Re: Hi there again!!!

[Guest guest]

I have been with the group for quite a while now but had to drop out

for a few months because of rough times and a severe reaction to

medication. So I thought I would reintroduce myself. I wasn't able to

contribute much at the time so I don't think anyone remembers me anyway.

My understanding and sympathy to all of you, especially those of you

that are totally disabled due to years of illness. I have been very

ill for 30 years now but only diagnosed in 1993 with CFIDS and Fibro

because there wasn't a diagnosis or understanding at all until 1985. I

was very young when I got sick with a sudden onset of CFIDS so I was not

only at a loss to understand what was happening to me but I went to so

many doctors for help that they all did a little to help destroy me a

little more. I diagnosed myself and then heard that one of the top

immunologists is here where I live and I went to see her and was

diagnosed by her " with a complicated case of CFIDS for lack of a better

diagnosis " . I remember she picked up a whole lot of research material

and told me this all means nothing. No one understands what it is. " And

they still don't. I know we are all suffering in our own way but when I

said my sympathy to those of you totally disabled, I meant there are

those that are still working as hard as it is because I went through

years of that, then I went through years of bronchitis and pneumonia and

finally total disability for the past 11 years and now I am for the most

part homebound. Because I was only 20 years old when I became sick, I

married and divorced, never remarried because I was not lucky enough to

be loved even the way I was and I have no children. I have had the best

pets in the world and they helped me to survive. I live in fear at what

is going to become of me. I also have diabetes and asthma and am going

to my 3rd sleep clinic to try to get help for my sleep disorders. I go

days without sleeping and my days and nights are mixed up. My

neurologist does the most to help me although she doesn't understand

CFIDS but has some understanding of Fibro because of the pain. I am

fortunate that my pain did not come on until the last 10 years and I

take Oxycontin at a high dose and I am so thankful for my neurologist.

I have had very bad luck with internists. I stayed with one for about

15 years because I developed a relationship with him but because he did

nothing for me, I eventually left and another doctor took me on and now

decides he doesn't want me anyway. It is illegal to turn a patient away

so if I call him, he never calls back and never sends me prescriptions.

He allows his associates to send me the prescriptions and I call on days

when he isn't there so I know I will get it. That is a very clear

picture. I have been to see two doctors who specialize in CFIDS and

they were both worthless. There is a 3rd here who is supposed to be

treating 800 CFIDS patients and he is the only one I haven't been to. I

don't know what to do. But it sure won't hurt to try. I know alot of

you are going through these problems and understand. Well, I don't want

to go on and on so I wish you all well and wish you all better days.

Andi