Re: Dear /Question

[Guest guest]

Hi Sue,

I certainly do not want to diminish the importance of this site , because

when I was first diagnosed , it was good for me to find other people with

valuable information about the symptoms I was experiencing, especially

considering the rarity of the disease. I was just sharing my feelings about

how I honestly felt during the bad days.

I must disagree with you Sue that " this type of treatment " doesnt work for

everyone. What is your definition of " this type " ?There are many holistic

doctors and homeopaths out there, that use a wide variety of testing

protocols. What type of treatment are you receiving from your holistic

doctor? My homeopath testing protocol is Biosystems Analysis. I will give

more information about this on request. Results from testing varies greatly

even among people using this same testing method. She has had success

treating people with all kinds of illnesses, from cancer, to stills, to

fibromyalgia, among other things. I cannot speak to the success of other

homeopaths or holistic doctors, or to their methods. I believe that she

could not only help people with illness but could also help the healthy

become healthier, in other words , she can improve anyones quality of life.

I have heard and also agree with the fact that stress is a big factor in

this disease. We would all do well to try to limit the stress in our lives.

Meditation and breathing techniques can help to reduce stress.

Good Luck to you Sue.

Re: Dear /Question

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> I will agree with Tricia here, and nothing makes me happier to hear that

someone is doing great and feeling wonderful, but lets remember, that this

type of treatment doesn't work for everyone. I have been with my holistic

doctor for a year now, and he definitely acknowledges that I have Stills and

respects my doctor. They respect each other, which is very important here.

No one steps on each others toes. My Rheumy sees no problem with my

holistic doctor at all, but I keep him well informed of what is going on.

" I feel " that this site is a wonderful place. " I don't feel " that it is a

depressing site at all. I look at it very much differently. Without the

use of this site, I think that I would be worse off. I am a single mom with

Stills Disease. I had one horrible " blow " with my husband leaving me

pregnant with my second child and getting a 17 year old girl pregnant at the

same time. As a woman....as a 35 year old woman.....I have been alone with

my two children. , this was devastating to me. Talk about being

depressed and finding out that I had Stills too. I am one of those people

who think that life has to be " perfect " ...that has to be perfect all

the time....where it came from, I don't know, no one knows...but I am an

over-achiever....always taking on too much because of my " a type

personality " , but slowly, very slowly I am beginning to realize that I

cannot be Superwoman, I cannot do it all....I need help and I have to accept

it and put down the ego because I am sick, and this site made me feel so

much better. My feelings that " why was God doing this to me? Why is he

putting me through a divorce and a horrible disease......why not someone

else? My pain, no one understands my pain.....these are the things that I

would torment myself with every day. I would sink into self pity and put

myself down, feel sorry for myself and not move from my couch and lock

myself in the house and only cry......UNTIL, I found this site. My doctor

recommended it to me. Thank goodness that he cared about me that much as a

patient to help me through this. He just didn't prescribe

anti-depressants....he found a way for me to talk about my feelings and

understand that I am not the only one facing this, that there are others out

there who will understand me and feel what I am feeling. This site made me

feel a part of another family. Everyone watches out for each other. I am

not the disease...I am a person, but I was treating myself like a disease.

I was very down on myself, but now.....I am up, I work all the time, but I

do know that this sometimes is a bad thing for me. My doctor wants me to

cut back my hours in half, but for now....I choose to work all I can, and

if my body responds in a negative way....I back off....like I did here for a

couple of weeks. I had pushed way too much and I paid for it, but these are

the things I am learning , and sounds stupid, but little things like a

friend here reminding me to take some " Sue time " , be good to myself, rest,

take all my meds and make sure I tell my doctor what is going on, has become

very important words to me...simple words that I would of over-looked or

ignored without this site. , I am thrilled that you are doing great,

but different people respond to different things, we are all different.

Support Group, means Support Group and there are so many of them out there.

This Stilligans Island gives me and " I feel " much " hope " for a brighter

future. At least, that's the way I feel. I feel very loved here. My

friends are a part of me and I worry about them when they are " ill " ......I

don't look at it, as depressing at all. I know when they are " ill " or in

the hospital...I can recall upon my weeks in the hospital or the people just

not understanding my pain....and I put myself in that place again and I feel

for my friends, and I understand them...I don't send " negative messages " ...I

don't think anyone here does that. We want that person well again, and

sometimes....yes....the feelings that I have is that I wish that I could be

there for that person in person because I want to comfort. Perhaps this is

why I now volunteer my services at the hospital and volunteer 4 hours a week

for my Divorce Group. I am so healed from my divorce, but it was the

Support Group that got me through it, and they gave me a special

" gift " ...the gift of " life " again, so this is what I do in turn....I give

back for what has been given to me. Sometimes I don't have to say anything

at all, but I will listen...this is what friends are for. This email is in

no way to put down what you said . I respect your words, but lets

remember what Support Group is all about....isn't that the reason you joined

in the first place...for support? When you thought you had Stills, isn't

this the reason why you joined, like I did, and like you said, you would

post a lot too. I found your doctors theory for your illness highly

interesting and I think it's very informative and something to keep in mind

and very " intelligent " on her part. Most doctors seem now a days, that

they won't even take a diagnosis that far. Some seem to give up too soon or

just prescribe anti-depressants and other drugs because some seem

miss-educated on some of these un-heard of diseases, but I do know that

doctors aren't " saints " either, they cannot possibly know everything or

every disease either. It is respect on my part too. I come from a very

small town. Very small....everyone knows each other...doctors nor people

knew what Stills Disease was, but now all of the sudden my local hospital is

definitely aware of it because of the Infectious Disease Doctor that I had,

and for this I am grateful. All the best to you .

> Sincerely,

> Sue #2

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