paul, what are the most important elements of the gospel?
Why do you think that Paul puts such emphasis on Christ's resurrection
appearances?
What are the consequences IF there is no resurrection?
Why are these consequences so closely connected to the resurrection- especially
to Christ's resurrection?
==
agape,
Christy
Proverbs 31:13 She seeketh wool and flax and worketh willingly with her hands.
My favorite bible verse:
1 Corinthians 1:18 For the message of the cross is foolishness to those who
are perishing, but to us are saved it is the power of God.
AIM user name: crochetin4Christ
http://www.geocities.com/christybritain/index
http://www.geocities.com/britainchristianacademy/indexofstudies.html

Good Morning Gourp,
I am still in progress for my new stimulator system. My doctor is
helping me fight for it. I am in a lot of pain more than I can
handle. He listed off some drugs the other day and I am allergice to
them all. I feel that this is a trail of pain and patients with my
insurance to win this surgery.
I hope that you are all doing well and if there is anything that I
can do. You may email me anytime I will do my best to get back to
you fast.
take care all
Holly UT.
group moderator

Hi Pat, welcome to our newly named group. My name is Lynda, I believe
we have met before, so this is a hello again and so glad to see u
here!! I hope u are doing well, and again welcome to our warm and
comforting group. Love & huggs to u, Lynda

To those that are new and havent posted yet. Please feel free to
tell us about you so that we can get to know you. Also those that
havent posted in a while if you could let us know how your doing.
This group is here to support all of you in any way possible. Mike
and I are here to be a support and if you need information we can
get that for you in where you can find information about stimulators.
Best wishes to all!
take care
Holly UT. Moderater

Hi Anna,

Thank you so much for the welcome to the group. I know what it is like to be your age and miss school.

When I was in 7th grade I had a major surgery and was out a lot and then in 9th grade I injured my back and missed the last half of that year of school. I had to be home schooled and was in the hospital for 2 months.

You will be in my prayers as I know how hard it is to deal not just with the pain but being behind in school and also peer pressure. I think that you are a very strong and couragous young lady.

Hugs Pat CA

Thank you, Jayne!
What a great resource!!
I'm going to use this and post it on my health pages of my site! *mwah* *grin*
~Karen

Hello Everyone,

My name is Pat and I live in So California with hubby of 36yrs. We have 2 grown daughters and 9 Grandchildren. Our youngest also has RSD and our oldest right now is in a custody battle with her ex.

I have had RSD for 8yrs from a neck surgery. It is in my rt. hand, arm, shoulder, neck upper back and legs. I also have Fibro, acid reflex, mitral valve proplapse, osteoarthritis of the spine. My whole neck is fused and have had lower back surgery as well.

I love to cross stitch but don't do a lot of it anymore due to my arm. I love to go camping in our motorhome. I grew up tent camping but couldn't do that anymore. I love anything outdoors, I do water exercises and go to curves. I love to read and also collect angels.

I'm excited to be here and looking forward to getting to know all of you.

Hugs Pat CA

Dear Stimulator group,
I was wondering how you are all doing and if there is anything that
I can help you out with. Well my letter and my doctor`s letter is
sent and recieved I will hopefully know about surgery next week.
Wish me luck I hope that you are all have a little less pain today.
take care
Holly Ut. Moderator

9 is prayer time/bedtime with the girls...I'll check in after tuck-time. :)

~Karen

hi. welcome to the group. you will like the group. my nam is anna. here is a litter about me.

i have rsd in my left foot and left
arm. the rsd in my foot is in remission now. i have rsd now
for 1 and 1/2 years now. it will be 2 years on 9/22/05.
but i was not diagnosed to 12/6/2004 in that 2 and 1/2 months
i was in the dr like evey week. get test and all that good stuff not.
and then i was diagnosed with rsd. at that time i was going to
school was in the 7th graes i am going to 9th gared now.
school with all that pain and the school do not have a
eleavator at all soo i have to do the staries. and that
was wand i get the rsd in get my foot.(i just get the rsd
in my arm 2 month ago.) and i miss soo mors school becaues
i could not do the staries at school and the pain. ( i have 3 fills of
staries at home. to do.) so afor i want to st.christoher
hospital for children in paill,pa. and dr gold samth
diagnosed it as rsd. and that is how i fand out i have rsd.
will that is logn a enough for now. hope you have a good day. hope you have a pain free day too. talk to you laster.

anna.
Betty <bjorg@...

Good Morning Everybody,
We have a new member with us this morning and her name is Pat. Pat was
a member of Sandy's group which is now disbanded and Sandy though Pat
would like it here with us. I hope that everyone will take the time to
welcome Pat to the family.
Pat, whenever you feel comfortable please post and tell us a little bit
about yourself so that we can get to know you better. We are a pretty
close knit group and talk about everything from RSD to our family
happenings both good and bad. All of it affects us so there are no
limits except for language as the posts can be viewed by family
members. I hope that we will hear from you soon and welcome to the
family.
Lots of Love,
Betty

As Holly said, your physician will let you know of any
restrictions and when you can "do" things. I have
climbed 13,000+ foot mountains with a neurostimulator.
I have snowshoed in Yellowstone with a
neurositmulator. I have fly fished in Montana with a
neurostimulator. And I have continued to teach high
school math - full time. I do not have a
neurostimulator now, (I've had 3 - 3 trials, implants
and explants = 9 surgeries) but when I did, my
students 'lovingly' called the remote my garage-door
opener.
On the flip side, I was in an auto-accident with the
neurostimulator. Rear-ended on the freeway (by one of
my school's students) pushing the frame in so much I
could not exit the car nor get to my remote to turn it
down. The firemen were able to free me (thankfully
with no injuries), but it was if my SCS was on super
high while I was trapped in a 'fetal-like' position in
the driver's seat. It is a real hassle to go through
airport security with a neurostimulator. I had my
purse stolen from the conveyor belt (before 9/11)
because I was being hand searched in one location away
from the x-ray machine for my purse and carry-on bag.
Keep us posted on how you are progressing.
Anne in TX

hi. that is ok with me. hope you have a good day. hope you have a pain free day too. talk to you laster.

anna.
Betty <bjorg@...

Well, everybody I changed the name of the group to Lifeline for RSDers.
Make sure that you change the address in your address book or whatever
you send will only go to the old addy. Hope you can all live with the
name.
Love to All,
Betty

How about........5:30 PM pacific time? That would be 8:30 eastern and 7:30
central. Or would half and hour later be better? I will be in there between
5:30 and 6, and will hang out 'til 6:30 pacific time. okey dokey?
will post bible study later than usual today, I have to run out again for few
minutes.
==
agape,
Christy
Proverbs 31:13 She seeketh wool and flax and worketh willingly with her hands.
My favorite bible verse:
1 Corinthians 1:18 For the message of the cross is foolishness to those who
are perishing, but to us are saved it is the power of God.
AIM user name: crochetin4Christ
http://www.geocities.com/christybritain/index
http://www.geocities.com/britainchristianacademy/indexofstudies.html

--- Kathy,
Welcome to the group sorry that you have had to go through alot to
get to the scs system. I know somethings that you will be limited in
like reaching for things you will need to get on a chair or
something so that you are not streaching your back. Lifting is
another thing that will be restricted. However when you go to the
doctor for this ask them he will give you restrications.
Every doctor is different in what they will allow you to do. I know
the goal is to help you be able to have a fairly normal life. Also
the out come is different for everyone.
When my stimulator was working right I got 80% relief from pain. I
have had a malfuction with the system that I have in me right now.
However my doctor is going to use the Medtronic system since ANS
failed me.
If you want to look at the websites of both are they are
www.medtronic.com www.ans-medical.com
Once your doctor has approved you for getting one the best thing to
do from experice talk with your insurance about both, and see which
one they proffer the cost is high for ans. At least I found that out
in the worst way after surgery compared to medtronic. Make sure your
doctor educates you and feel free to call the companies too. There
phone numbers are on the websites for people and they are willing to
help you.
If you have anymore questions you can email me or mike or the group.
I hope that you will find this group of a support and help to you.
take care
Holly UT. Moderater

hello everyone!
How is everyone today? Any prayer requests? Any special needs that we can help
you meet? Anything anyone wants to chat about? Any bible questions we can
ponder together?
Feeling much better today. Yesterday was AWFUL...overdid it the past few days I
think. Getting over the infection, still recuping from the 3 week flare,
spending time with mom, walking around the zoo, walking aorund ol-town, staying
up to the wee hours of the morning playing cribbage....I did make it to church
yesterday, and the pastor and some of the ladies laid hands on me for healing.
(No oil this time....the elders did that for me a few months ago) and I must say
that I came home, too about a 5 hour nap, took it easy last night and I feel
HEAPS better today...praise the Lord!!!!
Took the kids to the used bookstore (one of my favorite places ever!) and they
each picked out 3 new literature books. Emily just finished the Little House
series. She is reading the Emily of New Moon set, we threw in Mrs. Frisby and
the rats of N.I.M.H. (I might just read that one to the kids myself). Avery is
just beginning the CS Lewis series. He got the first 3. And Ryan, well, it's
not a set or series, but we picked up some literature books that would be
challenging for him, but not terribly frustrating. One was about the Frog
Prince, one was about the adventures of Diego Columbus.....defiantely counts as
lit., I thumbed through it. For myself, I picked up 3 Daphne du Maurier
paperbacks, and 3 Agatha Christie paperbacks.
I don't think I have these 3. I have so many it is hard to keep track!
Will post a bible study in a moment or two after this post, and I will also post
the new daily chat time. I am available almost any time by using AIM. If you
aren't sure how to use it, I would be happy to help you. My user name is
crochetin4Christ.
I really missed the short bible study I do everyday.....am looking forward to
closing this series in the next week or so and going on to another theme...don't
know what yet. Must make a trip to the Christian bookstore to help me decide.
well, will post again in a moment or two!
==
agape,
Christy
Proverbs 31:13 She seeketh wool and flax and worketh willingly with her hands.
My favorite bible verse:
1 Corinthians 1:18 For the message of the cross is foolishness to those who
are perishing, but to us are saved it is the power of God.
AIM user name: crochetin4Christ
http://www.geocities.com/christybritain/index
http://www.geocities.com/britainchristianacademy/indexofstudies.html

Hi my name is Kathy. I've had back surgery twice with good effect.
Once for 2 ruptured discs at l4-l5 and once for excision of scar
tissue. Last surgery was 17 years ago and did well for 16 years.
I'm now experiencing chronic back pain due to arthritis and stenosis.
I am unable to sit for more than 20 minutes at a time, problems with
walking any length of time. I can't drive, have lost my job. I've
been treated with tons of meds, PT, massage, nerve blocks etc...,I've
also seen numerous MDs from physiatrists, orthopedic surgeons, and
Ns. At this time the consensus is surgery is not appropriate and
recommend neurostimulator.
I understand that the scs can reduce pain by 50%. That sounds great
at this point. What I want to know is how else does it impact your
life? I mean, after surgey and recovery I was able to skate, sail,
rollerblade, ride a bike etc. Basically, I didn't alter my life.
When the scs is implanted, and pain is managed, what kind of
restrictions are there on activities? See I'm not only hopeful it
will reduce the pain, but I want to be able to do more than be able
to do more than just sit thriugh a meal or a movie. i not only want
to drive a car, I want to know do I have to worry about falls etc...
I'ld appreciate any and all feedback. I continue to be hopeful about
the future. Thanks

http://mchneighborhood.ichp.edu/CARENotebook/care-notebook.htm

--- Hi Mike,
Its my own health insurance that has denied it two times. We are in
process of getting a 72hour appeal my doctor said, that would be in
my best interest since my pain has been getting worse. I will update
you as time goes on. I will call the doc tomrrow to see if he got
his letter done. I got mine but medtronic said,its best to send them
together. Thanks for caring!
take care
Holly

Hello,
The moderator of the rsdlifeline group has changed the group's name.
This means that both the group's email address and the group home page
location have changed.
The group email address:

Holly is your workers Comp still denying the surgery? you need the
Stimulator have you applied for a hearing to resolve it?
Mike M Founder of North American Chronic Pain Society! Our Mission is
to Provided every Chronic Pain Patient with a Pain Management Doctors
that will Help you and we have a Friendly and Loving Support Group to
meet others in Chronic Pain. Let us help you!

Lynn

hey girlfriend,I am sure that was a difficult choice to drive to NY by yourself,and I am so glad you did ok-I had to make same type decision few months ago and drove to Montgomery Al.I also did fine,stopped every 100 miles for food,rest etc.The ride home just flat out wore me out!

I have a close friend down in Alabama too and was worried about them there too,but seems everyone laughed this storm off..said it was overrated on news...all I care is that they are all ok down there ya know...and glad your daughter got thru fine...

We are up for severe weather today because of the tropical mass left over us from the hurricane and worse...I have to work tonite.

oh well gonna peak thru emails while I have a chance....

luv ya

Sandy

--- Wow Jim,
It sounds like you have been through alot for with your back. I am
sorry that you have gone through so much. I am gald that your
stimulator does help you improve your quility of life. I believe in
the stimulator 100%. I hope that this group will be a great support
to you. I hope to see more of your postings. Have a wonderful day.
take care
Holly Ut. Mod.

Hi Everyone,
I hope that your stimulators are working for you or if you are
waiting for one that your doing ok in the mean time. I am waiting
for a Medtronic system to be put in right now. I have had a ANS
system that has failed. My NS and I strongley believe that Medtronic
will work better due to the fact he has taken some ANS patients and
placed a Medtronic System with success. Please let Mike and I know
if there is anything we can help you out with. Have a good day.
take care
Holly Mod. Utah

Hi All,
I'm not sure That I introduced myself to this group. My name is Jim and I have
had a scs since March of '99. (Medtronic model # 7434)
It literally has been a lifesaver for me. When I think of all the Nerve blocks,
Epidurals, Radio Frequencies and whatever else I went thru, I cringe. With this
Stimulator and the expertise of my N.S., the quality of my life has improved 100
%! That's not to say that I'm not still in pain, cause the sad fact is that I
am. But its soooo much more manageable now.
I had a motorcycle accident some 20 years ago. Busted up pretty bad, but I
healed. But throughout the following years my ribs started hurting. Then it got
worse. The pain started in my back and wrapped around to my chest. I thought I
was always having a heart attack. I made several trips to the ER, saw many
different DRs., and even went to a pain clinic for a couple of years. All to no
avail. The later had me hooked up on a couple of strong narcotics. Dulled the
pain, but also dulled my brain! Then I found my N.S. Said he does this surgery
where he implants a stimulator and it could help me with my pain. I had never
heard of this before, but was very intrigued. He showed me a video and to go
home for a few weeks and think about it. Well I was ready to sign up right
there, but he still made me leave! Anyway I had my mind made up. If this thing
even had a 10% chance of working I was doing it! I was sick of being in pain,
sick of seeing doctors, and sick of being a zombie!
Well it's absolutely the best thing I have done regarding my pain!
I work a semi labor intensive job and I was back to work FULLTIME in 6 weeks.
In fact my brother (who also has severe back problems) (Yes, because of a
motorcyle accident) had seen the huge difference the stimulator made in me,
pushed his drs. for a stimulator implant. He recieved his in 2001 but
unfortunately has not had the luck I have had. But he didn't have my N.S.. I
swear by this Dr.. In fact in November of 2003 He performed a spinal fusion on
me. Today I have very little trouble with my lower back and I work full time.
Sorry this Into. letter is so long. But thts my story and if anyone has any
questions I'll glady answer them.
Thanx for reading,
Jim

I was reading some of the posts and I too cannot believe Lynn drove by herself to NY. Lynn you know you just needed to yell and I am sure someone would have gone with you. I know though sometimes how it gets and you just want to hit the road and get there and back. I am so happy you made it there and back in 1 piece. Now time to rest up some. Sometimes we just do what we feel we can and pay for it later and I know I do this so I shall not go there anymore on you Lynn, LOL. On another note. We got a good steady hard rain for over an hour on Monday so that was shower day yet again, LOL. I must say my hair has never felt softer. The gutter on one end of the house makes a great shower also now that all the roof dirt is washed away LOL. Rain water is very soft so it is hard to get the soap off you. We collect rain water for the toilets and I go to a near by neighbors and get about 100 gallons of drinking water in large pots (80 qt) and jugs. A friend of my husbands
called him Monday evening and he was calling to tell him he has a man to repair our tractor for free so he was coming to pick it up. This could not have been better timing as this guy owns a water management company and he has all the stuff to pull the well and even has a spare pump. So when he comes he and my hubby plan to pull the well and possibly redrill a shallow well or something to get water this week end it is looking like if the rain will stay away long enough for them to work outside and with the electric on the well. I cannot complain about the rain though as it has been so very dry here and we have been under a burn ban so we have not been able to burn trash in 2 months. Now with the water not working we will not burn anyway. I am not sure if they have lifted the burn ban yet or not. So things are looking up somewhat. Tomorrow is the deadline for the Land Co. to mail us the notice of a Trustee sale for August. So is it does not come by Thursday then we
bought another month. All we need is another month and we should know the outcome of my Appeal and also the Arbitration on the house. We amended the Arbitration asking amount to $389,000.00, the full financed contract price. When we had the A/C repaired a few days back we found out the A/C unit we paid $2500 to upgrade to a 5 ton 14 seer is not but a 4 ton 9 seer. I looked on the papers and sure enough it was all listed as the 5 ton and 14 seer. Shame on them as the A/C man wrote it all down for us and said the numbers speak for themselves. Then I spoke to an attorney on this and asked if we should have the house looked at by an independent Contractor and he agreed, just not theirs. So I will get that started and that should not be a problem as we used to be General Contractor's and know plenty. We now have a new concern of black toxic mold between the hall bath ceiling and the outside roof. The roof has leaked from day 1 several times and we have killed the mildew
and mold on the inside but cannot see between the sheetrock ceiling and outside shingles. If this is the case there is a good change our house will be condemned to live in. My cousin had this happen and they lived 11 months in a 32 ft. travel trailer in their backyard while they literally gutted the inside of her brick home all the way to the bricks and started all over again. He we have wood siding and the toxic mold can penetrate it so I am not sure how this will all work out or if they will have to give us a brand new house paid for. I will talk back to the Atty on Thursday again. We are all set to have the 3 way phone conversation on the 21st with the Arbitrator and the House Mfg. Atty. We will find out then what date the Arbitration will be set for. I know it will be very soon as there are time lines of 90 days once the Arbitrator is appointed and it has been close to 30 days since that. I am hanging in here for dear life hoping and praying that something will
break for us and that we can finally get out of this slump and get on living again. I did not get to go wash clothes today at my cousins house as she called me 1st thing this am to tell me she had to go to the Dentist. Always something with her. Anyway tomorrow I plan to go to a Laundromat to wash a few loads of clothes and I can bring them home to dry them. Then must go to the grocery store as the dogs need food. Take care all and be good.

Debbie

Hi I am the Moderator for this group my goal is to help you all with
questions or concerns with stimulation therapy to the best of my
knowledge. Also to be a support to you I hope that our group will
grow and that you will want to state how you are doing from time to
time. I will keep in contact with Mike as well as he will be with me
to make sure all of you get the support that you need. Please
suggest anything that may help you or others in this group your
opinion matters to make the group grow more.
I hope that you all are doing ok please let me know how I can help
you.
take care
Holly Moderator

Karen
I will pray for Renee. Poor kid. Do any of your other girls show FMS symptoms?
I wanted to ask all on the list if they had family members with FMS like
symptoms. The doctors always ask about my relatives, and I didn't know this
until this weekend...that my grandmother always was extremely tired, and ached
all the time. Her brother was 'always sick' with something the doctors couldn't
identify as well. Sounds a lot like FM to me.
My 10 yr old daughter shows symptoms as well. We have not discussed it. I want
to be sure she is not just mimicking mom as she does in other things. (She
wants to be just like me)
--- "Karen Savoie" <Niblet_@...
src="http://adimg.egroups.com/img/4926/1/_/_/_/960174111/Snaildigital.gif"
==
agape,
Christy
Proverbs 31:13 She seeketh wool and flax and worketh willingly with her hands.
My favorite bible verse:
1 Corinthians 1:18 For the message of the cross is foolishness to those who
are perishing, but to us are saved it is the power of God.
AIM user name: crochetin4Christ
http://www.geocities.com/christybritain/index
http://www.geocities.com/britainchristianacademy/indexofstudies.html

Hello Member! I would like to Annouce Stimulator new Moderator Holly She will be
running the group, I wil still be here but I have alot to over NACPS-North
American Chronic Pain Society! SCS group will be growing over next 12 monthsI
will be adding it to www.nacps.us website and telling others. Thank you Holly
for Helping here. Mike Maxey

Ok Christy...we're done...and the girls want to send it before we check our
answers...much more exciting that way, wouldn'tcha say? Here we go...

--- Hello
I do believe that the stimulator does work it has been the best
resource for me. I do hope and pray that it will work get for you
too. Good luck keep us updated on things as it gets closer to time.
take care
Holly UT.

You have until Sat. June 10th!
Good luck and happy hunting!
Lies and More Lies
1 Who was the first person to lie to God about a murder?
2 What doting mother lied to obtain a blessing for her favorite son?
3 Who was the only animal that lied?
4 Who was turned into a leper for lying to the prophet Elisha?
5 Who is the father of lies?
6 What two men (father and son) who claimed at different times, that their
wives were actually their sisters?
7 Who was (probably) the most deceptive future father-in-law in the bible?
8 What lying prophet put Jeremiah in the stocks and was later told that he and
his whole household would die in exile?
9 What king of Israel claimed to be a devout worshiper of Baal n order to
gather togehter Baal-worshipers and butcher them?
10 What godly prophet lied to Ahab about the outcome of a battle?
==
agape,
Christy
Proverbs 31:13 She seeketh wool and flax and worketh willingly with her hands.
My favorite bible verse:
1 Corinthians 1:18 For the message of the cross is foolishness to those who
are perishing, but to us are saved it is the power of God.
AIM user name: crochetin4Christ
http://www.geocities.com/christybritain/index
http://www.geocities.com/britainchristianacademy/indexofstudies.html

Hi all,
Well with all the stress and hard work the appeal is at my doctors
office its his turn to get his done and I believe we will win this
surgery. I just get to push him now we have this week and part of
next week to have them sent in. I am excited for the surgery to take
place.
I hope that people will post more in this group its nice to have
support with stimulation therapy.
take care
Holly UT.

Great the stimulator trial is not bad at all. and yes you should be able
to decress your patches I am on Duragesic 100 and oxy ir 5 my
stimulator helps down my legs and feet but i dont feel it at all in my
back when they had it on my back my back spasm so thy lowered lead
Now They want the padle lead anyway keep us posted ok
Mike M Founder of North American Chronic Pain Society! Our Mission is
to Provided every Chronic Pain Patient with a Pain Management Doctors
that will Help you and we have a Friendly and Loving Support Group to
meet others in Chronic Pain. Let us help you!

Karen's daughters did a wonderful job!!! They are, by the way, the only ones
who responded. (Oh, when I said 'like life, it is an open book test' I was
referring to the bible!! But, this way works too!
Here are the answers:
Pharoah had the first birthday party. (Gen. 40:20)
Esther won the first beauty contes. (Esther 2)
Stephen was the first martyr (Acts 6:7-8:2)
Abimelach had the first dream (20:3-8
First war was among the kings of the north.(14)
Noah was the first drunk (Genesis 9:21)
The chest in Jerusalem was the first 'piggy' bank (2Kings 12) (although Karen's
daughter certainly has a point that it wasn't shaped like a pig....I enjoyed the
history of the true 'piggy' bank!)
Eutychus fell asleep during a sermon...and he did indeed fall out a window and
die!(Acts 20:9)
"Be fruitful and multiply" was the first commandment. ( Gen 1:28)
Abraham buying the cave at Machpelah was the first real estate deal (Gen
23:3-20)
Congratulations Erin, Renee and Shannon!!!!!!!
your prizes will go out in tomorrows mail!!!!
==
agape,
Christy
Proverbs 31:13 She seeketh wool and flax and worketh willingly with her hands.
My favorite bible verse:
1 Corinthians 1:18 For the message of the cross is foolishness to those who
are perishing, but to us are saved it is the power of God.
AIM user name: crochetin4Christ
http://www.geocities.com/christybritain/index
http://www.geocities.com/britainchristianacademy/indexofstudies.html

Hello Mike,
I just wanted to tell you and everyone I will be going in for my Trial Pump
Procedure on February 23rd at 11:30 am.
I'm still a little nervous, but going in to get things into motion, and hope
I don't have any complications or anything.
I will let anyone know who is interested in knowing how it goes.
The Duragesic patches don't work for me any more and I don't want to up
the
dosage again.
The doc tells me that I will be able to decreases my pain meds by about 300%
and that is the part I like because I am having a lot of side effects from
the drugs that I don't like, for example being shaky, nervous, irritable and
things like that which I hope will make things better with the pump.
Thanks to everyone for all the feed back and encouragement.
Al Paille
Richmond, RI
apaille@...

Christy, I am so glad that you are feeling better. Don't overdo it though.
Have a good visit with your mom and her husband. Do you at least like this
man? I know it is hard to see him with your mom, but God doesn't want your
mom to be lonely either and I am sure your dad is ok with this. It is hard
to lose a loved one, but it's harder going on with life alone too, and I
don't think God would want us to be alone.
Ask him to strengthen your heart to this new marriage and be happy for your
mom. I bet your dad gave her the ok to remarry, so if he is ok with it, you
should be too.
That is as long as this man is good to your mom.
hugs,
Dorothy

Hi All,
My pain is still at a high and wish there was medication that I
could take. I am waiting for my doctor to call to talk about
everything. I called Medtronic they gave me some advice that will
help me and my doctor. Getting through to the doctor is the hard
part it seems. I am trying to be patient but that is not one of my
best things to do.
I hope that all of you are having less pain today.:)!!!
take care
Holly UT.

In a message dated 05/31/2000 13:56:44 Mountain Daylight Time,
crochetin4Christ@... writes:
<<
I am still among the living! My flare is diminishing (yeah!), but then I
got a migraine (boo!!!), and now I have a minor sinus infection
(booo..hisss!!!)Complete with the sinus headache..(another boo...hiss!!!)
I've been totally out of it for several days now, either with pain and
fatigue, or I've been drugged....
so, I think by tomorrow I will be able to pick up the bible study again. It
is hard to think like this!!!
We'll finish of the rest of last week's schedule, so there is no new
schedule this week.
Christy,
Don't worry about the study right now. It is more important that you get
feeling better and make sure you get rid of the headaches and the sinus
infection. No one can think when their head is having so much pain. You
getting better is more important right now and I am sure that God would
agree. We will learn his word, just not this week.
Get better,
Dorothy

hello everyone!
we have a few new ladies joining us now..I'd like to say 'welcome'! Please jump
right in and introduce yourselves. Being such a new list, we haven't really
gotten into full swing yet, and we're still kinda quiet. Next week I will
decide on a time or two to be back in chat......if anyone has any preference
PLEASE
let me know! I was thinking maybe 6 pacific (8 eastern) since most of you seem
to be in the midwest and east...please let me know your thoughts.
The only one who responded to the bible trivia quiz was Karen....or her girls
rather....so, I will be sending their 'prize' out shortly. Aren't you just
dyin' to know what it is? I'll give you a hint; I made it. That's it, if you
want to know more........respond to the quiz!!!! I'll post answers soon. and a
new quiz!
I am feeling some better, thank you for your thoughts and prayers. My mother is
coming to visit for a day or so, so I could still use your prayers!!! I love my
mom dearly, and she lives 320 miles a way. I miss her and it is really great
that she is coming to visit. She's a newlywed, and it's just plain WEIRD!!!!!
My father passed away in '96, and she remarried last Nov. so it's not as if she
didn't 'properly' mourn Daddy..it's just so WEIRD to see Mom with someone other
than Dad. They are staying in a motel, which is good. I just don't think I
could stomach the idea of them together in my house...I think you know what I
mean? Just WEIRD!!
Last week my hubby found out at church that we are supporting an orphanage in
Mexico with another church.
The other church is donating money.......we are donating time. We are a rather
small (but growing) very poor church. Well, not really poor.....but there's not
a lot extra I'm sure. Very middle class.
I guess memebers of our church are going to be taking turns going down to teach
the children about all kinds of stuff. I'd like for my family to do that
sometime. What an experience to be (temporary) missionaries in the field! I
guess we are all missionaries though, be cause no matter where someone is at if
they don't know Jesus they are lost...
I thought you all get a kick out of this though....
For the month of June..the church is buildingless.
We moved into our new location last July, and the terms of the contract is that
we must vacate the premises for the month of June. Why? I was hoping you'd
ask! Our church building is actually the rabbit and chicken building at the
fairgrounds!!!!! All the remodeling that was done is....well, how do say it?
Removable I guess! The carpet is not tacked down, so you just roll it up. The
walls are in pieces that are hinged on. and the wooden slats that go over the
airvents are also hinged on! We don't have pews, we have folding chairs.
So, for the month of June,we will be holding our services in a local park, and
they will be at noon instead of 10. (Ususally takes 'til almost midday for the
fog to burn off) Even when we had a building, most of our June or July services
were held at a park.
Lots of picnics and outdoor services, family camp and so on. One of the many
many benefits of living among the beautiful redwoods is the parks, campgrounds,
hiking trails....not to mention our beaches and our lakes.
well, I'm going to try to post the bible trivia answers today, and get a
biblestudy posted. Little behind on
my comouter work.......
take care!
==
agape,
Christy
Proverbs 31:13 She seeketh wool and flax and worketh willingly with her hands.
My favorite bible verse:
1 Corinthians 1:18 For the message of the cross is foolishness to those who
are perishing, but to us are saved it is the power of God.
AIM user name: crochetin4Christ
http://www.geocities.com/christybritain/index
http://www.geocities.com/britainchristianacademy/indexofstudies.html

hi
I am still among the living! My flare is diminishing (yeah!), but then I got a
migraine (boo!!!), and now I have a minor sinus infection
(booo..hisss!!!)Complete with the sinus headache..(another boo...hiss!!!)
I've been totally out of it for several days now, either with pain and fatigue,
or I've been drugged....
so, I think by tomorrow I will be able to pick up the bible study again. It is
hard to think like this!!!
We'll finish of the rest of last week's schedule, so there is no new schedule
this week.
Also, I'd like to ask for prayers for Karen Savoie (Niblet).....she has taken
very ill rather suddenly, and needs us to agree in prayer for her. So, please
keep her in your prayers.....
also, travel mercies for Dina (TheAnneGirl) as she travels to southern CA for a
visit with her mom.
Being that the list is not very active, you may not have even ever 'typed' to
them, but being that we are all sisters in Christ, we kinda know each other
anyway.
type to ya all soon!
==
agape,
Christy
Proverbs 31:13 She seeketh wool and flax and worketh willingly with her hands.
My favorite bible verse:
1 Corinthians 1:18 For the message of the cross is foolishness to those who
are perishing, but to us are saved it is the power of God.
AIM user name: crochetin4Christ
http://www.geocities.com/christybritain/index
http://www.geocities.com/britainchristianacademy/indexofstudies.html

--- Hi everyone,

Mike,
Holly has not been getting the group's messages and would like to
correspond with you so as to get "back in the group." Could you take
care of this, please?
Thanks,
Anne in TX

Holly,
Having had 3 trials, implants, and explants (9
surgeries), I might have some experience dealing with
insurance companies. Does your administrator (not the
network) have an ombudsman? When the stim was first
suggested, I practically demanded an ombudsman from my
carrier. I wanted to have the same person to whom I
could speak to when there were ANY hangups, questions,
delays, etc. Can you move up the "food chain" at the
insurance company? That may be of help, too. Also,
not choosing any of the recorded options can work
sometimes. While I haven't seen a 'rotary' phone in
years, some systems will automatically let you speak
to a living, breathing person if you make no option
choice. I was lucky - the doctor's offices (all
implants were put in by different docs in different
cities under different administrators - but the same
network. The folks in the physician's offices were
helpful to me; this may not be your case.
Good luck and please e-mail me if you can think of
anything else where I might be of assistance.
Anne in TX

Good afternoon! My name is Diane and I have been a "silent" member
of this wonderful group for a couple of weeks! Blessings and peace to
all. Christy will be unable to post her Bible study today. Our
Sister in Christ is feeling quite ill today, her FMS has flared up
and her email is down. Please keep her in your prayers today; She is
such a faithful servant to the Lord! Also, just a reminder, don't
forget the Bible trivia posted earlier this week; Christy will be
posting the answers later next week. Thank you for your prayers and I
will try not to be so quiet from now on! In His Love, Diane

Hi Everyone,
My neurosurgeon called to Monday morning to give me updates about my
case in getting things done with insurance. My doctor sent the
insurance a dectated letter and called to talk to the insurance doc
that is reviewing my need for a new stimulator.
However he talked to the insurance doc that wasnt over the case and
he said, that he would put the new information on his desk. However
he told my doctor that we may have to reappeal to my need of
surgery. My doctor than told him that he would rather talk to the
doctor instead of going through the whole process again in writing
and waiting. My surgeon said if he didnt hear from them by the end
of the day. That he would call them Tuesday and than I would find
out what