sleep disturbances

[Guest guest]

Kathleen, I've found a combination of meds that helps me sleep better than I

have in several years. I can't remember the last time I slept all through

the night without getting up once. Did it ever happen? The pain has kept

me awake until I fall asleep from exhaustion this past year. For pain I

take dble doses of Wygesic (darvon with tylenol), and Ultram, along with

Flexeril (cyclobenzaprene...a muscle relaxer) and 150 mg of Trazodone

(anti-depressant) about an hour or two before bedtime. By bedtime I'm

relaxed and in a reduced state of pain. Then at bedtime I take the Ambien.

Last night we crawled into bed before 11 PM and it was 6 AM before I

awoke...in pain of course. But that's the longest period of sleep I've had

since childhood, except for when I had the flu in 1978. You might try

asking your doctor about a routine similar to this.

Ray

Re: Pain Clinic Visit

> From: KAKRAG@...

>

> Hi Ray,

>

> Just hang in there until the dosage and side effects wear off. I know

that I

> felt like a huge building had been lifted off my shoulders when I finally

was

> being heard and didn't have to worry if I was going to have enough

medication

> to last until the next refill. And if I happened to have a " bad "

> day and had to take more than usual, I was really up a creek.

>

> Depression is a thing that goes hand in hand with chronic pain I think. I

> just filled out a little questionaire from my doctor about anxiety and

> depression. I thought that I was doing really great as the pain was

really

> in check for the last 4 weeks or so. Much to my suprise when I filled out

> the questions it said that I was moderately depressed and anxoius. (I

> recently stopped the anti-anxiety meds)

>

> Sleeping is still a big problem and I haven't found a medication that

really

> helps with quality sleep. I'm still waking at least 3 to 6 times a night.

> Every time I wake then I smoke too. It used to be about every 3 days I'd

> have a night that I only woke 1to 3 times, but now that's not even

happening.

> Any one have some input or different meds to try. My doctor is willing to

> try anything as far a perscriptions. I've taken Trazadone,Ambien (sp) and

a

> few others but can't remember the names. I hate the hung over feeling the

> next day. I didn't stay on Ambien more than a week and I can't remember

why

> I stopped other than I was still waking up all the time.

> My best to all

> Kathleen

>

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

[Guest guest]

I have worked with back pain since 1975. The best thing that helped me was

getting a electric bed. [hospital type,but home]

I adjust the pain to the lowest and if wake up during sleep,I re-adjust the

pain out.

The result was to drastically reduce pills and get up for 1st time with

little pain. Now I can feel effect of pills when I want to do something

that causes more pills[pain]

roger [lurker]

ps:low oxygen level[sleep apnea/bi pap machine]also effects pain. Leg and

arm pain means low oxygen,also leg jerking while asleep.

ps2.diet: night shade foods increase pain [chocolate,tomatoes etc][10 i

think]

________________________________________________________

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[Guest guest]

Good Morning to all,

Thanks for the information Ray. At the present time I take,

Duregesic Patch (75) and use Lortab10 for break thru pain. Also use Serezone

and Baclofen (muscle relaxer). I cut out 3 other meds this last spring. I

take 2 Baclofen at night to help for sleep, but no with any luck. I've still

got the script for Ambein, so maybe I'll try it again and give it some time.

I get so impatient. lol

Kathleen

ps. I've been trying to send something to you, Ken, at your access 1 address

and it won't go thru. I guess I'll try the regular pain list addy.

Kathleen (again)

[Guest guest]

Hi ,

Interesting information. Had a lot of sleeping position problems &

have ended up with some weird but useful postures. Never thought about a

hospital bed for myself, but do things like place an extra pillow between

my legs to take pressure off, or under legs when sleeping on back.

Ken

At 11:29 AM 8/7/99 +0000, you wrote:

>

>

>I have worked with back pain since 1975. The best thing that helped me was

>getting a electric bed. [hospital type,but home]

>

>I adjust the pain to the lowest and if wake up during sleep,I re-adjust the

>pain out.

>

>The result was to drastically reduce pills and get up for 1st time with

>little pain. Now I can feel effect of pills when I want to do something

>that causes more pills[pain]

>

>roger [lurker]

>

>ps:low oxygen level[sleep apnea/bi pap machine]also effects pain. Leg and

>arm pain means low oxygen,also leg jerking while asleep.

>

>ps2.diet: night shade foods increase pain [chocolate,tomatoes etc][10 i

>think]

>

>

>

>________________________________________________________

>NetZero - We believe in a FREE Internet. Shouldn't you?

>Get your FREE Internet Access and Email at

>http://www.netzero.net/download/index.html

>

>

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

[Guest guest]

[Co-Moderator has inserted paragraph breaks for easier reading]

of this excellent message.

, I have sleep apnea but my main illness is RSD (Reflex Sympathetic

Disorder), I am using a b-pap machine at 5/12. I hope I didn't mix up the

numbers.

My legs do feel uncomfortable during the night to where I must move them a lot.

The sound of the b-pap machine along with an oxygen concentration machine at

4 1/2 liters per minute which is attached to the bi-pap mask in order for me

to be able to breathe in my sleep poses a different type of situation.

Since I had asthma, prior to getting RSD, due to surgery on my right foot to

have 2 Neuromas removed, my asthma has now become chronic Asthma as

well as having COPD (Chronic Obstructive Pulmonary Disease) which was

not there or due to Asthma or sleep apnea.

Most nights I find myself coughing bad enough even with my headboard raised 2

inches with a 2x4 at the headboard. It is great for acid reflux, but I find

myself most times sleeping on the couch in a sitting position with my head

bent backward on the top of the couch in order for me to stop choking or

gagging.

Last Thursday my Pulmonary Specialist gave me a needle he said would allow

me at least a few days of ordinary sleep. It didn't. I am scheduled to see him

this Tuesday and wonder what I should expect from him as he is an excellent

doctor and has great bedside manners but enough is enough.

I also have chronic cellulitis which I don't think in this lifetime I am going

to be able

to wear a beautiful pair of Mephisto shoes I expected to wear to work with my

suits occasionally for the stability that I need and also for the heel

counter to the spinal range where I don't get any such back pain when I am

wearing any Mephisto shoes. Two days later my Pulmonary Doctor and my RSD

Doctor placed me on disability which has now turned last Oct 98 to a pending

SSD claim which all I have been told is the case is with one of their

doctor's who is reviewing my case as we speak.

I am unable to breathe on my own and the oxygen concentrator machine has a 20

foot tubing so I can use my quad cane and get to the bathroom when my husband

is not home when I need a little more support than just the quad cane.

I have over the last month or so had an appointment with my Neurologist for a

annual checkup for my RSD from his perspective, not only the pain management

doctor's. On my way out I was on a Gurney to the front door and the woman

asked me if I could sit on the wooden chairs by the door. I told her I would

try. Within a few minutes, I felt an aura and knew I was going to pass out

or blackout or have a possible seizure since I had felt an Aura.

Next thing I knew the room was spinning around and I started to get

claustrophobic and

felt like I was getting nauseous but suddenly all I remember is hearing an

older lady screaming for help and at that moment my right side of my forehead

made a crack sound on the sidewalk and I went out cold. I awoke in the

hospital with no one at my bedside and I was in the room they call for

observation. AS I awoke, I suddenly felt a fierce pain in my right shin bone

and called the nurse's name about 20 times before she came in to see me. She

had an x-ray machine, to do an x-ray on my right shin bone and when I asked

her what about my head, she said it was nothing and didn't require any

x-rays.

I was released 4 hours later but the problem was that no one had called my

husband or any family member and they were rushing me to use the bed I

was in. I told the nurse to call my husband and when he came in I would

climb off the bed with his assistance. She looked at me as if I ate her lunch

from the refrigerator. She left finally and said it shouldn't be that long or I

am

going to have to sit in the emergency room with my oxygen tank or they will

place a spicket in the wall so I don't run out of oxygen.

Just as she was talking to me in that to me my husband walked in on her

and asked for the nursing supervisor. My hospital room was closed even

thou it was all windows and my husband asked me to repeat what had happened

to me and how was the care (with his mini recorder on right in full view).

No one knew I had an implant in my chest called a portacath and no one

knew I had rheumatic fever as a child which still was a problem for me

as I had to have premedication prior to any bleeding like teeth repair

from a dentist or surgery or even if I get a gash I must have Augmentin

875 Ms every 12 hours.

My husband went ballistic and he was given coffee and asked to talk to the

nursing supervisor in her office. As I lay there unattended without

even a bell to ring for the nurse, and no one else in my room as I went to

sit up on my bed since they told me I was OK, I started to feel an aura

again and this time it was getting stronger and stronger so I pushed myself

backward in the same position I was in and the next thing I remember was

hearing my husband's voice coming in with the nurse.

When I told them what I had felt the Nursing Supervisor told me it was nothing

and I could go home as it probably was anxiety. She never asked what

medications I was on as I was taking Neurontin 3,000 mgs daily for the RSD

for mini seizures which I have had over a three month span so my pain doctor

raised it to 300 mgs and then every 3 days I was told to add another 300 mg

capsule until he stopped it at 3,000.

We were hopeful about 2 hours when I felt another aura coming and told my

husband to call 911 on his cell phone and I would call my cardiologist as I

was having very bad chest pain in my left side of my chest not in my breast

but definitely in my chest. The cardiologist asked me where I was calling

from and when I told him from home, he told me to quickly call 911, which I

told him my husband was and he would stay on the phone until they came. He

also had his wife call another hospital to save a bed in CCU and gave all the

instructions up front. The cardiologist told me that the tests results came

that morning and stated that I didn't have enough oxygen coming from my

arteries to go up to my brain. That was the sudden blackouts and he would

give me medication called Norvasc as my blood pressure which is usually

normal low (100/70 or 90/60) was 148/84 most of last night and all day long

that day. He was now worried about possible brain damage.

I was sent by ambulance into the other hospital who moved me

around very carefully and allowed my husband to stay with me as they

immediately did an MR. of the Brain and an EEG of the Brain. I was told that

the results would go to my cardiologist within about a half a day or sooner.

I should go up to my room and just rest and yes, my husband could stay with

me in the room overnight if he wishes. So they placed me in a double room so

my husband had his own bed. The MR. of the Brain came out normal

but am waiting for the EEG of the brain results.

Upon leaving the hospital, my gait would not line up with the rest of

my body like my legs and arms. I looked like I was walking forward then

backward. I was using my quad cane and the Neurologist my Cardiologist sent

me to see someone else and the nurse helped my husband to carry the large

oxygen tank into the examining room. The results of his examination was my

upper and lower extremities were severely depressed. My voice sounded like I

was speaking all choppy. Like each word was being sounded out for the first

time.

I got frightened and didn't want to speak to the doctor until he got me to relax

and told me what consequences to expect possibly and maybe none of them

will appear. He reiterated what the last Neuro said so I felt at home. Now to

wait for the result of my EEG of the Brain, I believe it is going to be normal

as

almost 6 weeks has passed and my speech is back to normal and the only thing

that is different is my arthritis which was in my wrists, hands & fingers and

ankles,

feet & toes were now thruout my entire body. I couldn't believe it. I had

taken

my 1200 mgs of DayPRo that morning which usually brought the pain level down.

It has never worked since. Now I am taking an Opiod Analgesic called Duragesic

(Fentanyl Transdermal System) The patch was placed on this past Thursday

so I should remove it today at 1 PM. It is a 72 hour patch. I am still feeling

pain but not as severe in some places as in others. I don't know if I should

tell my doctor as my pharmacist told me on the first day that within a few

hours I should feel something to practically nothing in the way of bone pain,

I still feel the bone pain in my hips and in my upper thighs and in my hands and

arms and shin bones and feet. I am lost. I don't know what to do. Can you

give me any

advise??????????? Thank you, Theresa Gratz.

For RSD I also take ms-contin 100 mgs 3x daily, Xanax 1mg 3x daily, Lasix 40 mgs

once daily,

Synthroid .05 once daily, Ambien 10 mgs once at bedtime, And Neurontin 3,000

mgs daily. With this medication it takes some of the edge off the pain that

feels like a lit match that is being swayed under my skin thruout my body and

it lights up in another area and so on. I also get breakthrough pain, which I

take m.s.i.r. for 15 mgs every 4 hours for pain or percoset 2 maximum per

day. I do not take the m.s.i.r. as it doesn't help my RSD anymore. M.s.i.r.

(morphine sulfate immediate release) 15 mgs releases over 4 hours while

ms-contin is morphine sulfate sustained release so 100 mgs releases over an 8

hour period. These are prescribed and received at he same pharmacy at all

times due to the nature of my medication and only one doctor write the

scripts.

My arthritis is spreading due to the RSD which is when we

have any injury or surgery it causes an increase in pain so horrific that

there is no other word to explain it. I run two RSD groups myself and never

thought this would happen to me. Any constructive criticism would also be

appreciated. Thanks, Theresa

[Guest guest]

Theresa,

I am so sorry to hear about your situation. Don't try to accomodate

anyone's wishes about where you " must sit " . Just flat out tell them that

you need to lie down. I can't believe the ineptness of the ER dept.

personnel you told about. I can't believe that they never inquired into

your medication, the implant, your medical history, etc. They should have

not sent you home, but put you in CCU immediately.

The one thing that I do know is that even with the most powerful pain

meds, those who have as many problems and as much pain as you do, will still

feel " breakthrough " pain. Ask your doctors about the breakthrough pain you

still feel when you are on the 72 hour Duragesic patch.

Please keep us informed on how you are doing and how you are feeling.

All of us need to get our feelings out and share with understanding friends.

Ray in Virginia

[Guest guest]

Theresa,

When our medical problems get very complex, it strains the typical

care provided by doctors, hospitals, & particularly ER's. (There are,

however, MDs specialized in Emergency Medicine who generally would be able

to be thorough anyway. Firsst suggestion is that you call around to the

local hospitals (if that's reasonable) & see if one is staffed with MDs

specialized in emergency medicine. If you can find one, that would be a

better option when you have crises.

Although the focus in treatment has been shifting mor & more from

acute to chronic care over the past 50 years, it is not well reflected in

community hospitals that often. There is a medical label for you and is

" Severe, Chronic Multiple complex diagnoses Patient " You probably would

have to carry a sign on a stick to get attention for this in some hospitals.

You need to be treated by a medical team aware of all the problems

& with a list of staff who can respond appropriately. It may be possible

for you to talk with the quality assurance or quality of care coordinators

at 1 or more hospitals & get them to make some preparations for adequate

responsive treatment. It may take flagging your records & designating

special staff to be called in when you present, as well as immediate

notification to your specialists. You need sophisticated responses &

possibly team treatment, even in emergencies.

Most all doctors are almost always available, at least by

telephone, possibly even when they are in the john. So it should be

possible to produce coordinated, appropriate responses 24/7.

It does sound to me like you are experiencing anoxia (lack of

oxygen) to the brain, or a seizure disorder, or both. It is unusually for

an adult to develop a seizure disorder, but with your medical history, who

knows. The EEgs *may* clarify that, but the possibly needs to be considered

even though your blackouts could be attributed to other conditions you

have. It may be possible that the neurontin might mask a seizure disorder.

I don't know.

You got pretty typical ER care, which is wrong for you. Your

doctors, if you can get them to communicate about this, may need to decide

on immediate inpatient admission for you as you continue to present with

emergency problems. A lot of work has to be done here. You may need some

aggressive patient advocacy if you can't get the medical establishment to

be more responsive. The Quality of Care people could be a first step.

From my healthcare & personal experience, some of the symptoms you

list suggest brain malfunction, possible due to oxygen deprivation, but

also possibly due to concussion or contusion. Many times this is not

serious, but it is not unusual for hospital emergency x rays to not reveal

the cause.

You & your husband are certainly justified in your distress &

distrust over how you are being treated. Your treatment is very complex, &

less usual for emergency treatment or urgent care facilities. I would

recommend serious discussions with your docs about how this can be better

handled. It should be possible to get more responsive care. If you don't,

some ER may kill you & have to pay millions of dollars. So why not lets

just keep you alive & get some integrated care.

Ken

At 09:43 AM 8/8/99 -0400, you wrote:

>My husband went ballistic and he was given coffee and asked to talk to the

>nursing supervisor in her office. As I lay there unattended without

>even a bell to ring for the nurse, and no one else in my room

[Guest guest]

Ray, THANK YOU FOR BEING SO UNDERSTANDING ABOUT THE PARAMEDICS. YOU MUST

UNDERSTAND THAT WHERE WE LIVE IT IS CONSIDERED AN URBAN AREA. THE PARAMEDICS

SEE SO MANY GUNSHOT WOUNDS THAN THEY CARE TO. THEY BECOME NUMB TO US

ORDINARY PEOPLE WHO COME IN NEEDING MAJOR ASSISTANCE THAT ISN'T A SIMPLE GUN

SHOT WOUND THAT THEY ALL PRACTICE FOR IN THE HOSPITAL ONCE A WEEK TO ENSURE

THEY GOT HE PROCEDURE DOWN PAT. THEY ONLY SAW A SHORT ITALIAN WOMAN , 5 FEET

TALL AND OVERWEIGHT, BUT NEVER ASKED WHY WHEN TWO OF THEM KNEW ME IN OUR

NEIGHBORHOOD FOR ALL MY 43 YEARS OF MY LIFE. ALL THEY WERE WORRYING WAS THAT

THERE SHIFT WAS OVER IN 30 MINUTES AND THIS CALL WILL TAKE THEM 20 MINUTES

FILLING OUT THE PAPERWORK. THE HOME BASE TRAUMA HOSPITAL IS 5 MINUTES AWAY.

I GAINED AN ENORMOUS

AMOUNT OF WEIGHT WHEN I STARTED ON NEURONTIN. I WAS AN AVERAGE OF 139 LBS FOR

A 5 FEET PERSON WHEN I WHO TRAINED FOR 18 YEARS, IT WAS A COMFORTABLE WEIGHT

FOR ME. I SHOT UP FROM January 1999 WHEN I STARTED TAKING THE NEURONTIN

GOING QUICKLY UP TO 3,000 MGS DAILY IN ABOUT 32 MONTHS. WHEN I WEIGHTED

MYSELF IN MY HOSPITAL STAY, I WAS 238 POUNDS. I STOOD THERE AND CRIED.

I AM A

VEGETARIAN BY CHOICE SINCE I WAS 21 YEARS OLD AND JUST STARTING TO EXERCISE.

THE EXERCISE MADE ME FEEL GOOD AND THE FOOD MADE THE EXERCISE FEEL GOOD. IT

WAS A GOOD MEDITATIVE PERIOD WHILE I WOULD RUN AND REACH THE RUNNER'S HIGH

AND THEN MY MIND WOULD THINK THINGS OUT THAT EARLIER I HAD SAVED FOR THIS

TYPE OF RUN. WHEN I FINISHED I WOULD WALK HOME FROM THE TRACK CALMLY AND

GOING UP THE STEPS GIVING MYSELF MY LAST COUPLE OF STRETCHES KNOWING I WOULD

BE TAKING A WARM RELAXING BATH WHEN I REACHED THE HOUSE. I LAID IN THE BATH

MOST TIMES ABOUT AN HOUR OR SO TO RELAX MY MUSCLES THAT GET TORN WHEN YOU RUN

THE DISTANCES I WOULD BUT IT WAS A COMFORTABLE PAIN IN MY BODY, IT WAS A GET

UP AND GO PAIN THAT TOMORROW I WOULD LOOK FORWARD TO AGAIN. I RAN 8

MARATHONS. THE LAST ONE ONLY 2 WEEKS BEFORE MY SURGERY. HOW IRONIC. I TOLD

MYSELF ON MY WAY HOME FROM THAT MARATHON THAT I WILL SEE YOU AGAIN BUT DEEP

IN MY HEART SOMETHING DIDN'T FEEL RIGHT.

WHEN I WAS TOLD THAT AFTER THE SURGERY TO

HAVE 2 NEUROMAS REMOVED FROM MY RIGHT FOOT INCLUDING REMOVING MY SEIZMOID

BONE AND SOME CALCIFICATION ON THE TIP OF MY BIG TOE AND ALONG THE SIDE OF MY

BUNION WHICH HAD SURGERY ON IT THREE YEARS EARLIER TO SHAVE THE BUNION DOWN.

I WAS RUNNING IN 10 DAYS AFTER THAT SURGERY BUT THIS TIME THE SURGEONS WHO

WERE TWO BROTHERS JOEL & MICHAEL LERNER WHO DID MY FIRST SURGERY TOLD ME THAT

I WOULD NEED AT LEAST 30 DAYS BEFORE I WOULD BE OUT AND ABOUT. I TRUSTED

THEM. THEY ALSO WERE MY RUNNING BIDDIES FROM WAY BACK IN COLLEGE WHICH IS A

FEW BLOCKS FROM THEIR OFFICE IN JERSEY CITY, NEW JERSEY. MY HUSBAND STEVE

LIKED THEM ALSO AS HE IS AFRICAN AMERICAN AND AS THEY WERE JEWISH, THEY WOULD

TELL ME I FOUND THEIR LONG LOST BROTHER. BUT YOU HAD TO BE THERE AS WE HAD A

GREAT RELATIONSHIP FOR MANY YEARS AND NOW WE WERE BRINGING IN STEVE TO OUR

GROUP WHICH HE WOULD SOON GO TO DINNER AT JOEL AND MICHAEL'S FAMILIES HOME

RIGHT AFTER THE SURGERY TO CELEBRATE THAT I AM OK.

THIS KIND FAMILY OPENED THEIR

ARMS TO MY HUSBAND. NOT EVEN MY FAMILY WOULD. BUT I LOVE STEVE (40) AND

THAT IS ALL THAT MATTERS AT MY AGE (44). MY FIRST MARRIAGE ENDED IN ADULTERY

AND I WENT TO MY PRIEST AND WAS SHORTLY DIVORCED WITHOUT ANY ANNOUNCEMENT IN

CHURCH. AFTER 25 YEARS, MY EX-HUSBAND STILL CRIES TO MY MOTHER ASKING HER,

WHY DID HE MAKE SUCH A STUPID MISTAKE. AFTER HEARING THAT MY MOTHER SMILES

AND REMEMBERS WHAT I SAID, WHAT GOES AROUND COMES AROUND. I WOULD NEVER

WISH ANY BAD FEELING TOWARD HIS LADY FRIEND AS I DON'T KNOW WHAT STORY HE

TOLD HER OR WHAT HER CIRCUMSTANCES WERE. EACH HOLIDAY MY EX-HUSBAND AND HIS

LADY FRIEND SHOW UP AND SHE TALKS QUIETLY TO ME FOR A FEW MOMENTS AND WHEN

SHE IS DONE I GO BY MY HUSBAND TO START OUR MEAL ALL TOGETHER AS A FAMILY.

WE HAVE TWO LOVELY CHILDREN WHICH CAME IN THE MARRIAGE AND AFTER ALL MY EX IS

STILL THE GRANDFATHER OF MY GRANDCHILDREN. SO THEY CALL STEVE, POPPY & me,

NANNY WHICH IS WHAT MY GRANDPARENTS WERE CALLED AS THEY WERE THE FIRST IN

THEIR GENERATION TO HAVE THE FIRST CHILDREN FOR THE NEXT GENERATION.

ONCE IN A WHILE I HAVE

SUCH LOVELY DREAMS WITH ME COOKING WITH MY NANNY IN HER HOME. I WAS FOUR.

SHE WOULD HAVE ME STIR THE SAUCE EVEN THU I KNEW THERE WAS VERY LITTLE SAUCE

IN THE POT SHE GAVE ME TO STIR, SHE WOULD TELL ME THAT WAS THE SPECIAL SAUCE

BECAUSE IT WAS MADE WITH LOVE. I LOVED MY NANNY SO MUCH THAT WHEN SHE PASSED

ON IT TOOK ME ALMOST TEN YEARS AND STILL I TRY NOT TO THINK ABOUT NOTHING IF

IT ISN'T POSITIVE ABOUT MY NANNY. LIKE THE TIME SHE WOULD CALL US IN HER

KITCHEN AND TELL ALL SEVEN OF US CHILDREN TO SEE WHAT IS INSIDE AS WE

SCREAMED WITH DELIGHT. SHE HAD MADE HOMEMADE RICE PUDDING WITH RAISINS IN IT

AND FRESH PEACHES WITH THE SKIN CUTOFF WITH A PEACH SAUCE THAT WAS WARM TO

PLACE ACROSS THE PIECES CUT IN LITTLE SLIVERS. OR OTHER TIMES SHE WOULD MAKE

CHOCOLATE ALMOND PUDDING WITH A SPRINKLE OF GRAHAM CRACKER CRUMBS ON TOP. MY

FAVORITE WAS ICE BOX CAKE. WE WOULD HELP WITH A LARGE LASAGNA PAN. FILL THE

BOTTOM WITH GRAM CRACKERS AND MY NANNY WOULD SLOWLY POUR THE LADLE ACROSS THE

GRAHAM CRACKERS AND THEN WE WOULD ALL PUT THE CUT BANANAS ALL ACROSS THE PAN.

WE AGAIN WOULD START WITH THE GRAHAM CRACKERS AND SHE AGAIN WOULD SLOWLY OUR

THE CHOCOLATE ALMOND PUDDING ACROSS AND WE WOULD PUT THE BANANAS AND COVER

THEM ALL OVER THE PAN UNTIL WE GOT TO THE TOP. THEN, IT WS NANNY'S TURN

WHERE SHE WOULD PLACE THE CHOCOLATE ALMOND PUDDING ALL OVER THE TOP THAT IT

JUST MADE THE TOP OF THE PAN AND SHE WOULD CRUSH INA BOWL GRAHAM CRACKERS AND

GENTLY SPRINKLE THEM ALL OVER THE TOP. THEN THIS LARGE LASAGNA PAN WOULD BE

SLID INTO THE REFRIGERATOR UNTIL 2 HOURS LATER.

WE ALL SAT QUIETLY ASKING EVERY 5

MINUTES IF IT WAS READY YET ADN MY NANNY WOULD SAY NO, TAKE A NAP AND WHEN

YOU WAKE UP IT WILL BE FINISHED. SO WE WOULD GO AND LAY ON HER AND MY

POPPY'S BED AND TAKE A NAP AND SHE WOULD WAKE UP WITH HER CARRYING A TRAY

WITH OUR PLATES ON IT FRESH FROM THE REFRIGERATOR. I CAN STILL SMELL THAT

GRAHAM CRACKER CAKE TO THIS DAY. IN FACT I THOUGHT I SMELT IT A FEW MINUTES

AGO WHILE I WAS DESCRIBING IT. MY SURGERY WAS THE NEXT MORNING

AND I WENT IN AND OUT. GOING HOME THE SAME DAY. ONE THING THAT WAS ODD WAS

MY RIGHT FOOT DIDN'T FEEL RIGHT. THE PAIN WAS A DIFFERENT PAIN LIKE I NEVER

FELT PAIN BEFORE AND WITH THE LONG DISTANCE RUNNING I THOUGHT I FELT EVERY

TYPE OF PAIN AROUND. LITTLE DID I KNOW THAT THE CHANGE IN

PAIN WOULD BE WITH ME FOR THE REST OF MY LIFE ONLY

STRONGER....................REGARDS, THERESA GRATZ XXXX OOO

[Guest guest]

Ray, THANK YOU FOR BEING SO UNDERSTANDING ABOUT THE PARAMEDICS. YOU MUST

UNDERSTAND THAT WHERE WE LIVE IT IS CONSIDERED AN URBAN AREA. THE PARAMEDICS

SEE SO MANY GUNSHOT WOUNDS THAN THEY CARE TO. THEY BECOME NUMB TO US

ORDINARY PEOPLE WHO COME IN NEEDING MAJOR ASSISTANCE THAT ISN'T A SIMPLE GUN

SHOT WOUND THAT THEY ALL PRACTICE FOR IN THE HOSPITAL ONCE A WEEK TO ENSURE

THEY GOT HE PROCEDURE DOWN PAT. THEY ONLY SAW A SHORT ITALIAN WOMAN , 5 FEET

TALL AND OVERWEIGHT, BUT NEVER ASKED WHY WHEN TWO OF THEM KNEW ME IN OUR

NEIGHBORHOOD FOR ALL MY 43 YEARS OF MY LIFE. ALL THEY WERE WORRYING WAS THAT

THERE SHIFT WAS OVER IN 30 MINUTES AND THIS CALL WILL TAKE THEM 20 MINUTES

FILLING OUT THE PAPERWORK. THE HOME BASE TRAUMA HOSPITAL IS 5 MINUTES AWAY.

I GAINED AN ENORMOUS

AMOUNT OF WEIGHT WHEN I STARTED ON NEURONTIN. I WAS AN AVERAGE OF 139 LBS FOR

A 5 FEET PERSON WHEN I WHO TRAINED FOR 18 YEARS, IT WAS A COMFORTABLE WEIGHT

FOR ME. I SHOT UP FROM January 1999 WHEN I STARTED TAKING THE NEURONTIN

GOING QUICKLY UP TO 3,000 MGS DAILY IN ABOUT 32 MONTHS. WHEN I WEIGHTED

MYSELF IN MY HOSPITAL STAY, I WAS 238 POUNDS. I STOOD THERE AND CRIED.

I AM A

VEGETARIAN BY CHOICE SINCE I WAS 21 YEARS OLD AND JUST STARTING TO EXERCISE.

THE EXERCISE MADE ME FEEL GOOD AND THE FOOD MADE THE EXERCISE FEEL GOOD. IT

WAS A GOOD MEDITATIVE PERIOD WHILE I WOULD RUN AND REACH THE RUNNER'S HIGH

AND THEN MY MIND WOULD THINK THINGS OUT THAT EARLIER I HAD SAVED FOR THIS

TYPE OF RUN. WHEN I FINISHED I WOULD WALK HOME FROM THE TRACK CALMLY AND

GOING UP THE STEPS GIVING MYSELF MY LAST COUPLE OF STRETCHES KNOWING I WOULD

BE TAKING A WARM RELAXING BATH WHEN I REACHED THE HOUSE. I LAID IN THE BATH

MOST TIMES ABOUT AN HOUR OR SO TO RELAX MY MUSCLES THAT GET TORN WHEN YOU RUN

THE DISTANCES I WOULD BUT IT WAS A COMFORTABLE PAIN IN MY BODY, IT WAS A GET

UP AND GO PAIN THAT TOMORROW I WOULD LOOK FORWARD TO AGAIN. I RAN 8

MARATHONS. THE LAST ONE ONLY 2 WEEKS BEFORE MY SURGERY. HOW IRONIC. I TOLD

MYSELF ON MY WAY HOME FROM THAT MARATHON THAT I WILL SEE YOU AGAIN BUT DEEP

IN MY HEART SOMETHING DIDN'T FEEL RIGHT.

WHEN I WAS TOLD THAT AFTER THE SURGERY TO

HAVE 2 NEUROMAS REMOVED FROM MY RIGHT FOOT INCLUDING REMOVING MY SEIZMOID

BONE AND SOME CALCIFICATION ON THE TIP OF MY BIG TOE AND ALONG THE SIDE OF MY

BUNION WHICH HAD SURGERY ON IT THREE YEARS EARLIER TO SHAVE THE BUNION DOWN.

I WAS RUNNING IN 10 DAYS AFTER THAT SURGERY BUT THIS TIME THE SURGEONS WHO

WERE TWO BROTHERS JOEL & MICHAEL LERNER WHO DID MY FIRST SURGERY TOLD ME THAT

I WOULD NEED AT LEAST 30 DAYS BEFORE I WOULD BE OUT AND ABOUT. I TRUSTED

THEM. THEY ALSO WERE MY RUNNING BIDDIES FROM WAY BACK IN COLLEGE WHICH IS A

FEW BLOCKS FROM THEIR OFFICE IN JERSEY CITY, NEW JERSEY. MY HUSBAND STEVE

LIKED THEM ALSO AS HE IS AFRICAN AMERICAN AND AS THEY WERE JEWISH, THEY WOULD

TELL ME I FOUND THEIR LONG LOST BROTHER. BUT YOU HAD TO BE THERE AS WE HAD A

GREAT RELATIONSHIP FOR MANY YEARS AND NOW WE WERE BRINGING IN STEVE TO OUR

GROUP WHICH HE WOULD SOON GO TO DINNER AT JOEL AND MICHAEL'S FAMILIES HOME

RIGHT AFTER THE SURGERY TO CELEBRATE THAT I AM OK.

THIS KIND FAMILY OPENED THEIR

ARMS TO MY HUSBAND. NOT EVEN MY FAMILY WOULD. BUT I LOVE STEVE (40) AND

THAT IS ALL THAT MATTERS AT MY AGE (44). MY FIRST MARRIAGE ENDED IN ADULTERY

AND I WENT TO MY PRIEST AND WAS SHORTLY DIVORCED WITHOUT ANY ANNOUNCEMENT IN

CHURCH. AFTER 25 YEARS, MY EX-HUSBAND STILL CRIES TO MY MOTHER ASKING HER,

WHY DID HE MAKE SUCH A STUPID MISTAKE. AFTER HEARING THAT MY MOTHER SMILES

AND REMEMBERS WHAT I SAID, WHAT GOES AROUND COMES AROUND. I WOULD NEVER

WISH ANY BAD FEELING TOWARD HIS LADY FRIEND AS I DON'T KNOW WHAT STORY HE

TOLD HER OR WHAT HER CIRCUMSTANCES WERE. EACH HOLIDAY MY EX-HUSBAND AND HIS

LADY FRIEND SHOW UP AND SHE TALKS QUIETLY TO ME FOR A FEW MOMENTS AND WHEN

SHE IS DONE I GO BY MY HUSBAND TO START OUR MEAL ALL TOGETHER AS A FAMILY.

WE HAVE TWO LOVELY CHILDREN WHICH CAME IN THE MARRIAGE AND AFTER ALL MY EX IS

STILL THE GRANDFATHER OF MY GRANDCHILDREN. SO THEY CALL STEVE, POPPY & me,

NANNY WHICH IS WHAT MY GRANDPARENTS WERE CALLED AS THEY WERE THE FIRST IN

THEIR GENERATION TO HAVE THE FIRST CHILDREN FOR THE NEXT GENERATION.

ONCE IN A WHILE I HAVE

SUCH LOVELY DREAMS WITH ME COOKING WITH MY NANNY IN HER HOME. I WAS FOUR.

SHE WOULD HAVE ME STIR THE SAUCE EVEN THU I KNEW THERE WAS VERY LITTLE SAUCE

IN THE POT SHE GAVE ME TO STIR, SHE WOULD TELL ME THAT WAS THE SPECIAL SAUCE

BECAUSE IT WAS MADE WITH LOVE. I LOVED MY NANNY SO MUCH THAT WHEN SHE PASSED

ON IT TOOK ME ALMOST TEN YEARS AND STILL I TRY NOT TO THINK ABOUT NOTHING IF

IT ISN'T POSITIVE ABOUT MY NANNY. LIKE THE TIME SHE WOULD CALL US IN HER

KITCHEN AND TELL ALL SEVEN OF US CHILDREN TO SEE WHAT IS INSIDE AS WE

SCREAMED WITH DELIGHT. SHE HAD MADE HOMEMADE RICE PUDDING WITH RAISINS IN IT

AND FRESH PEACHES WITH THE SKIN CUTOFF WITH A PEACH SAUCE THAT WAS WARM TO

PLACE ACROSS THE PIECES CUT IN LITTLE SLIVERS. OR OTHER TIMES SHE WOULD MAKE

CHOCOLATE ALMOND PUDDING WITH A SPRINKLE OF GRAHAM CRACKER CRUMBS ON TOP. MY

FAVORITE WAS ICE BOX CAKE. WE WOULD HELP WITH A LARGE LASAGNA PAN. FILL THE

BOTTOM WITH GRAM CRACKERS AND MY NANNY WOULD SLOWLY POUR THE LADLE ACROSS THE

GRAHAM CRACKERS AND THEN WE WOULD ALL PUT THE CUT BANANAS ALL ACROSS THE PAN.

WE AGAIN WOULD START WITH THE GRAHAM CRACKERS AND SHE AGAIN WOULD SLOWLY OUR

THE CHOCOLATE ALMOND PUDDING ACROSS AND WE WOULD PUT THE BANANAS AND COVER

THEM ALL OVER THE PAN UNTIL WE GOT TO THE TOP. THEN, IT WS NANNY'S TURN

WHERE SHE WOULD PLACE THE CHOCOLATE ALMOND PUDDING ALL OVER THE TOP THAT IT

JUST MADE THE TOP OF THE PAN AND SHE WOULD CRUSH INA BOWL GRAHAM CRACKERS AND

GENTLY SPRINKLE THEM ALL OVER THE TOP. THEN THIS LARGE LASAGNA PAN WOULD BE

SLID INTO THE REFRIGERATOR UNTIL 2 HOURS LATER.

WE ALL SAT QUIETLY ASKING EVERY 5

MINUTES IF IT WAS READY YET ADN MY NANNY WOULD SAY NO, TAKE A NAP AND WHEN

YOU WAKE UP IT WILL BE FINISHED. SO WE WOULD GO AND LAY ON HER AND MY

POPPY'S BED AND TAKE A NAP AND SHE WOULD WAKE UP WITH HER CARRYING A TRAY

WITH OUR PLATES ON IT FRESH FROM THE REFRIGERATOR. I CAN STILL SMELL THAT

GRAHAM CRACKER CAKE TO THIS DAY. IN FACT I THOUGHT I SMELT IT A FEW MINUTES

AGO WHILE I WAS DESCRIBING IT. MY SURGERY WAS THE NEXT MORNING

AND I WENT IN AND OUT. GOING HOME THE SAME DAY. ONE THING THAT WAS ODD WAS

MY RIGHT FOOT DIDN'T FEEL RIGHT. THE PAIN WAS A DIFFERENT PAIN LIKE I NEVER

FELT PAIN BEFORE AND WITH THE LONG DISTANCE RUNNING I THOUGHT I FELT EVERY

TYPE OF PAIN AROUND. LITTLE DID I KNOW THAT THE CHANGE IN

PAIN WOULD BE WITH ME FOR THE REST OF MY LIFE ONLY

STRONGER....................REGARDS, THERESA GRATZ XXXX OOO

[Guest guest]

Tasha, I have full blown RSD and yes, it has gone thru all my internal organs

due to a surgery i needed to save my life. i had 4 fibroid tumors that were

an average of 3 cm each and the Uterus was grown into my intestinal wall and

into my stomach wall also. so a special surgeon was called into disconnect my

intestines and my stomach by taking out only minimal muscles and tissues in

each area. I received 29 staples outside not including what was done inside.

I was told ahead of time that I may need a hysterectomy if they found cancer

as they believed I had an ovarian mass. I was 39 and would be 40, 3 weeks

later. The same day surgery turned into a four day hospitalization as I had a

102.7 fever and had constant chills until the third day which is when the

fever broke also. I felt so weak and was not told to get the pain

to calm down I needed a binder. Once the nurse placed the binder on me I was

so comfortable I did not want to take it off. The only problem

I had was a nasty nurse who met me and was nice, and then met my husband who

was African American like her, and all of a sudden she caught an attitude

that lasted all four days. She would scream at me to get out of bed to go to

the bathroom. I would try to tell her I had severe RSD and couldn't walk

without my cane and she would keep screaming and pulled my hands off the

walls several times when I tried to hold on.

Once my husband got involved as they gave me a morphine

pump and on the second day I told her I didn't want the pump I only wanted my

ms-contin 45 mgs every 8 hours, she refused to take off the needle and

instead said that I didn't use it for one hour no wonder it wasn't working

and pressed the button. The

next thing i knew i was so high and paranoid that if like everyone in the

room, even the visitors of the girl next tome where looking at me and i felt

like i was shrinking and shrinking, so i took out the needle and as i did, my

husband came in and contacted the nursing supervisor to tell them that i was

asking for four hours to be removed from this pump and they said i needed to

be on it for 2 more days. well, my husband took everything else from the

pump off y arm and the nest thing we new my doctor had called the front desk

and the nasty nurse came in and said it is no way you had this on for 4 hours

after you complained and my husband said yes, she did as i was talking to her

on the phone when she told you as a matter of fact I have it taped, do you

want to listen. He pressed the tape and you could hear how nasty she was to

me even to the point of screaming at me to get up from the bed because she

had 5 children and she got up from the bed. It also showed when she wouldn't

let me tell her why I could not walk unassisted.

When I was home from the hospital about 1 week, I received a

letter telling me that this nurse o longer worked there as she resigned as of

the previous Friday. The hospital hopes this terrible ordeal will not

prevent me from coming in again or telling others about this ordeal as it is

an isolated one. I later learned it wasn't an isolated one, it was common.

your friend, Theresa Gratz.

[Guest guest]

Tasha, I have full blown RSD and yes, it has gone thru all my internal organs

due to a surgery i needed to save my life. i had 4 fibroid tumors that were

an average of 3 cm each and the Uterus was grown into my intestinal wall and

into my stomach wall also. so a special surgeon was called into disconnect my

intestines and my stomach by taking out only minimal muscles and tissues in

each area. I received 29 staples outside not including what was done inside.

I was told ahead of time that I may need a hysterectomy if they found cancer

as they believed I had an ovarian mass. I was 39 and would be 40, 3 weeks

later. The same day surgery turned into a four day hospitalization as I had a

102.7 fever and had constant chills until the third day which is when the

fever broke also. I felt so weak and was not told to get the pain

to calm down I needed a binder. Once the nurse placed the binder on me I was

so comfortable I did not want to take it off. The only problem

I had was a nasty nurse who met me and was nice, and then met my husband who

was African American like her, and all of a sudden she caught an attitude

that lasted all four days. She would scream at me to get out of bed to go to

the bathroom. I would try to tell her I had severe RSD and couldn't walk

without my cane and she would keep screaming and pulled my hands off the

walls several times when I tried to hold on.

Once my husband got involved as they gave me a morphine

pump and on the second day I told her I didn't want the pump I only wanted my

ms-contin 45 mgs every 8 hours, she refused to take off the needle and

instead said that I didn't use it for one hour no wonder it wasn't working

and pressed the button. The

next thing i knew i was so high and paranoid that if like everyone in the

room, even the visitors of the girl next tome where looking at me and i felt

like i was shrinking and shrinking, so i took out the needle and as i did, my

husband came in and contacted the nursing supervisor to tell them that i was

asking for four hours to be removed from this pump and they said i needed to

be on it for 2 more days. well, my husband took everything else from the

pump off y arm and the nest thing we new my doctor had called the front desk

and the nasty nurse came in and said it is no way you had this on for 4 hours

after you complained and my husband said yes, she did as i was talking to her

on the phone when she told you as a matter of fact I have it taped, do you

want to listen. He pressed the tape and you could hear how nasty she was to

me even to the point of screaming at me to get up from the bed because she

had 5 children and she got up from the bed. It also showed when she wouldn't

let me tell her why I could not walk unassisted.

When I was home from the hospital about 1 week, I received a

letter telling me that this nurse o longer worked there as she resigned as of

the previous Friday. The hospital hopes this terrible ordeal will not

prevent me from coming in again or telling others about this ordeal as it is

an isolated one. I later learned it wasn't an isolated one, it was common.

your friend, Theresa Gratz.

[Guest guest]

Theresa:

May I ask a question what is RSD?

Jeff

jkeith@...

[Guest guest]

Theresa:

May I ask a question what is RSD?

Jeff

jkeith@...

[Guest guest]

Theresa,

I am so sorry to hear about you situation. I do wish i could help you in

some way..May i ask where your RSD is??. Has it touched any internal organs?

I sure hope not!. I do know alot about RSD as i read up on it because a few

ppl thought i may have it.

I do wish i could help you.

You are in my prayers hon!

Love and Hugs & Prayers

Tasha

Re: Sleep disturbances

>From: Runner7394@...

>

>[Co-Moderator has inserted paragraph breaks for easier reading]

>of this excellent message.

>, I have sleep apnea but my main illness is RSD (Reflex Sympathetic

>Disorder), I am using a b-pap machine at 5/12. I hope I didn't mix up the

>numbers.

>

>My legs do feel uncomfortable during the night to where I must move them a

lot.

>The sound of the b-pap machine along with an oxygen concentration machine

at

>4 1/2 liters per minute which is attached to the bi-pap mask in order for

me

>to be able to breathe in my sleep poses a different type of situation.

>Since I had asthma, prior to getting RSD, due to surgery on my right foot

to

>have 2 Neuromas removed, my asthma has now become chronic Asthma as

>well as having COPD (Chronic Obstructive Pulmonary Disease) which was

>not there or due to Asthma or sleep apnea.

>

>Most nights I find myself coughing bad enough even with my headboard raised

2

>inches with a 2x4 at the headboard. It is great for acid reflux, but I

find

>myself most times sleeping on the couch in a sitting position with my head

>bent backward on the top of the couch in order for me to stop choking or

>gagging.

>

>Last Thursday my Pulmonary Specialist gave me a needle he said would allow

>me at least a few days of ordinary sleep. It didn't. I am scheduled to

see him

>this Tuesday and wonder what I should expect from him as he is an excellent

>doctor and has great bedside manners but enough is enough.

>

>I also have chronic cellulitis which I don't think in this lifetime I am

going to be able

>to wear a beautiful pair of Mephisto shoes I expected to wear to work with

my

>suits occasionally for the stability that I need and also for the heel

>counter to the spinal range where I don't get any such back pain when I am

>wearing any Mephisto shoes. Two days later my Pulmonary Doctor and my RSD

>Doctor placed me on disability which has now turned last Oct 98 to a

pending

>SSD claim which all I have been told is the case is with one of their

>doctor's who is reviewing my case as we speak.

>

>I am unable to breathe on my own and the oxygen concentrator machine has a

20

>foot tubing so I can use my quad cane and get to the bathroom when my

husband

>is not home when I need a little more support than just the quad cane.

>

>I have over the last month or so had an appointment with my Neurologist for

a

>annual checkup for my RSD from his perspective, not only the pain

management

>doctor's. On my way out I was on a Gurney to the front door and the woman

>asked me if I could sit on the wooden chairs by the door. I told her I

would

>try. Within a few minutes, I felt an aura and knew I was going to pass out

>or blackout or have a possible seizure since I had felt an Aura.

>

>Next thing I knew the room was spinning around and I started to get

claustrophobic and

>felt like I was getting nauseous but suddenly all I remember is hearing an

>older lady screaming for help and at that moment my right side of my

forehead

>made a crack sound on the sidewalk and I went out cold. I awoke in the

>hospital with no one at my bedside and I was in the room they call for

>observation. AS I awoke, I suddenly felt a fierce pain in my right shin

bone

>and called the nurse's name about 20 times before she came in to see me.

She

>had an x-ray machine, to do an x-ray on my right shin bone and when I asked

>her what about my head, she said it was nothing and didn't require any

>x-rays.

>

>I was released 4 hours later but the problem was that no one had called my

>husband or any family member and they were rushing me to use the bed I

>was in. I told the nurse to call my husband and when he came in I would

>climb off the bed with his assistance. She looked at me as if I ate her

lunch

>from the refrigerator. She left finally and said it shouldn't be that long

or I am

>going to have to sit in the emergency room with my oxygen tank or they will

>place a spicket in the wall so I don't run out of oxygen.

>

>Just as she was talking to me in that to me my husband walked in on her

>and asked for the nursing supervisor. My hospital room was closed even

>thou it was all windows and my husband asked me to repeat what had happened

>to me and how was the care (with his mini recorder on right in full view).

>

>No one knew I had an implant in my chest called a portacath and no one

>knew I had rheumatic fever as a child which still was a problem for me

>as I had to have premedication prior to any bleeding like teeth repair

>from a dentist or surgery or even if I get a gash I must have Augmentin

>875 Ms every 12 hours.

>

>My husband went ballistic and he was given coffee and asked to talk to the

>nursing supervisor in her office. As I lay there unattended without

>even a bell to ring for the nurse, and no one else in my room as I went to

>sit up on my bed since they told me I was OK, I started to feel an aura

>again and this time it was getting stronger and stronger so I pushed myself

>backward in the same position I was in and the next thing I remember was

>hearing my husband's voice coming in with the nurse.

>

>When I told them what I had felt the Nursing Supervisor told me it was

nothing

>and I could go home as it probably was anxiety. She never asked what

>medications I was on as I was taking Neurontin 3,000 mgs daily for the RSD

>for mini seizures which I have had over a three month span so my pain

doctor

>raised it to 300 mgs and then every 3 days I was told to add another 300 mg

>capsule until he stopped it at 3,000.

>

>We were hopeful about 2 hours when I felt another aura coming and told my

>husband to call 911 on his cell phone and I would call my cardiologist as I

>was having very bad chest pain in my left side of my chest not in my breast

>but definitely in my chest. The cardiologist asked me where I was calling

>from and when I told him from home, he told me to quickly call 911, which I

>told him my husband was and he would stay on the phone until they came. He

>also had his wife call another hospital to save a bed in CCU and gave all

the

>instructions up front. The cardiologist told me that the tests results

came

>that morning and stated that I didn't have enough oxygen coming from my

>arteries to go up to my brain. That was the sudden blackouts and he would

>give me medication called Norvasc as my blood pressure which is usually

>normal low (100/70 or 90/60) was 148/84 most of last night and all day long

>that day. He was now worried about possible brain damage.

>

>I was sent by ambulance into the other hospital who moved me

>around very carefully and allowed my husband to stay with me as they

>immediately did an MR. of the Brain and an EEG of the Brain. I was told

that

>the results would go to my cardiologist within about a half a day or

sooner.

>I should go up to my room and just rest and yes, my husband could stay with

>me in the room overnight if he wishes. So they placed me in a double room

so

>my husband had his own bed. The MR. of the Brain came out normal

>but am waiting for the EEG of the brain results.

>

>Upon leaving the hospital, my gait would not line up with the rest of

>my body like my legs and arms. I looked like I was walking forward then

>backward. I was using my quad cane and the Neurologist my Cardiologist

sent

>me to see someone else and the nurse helped my husband to carry the large

>oxygen tank into the examining room. The results of his examination was my

>upper and lower extremities were severely depressed. My voice sounded like

I

>was speaking all choppy. Like each word was being sounded out for the first

>time.

>

>I got frightened and didn't want to speak to the doctor until he got me to

relax

>and told me what consequences to expect possibly and maybe none of them

>will appear. He reiterated what the last Neuro said so I felt at home.

Now to

>wait for the result of my EEG of the Brain, I believe it is going to be

normal as

>almost 6 weeks has passed and my speech is back to normal and the only

thing

>that is different is my arthritis which was in my wrists, hands & fingers

and ankles,

>feet & toes were now thruout my entire body. I couldn't believe it. I had

taken

>my 1200 mgs of DayPRo that morning which usually brought the pain level

down.

>

>It has never worked since. Now I am taking an Opiod Analgesic called

Duragesic

>(Fentanyl Transdermal System) The patch was placed on this past Thursday

>so I should remove it today at 1 PM. It is a 72 hour patch. I am still

feeling

>pain but not as severe in some places as in others. I don't know if I

should

>tell my doctor as my pharmacist told me on the first day that within a few

>hours I should feel something to practically nothing in the way of bone

pain,

>I still feel the bone pain in my hips and in my upper thighs and in my

hands and

>arms and shin bones and feet. I am lost. I don't know what to do. Can

you give me any

>advise??????????? Thank you, Theresa Gratz.

>

>For RSD I also take ms-contin 100 mgs 3x daily, Xanax 1mg 3x daily, Lasix

40 mgs once daily,

>Synthroid .05 once daily, Ambien 10 mgs once at bedtime, And Neurontin

3,000

>mgs daily. With this medication it takes some of the edge off the pain

that

>feels like a lit match that is being swayed under my skin thruout my body

and

>it lights up in another area and so on. I also get breakthrough pain,

which I

>take m.s.i.r. for 15 mgs every 4 hours for pain or percoset 2 maximum per

>day. I do not take the m.s.i.r. as it doesn't help my RSD anymore.

M.s.i.r.

>(morphine sulfate immediate release) 15 mgs releases over 4 hours while

>ms-contin is morphine sulfate sustained release so 100 mgs releases over an

8

>hour period. These are prescribed and received at he same pharmacy at all

>times due to the nature of my medication and only one doctor write the

>scripts.

>

>My arthritis is spreading due to the RSD which is when we

>have any injury or surgery it causes an increase in pain so horrific that

>there is no other word to explain it. I run two RSD groups myself and

never

>thought this would happen to me. Any constructive criticism would also be

>appreciated. Thanks, Theresa

>

>

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

[Guest guest]

Theresa,

I am so sorry to hear about you situation. I do wish i could help you in

some way..May i ask where your RSD is??. Has it touched any internal organs?

I sure hope not!. I do know alot about RSD as i read up on it because a few

ppl thought i may have it.

I do wish i could help you.

You are in my prayers hon!

Love and Hugs & Prayers

Tasha

Re: Sleep disturbances

>From: Runner7394@...

>

>[Co-Moderator has inserted paragraph breaks for easier reading]

>of this excellent message.

>, I have sleep apnea but my main illness is RSD (Reflex Sympathetic

>Disorder), I am using a b-pap machine at 5/12. I hope I didn't mix up the

>numbers.

>

>My legs do feel uncomfortable during the night to where I must move them a

lot.

>The sound of the b-pap machine along with an oxygen concentration machine

at

>4 1/2 liters per minute which is attached to the bi-pap mask in order for

me

>to be able to breathe in my sleep poses a different type of situation.

>Since I had asthma, prior to getting RSD, due to surgery on my right foot

to

>have 2 Neuromas removed, my asthma has now become chronic Asthma as

>well as having COPD (Chronic Obstructive Pulmonary Disease) which was

>not there or due to Asthma or sleep apnea.

>

>Most nights I find myself coughing bad enough even with my headboard raised

2

>inches with a 2x4 at the headboard. It is great for acid reflux, but I

find

>myself most times sleeping on the couch in a sitting position with my head

>bent backward on the top of the couch in order for me to stop choking or

>gagging.

>

>Last Thursday my Pulmonary Specialist gave me a needle he said would allow

>me at least a few days of ordinary sleep. It didn't. I am scheduled to

see him

>this Tuesday and wonder what I should expect from him as he is an excellent

>doctor and has great bedside manners but enough is enough.

>

>I also have chronic cellulitis which I don't think in this lifetime I am

going to be able

>to wear a beautiful pair of Mephisto shoes I expected to wear to work with

my

>suits occasionally for the stability that I need and also for the heel

>counter to the spinal range where I don't get any such back pain when I am

>wearing any Mephisto shoes. Two days later my Pulmonary Doctor and my RSD

>Doctor placed me on disability which has now turned last Oct 98 to a

pending

>SSD claim which all I have been told is the case is with one of their

>doctor's who is reviewing my case as we speak.

>

>I am unable to breathe on my own and the oxygen concentrator machine has a

20

>foot tubing so I can use my quad cane and get to the bathroom when my

husband

>is not home when I need a little more support than just the quad cane.

>

>I have over the last month or so had an appointment with my Neurologist for

a

>annual checkup for my RSD from his perspective, not only the pain

management

>doctor's. On my way out I was on a Gurney to the front door and the woman

>asked me if I could sit on the wooden chairs by the door. I told her I

would

>try. Within a few minutes, I felt an aura and knew I was going to pass out

>or blackout or have a possible seizure since I had felt an Aura.

>

>Next thing I knew the room was spinning around and I started to get

claustrophobic and

>felt like I was getting nauseous but suddenly all I remember is hearing an

>older lady screaming for help and at that moment my right side of my

forehead

>made a crack sound on the sidewalk and I went out cold. I awoke in the

>hospital with no one at my bedside and I was in the room they call for

>observation. AS I awoke, I suddenly felt a fierce pain in my right shin

bone

>and called the nurse's name about 20 times before she came in to see me.

She

>had an x-ray machine, to do an x-ray on my right shin bone and when I asked

>her what about my head, she said it was nothing and didn't require any

>x-rays.

>

>I was released 4 hours later but the problem was that no one had called my

>husband or any family member and they were rushing me to use the bed I

>was in. I told the nurse to call my husband and when he came in I would

>climb off the bed with his assistance. She looked at me as if I ate her

lunch

>from the refrigerator. She left finally and said it shouldn't be that long

or I am

>going to have to sit in the emergency room with my oxygen tank or they will

>place a spicket in the wall so I don't run out of oxygen.

>

>Just as she was talking to me in that to me my husband walked in on her

>and asked for the nursing supervisor. My hospital room was closed even

>thou it was all windows and my husband asked me to repeat what had happened

>to me and how was the care (with his mini recorder on right in full view).

>

>No one knew I had an implant in my chest called a portacath and no one

>knew I had rheumatic fever as a child which still was a problem for me

>as I had to have premedication prior to any bleeding like teeth repair

>from a dentist or surgery or even if I get a gash I must have Augmentin

>875 Ms every 12 hours.

>

>My husband went ballistic and he was given coffee and asked to talk to the

>nursing supervisor in her office. As I lay there unattended without

>even a bell to ring for the nurse, and no one else in my room as I went to

>sit up on my bed since they told me I was OK, I started to feel an aura

>again and this time it was getting stronger and stronger so I pushed myself

>backward in the same position I was in and the next thing I remember was

>hearing my husband's voice coming in with the nurse.

>

>When I told them what I had felt the Nursing Supervisor told me it was

nothing

>and I could go home as it probably was anxiety. She never asked what

>medications I was on as I was taking Neurontin 3,000 mgs daily for the RSD

>for mini seizures which I have had over a three month span so my pain

doctor

>raised it to 300 mgs and then every 3 days I was told to add another 300 mg

>capsule until he stopped it at 3,000.

>

>We were hopeful about 2 hours when I felt another aura coming and told my

>husband to call 911 on his cell phone and I would call my cardiologist as I

>was having very bad chest pain in my left side of my chest not in my breast

>but definitely in my chest. The cardiologist asked me where I was calling

>from and when I told him from home, he told me to quickly call 911, which I

>told him my husband was and he would stay on the phone until they came. He

>also had his wife call another hospital to save a bed in CCU and gave all

the

>instructions up front. The cardiologist told me that the tests results

came

>that morning and stated that I didn't have enough oxygen coming from my

>arteries to go up to my brain. That was the sudden blackouts and he would

>give me medication called Norvasc as my blood pressure which is usually

>normal low (100/70 or 90/60) was 148/84 most of last night and all day long

>that day. He was now worried about possible brain damage.

>

>I was sent by ambulance into the other hospital who moved me

>around very carefully and allowed my husband to stay with me as they

>immediately did an MR. of the Brain and an EEG of the Brain. I was told

that

>the results would go to my cardiologist within about a half a day or

sooner.

>I should go up to my room and just rest and yes, my husband could stay with

>me in the room overnight if he wishes. So they placed me in a double room

so

>my husband had his own bed. The MR. of the Brain came out normal

>but am waiting for the EEG of the brain results.

>

>Upon leaving the hospital, my gait would not line up with the rest of

>my body like my legs and arms. I looked like I was walking forward then

>backward. I was using my quad cane and the Neurologist my Cardiologist

sent

>me to see someone else and the nurse helped my husband to carry the large

>oxygen tank into the examining room. The results of his examination was my

>upper and lower extremities were severely depressed. My voice sounded like

I

>was speaking all choppy. Like each word was being sounded out for the first

>time.

>

>I got frightened and didn't want to speak to the doctor until he got me to

relax

>and told me what consequences to expect possibly and maybe none of them

>will appear. He reiterated what the last Neuro said so I felt at home.

Now to

>wait for the result of my EEG of the Brain, I believe it is going to be

normal as

>almost 6 weeks has passed and my speech is back to normal and the only

thing

>that is different is my arthritis which was in my wrists, hands & fingers

and ankles,

>feet & toes were now thruout my entire body. I couldn't believe it. I had

taken

>my 1200 mgs of DayPRo that morning which usually brought the pain level

down.

>

>It has never worked since. Now I am taking an Opiod Analgesic called

Duragesic

>(Fentanyl Transdermal System) The patch was placed on this past Thursday

>so I should remove it today at 1 PM. It is a 72 hour patch. I am still

feeling

>pain but not as severe in some places as in others. I don't know if I

should

>tell my doctor as my pharmacist told me on the first day that within a few

>hours I should feel something to practically nothing in the way of bone

pain,

>I still feel the bone pain in my hips and in my upper thighs and in my

hands and

>arms and shin bones and feet. I am lost. I don't know what to do. Can

you give me any

>advise??????????? Thank you, Theresa Gratz.

>

>For RSD I also take ms-contin 100 mgs 3x daily, Xanax 1mg 3x daily, Lasix

40 mgs once daily,

>Synthroid .05 once daily, Ambien 10 mgs once at bedtime, And Neurontin

3,000

>mgs daily. With this medication it takes some of the edge off the pain

that

>feels like a lit match that is being swayed under my skin thruout my body

and

>it lights up in another area and so on. I also get breakthrough pain,

which I

>take m.s.i.r. for 15 mgs every 4 hours for pain or percoset 2 maximum per

>day. I do not take the m.s.i.r. as it doesn't help my RSD anymore.

M.s.i.r.

>(morphine sulfate immediate release) 15 mgs releases over 4 hours while

>ms-contin is morphine sulfate sustained release so 100 mgs releases over an

8

>hour period. These are prescribed and received at he same pharmacy at all

>times due to the nature of my medication and only one doctor write the

>scripts.

>

>My arthritis is spreading due to the RSD which is when we

>have any injury or surgery it causes an increase in pain so horrific that

>there is no other word to explain it. I run two RSD groups myself and

never

>thought this would happen to me. Any constructive criticism would also be

>appreciated. Thanks, Theresa

>

>

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

[Guest guest]

Jeff , to answer your question what is RSD, here is an example of what

is not happening in our brain when an accident or a surgical procedure occurs

incorrectly. Hope this helps you.

When you fall on the sidewalk and bump your

knee, your knee sends signals to the brain saying you are in pain. The brain

sends a signal back saying the pain is gone in due time. When

I fall on the sidewalk and bum my knee, my knee sends signals to the brain

saying I am in pain. My brain does not send the signal back saying the pain

is gone in due time. This leaves the injured site is in a constant state of

pain forever. When

I had my foot surgery to have 2 Neuromas were removed from my right foot.

the signal went to my brain saying it was in pain all during the surgery.

The brain never sent the signal back saying the pain is gone or going away in

a reasonable amount of time. So the surgical sight is in a constant state of

pain. As time goes on, without a proper diagnosis, the pain which

is the nerve damaging more nerves, is going to start to travel as my body was

one of the unlucky ones who gets the 50/50 chance of a problem. there is no

way to diagnose this pain or RSD until at least two weeks later. but due to

the amount of surgery or if you are in an accident, many people heal at a

different rate.

I would be crying all night which was no good so I would go to work

everyday, no matter how I felt. I am an Accountant and would place a chair

from my office to keep my foot elevated at all times like my doctor told me.

Each time that I would complain of unusual strong

pain for a surgery that was 3 or 4 weeks ago and was now running up the right

leg adn i couldn't walk. the response was another prescription of percoset.

this originally helped but over time since there was no diagnosis but from

the Neurologist as Acute Pain Syndrome, it was an evasive way for saying yes,

there was pain but they could not identify the exact name. I had a nerve

conduction test on my veins and thought my head hit the ceiling from pain and

then they wanted to make sure that my muscles were not yet effected and used

these thick needles to place in my right thigh, in my arch, in my thigh and i

lost track after that. the moment he would start, i was screaming so bad i

did not recognize my own voice so the Neurologist stopped and apologized.

Still no diagnosis. And I suffered in bed for 4 days and hadn't slept most

times until by body would just collapse from exhaustion.

It was 9 months later that I made an appointment with

another foot surgeon for a second opinion. He took his Time with the

examination. Most of the time touching my feet in certain places. He finally

asked me a number of questions adn then told my husband and myself that I had

Reflex Sympathetic Dystrophy which is in the Parkinson's Family but is much

worse. There is no known cure to look forward to. NO two patients

are the same so each patients needs must be tailored to that patient

including the 8 epidorals in my spine with a sedative which was valium. I had

and I lost track of trigger point injections including under my knee caps

which help me to walk. I need them right now but my pain management doctor

is on vacation and I do not trust anyone else. Eventually over time it

spreads thruout your body affecting every limb. My tongue hurts without

warning. This is called breakthru pain as it is a sudden unexpected pain

that on top of the RSD pain you already have is staying and moving in

different parts of your body until it chooses to stop or continue for days.

If I go outside to go to my doctor, I will suffer extreme breakthru pain

including my RSD and Arthritis which is one of the illnesses you get with

RSD, I feel the pain I can only be described as HORRIFIC. And that is when

the pain level is low. You see that the

RSD affects the skin, tissue, organs, veins, bone and anything else left on

your body like muscles. You may have seen someone with no muscle on their

leg or arm. That is RSD. It atrophies the muscle, meaning wastes it away.

If we try to exercise, it reacts with the breakthru pain that at my stage

this breakthru pain medication does not work anymore. I am now on

medication management due to all the procedures that can be done are finished

and all they can do now is treat me with medication, and when one doesn't

work then another one is tried all thru your lifetime.

Suicide rate is enormous. There are 6 million people with RSD in the

united states alone not including others who are misdiagnosed.

If you would like anymore info, I can send it to you in snail mail

tomorrow. Your friend, Theresa Gratz xxxx oooo WE only sleep when our bodies

are so exhausted that we practically pass out and wake up the next day with

about 5 hours of sleep and sometimes well rested for the amount of sleep we

had. Without enough sleep your body has no time to repair itself.

[Guest guest]

Theresa,

What a beautiful post about your Nanny! Sure wish I had known her! I would

have enjoyed that Graham Cracker ice box cake. My mother made a similar

dessert. She died in March of this year from respiratory failure.

One of the things I note in all of our stories on this list is that at some

point in our experiences we suddenly realize that life will never be the

same for us again. This is very difficult to accept. Chronic disease and

chronic pain steal away from us so much of what made life pleasurable. The

thought of never being able to enjoy that activity again is extremely

depressing.

One of the things that we can do to help ourselves is to keep a journal of

our memories. Memories of the good moments in our lives and the good people

that shared those moments with us. Memories of the funny times, holidays,

picnics, sitting on a porch and talking. When we get depressed we can pick

that journal up and read, and remember, and laugh again. The pain and

illness can never steal our memories.

I keep a personal journal. I don't write in it every day, but it is a

source of help and hope for me. I've done this for over19 years now. When

I begin to doubt myself, I can reread about times in my own life when I was

successful at something, when I helped someone, when I laughed and life was

beautiful. Those memories keep me " alive " and hoping.

My son called me yesterday. His wife has a possible diagnosis of M.S. They

are both 23 and in graduate school. They have 3 small children. All of the

burden of taking care of the children and housekeeping, and going to school,

and working, has fallen upon him. He said yesterday, " Dad, I'm really

losing it. " He cried. My son never cries. I told him that he needed to

grieve over the losses he and his family are suffering because of his wife's

illness. Grieving is part of healing. Life may never be the same for them

again. But they have hope. Sometimes hope is all we have.

I lived in Chicago for most of my life. I know how horrible urban

situations can be. How callous many employees who are overburdened can be.

I live in a rural area now, but there are many callous people here, too. I

suffered a terrible loss three years ago because of callous people who

couldn't understand what my illness was doing to me. I hung on in that

situation until a psychiatrist told me that most of my anxiety over my

illness was due to trying to please the people who wouldn't or couldn't

understand my situation. The solution was so obvious then, walk away from

that situation. I did. I grieved for months, but now realize that deciding

to leave was the best decision I could have ever made for myself and for my

family. I go to a local church where the people are loving, tender, kind,

and generous. Most of them know the battles I go through each day and they

tell me that they are praying for me and ask how I'm doing...and really mean

it. What a difference! I hope that you have people in your life who can

give you the comfort you need.

Ray

[Guest guest]

Theresa,

What a beautiful post about your Nanny! Sure wish I had known her! I would

have enjoyed that Graham Cracker ice box cake. My mother made a similar

dessert. She died in March of this year from respiratory failure.

One of the things I note in all of our stories on this list is that at some

point in our experiences we suddenly realize that life will never be the

same for us again. This is very difficult to accept. Chronic disease and

chronic pain steal away from us so much of what made life pleasurable. The

thought of never being able to enjoy that activity again is extremely

depressing.

One of the things that we can do to help ourselves is to keep a journal of

our memories. Memories of the good moments in our lives and the good people

that shared those moments with us. Memories of the funny times, holidays,

picnics, sitting on a porch and talking. When we get depressed we can pick

that journal up and read, and remember, and laugh again. The pain and

illness can never steal our memories.

I keep a personal journal. I don't write in it every day, but it is a

source of help and hope for me. I've done this for over19 years now. When

I begin to doubt myself, I can reread about times in my own life when I was

successful at something, when I helped someone, when I laughed and life was

beautiful. Those memories keep me " alive " and hoping.

My son called me yesterday. His wife has a possible diagnosis of M.S. They

are both 23 and in graduate school. They have 3 small children. All of the

burden of taking care of the children and housekeeping, and going to school,

and working, has fallen upon him. He said yesterday, " Dad, I'm really

losing it. " He cried. My son never cries. I told him that he needed to

grieve over the losses he and his family are suffering because of his wife's

illness. Grieving is part of healing. Life may never be the same for them

again. But they have hope. Sometimes hope is all we have.

I lived in Chicago for most of my life. I know how horrible urban

situations can be. How callous many employees who are overburdened can be.

I live in a rural area now, but there are many callous people here, too. I

suffered a terrible loss three years ago because of callous people who

couldn't understand what my illness was doing to me. I hung on in that

situation until a psychiatrist told me that most of my anxiety over my

illness was due to trying to please the people who wouldn't or couldn't

understand my situation. The solution was so obvious then, walk away from

that situation. I did. I grieved for months, but now realize that deciding

to leave was the best decision I could have ever made for myself and for my

family. I go to a local church where the people are loving, tender, kind,

and generous. Most of them know the battles I go through each day and they

tell me that they are praying for me and ask how I'm doing...and really mean

it. What a difference! I hope that you have people in your life who can

give you the comfort you need.

Ray

[Guest guest]

Oh Ray, I read your message and it brought back so many memories. I am

so sorry to hear about your son's wife. I feel for both of them. As

mentioned in my introduction a while ago, I too have MS and life has

certainly give me quite a few twists and turns since the dignosis 10

years ago.

Your are so right with regards to the grieving process. It is a step we

must take, but a hard one. That one, as well as all the others -

barttering, depression, anger, denial and maybe a couple I might have

missed. One thing I recommend from my experience, is for them to seek

guidance through their local MS Society. They have a group there for

newly diagnosed people and their spouses. The class I was in was mostly

couples but there were a few single people as well. It was very

enlighting but it was only after the therepy did it help me through all

those stages.

I have quite a few sites that I visit regularly for updated information

and support. It's amazing all the people out there suffering from this

unpredictable/unforgiving illness. MS seems to effect everyone

differently and the support I get from these people is so comforting to

me. My neuro has also recommended one of these sites so I figured if he

visits it, it must be reputable.

Should you wish any further information from me, I would be too happy to

help. I only wish I knew as many people with MS 10 years ago as I do

now. It would have made the struggle a little easier.

My thoughts are with you,

Sheryl

Ray in Virginia wrote:

> My son called me yesterday. His wife has a possible diagnosis of M.S. They

> are both 23 and in graduate school. They have 3 small children. All of the

> burden of taking care of the children and housekeeping, and going to school,

> and working, has fallen upon him. He said yesterday, " Dad, I'm really

> losing it. " He cried. My son never cries. I told him that he needed to

> grieve over the losses he and his family are suffering because of his wife's

> illness. Grieving is part of healing. Life may never be the same for them

> again. But they have hope. Sometimes hope is all we have.

[Guest guest]

Theresa,

WOW thats some ordeal!. I'm very sorry you have to go thru that sort of

pain, I know i'm only a kid but i see what my mother goes thru. She has

RSD,Narcolepy,FM,CFIDS,

BTW do u know a few ppl named, Crafty,Margie?? I just feel like i know you

from somewhere as i've seen your name before.

Love and Hugs

Tasha

Re: Sleep disturbances

>From: Runner7394@...

>

>Tasha, I have full blown RSD and yes, it has gone thru all my internal

organs

>due to a surgery i needed to save my life. i had 4 fibroid tumors that

were

>an average of 3 cm each and the Uterus was grown into my intestinal wall

and

>into my stomach wall also. so a special surgeon was called into disconnect

my

>intestines and my stomach by taking out only minimal muscles and tissues in

>each area. I received 29 staples outside not including what was done

inside.

>I was told ahead of time that I may need a hysterectomy if they found

cancer

>as they believed I had an ovarian mass. I was 39 and would be 40, 3 weeks

>later. The same day surgery turned into a four day hospitalization as I had

a

>102.7 fever and had constant chills until the third day which is when the

>fever broke also. I felt so weak and was not told to get the pain

>to calm down I needed a binder. Once the nurse placed the binder on me I

was

>so comfortable I did not want to take it off. The only

problem

>I had was a nasty nurse who met me and was nice, and then met my husband

who

>was African American like her, and all of a sudden she caught an attitude

>that lasted all four days. She would scream at me to get out of bed to go

to

>the bathroom. I would try to tell her I had severe RSD and couldn't walk

>without my cane and she would keep screaming and pulled my hands off the

>walls several times when I tried to hold on.

> Once my husband got involved as they gave me a morphine

>pump and on the second day I told her I didn't want the pump I only wanted

my

>ms-contin 45 mgs every 8 hours, she refused to take off the needle and

>instead said that I didn't use it for one hour no wonder it wasn't working

>and pressed the button. The

>next thing i knew i was so high and paranoid that if like everyone in the

>room, even the visitors of the girl next tome where looking at me and i

felt

>like i was shrinking and shrinking, so i took out the needle and as i did,

my

>husband came in and contacted the nursing supervisor to tell them that i

was

>asking for four hours to be removed from this pump and they said i needed

to

>be on it for 2 more days. well, my husband took everything else from the

>pump off y arm and the nest thing we new my doctor had called the front

desk

>and the nasty nurse came in and said it is no way you had this on for 4

hours

>after you complained and my husband said yes, she did as i was talking to

her

>on the phone when she told you as a matter of fact I have it taped, do you

>want to listen. He pressed the tape and you could hear how nasty she was

to

>me even to the point of screaming at me to get up from the bed because she

>had 5 children and she got up from the bed. It also showed when she

wouldn't

>let me tell her why I could not walk unassisted.

> When I was home from the hospital about 1 week, I received a

>letter telling me that this nurse o longer worked there as she resigned as

of

>the previous Friday. The hospital hopes this terrible ordeal will not

>prevent me from coming in again or telling others about this ordeal as it

is

>an isolated one. I later learned it wasn't an isolated one, it was common.

>your friend, Theresa Gratz.

>

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

[Guest guest]

Tasha, I am a listowner for two groups for RSD not in the one list groups.

your friend, Theresa Gratz

[Guest guest]

Thanks for the information . This sounds alot like what I experience,

but my dx is Fibromyalgia and Chronic Myofascial Pain Syndrome. I also have

DDD (degenerative Disc Disease) and many surgeries on my spine thru out the

years. Arthritis is in my spine now also. I have a very difficult time

telling one from another. It all adds up to pain anyway.

I will look for more information on RSD.

Thanks

Kathleen

[Guest guest]

A friend took her son to Dr. in Asheville, a DAN! doc, and he

tested T's neurotransmitters. All levels with the exception of

seratonin were several *times* higher than the high end of the

range. From there, Doc prescribed some amino acid blends which seem

to be helping his levels return to normal. I mean, to have

epinephrine 3x higher than the high end of the reference range! No

wonder he couldn't sleep at night.

I don't know the effectiveness of these tests, they are relatively

new, but seems that they might be onto trying to find the root cause

of sleep/behavior issues that create a negative impact.

HTH,

Debi

[Guest guest]

My sleep problems are GONE now that I am using Estrogen gel. I didn't even realize it but it was night sweats and hot flashes that were waking and keeping me up. Also alot of my heat intolerance seems to be gone now!

Artistic Grooming Hurricane, West Virginia

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[Guest guest]

My sleep problems are GONE now that I am using Estrogen gel. I didn't even realize it but it was night sweats and hot flashes that were waking and keeping me up. Also alot of my heat intolerance seems to be gone now!

Artistic Grooming Hurricane, West Virginia

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.775 / Virus Database: 522 - Release Date: 10/8/2004