NEED ADVICE

May 14, 2002

At 11:43 PM 5/13/02 -0700, Stacie wrote:

hi all me again once again i need

advice about my dad he wants to kill

himself says he has no perpus in life

Dear Stacie,

Day to day living with difficult emotions makes life seem somewhat

unbearable. But, from what we all can see, you are capable of

taking the bull by the horns and working out whatever problems you are

faced with.

I think that your Dad is going through one of these difficult

times. It is hard for any grown man or woman to be knocked down a

few pegs by health. I had a lot of anger about it when it first

happened to me with by-pass surgery...........and even to this day I have

resentment in my heart for all the things that have gone wrong

since. But the point is, it is is OK to look at these things and

get a little angry, and then put them away and go on with living.

After all, there could be wonderful things ahead that we are not even

aware of.

Be patient with your Dad - I would just make sure he knows that you are

there with him and know how he feels. I wouldn't get on his case

when he threatens suicide. He is letting go of a lot of

emotions. If you feel at some point that he may no longer be

responsible for his actions, call 911 or get a friend or neighbor to help

you.

I believe in our heavenly Father, and most everyday I pray. It

seems that one of my own personal requests is for God to help me to quit

focusing on myself and my problems and focus on others. God doesn't

always answer our prayers right away or the way we want them answered,

but we must not give up and keep on asking. Do you remember the old

saying " The squeaky wheel gets the oil " . So ask God to

help you and to help your Father get through these tuff days.

Take care, Stacie

Tom in PA

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

September 11, 2002

,

I have fibromyalgia, and I too am still looking for help with fatigue.

Sleep helps, I do take vitamins, but just a multi-vitamin and some

calcium. When I start feeling very fatigued, I listen to my body

closer. When my body says I'm tired, I do what I can to rest. Not

always possible, but I cancel extra things that may interfere.

need advice

To all that have Fibromyalgia or Chronic Fatigue Syndrome,,,

Is there anything that one can take (besides vitamins) to help with

the chronic fatigue??? Not looking for medical advice, just if you

tried somthing and if it helps???

Thanks

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September 11, 2002

Thank You! I find my problem is more of getting every day things done. I just cant muster up enough energy to do things that desperately need to be done. I already take vitamins but that dosnt help. Any one with any advice I would much appreciate it. RE: need advice ,I have fibromyalgia, and I too am still looking for help with fatigue.Sleep helps, I do take vitamins, but just a multi-vitamin and somecalcium. When I start feeling very fatigued, I listen to my bodycloser. When my body says I'm tired, I do what I can to rest. Notalways possible, but I cancel extra things that may interfere. -----Original Message-----From: missymelanie2002 [mailto:missymelanie@...] Sent: Monday, September 09, 2002 12:23 PM Subject: need adviceTo all that have Fibromyalgia or Chronic Fatigue Syndrome,,,Is there anything that one can take (besides vitamins) to help with the chronic fatigue??? Not looking for medical advice, just if you tried somthing and if it helps???Thanks~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives and Digest Attachment Pictures:-/messagesChat:- Scheduled Daily Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list youreceive.2) Daily Digest - sends you 25 messages in one single email for you tobrowse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at yourconvenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

September 11, 2002

I hear you! I have to really take a lot of breaks, or I just can't really accomplish things. Sorry I can't be of more help, if you find anything, let me know!!

Mays

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September 11, 2002

Will do, I saw somewhere about Virgin Coconut Oil, but Im so leary about this stuff I dont want to spend money untill I hear from someone that it worked for them! RE: need advice I hear you! I have to really take a lot of breaks, or I just can't really accomplish things. Sorry I can't be of more help, if you find anything, let me know!! Mays Group Owner "People helping people" handd1@... www./ Add this card to your address book ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives and Digest Attachment Pictures:-/messagesChat:- Scheduled Daily Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

September 11, 2002

Hello ,

In 40 years I haven't found anything yet... ( I was put back on Plaquanil for my Lupus being out of remission and it Does seem to be starting to help the over all pain not too be so bad!!! I still have the aches and fatigue, but the intolerable pain is finally lessing )

lots of folks have different ways that they say help them... Some use drugs, some walk, some exercise, some do water arobics everyone is different with this nasty thing (

((( Pain Free Hugs )))

Helen

To all that have Fibromyalgia or Chronic Fatigue Syndrome,,,

Is there anything that one can take (besides vitamins) to help with

the chronic fatigue??? Not looking for medical advice, just if you

tried somthing and if it helps???

Thanks

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Helen

angelbear1129@...

September 12, 2002

Thanks for the advice Helen!! I have got most of the intolerable pain in control most of the time, Its just this fatigue, I tried exercising but it really didn't help with the fatigue and I don't know about other people but I found it to make my pain worse (which I found really odd cause most people say that exercise is supposed to be good for the pain??) I'm just odd I guess. Again thank you!! Re: need advice Hello , In 40 years I haven't found anything yet... ( I was put back on Plaquanil for my Lupus being out of remission and it Does seem to be starting to help the over all pain not too be so bad!!! I still have the aches and fatigue, but the intolerable pain is finally lessing ) lots of folks have different ways that they say help them... Some use drugs, some walk, some exercise, some do water arobics everyone is different with this nasty thing ( ((( Pain Free Hugs ))) Helen To all that have Fibromyalgia or Chronic Fatigue Syndrome,,,Is there anything that one can take (besides vitamins) to help with the chronic fatigue??? Not looking for medical advice, just if you tried somthing and if it helps???Thanks <center> Signature Creations by PANDORASBOX8 </center> If there is a Download with this email, DO NOT OPEN IT !Please notify Me !!!Thank-YouHelenangelbear1129@... ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives and Digest Attachment Pictures:-/messagesChat:- Scheduled Daily Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

March 17, 2003

a, a few years ago I was in the exact same place but not trying to deal

with a pain clinic. I did end up going into the hospital psychiatric ward

for treatment. It helped a lot. I can feel your frustration and pain and I

hug you. Sometimes you have to do whatever it takes for them to listen to

you. They do not have to understand but they do need to listen to your

suffering. Biggest hugs and courage, thinking of you, Pattymelt

Need Advice

> I have so much to write but yet it's hard to begin. I will try to cut

> out minor details to keep it short. I went out on disability

> mid-February. At the time I was having problems with the pain from

> Stills, high blood pressure and thyroid problems. I had so many Dr.

> appointments my boss started to complain about all my

> appointments, plus that was during the time Norman had had his knee

> replacement surgery and I had to take him to therapy and I ended up

> getting very depressed. The last 6 months I have had a lot of

> depression. Back in December I went to my doctor and told him I was

> getting more depressed and he increased the prozac dosage, which

> helped for a few weeks but then I got more depressed again. My doctor

> approved my disability so I could go to all my appointments and not

> have to worry about my job. He referred me to a pain clinic. I

> called for an appointment and first had to be seen by a doctor at the

> hospital to approve my going to the pain clinic. They gave me the

> approval and I made an appointment and they had me see the

> clinicpsychologist first. He told me he didn't think my insurance

> would cover my going through the program because approximately 5 years

> ago I went through a program at a different pain clinic, which has

> since closed down because the head doctor retired. I don't understand

> this. Anyway, I talked to this guy for about an hour and he seemed

> very concerned about my depression and had me make an appointment to

> come back and see the other clinic psychologist,since he couldn't take

> on anymore patients. I saw her a week later and told her I am getting

> more depressed and frustrated because no one seems to be doing

> anything about my pain. I feel like no one is listening to me! I

> hurt and I'm tired of it. I'm tired of leaving work everyday in tears

> because the pain is so bad. I'm back to work now and in the same

> situation I was before, nothing has changed. She said on the 31st of

> March I will see the nurse practitioner at the pain clinic and I will

> start seeing them for all my medication instead of my regular doctor.

> I tried to get in to see my rheumatologist but he didn't have an

> opening until May 7th. I feel like crying and screaming " why isn't

> anyone listening to me, I hurt " ! While I was out on disability I had

> a headache for 5 days straight. I tried Oxycodone and had 2 imitrex

> injections over a 5 day period and nothing helped. I honestly thought

> I was going to drop dead of an aneurysm. I am beginning to feel

> resentful of healthy people. I want everyone to feel the pain that I

> feel so they will know what I am talking about. I want to go to the

> hospital and tell them I refuse to leave until someone helps me. I

> don't know what to do anymore. I feel like why am I having to suffer

> like this. This group has always been there for me and now I feel

> more depressed than ever. My rash probably came back due to stress.

>

March 17, 2003

Dear a,

I hear you, I hear you but I don't have a concrete answer

for you. It's like *no one* understands the pain we experience!

It might sound cruel, but I can't count the number of times I have

wished for a doctor, a relative, some friend, could walk (or try to) in

my shoes for two weeks. At this point, most of my pain is under

control. (I still have some rough times though) My sanity was

in jepordy before my knee, and shoulder replacements. I can

only *imagine* how some of you can stand the pain every day.

It got to the point where I did threaten suicide. You *have* to

get some relief somehow.

a, I do feel that you have been under a great deal of stress.

Whether that is the cause of the rash or not, I do not know...but,

even itching can drive a person up the walls.

It's only normal to feel some resentment towards healthy people.

You do need to see a good Rhuematologist. I got tired of the one

I had for so many years, because when I'd tell him how sick I felt,

he's just sigh, and look bored...and anyway, I finally stood up for

myself. I called The Mayo Clinic and have seen a Rhuematologist

there. I have my second appointment April 14 th. As you live in

Minnesota, have you thought of seeing a doctor at The Mayo Clinic?

Perhaps you would get some comfort and peace of mind. There are

some very kind compassionate doctor's there.

((((((((((((((((((((((((((a))))))))))))))))))))))))))))))

A big hug for you,

~tricia~

Wisconsin

**************************************************************************

-- Need Advice

I have so much to write but yet it's hard to begin. I will try to cut

out minor details to keep it short. I went out on disability

mid-February. At the time I was having problems with the pain from

Stills, high blood pressure and thyroid problems. I had so many Dr.

appointments my boss started to complain about all my

appointments, plus that was during the time Norman had had his knee

replacement surgery and I had to take him to therapy and I ended up

getting very depressed. The last 6 months I have had a lot of

depression. Back in December I went to my doctor and told him I was

getting more depressed and he increased the prozac dosage, which

helped for a few weeks but then I got more depressed again. My doctor

approved my disability so I could go to all my appointments and not

have to worry about my job. He referred me to a pain clinic. I

called for an appointment and first had to be seen by a doctor at the

hospital to approve my going to the pain clinic. They gave me the

approval and I made an appointment and they had me see the

clinicpsychologist first. He told me he didn't think my insurance

would cover my going through the program because approximately 5 years

ago I went through a program at a different pain clinic, which has

since closed down because the head doctor retired. I don't understand

this. Anyway, I talked to this guy for about an hour and he seemed

very concerned about my depression and had me make an appointment to

come back and see the other clinic psychologist,since he couldn't take

on anymore patients. I saw her a week later and told her I am getting

more depressed and frustrated because no one seems to be doing

anything about my pain. I feel like no one is listening to me! I

hurt and I'm tired of it. I'm tired of leaving work everyday in tears

because the pain is so bad. I'm back to work now and in the same

situation I was before, nothing has changed. She said on the 31st of

March I will see the nurse practitioner at the pain clinic and I will

start seeing them for all my medication instead of my regular doctor.

I tried to get in to see my rheumatologist but he didn't have an

opening until May 7th. I feel like crying and screaming " why isn't

anyone listening to me, I hurt " ! While I was out on disability I had

a headache for 5 days straight. I tried Oxycodone and had 2 imitrex

injections over a 5 day period and nothing helped. I honestly thought

I was going to drop dead of an aneurysm. I am beginning to feel

resentful of healthy people. I want everyone to feel the pain that I

feel so they will know what I am talking about. I want to go to the

hospital and tell them I refuse to leave until someone helps me. I

don't know what to do anymore. I feel like why am I having to suffer

like this. This group has always been there for me and now I feel

more depressed than ever. My rash probably came back due to stress.

..

March 18, 2003

So true a, if I had had insurance or someone to listen to my pain I

would not have ended up so desperate. It is truly sad when a person cannot

find help. Especially when your in that place you don't even know where to

turn or who to call. I hope you can find the right support from a doctor

and some medication for the pain. My understanding is with you. Let me

know any time you wish a visit. Pattymelt

----- Original Message -----

From: " a "

> See Patty, that proves my point. Weren't you frustrated that they paid

more

> attention to your depression rather than your pain? I wouldn't be so

> depressed and need psychiatric care if they would just stop the pain.

March 19, 2003

Dear a,

I just wanted you to know that my heart and thoughts are with you. Sometimes

this pain is so bad and it is so frustrating not to get the help you so

desperately seek. I hope some of the advice from others here is helpful (i

may try it myself!) . with love,

March 26, 2003

In a message dated 3/26/03 6:27:52 PM Pacific Standard Time, klhx3@...

writes:

> a good blood sugar is 60-120 even aftering fasting for eight hours.

Thanks, , had not been fasting for this test which is what is

puzzling me. My blood sugar gets too low (I get symptoms) when it is below

70. So, I'm wondering if this is an ongoing problem is having. We

drew the blood about 3:30 in the afternoon, and he had a normal eating day

beforehand.

Sandi

March 26, 2003

Wow Sandi,

That IgA is a great value!!! Did you do the IgG subclasses ?(he could have

selective antibody deficiency)--but they can treat that! Don't know anything

about the Blood sugar because we always do a fasting blood sugar. I am so

glad that the IgA is within normal limits. Did they do a saliva test to make

sure he has secretory IgA?

--Martha

March 26, 2003

Sandi:

Congratulations! It's my understanding that illness doesn't affect the

numbers " that " much, so be happy at least something has come up. I stood in

your shoes so I know that right now you don't trust the tests. I found it

very hard to believe any time any numbers came up, it was like, " yeah, that's

great but why is she still sick then " . But eventually I came to accept what a

great thing it was and that little by little, maybe things are improving and

if there are still deficiencies somewhere, at least here's one or two things

that are improving. Hurrah!

That said, I'm wondering about 's polysaccharide antibodies, considering

his history of sinus infections. Have they checked the pneumo antibodies

lately?

I'd say with an IgA that far into the normal zone, you don't have to worry

that the results are affected by illness or even a reaction to the antiserum.

No, it just sounds great! The IgG isn't stunningly wonderful but at least

it's in the normal range. 's IgG, when it came up to the low 500s, I

have to say she wasn't any healthier than she had been previously. But it was

nice to know I didn't have to be SO paranoid about disease, as hopefully

those are enough " gamma armies " to protect her.

BUT I know you are probably thinking what I thought before (did they mix up

the results with somebody else's???), and it's hard to believe.

(mom to Kate, born 9/19/02, dairy intolerant; and , age 4, dairy

intolerant -- currently has polysaccharide antibody def, previously had

transient IgG, IgA, t-cell & other defs)

March 26, 2003

In a message dated 3/26/03 8:00:14 PM Pacific Standard Time,

K979@... writes:

> Did they do a saliva test to make

> sure he has secretory IgA?

Martha,

was telling me that this wasn't necessary, but I think it was. What

would this test specifically tell us? I'm not sure what the difference is

between the saliva and the blood?? They did not test Ig subclasses--because

we were all expecting the problem to be IgA!!! Leave it to Bri to surprise

everyone. Now, we need the subclasses when he's not infected. I am a little

suspicious of total IgG being 566 with an infection.

Sandi

March 26, 2003

In a message dated 3/26/03 9:46:29 PM Pacific Standard Time,

bunneegirl@... writes:

> BUT I know you are probably thinking what I thought before (did they mix up

> the results with somebody else's???), and it's hard to believe.

So true--because I have seen a decline in 's overall health. Part of

this could be due to his heart and needing a valve. But he still gets sinus

and ear infections as often, there has been no improvement. I am a little

suspicious of the 566 total Ig number--I would like to know what the

subclasses are. If you were me, would you push for further testing? The

polysaccharide antibody test is a good idea, it has not been done.

Thanks!!

Sandi

March 26, 2003

Hi Sandi,

Some people make IgA and it is present in the blood but for some reason

they have below normal values in the saliva and mucous where it can help

them. So that is still IgA deficiency.

You may also want to have them check his pneumoccocal titers to see

whether he shows a response to the polysaccharide coated bacteria.

The IgG subclasses are done to see if he has a low value in one of the

subclasses.

--Martha

March 27, 2003

>

> IgA: 86 normal 37--196

> Total IgG 566 normal 510--1360

> Blood sugar was 57.

Hi there Sandi,

That is great news about the IGA as it may appear that there is

help for you now!!!! Thank God you pushed for the testing!!!!

I know every lab has different values as to what is normal and

question if they go by age or by weight or what as my labs normal

level at Childrens is 694 and up for and they are the same

age! Not to make you any more concerned at this point then you

already are. Me, personally, I would push for more. As even though

he shows within normal according to them, clinically he is not doing

so great.As some things could be due to his heart, the weight

concerns me also as my son is 10 lbs more and I think he is tiny!!

My son's levels are below normal(608) but his subclasses within

normal range and he's relatively ok. I would definitely check that

out and the pneumo as well. So basically you need to see if the

troops are sleeping or not and go from there. Looks like you may

have more options available to you than you thought!!!! That would

be so good for you guys if you could get the IVIG as I know you

wanted to get it if you could.

made it thru the 5 days of Cipro ok!!!! Yea !!! Now

we are the count down for the testing next week, praying he stays

healthy enough to get there!!> His nose is still quite runny which

doesn't give me much hope as that may just invite more critters in

(not to mention not being on the Cipro long enough) but will just

have to wait and see. So he is now officially off all his meds

except his ADHD med. Keeping my fingers crossed and praying for you

guys!!!

March 27, 2003

,

Thanks!! That's interesting!! If had the test done at your lab, his

numbers would be low!! At this point, I was fully expecting something to

come back and be very apparent, but 's not going to make this easy of

course Being and all. He's easy in every other way, but medically,

he has to be in the 1%!! I am a little suspicious of that normal but low IgG

number.

His heart is making him tired, I think. Also I didn't like his blood

sugar, he was not fasting--the test was at about 2:30 in the afternoon and he

had eaten breakfast, snacks and lunch!! That could account for some of his

tiredness. As for the infections, his heart is not much of a factor in that,

so we'll see what they come up with. Please pray that is going to let

me push harder on this. Maybe he will, he's the one who adamantly told me

all of these years that Bri had an IgA deficiency. Maybe he'll want to know

what's happening!!!!!!

I'm glad is better. Good old Cipro works for me every time. Do you

use Ocean spray to rinse out his sinuses. I find this is a good compromise

to full washes, and it might help keep the bacteria from re-growing for a

while?? If you read the directions on the back, you see that tipping the

head back (or laying down) will actually send a stream of it through he

sinuses--rather than just a little spray. It has helped my sinuses stay

clear now for months.

Sandi

March 27, 2003

,

Thanks for the information about blood sugar. I also have low blood sugar,

so it helps a little. is very small for his age, so it doesn't

surprise me. However, he eats all of the time!!!

Sandi--Mom to , age 10. Immune Deficiency of unknown origin, Tetrology

of Fallot, chronic sinusitis, chronic ear infections, asthma, severe

allergies, GERD. Heart surgery pending.

September 23, 2003

Dearest LYNN,so sorry to read that you are feeling pain. My doctors have been

very careful with the use of prednisone and they always remind me that 10 % can

be deduced each week whenever I wish to cut it down very fast. After 20 mg

they asked me to go 18-16-14-12 and after 10 mg I will decrease 1 mg each week.

Please take good care of yourself...If you wish, I can ask the pain to the

doctors here ..but they suggested my taking naproxen sodium when I complained

about the pain two weeks ago. Hugs and kissesYou will get better soon...PS: my

experience tells me that keeping the sore muscles and aching bones warm helps a

lot.EugenieFrom:

Lynn D [mailto: ldudette@...]stillsdisease@...: Tue,

23 Sep 2003 09:49:42 -0500Subject: Need adviceHi my nonvegas

pals.My doctor has had me tapering off the prednisone. I got down to 10 mg from

20 mg with some pain and I have had constant pain at 10. She then wanted me to

drop to 5 mg after 14 days at 10. Well, I was not doing that. after about 16

days I dropped to 7.5 and now I am in so much pain. My whole body it hurting,

every joint and my costo is pretty painful. I don't see any of my new doctors

here in Wisconsin until October when my new health plan takes effect. I could

take pain pills to get thru this but should I be having this much pain, I am

tempted to just take a couple prednisone, except I am so frustrated with the

weight thing also. Any comments would be appreciated based on your experience,

not looking for medical advice.Lynn Dudenhoeferldudette@...---Outgoing

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September 23, 2003