New Member

[Guest guest]

What does everyone think about a person that doesn't have PSC joining the

group? I will add her name if you all would like. I am not trying to keep

ANYONE from joining this group..but my original reason for creating it was for

" patients, and family members of patients with Primary Sclerosing Cholangitis "

I will do what everyone thinks is right.

Love,

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

[Guest guest]

I only want to join your group as I search out information for other people

with liver diseases, etc. If I have this I can send one out to a new found

person with PSC for them to read and use to join. If there is another way for

me to keep this address and info {psc} in my medical favorite places...I do

not need the Digest. I understand...I have PBC not PSC so if you do not want

me in this group it is really fine. I will be OK with your decision. Just

please give me a reference point for others who do have PSC. Thanks. I hope

I explained this well enough.....sometimes the fuzzy brain gets in my way.

Joanne JJCATHCART@...

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

[Guest guest]

Welcome, Percy. You'll learn a lot from this group.

Bill

> New Member

>

>

> Hi Everyone

> I have just joined the group. My name is Percy and I am from England.

> I have PSC and UC. I also suffer from AS - arthritis of the spine

> and other

> joints.

> The PSC was only recently diagnosed, and I know very little about this

> disease

> and its effects. I have been reading the recent postings and find all of

> you very caring

> and supportive.

>

> Love and Peace

> Percy

>

>

>

> ------------------------------------------------------------------------

> Fresh flowers are the perfect way to say " I love you " .

> Shipped direct from the grower, Proflowers.com has

> arrangements from $29.95 plus S & H.

> Click here: http://offers./click/216/0

>

>

[Guest guest]

,

I don't mind others joining the group, but do feel that this is for PSC, not

other liver diseases. If that standard is kept, then great. This doesn't

mean that we only talk about PSC, but the group shouldn't be diluted

especially if support is offered with other groups.

Once again my $0.02

Dan

> Re: New Member

>

> What does everyone think about a person that doesn't have PSC joining the

> group? I will add her name if you all would like. I am not trying to

> keep

> ANYONE from joining this group..but my original reason for creating it was

> for

> " patients, and family members of patients with Primary Sclerosing

> Cholangitis "

> I will do what everyone thinks is right.

> Love,

>

>

> ------------------------------------------------------------------------

> Fresh flowers are the perfect way to say " I love you " .

> Shipped direct from the grower, Proflowers.com has

> arrangements from $29.95 plus S & H.

> Click here: http://offers./click/216/0

>

>

[Guest guest]

,

A FAQ section on the website is a great idea.

Bill

> Re: New Member

> > >

> > ...I would recommend we open ourselves to support of all liver

> > disease

> > > patients. One of our biggest tasks is simply getting the

> word out, and

> > > ensuring that more organs are available through donars by

> the time each

> > > of us (if ever) is in need. The more people informed, the

> more family

> > > members and friends can join our circle.

> > >

> >

> > ----------------------------------------------------------------------

> >

> >

[Guest guest]

Craig,

Hello, I am the manager of the group. I am going to be

adding your name to the list, you should be getting mail from the

list soon, inviting you to join. Once you get the mail, please follow the

directions. If you have any problems at all, feel free to let me know!

Welcome to the group, I hope you enjoy it!

Love,

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

[Guest guest]

Craig,

Welcome, I have and PSC and UC for 3 years now. I take 300mg Actigall 2x a day

and 1600 Asacol 3x a day. I haven't had any itching and no pain. My liver

function test (LFT) all come back pretty close to normal as long as I am not

in a flare up. When I do flare up with the UC some of the test do change.

Again welcome, look forward to sharing information with you.

Larry PSC/UC 1995

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

[Guest guest]

Welcome Dave,

It's so good to have transplanted people in the group any info you can give us

is soooo welcome. To be able to

help other transplant people must be such a gratifying experience. I envy you

being help people in that way.

I am the wife of a PSCer. My husband Phil was diagnosed this last December and

already is going through the

process of getting listed at UCLA. He has most likely had PSC for a number of

years and had 4 bouts of

cholangitis right after his diagnosis. He has been infection free for 5 months

now but is unable to work due to

the fact that he is 56 and lost his job 1 month before being diagnosed, and has

much fatigue, some on and off

pain, and brain fog. He just got approved by ss disability. Any input you can

give us as to your transplant

process and recovery is much appreciated.

Peg

Dspiro wrote:

> Hello all,

> My name is Dave Spiro, and Penny Weller told me of your group. I am 40

> years old, and was originally diagnosed with PSC in 1988, at the age of 28,

> after being misdiagnosed three years earlier. My disease took it's usual

> course, and by late 1995, early 1996, my body started to break down from the

> advancing liver failure.

>

> I was transplanted at Mt. Sinai Hospital in NYC on 8/1/97, and am living a

> far more wonderful life these days. After working in emergency medical

> services as an EMT/Paramedic for 22 years, 10 of them in Brooklyn, I have

> charted a new career. Two and a half months ago, my wife and I moved to

> Rochester, NY, and I was recently hired by the OPO for this area, as a

> Recovery Placement Coordinator. Essentially, my job is multifaceted:

>

> 1. Matching organs with recipients, according to the UNOS transplant list.

>

> 2. Working in the OR, and insuring proper organ preservation and storage for

> transport, and occasionally acting as a surgical assist to the transplant

> team.

>

> 3 Community and professional education on an ongoing basis.

>

> I am married 10 years, with no kids, and that is about it. Penny and know

> each other through our other group, The Liverities.

>

> So that is about it.

>

> Spiro EMT-P

> Recovery Placement Coordinator

> Finger lakes Donor Recovery Network

>

> Liver Transplant - 8/1/97

> RECYCLE YOURSELF! BE AN ORGAN DONOR!

>

> " I'm not in the business. I am the business "

>

> ------------------------------------------------------------------------

>

> eGroups.com home: /group/

> - Simplifying group communications

>

> ------------------------------------------------------------------------

>

> Name: winmail.dat

> winmail.dat Type: WordPerfect Document (6.1) File

(application/x-unknown-content-type-WPWin6.1File)

> Encoding: base64

[Guest guest]

Hi Luanne, thanks for the welcome.

Oh, I also forgot to mention I also have ulcerative colitis (commonly

referred to as UC). That was not diagnosed until a week before my

transplant. I never had any real symptoms from it, and the colonoscopy I

took revealed it to be minor/moderate. Also, as a nice side effect of my

transplant meds, they keep the UC in check as well. UC is also an autoimmune

disorder, commonly linked with PSC, as most of you are already aware.

Spiro EMT-P

Liver Transplant - 8/1/97

RECYCLE YOURSELF! BE AN ORGAN DONOR!

" I'm not in the business. I am the business "

> Re: New member

>

>

> Welcome Dave...

> I'm the mom of Tyler (16 yr old PSC<AIH<Crohns and Rhuemtoid

> Arthritis...It

> sound like you have definitely made lemonade out of lemons...Good for

> you...Ty is a Junoir in HS and interested in the medical

> field...I hope he

> finds as much joy in his job as you do...

> Luanne Ty's mom

>

> ------------------------------------------------------------------------

>

> eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

[Guest guest]

Hi Dave

Welcome to our group. I am the wife of a wonderful man who has been

suffering from PSC since 1993. He had been in pretty good health up

until then. Now I can see a marked difference in him: extreme fatigue,

malnutrition, cramps, etc. He is currently on a transplant list at NE

MEdical Center in Boston. They told us last Fall that it would be a 2

year wait. I have a couple of questions for you:

Do you think that is a definite time period or will they make him wait

many more years if his health doesn't deteriorate at a dangerous rate?

If you don't mind me asking, do you not have children because the

disease made it impossible or is it a personal choice? We have been

trying for a year and a half and just found out that we don't have much

of a chance without going through an infertility specialist. They

don't know if the liver disease is the cause but suspect it is.

Thank you and welcome!

Gracie

[Guest guest]

Norm,

With your Gilbert's Syndrome, did they do any sonagrams to determine if there

was a liver blockage? Are you or do any of your relatives come from the

Meditteranean area? My liver specialist said he also had Gilbert's and has no

other symptons other than an elevated bilirubin.

Larry

[Guest guest]

Hi Dave, welcome to the group and congratulations on your career change. I

sounds like a great position for someone with your job history and life

experiences! I too, am a transplanted Brooklynite (Sheepshead Bay) but only

over the bridge to Staten Island. My husband was dx with PSC last February

after an arduous process with several different doctors. He is now seeing a

hepatologist affiliated with NYU. He is in good shape physically, and has

been asymptomatic. Dx made after LFT's were noted to be elevated on routine

bloodwork. Hopefully, he will maintain this level of health for a long time

to come. As a nurse, I find myself imagining the worst. He is able to stay

calm and has a good attitude. Anyway, I am glad to hear your story. It

gives me hope should we face transplantation down the road. Do your miss

your paramedic days? You must have some great stories! Again welcome... Liz

[Guest guest]

I forgot to add from my last message, that while the liver itself has no

pain receptors, the pain you are feeling is probably an irritation of the

capsule surrounding the liver. This can be caused by those small infections,

probably as a result of a related inflammatory process.

Spiro EMT-P

Organ Recovery/Placement Coordinator

Finger Lakes Donor Recovery Network

Liver Transplant - 8/1/97

RECYCLE YOURSELF! BE AN ORGAN DONOR!

" I'm not in the business. I am the business "

[Guest guest]

Hi Vickie!

I really didn't mean the pain was a good sign -- I can't remember what I

was thinking but that definitely is not what I meant. Another first sign

with this " devil " disease is being confused. When my doctor told my son and

hubby that was one of the first signs, both immediately said " Next! " In

other words, they would know if I were confused or not. However, I

definitely am having a lot of confusion now. The pain came first and now the

confusion.

I have heard from several people who cannot take Darvocet -- I can't

take Demerol.

I told you that my first symptom was the dull, achy pain in my URQ. It

just kept getting worse and worse. The first time I was tested for a liver

disease was about 3-1/2 years ago -- although I really believe I have had it

much longer than that.

I just had a " biggie " two weeks ago. I started bleeding profusely from

my mouth -- major bleeding. I, of course, was taken to the ER and was the

first to be seen. They put a stomach pump into my stomach for 8-1/2 hours

and blood kept coming, coming and coming. Finally they took the pump out and

I started hemorrhaging from the mouth again. The blood was already congealed

and I understand that is a great sign because my blood still clots. Have

been very sick -- before the ER and after -- with horrible stomach aches,

nausea and chills. This and the pain is really hard to take. Pain 24/7 -- it

really gets on your nerves!!

I used to be up, up, up all of the time and didn't let this get me down.

But this latest bout put me back a bit. I just want this horrible pain to

leave. Cannot go anywhere much now and nowhere unless some else drives me.

That is the hardest part for me -- I was my own woman and now everything in

that category has almost made me dependent! I hate this.

Unlike most of us, I am not afraid of dying because I know where I am

going. I know this sounds uppity, but I really do and I can't wait to go. At

last I will be at peace and there will be no more of this pain to deal with.

I just don't have any suggestions because no one has been able to help

me. I do hope you have much better luck!!

Tell me as soon as you get back from your ERCP. I have had 8 of them and

7 liver biopsies, so it isn't bad if you have the best working on you.

Please write.

Hugs,

Biddy

Re: new member

>Biddy,

>Maybe I was wrong maybe I can help someone else even thought this is all

new

>to me, I know that just knowing others out there are going through what you

>are does help.

>I was diagnosed 3 months ago with PSC I had occasional pain and would tell

my

>husband " I feel like I have a gallbladder " . But jaundice and itching is

what

>sent me to the GI along with high liver enzyems. Ever since the ERCP I have

>had a dull achy pain (URQ) But only last week did I start feeling worse,

>more severe pain then usual, and the this past Saturday I had my first

>attack, and then again today (Monday). I go to the GI tomorrow I will let

you

>know what happens. I am not sure yet if he is supportive and the doctor I

>plan to stay with or not.

>What did you mean your pain was a good sign, tell me a little about your

PSC

>and how it started and how long you've had it.

>I think the darvoct makes me sicker espically if I have'nt eaten.

>So glad we met,

>Vicki

>

>------------------------------------------------------------------------

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

>

>

[Guest guest]

ROSE, I HAVE A SUGGESTION. GO TO THE NEAREST SPINA BIFIDA CLINIC IN YOUR

AREA.YOUR DOC, SHOULD BE ABLE TO TELL YOU WHERE THAT IS OR GO ON THE WEB TO THE

SPINA BIFIDA ASSOC.OF WHATEVER YOUR STATE IS. YOU ARE MORE LIKELY TO GET MORE

HONEST AND UNDERSTANDABLE ANSWERS. THAT IS WHAT I DID MANY TIMES TO GET SOME

ADVISE,AND SEE DIFFERENT PEOPLES EXPERIENCES. I HAVE HAD 28 SURGERIES SO FAR. I

AM 41 YEARS OLD .I ALSO VOLUNTEERED AT THE CLINIC,AND GOT ALOT OF INFO FROM

,THE HORSES MOUTH.

GOOD LUCK

[Guest guest]

Dear HollygoLightly,

Thanks for getting back to me....

What symptoms did you experience, to your knowledge, when you were 3? How

did these progress until age 12? And what led to your second surgery at 21?

Rose L

[Guest guest]

Hi! I am a lurker on this board, but wanted to share our

experience. Our daughter was diagnosed w/tethered cord at 3 months

of age. It is extremely rare, as I understand it, to have that

diagnosis at that age w/o having SB. She was being treated for hip

dysplasia at the time and an MRI caught the tether. Her diagnosis

was based on the physical tethering appearing on MRI rather than

any " symptoms. " We were told that this needed treated as soon as

possible to avoid development of any further damage. As a result

she had a spinal cord release at 4 months of age. She does have

some other medical issues, including scoliosis. From my

understanding the rate of retethering differs based on the level of

tether. Our neurosurgeon has told us that b/c our daughter's case

was fairly minor there is only a 2% chance of retethering.

It seems like the piece of info you are missing is " how many

children develop symptoms w/a dx of tether and at what rate? "

I think the suggestion to see someone at a SB clinic is a good one.

I am wondering if your ortho (for the scoliosis) referred you to the

neurosurgeon...having the ortho evaluate her gross motor functioning

in detail or seeing a phsdiatrist (sp?) might also be something to

consider as minor differences in walking/foot placement can be some

of the first symptoms of a tether.

Please keep us updated and if you want any info on the surgery from

a parent's perspective let me know.

(Mom to Norah, 23 months: dx birth DDH, pavlick 6 weeks, closed

reduction 3 months taken out of spica due to other dxs made at that

time, tethered spinal cord release 4 months, closed hip reduction 6

months, 13 weeks spica, 4 months Rhino cruiser 24/7, uretal

reimplantation surgery / hernia repair 18 mnths, open reduction and

femoral osteotomy 22 months - currently in spica)

(scoliosis, solitary kidney, neurogenic bladder/once daily cathing,

intestinal malrotation, ditropan, AFOs prior to spica casting and on

the move)

>

> Hello Everyone,

>

> My eight year old daughter was recently diagnosed with tethered

cord and we were advised by her neurosurgeon to have a surgical

procedure done and of course before my husband and I decide anything

we are trying to gather as much information as possible that best

mirrors my child's symptom profile. Which has been quite a

challenge ...as there is no case histories and there are no

available statistics.

>

> Basically, my daughter is exhibiting a 18 degree curvature of the

spine. She suffers from no other symptoms typically associated with

young children and tethered cord (i.e. incontinence, bowel problems,

back pain, etc.). The only thing is the curve of her spine. The

neurosurgeon stated that like a lighting bolt other symptoms could

happen, most commonly club foot. Leaving you in a position that

instead of one surgery you are faced with two ...one for the

tethered cord and the other to correct the problem which could have

been prevented.

>

> I am going for another consult next week at Children's Miami

Hospital, however, my neurosurgeon who has an aggresive approach to

treatment has basically told me to expect the extreme

opposite...meaning that if they don't see any of the other symtoms

they will not diagnose her with tethered cord.

>

> I'm having a hard time thinking about putting her through a

surgery if she isn't in any discomfort...but what if I opt to

monitor and something worse happens. Or what would happen after

surgery...will she have a future of other required surgeries...the

list goes on.

>

> If anyone has any thoughts, or resources that they feel could help

us that would be great.

>

> P.S. I have already spoken with some members of the group

responding with specific questions to better understand your

experience and thank you for your responses...they truly help even

if it's just getting a different perspective on things.

>

> Thanks!!

>

> Rose L.

>

>

>

>

[Guest guest]

Welcome...

I have Fibromyalgia, Myofacial Pain syndrome which

goes along with fibro a lot...as well as

Osteoarthritis with damage to joints n stuff...

Fibro Fog. It's one of the fun things we get to learn

to live with. Before I knew I had all this stuff I

had my memory slip out from under me a lot and it

concerned me...so I thought if I started learning new

stuff it would keep my brain juices flowing...so I

learned to write HTML and computer stuff and so on. I

can now write web pages and build a computer from

scratch but I still have names, words, and anything

else drop out from under me.

Since then I've learned about fibro fog and all the

fun it can cause like embarassement because of being

in mid sentance and have everything leave your mind in

a flash leaving you standing there with nothing more

to say but " Damn! " .

You deal with Fibro Fog (Brain Fog) with a good sense

of humor. You have to. It just becomes part of

living. My doctor thinks it may be caused by the

stage 4 sleeping problems fibrocytes have. Others see

the constant pain as a distraction to the mind...no

one has any real hard facts as to why it happens.

So...we make up jokes about it.

A short and sweet definition..

http://www.disabilitysecrets.com/fibro/fibro-fibro-and-fibro-fog.html

How to see the humor in it...share your fog with

others.

http://www.geocities.com/cfsdays/follies.htm

http://www.suite101.com/article.cfm/fibro_friends/92752

You can find all sorts of ads for clearing fibro

fog..but if my doc knew of any fog cures he'd of said

so. Mostly just learn to live with it and joke about

it. My family and friends are aware..if my memory

decides to skip out of me...I say " Fog...think of it

later " . Mostly what I wanted to say comes to me later

when I relax.

*¬*.¸¸.·´¨`»*«´¨`·.¸¸.*¬*

On the internet, no knows you're a cat.

~StrykerMom~

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

--- Wyndi wrote:

> Hi my name is Wyndi and I am 28 yrs old have

> recently been diagnosed

> with fibromyalgia. I am married to a wonderful man

> named Chad and we

> have 4 almost 5 yr old twins. I was Diagnosed

> 1-26-07 after months

> of pain and numerous doctor appts. and trips to the

> ER. At first the

> pain started with chest pains, which made me think,

> I was having a

> heart attack. After a trip to the ER and consults

> with cardiologist

> and numerous tests they could only diagnose

> tachycardia ( thank

> goodness ). But the pain kept getting worse

> everytime I would go to

> my PCP he would tell me he could not find anything

> wrong with me and

> he told me he thought my problem was psychological

> and that I should

> see a psychiatrist. So I did, I went and had a

> consult with a

> psychiatrist who then told me that he did not

> believe my problem to

> be psychological and that I should see another

> doctor and find out

> what is going on, if the new PCP can not assist than

> I should follow

> up with an internist. So I went to a new PCP and

> told him all my

> signs and symptoms and he told me I had

> costrocondritis of the chest

> causing the pain in my arms and that the reason my

> back, legs, etc..

> hurt was due to my weight. That threw me for a loop

> since I am only

> 30 lbs overweight. But I took his word about the

> costrocondritis.

> Several weeks later the pain was not any better so I

> went back to

> the new PCP complaining of the same signs and

> symptoms, this time he

> proceeded to tell me that I had probably have a

> pinced nerve that

> needs to be worked out, so he prescribed some more

> medication and

> sent me home. Well you guessed it the pain did not

> go away So I went

> back yet again this time for him to tell me that its

> possibly

> tendonitis, with some more medication, that did

> absolutely nothing.

> A couple of weeks later I went to the new PCP one

> more time and this

> time he told me I had degenerative joint disease and

> that there is

> nothing we can do for it. At this point I have had

> enought and

> decided to go see an internist, who was the first

> doctor to do any

> labs, tests, etc...Upon the examination he told me

> it sounded like

> fibromyalgia and all the tests and labs were with in

> normal limits

> he diagnosed me with fibromyalgia. I am currently

> taking 500 mg of

> Naproxen twice a day ( which does seem to help some

> ) Celexa 40 mg

> once a day and Trazadone 50 mg on an as needed

> basis.

> Below are the issues I am dealing with

>

> One question I do have, is some info I have seen

> have referred to a

> fibro fog, what exactly does one mean when they say

> that? Hope that

> is not a silly question.

>

>

> PHYSIOLOGICAL PROBLEMS:

>

> painful lymph nodes under the arms and neck

> muscle and joint aches with tender and

> trigger points - up to 18 of them

> night sweats and fever

> severe nasal and other allergies

> irritable bowel syndrome (IBS)

> weight change - usually gain

> heart palpitations

> chest pains (non-cardiac)

> hair loss

> carpal tunnel syndrome

> cold feet

> severe and debilitating fatigue

> widespread pain

> numbness in the limbs, not painful like pins &

> needles

> neck

> widespread body pain during/after physical

> exertion

>

> COGNITIVE FUNCTION PROBLEMS:

> spatial disorientation

>

>

> PSYCHOLOGICAL PROBLEMS:

> depression

> anxiety and panic attacks

> personality changes, usually for the worse

> emotional lability (mood swings)

>

> OTHER NERVOUS SYSTEM PROBLEMS:

> sleep disturbances

> headaches

> numb or tingling feelings

> light headedness

> tinnitus (ringing in the ears)

> inability to achieve stage 4 restorative sleep

> morning stiffness in the muscles and joints

> restless leg syndrome

> muscle spasms

>

> Thank you for letting me join your group, looking

> forward to making

> new friends.

>

> Hugs,

> Wyndi

>

>

>

>

>

Lotacats >^.^<

Express Chronic Pain Awareness

http://www.cafepress.com/lotacatspix/549000

________________________________________________________________________________\

____

Yahoo! Music Unlimited

Access over 1 million songs.

http://music.yahoo.com/unlimited

[Guest guest]

a, Personally, I think what you are saying with the tear and the bulge,

it would be enough to create some major pain. I would also follow up with with

a pain specialist. Best of luck finding out how you can " fix " what is going on

with you!

Gayla

http://chronicpain-byladyfrog.com

New Member

Hello,

I am going to jump right in. I am from Colorado Springs and in horrible pain. I

am a single mom of 3 babies: Noah-4, jack-2 and Rose-10 months. I

was injured in the Navy in 1988 when I took a fall down a flight of stair with

the help of someone. I hit my chin on the railing then the back of my head on

the floor. I was in a cervical collar for 7 months as well as medical hold.

Now, I have headaches ( I believe I have a TBI) but my back started with upper

neck pains. As the time went one, I noticed I was holding my neck in a certain

way to avoid pain that the pain started in my lower back from holding that

position. The lower back tends to hurt the absolute worse.

The VA doesn't give a " care " and I have medcaid for about another much. I am

going to try and do a push for Paim Management team at the Univeristy of

Colorado. I have no diagnosis and can't believe my MRI's and CAT scans showed

just a small tear in C5-6 and a small bulge in the lower spine. With all this

pain, you would think there would be more.

That's me.

a

[Guest guest]

Hey everyone.

I am a new member here. I am , 28. I have moderate to severe

chronin

pain. Mostly in my legs, hips, thighs and feet.

Dear , it is nice to meet you and I am so sorry that u are in so much

pain. wwe really do understand here and dont tell u that u can work or its in

your head etc. my opinion, is this.. people who dont have chronic pain, or are

on dissability for reasons, do NOT understand us. Not until they unfortunately

will have to be like us will they EVER understand. they may all say they do...

they dont.

I do hope u get to feeling better.

I need to say to EVERYONE ON THE GROUP. I am back, I have been having alot of

problems medically with my chronic pain then computer prob. and have thousands

of emails to either read or delted. I also have been in bed since monday , had

surgery many years ago, neck surg. with metal plates screws and a fusion, last

monday nite, all of a sudden my right arm was killing me, couldnt get into any

position to make it feel better, omg it was horrible, it actually was my disc

that was bulging, and pressing on a nerve pinching it, sort of what hapens to me

when this exact thing happens to my back, but i didnt know what to expect withe

the neck. anyway, i rested, used hot and cold and massage etc, muscle relaxers,

anything to get better, by friday not good so my medical doc not pain doc,

couldnt get in to him, did some trigger point injections into my neck in a bunch

of different places. and now taking prednisone, which I hate but its helping me

and I coulsnt type at all, stll

having a hard time, forgive the mistakes, LOL, anyway, sunday, today is the

first day that I am feeling a little human. I actually got up and got dressed to

take mylitle doggie out to potty, I ride my scooter, he walks, and then visited

a friend on my block, so I must be feeling better as I couldnt even take BINGO

my little rat terrier for a walk, had to have my room mate and my son had to

come over too, to help me alot, and so I am praying that I will be feeling even

better by tomorrrow.

I have a friend in from calif. not staying here thank goodness she also

disabled, post poli, and she has an accessible van for both of our scooters, and

she wants to do stuff. I may or may not be able to do all she wants, but I will

try a few things.

so... sorry this is long, took me long enough to type it, one finger and my

left arm not right as I am right handed and that is where the pain is.

so HELLO TO ALL MY FRIENDS ON HERE sorry I havent been able to get at my mail

to even tell u all whats going on, and I hope all is going well as can be

expected with all of you

and , you take care and i am glad u found the group. so many nice and

careing people here and we don judge. we are all mostly in the same boat and we

do all understand.

sorry this is so long, making up for lost time on the computer and this list,

and i love talking to my friends here and knowing whats going on with all of u.

take care.

love, denise in orlando florida

Skotland wrote:

Hey everyone.

I am a new member here. I am , 28. I have moderate to severe chronin

pain. Mostly in my legs, hips, thighs and feet. Though now is has gone to

my arms. Been getting back pains as well. And headaches. I don't sleep at

night, 'cause of the pain... I sleep during the day, because of my meds that

I am on. I am 6 different types of meds. I also suffer swelling in my thighs

and legs and ankels. I am on meds for that too. I was just recently put on

a mucsel relaxer. It's helping. It's for my back mainly. I don't get out as

I used to. But when I do, I come in major pain. I only have a few friends

that understands, though they don't have what I have. I miss out on a lot

because of this pain. I used to be really active in my church, but now not

so much becasue of the pain. I can't sit for a long period of time or stand.

If I stand for too long, my feet/toes become numb. I have had this since

2003. I am on SSI and DSHS. I don't work. I wish I did though. I hate it

when someone says, oh you'll be fine someday. OR if you just get out and

about you'll be ok. OR if you lose weight you'll be in less pain.... I hate

those. Mostly comes from family members. They have NO idea the pain I am in.

I also have mild depression. Had since last year. I write poetry. It's a

MAJOR passion and it is also therapy for me as well. Anyway, I am glad that

I am in a group of people who understands what I am going through on a daily

basics. When I am in severe pain, (which lasts up to 4 to 5 days) I am in

bed... I don't think about anything at all... other than the fact, that I am

in pain. I stay away from water.. 'cause it burns my skin. I can't have

anything on my lap. Or nothing touch my skin for that matter. I get stingy

pains as well. I am partielly deaf. My parents have been so supportive

since I have been disabled. So has my sister. I have 2 brothers. One of them

(he is 22) always says, you can do this.. or you know you can work or drive.

I hate it when he says that. Even though I know he means well. I get upset

when he says stuff like that. Because I KNOW I can't work or drive..

(driving part, is I just dont' want to, period) I have a great support

system with my online friends and friends as well. But still, to talk to

someone who actually understands what your going through is nice. Anyway,

hope to hear from all of you soon.

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

MySpace: http://myspace.com/ctr625

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Facebook: http://www.facebook.com/p/_Skotland/502509057

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

Check out my slideshows: http://ctr62578.slide.com/

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

Yahoo 360 page: http://360.yahoo.com/howie_lvr

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Check out Otis Spunkmeir: http://www.catster.com/cats/364695

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AIM: CTR62578

MSN: CTR62578@...

Yahoo: howie_lvr@...

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

" Through the good and bad times, I still have my wings, to fly me to my

dreams " ~Flying With Wings by Skotland

_________________________________________________________________

Watch free concerts with Pink, Rod , Oasis and more. Visit MSN In

Concert today. http://music.msn.com/presents?icid=ncmsnpresentstagline

To read these messages on the Hugs web site go to:

http://groups.yahoo.com/group/Hugs-N-Pain

you can contact me privately at starlyin@...

Rose

Owner/ Moderator Hugs N Pain

God Bless our Troops

Please Pray for them

[Guest guest]

,

I just wanted to drop you a short note and welcome you to the group.

My name is Misty. I'm 46, happily divorced, and live with my 83 yr old mother

in South Florida. I've had FM/CFS/ME for the last 29 years...being in a

wheelchair for the last 15 years.

I'm sure you'll like this group as much as I have. Many really nice people

here. I've got a website, FM/CFS/ME Resources, that is devoted to resources for

people like us. Please let me know if there is anything I can do to help.

Best Wishes,

Misty Patient & Owner

FM/CFS/ME Resources

http://fmcfsme.d-3systems.com/

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

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

Hello, I am new to this group and was wondering if I can use The Work

to help me deal with my boyfriend who drinks too much? I am having a

hard time dealing with his alcoholism and a few months ago I purchased

Byron 's book because I was doing some research on-line and

someone blogged about it. I was also having some difficulties at work

and with my boss so I wanted to try and figure out if my problems at

home were transferring over to my job or vise versa. I read the first

few chapters and applied some of the questions to my situation and

things seemed to get better. But recently, things have become crazy

again and I came across this group after also joining and Alanon online

group. Hopefully, getting back to The Work will help me focus on my

problems of " letting go " .

Mishell