Question

[Guest guest]

> When we get older it is recommended that we have colonoscopies as a

> preventive measure. You have to drink about a million gallons of

> something the night before. How do people that are post-op do this?

> It's either a question for a nurse or Dr. Rutledge.

>

My husband has not had the MGB but he has had colon cancer and has

regular colonoscopies. There is another cleansing aide (forgot the

name) that has you drink about 8 oz. and it does the job. He

complained to the doctor about the gallon stuff and the doctor told

him about the 8 oz. stuff.

[Guest guest]

Janet, Lucy here, I go to one and I too, love to get my neck worked on.

I also have Klippel-Feil Syndrome which means I have two fussed vertebrae

in my upper spine (c2 and c3). Love and Prayers, Lucy

> [Original Message]

>

> To: <Rpolychondritisegroups>

> Date: 9/18/00 7:57:43 PM

> Subject: Question

>

>

> Hi all- Pete wants to know if anyone goes to a chiropractor??He always

used

> to go before he got RP...but now that there's the " cartiledge "

factor....I am

> going to one for chronic low back pain(alot of arthritis)...Pete used to

love

> it when they cracked his neck!!!!!Thanks Janet

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

--- Lucy

--- littlelulu44@...

--- EarthLink: It's your Internet.

[Guest guest]

Janet, Lucy here, I go to one and I too, love to get my neck worked on.

I also have Klippel-Feil Syndrome which means I have two fussed vertebrae

in my upper spine (c2 and c3). Love and Prayers, Lucy

> [Original Message]

>

> To: <Rpolychondritisegroups>

> Date: 9/18/00 7:57:43 PM

> Subject: Question

>

>

> Hi all- Pete wants to know if anyone goes to a chiropractor??He always

used

> to go before he got RP...but now that there's the " cartiledge "

factor....I am

> going to one for chronic low back pain(alot of arthritis)...Pete used to

love

> it when they cracked his neck!!!!!Thanks Janet

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

--- Lucy

--- littlelulu44@...

--- EarthLink: It's your Internet.

[Guest guest]

Janet,

Kathleen (NY) here, I always go to a cracker-jack when I need one (that's the

name my other half has always called the chiropractor). I split 5 miles 4-5

times a week running and walking a course I do around my area at home and when I

can't walk/run, I'm at the gym doing sessions of body sculpting and aerobics.

So, every once in a while I get a pinching between my shoulder blades or lower

back gets out of whack and so therefore, I do visit my chiropractor and she's

great. But she uses a tool instead of trying to put my body into preztel form

to get a pop out of me. It really works great and she always does the

ultrasound treatments and the moist heat packs before the adjustments. I know

Pete's has RP more advanced than I do, but it sure feels great when your bones

are where they are supposed to be and not out of line. Just my opinion here

..... Kathleen

[Guest guest]

In a message dated 6/13/01 12:04:35 PM Eastern Daylight Time,

gloriaohara@... writes:

> After each attack though I am sore very sore in the abdomen for at least a

> day.

Those are very typical for me Gloria, I view it as that your whole GI tract

has had a very sick episode. Thus it is sore and needs time and gentle care

to recover. Generally, the longer and harder the attack the more time that is

needed for recovery. I also view this as there is not much you or anyone else

can do about this " recovery " problem. To recover you just need down time and

gentle care.

Poncho

[Guest guest]

I meant to say the attacks I get are NOT constant. sheesh....wish I

would proofread my work. Gloria

> I am wondering something before I go to the doc tomorrow.

> The " attacks " I get are constant. I can have then for days in a

row

> and then none for several days, or one every other day, etc. After

> each attack though I am sore very sore in the abdomen for at least

a

> day. Is this similar to the problems you all experience? Thank

you

> in advance. Gloria

[Guest guest]

Terry,

They have never to my knowledge found any hereditary link with Shy-Drager or

MSA. They have seen cases where family members of SDS/MSA patients had PD. To

my knowledge there has never been a case where any two family members had

SDS/MSA.

Take care, Bill and Charlotte

=================

TDuvall454@... wrote:

> Hi group.

>

> I have a question about Shy-Drager I was wondering if anyone could answer. I

> don't remember if I had thrown this out before.

>

> Does anyone know if research has shown that Shy-Drager is hereditary? Have

> any studies been done? Thanks for any input you can give. I enjoy reading

> all the postings during the day and do pass many on to my Aunt.

>

> Terry in Iowa

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

[Guest guest]

Deb,

Hope is better now 3 days later.

Spencer was sick several weeks ago. Garden variety stuff. He did

spike a fever and didn't want to eat. The Doc stated the primary

concern is dehydration or crashing from not eating.

I would say the primary concern would be to make sure he continues to

get fluids. Watch how much he urinates. Spencer went for 12 hours

without unrinating and refusing fluids. Then in the Doc office, he

drank 6 ounces of formula and peed. Go figure.

Spenc is fine now. The Dev Ped was very impressed that Spenc could

pull himself out of the deal without IV intervention. She stated

that many kiddos with Mito need IVs when they get sick since they

tend to dehydrate easily.

Bec

> Hey there

>

> is having his first cold since 'coming down with Mito'...I

think I am

> only supposed to call the doc if he has an infection, meaning he is

running a

> fewer right? He is getting a breathing treatment right now...we

only have to

> use it when he is sick...has always been that way and until mito, I

didn't

> know why...anyway, should I take any extra precautions?

>

> deb

[Guest guest]

Deb,

Hope is better now 3 days later.

Spencer was sick several weeks ago. Garden variety stuff. He did

spike a fever and didn't want to eat. The Doc stated the primary

concern is dehydration or crashing from not eating.

I would say the primary concern would be to make sure he continues to

get fluids. Watch how much he urinates. Spencer went for 12 hours

without unrinating and refusing fluids. Then in the Doc office, he

drank 6 ounces of formula and peed. Go figure.

Spenc is fine now. The Dev Ped was very impressed that Spenc could

pull himself out of the deal without IV intervention. She stated

that many kiddos with Mito need IVs when they get sick since they

tend to dehydrate easily.

Bec

> Hey there

>

> is having his first cold since 'coming down with Mito'...I

think I am

> only supposed to call the doc if he has an infection, meaning he is

running a

> fewer right? He is getting a breathing treatment right now...we

only have to

> use it when he is sick...has always been that way and until mito, I

didn't

> know why...anyway, should I take any extra precautions?

>

> deb

[Guest guest]

When had this they called it renal tubular acidosis and said

there were two basic kinds. (with 4 variations) One kind you could

grow out of. I don't know if there are more causes for lactitc

acidosis. did grow out of his acidosis. He was taking

polycitra and had dosages as high as 25 teaspoons a day to correct

(125 ml.) They still keep an eye on it but he has not had a bad

reading for over 2 years.

Twana

> I have a simple question about the condition " Lactic Acidosis " and

> cannot seem to find the answer anywhere. I, myself have this

> condition but am curious if it is possible to outgrow the condition

> or if one always has it?

>

> THank you,

>

> Meg

[Guest guest]

Christy,

My suggestion is that you give her lots of attention, cuddles etc and reflect back to her what she is feeling without being contradictory. Hopefully this will strengthen your relationship with her, fulfill her need for attention from others, and thereby weaken her "need" for him. Under no circumstances put up a barrier or condemn the situation to her. It will only push her to him (I know that from personal experience).

Just be patient. Emotions are high when you are young. Even they don't understand what is happening to them - but you have the maturity of experience to see the consequences. Be patient.

(((Hugs)))

RobynChristy wrote:

Immediate Attachment Syndrome. Anyone heard of it? We think has it. She went out with this guy who has been a friend for years. They went to a movie Friday night and prom last night. Today they went to the mall and she's in love again. HELLOOOOOOOooooooooooo???????? She said he confessed she's the first girl he's ever kissed. I hate for him to get hurt but he is so sweet and gentle. I don't think he can handle . What's up with her? They said people have this who have lost a parent at an early age. I guess I could understand if we were talking about Tina but this is . Her father left when she was 2 and then 3 months later Ronnie was raising her and she was calling him Daddy. He's been her Daddy ever since. Apparently people with IAS attach to anyone who shows them any type of affection. Thoughts?

Please visit our website at:http://ACES_Autoimmune.tripod.com

Find local movie times and trailers on Yahoo! Movies.

[Guest guest]

Thanks Robyn.

Re: question

Christy,

My suggestion is that you give her lots of attention, cuddles etc and reflect back to her what she is feeling without being contradictory. Hopefully this will strengthen your relationship with her, fulfill her need for attention from others, and thereby weaken her "need" for him. Under no circumstances put up a barrier or condemn the situation to her. It will only push her to him (I know that from personal experience).

Just be patient. Emotions are high when you are young. Even they don't understand what is happening to them - but you have the maturity of experience to see the consequences. Be patient.

(((Hugs)))

RobynChristy wrote:

Immediate Attachment Syndrome. Anyone heard of it? We think has it. She went out with this guy who has been a friend for years. They went to a movie Friday night and prom last night. Today they went to the mall and she's in love again. HELLOOOOOOOooooooooooo???????? She said he confessed she's the first girl he's ever kissed. I hate for him to get hurt but he is so sweet and gentle. I don't think he can handle . What's up with her? They said people have this who have lost a parent at an early age. I guess I could understand if we were talking about Tina but this is . Her father left when she was 2 and then 3 months later Ronnie was raising her and she was calling him Daddy. He's been her Daddy ever since. Apparently people with IAS attach to anyone who shows them any type of affection. Thoughts?

Please visit our website at:http://ACES_Autoimmune.tripod.com

Find local movie times and trailers on Yahoo! Movies.Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Thanks Robyn.

Re: question

Christy,

My suggestion is that you give her lots of attention, cuddles etc and reflect back to her what she is feeling without being contradictory. Hopefully this will strengthen your relationship with her, fulfill her need for attention from others, and thereby weaken her "need" for him. Under no circumstances put up a barrier or condemn the situation to her. It will only push her to him (I know that from personal experience).

Just be patient. Emotions are high when you are young. Even they don't understand what is happening to them - but you have the maturity of experience to see the consequences. Be patient.

(((Hugs)))

RobynChristy wrote:

Immediate Attachment Syndrome. Anyone heard of it? We think has it. She went out with this guy who has been a friend for years. They went to a movie Friday night and prom last night. Today they went to the mall and she's in love again. HELLOOOOOOOooooooooooo???????? She said he confessed she's the first girl he's ever kissed. I hate for him to get hurt but he is so sweet and gentle. I don't think he can handle . What's up with her? They said people have this who have lost a parent at an early age. I guess I could understand if we were talking about Tina but this is . Her father left when she was 2 and then 3 months later Ronnie was raising her and she was calling him Daddy. He's been her Daddy ever since. Apparently people with IAS attach to anyone who shows them any type of affection. Thoughts?

Please visit our website at:http://ACES_Autoimmune.tripod.com

Find local movie times and trailers on Yahoo! Movies.Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Has anyone heard from and Anne? Its has been awhile since

ether of them posted. I can't remember there yahoo ID so I'm not

sure if there still in the group.

Shell

[Guest guest]

I figured the lemon may be a no-no as well.

I'm a bit of a granola-muncher (as my best friend

calls me), and I use the honey and lemon for medicinal

purposes, not for flavoring. Honey has antiseptic

properties and can kill bacteria on the tonsils and

the lemon is more just to give me a dose of vitamin C.

I know there are plenty of things on the market to

help curb the symptoms of viruses and there is always

antibiotics for infections. I just didn't realize how

many of my staple home-spun cures involve foods that I

won't be able to consume post-op.

I'm set in my decision to have the surgery, so it's

not like this realization causes me to waver. If

anything, I expect to be a lot healthier once I've had

surgery.

If I have to learn to depend on pills and meds instead

of folk medicine post-op, I'll handle that. I may

grumble, but I can live through it. I just wondered if

anyone else had a similar experience and knew of other

equally hippie-ish cure-alls that were within the

dietary limitations set for post-ops.

Thanks for the input. I'll definitely keep the DaVinci

syrup in mind for when I'm sick of plain water.

Tonya (in )

Pre-op

Orientation: Nov. 16 in SSF

--- " Sandi H. " wrote:

>

> Actually, I'm lucky, I haven't had a sore throat

> since my surgery

> last June. However, when I get to work and I'm

> cold, I make warm

> drinks using Equal or Splenda to sweeten it. I'm

> not a fan of tea

> (used to be a coffee drinker - no longer), so I take

> a cup of hot

> water and put some Da Vinci sugar free syrup or

> flavoring I got from

> Bariatric Advantage vitamin web site and put a

> little sugar free

> sweetener.

>

> BTW--I was told to avoid all citrus juice, including

> lemon juice,

> after surgery. I suppose lemon flavoring may be OK,

> but if I were

> you, I'd ask my surgeon.

> --Sandi H

>

>

> > I woke up this morning with an awful sore throat.

> I

> > did what I usually do in such events: I grabbed

> the

> > sea salt from the cupboard and mixed up a warm

> > solution to gargle. I did that for a few minutes

> > before getting ready to go to work. Did it again

> while

> > I gathered " supplies " to get me through my work

> day:

> > plastic tumbler for garlging solution, sea salt,

> mug,

> > herbal tea, REAL Lemon lemon-juice dispenser, jar

> of

> > raw honey; and left for work.

> >

> > I just put a kettle of water to boil in my boss'

> > office (she has an electric tea kettle in there),

> when

> > it hit me: Whenever my throat hurts, my No. 1 home

> > remedy is tea with honey and lemon.

> >

> > Once I have surgery, honey will be a no-no. Well,

> I

> > could probably try it if I'm interested in making

> > myself feel so wretched that the sore throat is no

> > longer a concern

> >

> > So, post-ops, I'm curious, what do you do when you

> get

> > a sore throat? Do you just gargle with salt water

> and

> > take Tylenol for pain or have you come up with

> another

> > alternative?

> >

> > Tonya (in )

> > Orientation: Nov. 16 in SSF

> >

> >

> >

> > __________________________________

> > Do you Yahoo!?

> > Check out the new Yahoo! Front Page.

> > www.yahoo.com

>

>

>

>

__________________________________________________

[Guest guest]

Not everyone has a problem with honey...but I would not advise to try it very soon after the surgery. I use a tiny, tiny amount of honey compared to what I used to in my tea. For a sore throat, still do tea, but sweeten with stevia or splenda. I recently had asthmatic bronchitis, and I whooped it with drinking lots of fluids, alcohol free Robitussin, and sugar free Halls for the sore thorat part. The actual infection...let us say that was harder. God willing it is just a sore throat and you will be good as rain in no time!

Love CrazyT wrote:

I woke up this morning with an awful sore throat. Idid what I usually do in such events: I grabbed thesea salt from the cupboard and mixed up a warmsolution to gargle. I did that for a few minutesbefore getting ready to go to work. Did it again whileI gathered "supplies" to get me through my work day:plastic tumbler for garlging solution, sea salt, mug,herbal tea, REAL Lemon lemon-juice dispenser, jar ofraw honey; and left for work.I just put a kettle of water to boil in my boss'office (she has an electric tea kettle in there), whenit hit me: Whenever my throat hurts, my No. 1 homeremedy is tea with honey and lemon.Once I have surgery, honey will be a no-no. Well, Icould probably try it if I'm interested in makingmyself feel so wretched that the sore throat is nolonger a concern ;)So, post-ops, I'm

curious, what do you do when you geta sore throat? Do you just gargle with salt water andtake Tylenol for pain or have you come up with anotheralternative?Tonya (in )Orientation: Nov. 16 in SSF __________________________________ Do you Yahoo!? Check out the new Yahoo! Front Page. www.yahoo.com __________________________________________________

[Guest guest]

I am a bit of a folk-healer type as well, and I found that fresh ginger also works quite well. Like I told someone else, not everyone is sensitive to honey. I personally do not have a problem with it, but I also take great care to dilute it well in the tea and not to use a lot of it at one time. But I have a tea mixture at home that a healer made for me that is different herbs, and I was told as well that you can use fresh ginger slices and lemon slices in hot water as well.

Love CrazyT wrote:

I figured the lemon may be a no-no as well.I'm a bit of a granola-muncher (as my best friendcalls me), and I use the honey and lemon for medicinalpurposes, not for flavoring. Honey has antisepticproperties and can kill bacteria on the tonsils andthe lemon is more just to give me a dose of vitamin C.I know there are plenty of things on the market tohelp curb the symptoms of viruses and there is alwaysantibiotics for infections. I just didn't realize howmany of my staple home-spun cures involve foods that Iwon't be able to consume post-op.I'm set in my decision to have the surgery, so it'snot like this realization causes me to waver. Ifanything, I expect to be a lot healthier once I've hadsurgery.If I have to learn to depend on pills and meds insteadof folk medicine post-op, I'll handle that. I

maygrumble, but I can live through it. I just wondered ifanyone else had a similar experience and knew of otherequally hippie-ish cure-alls that were within thedietary limitations set for post-ops.Thanks for the input. I'll definitely keep the DaVincisyrup in mind for when I'm sick of plain water.Tonya (in )Pre-opOrientation: Nov. 16 in SSF--- "Sandi H." wrote:> > Actually, I'm lucky, I haven't had a sore throat> since my surgery > last June. However, when I get to work and I'm> cold, I make warm > drinks using Equal or Splenda to sweeten it. I'm> not a fan of tea > (used to be a coffee drinker - no longer), so I take> a cup of hot > water and put some Da Vinci sugar free syrup or> flavoring I got from > Bariatric Advantage vitamin web site and put a> little sugar free >

sweetener.> > BTW--I was told to avoid all citrus juice, including> lemon juice, > after surgery. I suppose lemon flavoring may be OK,> but if I were > you, I'd ask my surgeon.> --Sandi H> > > > I woke up this morning with an awful sore throat.> I> > did what I usually do in such events: I grabbed> the> > sea salt from the cupboard and mixed up a warm> > solution to gargle. I did that for a few minutes> > before getting ready to go to work. Did it again> while> > I gathered "supplies" to get me through my work> day:> > plastic tumbler for garlging solution, sea salt,> mug,> > herbal tea, REAL Lemon lemon-juice dispenser, jar> of> > raw honey; and left for

work.> > > > I just put a kettle of water to boil in my boss'> > office (she has an electric tea kettle in there),> when> > it hit me: Whenever my throat hurts, my No. 1 home> > remedy is tea with honey and lemon.> > > > Once I have surgery, honey will be a no-no. Well,> I> > could probably try it if I'm interested in making> > myself feel so wretched that the sore throat is no> > longer a concern > > > > So, post-ops, I'm curious, what do you do when you> get> > a sore throat? Do you just gargle with salt water> and> > take Tylenol for pain or have you come up with> another> > alternative?> > > > Tonya (in )> > Orientation: Nov. 16 in SSF> > > > > > > >

__________________________________ > > Do you Yahoo!? > > Check out the new Yahoo! Front Page. > > www.yahoo.com> > > > __________________________________________________

[Guest guest]

I might be mistaken about the lemon. I do remember hearing about

others who had surgery in San Diego, like me, that use some lemon

juice. I'll ask at our support meeting tomorrow night. I understand

that LaVerne from Pacific Bariatrics will be at that meeting.

(Meeting in Sacramento, Point West Kaiser— 7 to 9 PM)

--Sandi H. (5 ft 1 inch tall)

Dr. Leo – San Diego (Thru Kaiser)

315 at orientation (May '03)

252 at surgery (6/03/04)

Last weighed at 198.0 (10/30/04)

Week before weighed 197.5 (10/16/04)

Hopefully someday below 140

sandiantoytrain @ yahoo . com

> sandi,

> where did you have your surg? I am at ssf and we were told lemon is

not a prob. I have a lemon tree and put a lemon slice in my hot water

all of the time...we were told to avoid oj as it is not a good thing

to drink unless totally diluted.

> thx

> bee

[Guest guest]

,

Hi, When I cut back too low on the pred., I have pain like that. It feels like it is in my bones, after I go back up on the pred. it is so much better. I can't seem to get below 20 mg.

[Guest guest]

koshie,

i have traveled quite a few times since i was diagnosed. buy a straw hat.

they have great ones for cheap (make sure its a wide brim) where it even

when you go for a swim. there is sunblock they make just for your face. get

the strongest spf and apply it twice every hour and a half. also, i use spf

45 and up for my skin, stay under an umbrella (i purchased one so that i

would always have it. some beaches charge you or dont have them) also, wear

comfortable , loose clothing to and from the beach as the little bit of sun

you may get will make your skin a little sensitive.

good luck and have a GREAT time on your vacay.

carrots

>

>Reply-To: Neurosarcoidosis

>To: Neurosarcoidosis

>Subject: Question

>Date: Mon, 14 Mar 2005 17:11:38 -0000

>

>

>

>I need a bit of guidance. I am in between doctors because I got a

>new job and new insurance. I have been diagnosed with sarcoidosis-

>pulmonary, joint, with skin involvement. I got the new job as soon

>as I received my positive diagnosis. So therefore had to find all

>new doctors because my new health insurance carrier is not accepted

>by my old one. Now waiting for my appointment at the end of April

>and waiting for my old HMO to send my records to JHU in Baltimore.

>Anyway, that leaves me with no one to answer questions that arise

>daily about this disease. I have been told that I should stay out of

>the sun, because this disease tends to manufacture excess amounts of

>vitamin D and calcium in the body. Is this true? I am supposed to

>go to the Bahamas on April 1 and am worried that although I plan to

>mostly stay out of the sun, how will my body be affected. Does the

>sun cause more skin lesions to appear? Will all the extra sun cause

>me to feel like crap? Please help...

>

>Naa Koshie Mills

>

>

>

>

>

>

[Guest guest]

,

I understand how you feel about needing something to do when you are too sick

to really do other things...... do you crochet or knit by any chance?? The reason I ask

is I am a charter member of the Online Angels. That is a group where we make and

donate things to a lot of charities. In 5 years we have grown from our little group of

about 30 to nearly 300 and the work we are doing is unbelievable! I f you are interested

in helping, let me know and I will send you the web site so you can look it over and see

if you would like to join.

Hugs,

Darlene Arney

Co-Owner/Moderator

Question

Hi guys, I don't know if I can ask this here, if not it will get edited, and that is fine...anyway, I was wondering if anyone has done that ebay thing. Since I can't do much except spend a little time on the computer, I thought I would try to sell some odds and ends or whatever just to give me something to do. I had done it a little a long time ago, but everything has changed there.If anyone knows anything, any ideas would be helpful. I just really need something to do right now. I have had the best "thinking" week I have had in a long time and although the physical stuff from the accident still keeps me pretty immobile, I would like to do something.I have also considered writing a book, so if people have things they would like me to write in it, let me know. I am still learning so much about this disease. I started writing a book about Brain Injury because they told me that was what was wrong with me from my first accident. But there are a lot of books on that. I want to write something that will help people understand about this disease, and help them understand that just because the Doctor's don't understand it doesn't mean we are faking, or not tough enough, or it isn't real. I would also like to put in a chapter about useful adapting strategies for physical stuff and emotional stuff and a whole chapter on dealing with the medical professions.So any ideas to keep me busy would be so appreciated! I love this group because everyone has so much to offer!~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Joan,

Thanks for the encouragement. I guess the problem I have with ebay

is how to put the pictures up there. I know things sell better with

pictures.

As far as the book... I would like to write one but I have no idea

how to get it published! I started to write about about Traumatic

Head Injury after my accident, but then I had a relapse and my

computer did too, so I lost everything.

I guess since this disease is still new to me, it would be helpful

just to get the ideas of what people think the backbone, or chapter

topics should be. I have a few ideas, but not many since it is

still new.

Oh, I have to rustle up my kids I just saw them running out front

and they are supposed to stay out back...

L

>

>

> Hi ,

>

> 1) Yes, I do sell on ebay...often, because I have to in order to

pay for

> co-pays, but I am going to have to stop now since I just can't do

it any more.

> I'd be glad to help you with whatever it is you need help with.

>

> 2) I truly hope you do write a book, and I would be one of the

first to

> purchase it!!!...I think you already realize just by being part

of this group

> and seeing the posts that you have plenty to write about. Also,

the archives

> contain much info as well.

>

> Good luck to you with both!...and I'm really anxious for the book

to be

> published!!!

>

> Hugs, Love, and Prayers to You,

> Joani

>

> In a message dated 4/14/2005 8:23:14 A.M. Eastern Standard Time,

> mom22angels1@n... writes:

>

> Hi guys,

> I don't know if I can ask this here, if not it will get edited,

and

> that is fine...anyway, I was wondering if anyone has done that

ebay

> thing. Since I can't do much except spend a little time on the

> computer, I thought I would try to sell some odds and ends or

> whatever just to give me something to do. I had done it a

little a

> long time ago, but everything has changed there.

> If anyone knows anything, any ideas would be helpful. I just

really

> need something to do right now. I have had the best " thinking "

week

> I have had in a long time and although the physical stuff from

the

> accident still keeps me pretty immobile, I would like to do

> something.

>

> I have also considered writing a book, so if people have things

they

> would like me to write in it, let me know. I am still learning

so

> much about this disease. I started writing a book about Brain

> Injury because they told me that was what was wrong with me from

my

> first accident. But there are a lot of books on that. I want to

> write something that will help people understand about this

disease,

> and help them understand that just because the Doctor's don't

> understand it doesn't mean we are faking, or not tough enough, or

it

> isn't real. I would also like to put in a chapter about useful

> adapting strategies for physical stuff and emotional stuff and a

> whole chapter on dealing with the medical professions.

>

> So any ideas to keep me busy would be so appreciated! I love

this

> group because everyone has so much to offer!

>

>

>

>

>

>

> " I believe that friends are quiet angels who lift us to our feet

when our

> wings have trouble remembering how to fly. "

[Guest guest]

Joan,Thanks for the encouragement. I guess the problem I have with ebay is how to put the pictures up there. I know things sell better with pictures. (yes, the pictures are the most important part of selling..., it is so easy, you just have no idea ... it's like inserting a picture in an e-mail ... when you get to the selling pages, you are walked through everything...using the ebay picture tool is the easiest that I've found)As far as the book... I would like to write one but I have no idea how to get it published! (My cousin had a book pulished...I will ask my aunt, but I think you just take your type-written pages, be sure to copyright it which costs about $20 and can be done easily -- search on-line for "Copyrighting", then mail it to various publishers which can also be found on line ... in fact, I would do a search on "how to have a book published" ... but you must be sure to have it copyrighted before anything!") I started to write about about Traumatic Head Injury after my accident, but then I had a relapse and my computer did too, so I lost everything.I guess since this disease is still new to me, it would be helpful just to get the ideas of what people think the backbone, or chapter topics should be. I have a few ideas, but not many since it is still new.Oh, I have to rustle up my kids I just saw them running out front and they

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly."