(No subject)

June 14, 1998

Clipper,

I had read one of your posts a while back. I was curious as to how you were

unable to nurse but were able to do hair dressing. I know nursing is

stressful and difficult as far as the hours, etc, but i would think it would

be easier to do part time work in doctors office or do insurance claims,

something in the field but less stressful if you were still continuing to

try to work. I mean hair dressing! That has to be one of the hardest jobs

there is, standing on your feet all day and having to use your arms. I too

used to be a practicing nurse. I know I could have made more money working

part-time in that field than full time as a hair dresser. I worked until my

body just shut down. I went from full-time to no time, but I had been

missing an awful lot of work, and boy was I one miserable person. I just

kept getting further and further behind on my work. I worked in a

psychiatric hospital so that is very different than typical floor nursing,

but I was still responsible for a building of 45 adult men and all the staff

as well. Maybe not directly responsible for all the staff, but I still had

to be on my toes to make sure they were doing their job right as far as the

patient's needs being met. I loved my job and I had gone back to school in

my 30's to achieve a life-long goal. I was ill during nursing school, but i

managed to make it with honors. My condition deteriorated over the years. I

had a partial hysterectomy in 93 and then I really went down fast. I went to

work for the last time the last day of Nov. 1994 and have never set foot

back in since. I was just about ready to be upgraded to a nurse III which

means I would probably be making over 50 thousand annually right now just

with regular daytime hours. I have been blessed as I had worked for the

state just long enough that I qualified for state disability as well as

SSDI. And I am married. Otherwise, I don't know how I would be surviving. I

was also fortunate in that I had to only wait for 1 year to receive benefits

from both.

When I see people in my support group who are fighting both systems now and

having a much more difficult time than I did I am thankful, but I also hate

to see the unnecessary suffering that these people are going through. They

have all the proper documentation needed. We help people and have some good

doctors to send people to as far as getting what they need, but sometimes it

still just does not work for them.

I am rambling.

I had intended to sign off the list, and thought I had Friday, but am still

getting messages. I need to take this computer in for some work but did not

get around to it Friday. When I do , I am afraid I will have severe

withdrawals!

I miss having friends and the social life, even if it was at work. Those

people no longer bother to call me. And our group is not very social at

all. Several of the ones in the group I was closest too have moved and no

one has moved in to take their place.

I stay pretty active with the group as far as helping people who are working

on their disability and answering phone calls or letters from people who are

looking for help. We don't have much to offer locally as far as doctors for

treatment. It is really pitiful. Sometimes it really gets me down to see how

many people are ill with these strange illnesses and to have to break the

news to them about the reality of the situation ( CFS,FMS,MCS,MPS). We have

been rated trash can diagnosis by most doctors in this state. And what is

even scarier is I only hear from a small few who have heard of our group

from the newspaper or TV. I can't imagine how many more hundreds are

possibly out there, sick and who have no idea of what is wrong or where to

go. They are probably going through what all of us old timers went through

early on, going from doctor to doctor, knowing something is terribly wrong,

and being told it is all in our minds and that we should see a shrink as we

are probably just stressed out or depressed.

Many of us do suffer depression from time to time. Fortunately it usually

last only for a short time. When we face the situations that are causing us

to feel depressed or even take a small dose of antidepressant for it and it

lifts, we do feel better. But know what?. The main illness continues. If it

were depression then we could talk it away or the darned medusa would work.

Seems like that would be a clue for the doctor. Guess they just can't get

inside our bodies and understand. Fortunately there are a small few who do

believe and do try their best to help. They are to be commended as they are

not looked on favorably by the rest of the medical professionals. They stick

their neck out on a limb every time they write us a prescription for a pain

med. Sometimes I get aggravated with my doc thinking he could do more, but I

need to be grateful that I even have one that I can go to and is willing to

take care of me in a way that he thinks is in my best interest and also is

willing to compromise with some of my request within reason. He listens and

is very caring. If only we could clone some of the good guys!

To Ken and all the rest of the new and regular folks on the list, I hope

everyone is doing well and hanging in there. I am grateful to have you

available for reading your posts late at night when I can't sleep. I may not

participate much as I have not been in the mood to do so for some reason. I

used to be much more outgoing. I have plenty problems going on with 4

teenagers and I get tired of talking but enjoy listening. And , thanks

so much for the work you do with keeping us up to date with the news. You do

a great job. I share much of the info at our support group meetings so the

messages are like waves that just keep rippling out.

Right now I am looking for a good toxicologist for a man in our group who

was exposed to large amounts of chemicals several years ago. I think this is

really his problem. I also think these people need to have treatment and

tests aimed at this instead of the viral type stuff for CFS. We have had

several in our group who have been diagnosed with CFS but their history

points to possible toxic exposures.

I will stop for now.

Hugs to you all,

Vickie

Pratt wrote:

>

> Sorry I havent written in so Long I was writing exams and finishing up

> school and now that Im retrained Im unable to do that job either full

> time so Im on full time disability now. Ive noticed theres another

> on the list now so as to avoid confusion Ill go by my puter name

> clipper (Im a hairdresser? EX RN) Anyways welco;me back Ken glad to here

> your on a bit of the mend. Im glad to meet you> I receive your

> mail and I must say It is one that I never skip reading you always have

> the most upto date informative medical research on this disease and as a

> Nurse I trully appreciate that. When does the mailing usually go out > I

> havent seen anything lately.

>

> Thanks a ll tata

>

> ClipperAKA

> clipper@...

> http://www.globalserve.net/~clipper

> There's a new page of FM up now for viewing and linking. Take care.

>

> ----==== Please Support our Advertisers Because They Support Us ====----

>

June 15, 1998

this is mike i'm in FORT WORTH TEXAS i have no insurance i have a hard

time getting meds i have to go to er-room about every 3months because i

can not breath after waiting in the low income hospital er-room waiting

room whizzzzz loud trying to breath sitting there waiting for them half

pass out waiting for them to call my name after 6hours of hell i kept

looking at the list of names & the nurse said i would be next go sit

down wait than the police bought in a guy from jail they take him in

next tham the police in gang guys that shot each other on the street 2

hours later they call my name than they give me some white sm0ke stuff

i breath in & out for 30mins in a room with 6beds with sick people one

of the sick people i saw was clover up face & all in a bed sheet the

nurse told me do not worry they will get his body & wheel him in the

hallway when the next nurse gets to work

that is why i hate the er-room when you are low income i use to have

g00d insurance when i worked on F-16 jets for 11years till 1991

when they laid me & 3000 others off the same day than no one would hire

you than my health & life wet down hill

mike

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

" Akut's Tarzan Site "

http://members.tripod.com/~akut/tarzanindex.html

February 11, 2000

Carol , I totally agree with your perspective I sold my farm (btw my

asthma 'recurred' after nearly 10 years of remission when I lived on my farm

that bordered a peach orchard ) , my critters and moved back to my childhood

home farther south where its warmer at the Atlantic ocean .

Do you see a pulmonoligist ? An ENT ? I see both and have benefited

greatly by their partnership in my care - like you I have chronic sinusitis

and keeping it under control helps keep my asthma more manageable - my ent

has me pour a solution of 1/2hydrogen peroxide and 1/2 water in my ears

weekly to help keep them clear and prevent clogging that causes infections

and sets my asthma off .Even though you are not 'allergic' to animal dander

, the skin and fur is still an irritant to asthmatic lungs so you need to be

aware of that and act accordingly . I wear a mask to clean my wallabies pen

and to garden as well .

lets see - if you have a gas stove or heat switching to electric may greatly

improve your asthma-

Cigarette smoke is definitely the number 1 known trigger but Smoke of any

kind is a trigger too, so don't move to an area that has heavy traffic

or a rural area with lots of controlled burning or next door down the street

from the guy with big rigs

so don't move to a heavily trafficked area - my asthma is pretty severe so I

go into town only when I am doing really well because the pollution from the

traffic alone can make those asthmatic lungs spasm for days .

Those are a few off the top of my head - it would be beneficial to everyone

on this list if we started a thread with tips to help asthmatics - maybe I

will pull a starter letter off within the next few days and we could all add

our personal experiences - things that work for us

Did you check out any of the article links I sent ? 1 of them stated that

pro swimmers and runners have a much larger chance of being asthmatic than

any other type of athlete - maybe this has to do with the chemicals and temp

changes of

a swimmer and the pollution and temp changes of a runner - they just don't

know

I was not a pro athlete but a serious body builder and in excellent physical

shape when my asthma recurred ; I also developed fibromyalgia simultaneously

and I believe that the pesticides that I was exposed to played a role in

this , hopefully we will have more answers to the 'whys' soon so that we can

get better solutions to the 'how's of managing it

hope your day is sunny ,

teresa

>

> I guess I have to ask questions, its just my nature. I thought if I could

> figure out what MIGHT have caused it, then perhaps I could help

> control it. If pesticides or poor outdoor air quality contributed, then

> its a darned good reason to move. I know cigarette smoke is a trigger,

> so I wont let anyone smoke in the house, and I wont to go anyones

> house that does smoke. My animals have not been a problem- I've

> been tested and I'm not allergic to them at all. I know dust, mold

> and lint cause problems for me, but I'm not allergic to them. I am

> allergic to grass and various tree pollens, which are everywhere no

> matter what I do. I take antihisthamines every day, and I change

> them every now and then so as not to develop immunity to a

> particular kind. I know cold air and exercise are both triggers

> for me also. Certain rooms in the house cause me some

> problems, too. The more I know, the more I can do to help

> myself. I dont have a choice but to live with it, thats nothing

> new to me. I have a chronic and untreatable back problem

> that causes almost constant pain, and I've dealt with that

> fairly well. The constant allergies and sinus infections,

> insomnia, and other 'joint' problems- I'm no stranger to

> adversity. I cant change the fact that I have it, but if there

> is a way to help make it easier to live with, then I'll do it.

> That to me, means finding out what could have caused

> it, and removing that 'cause' from my life. Moving I

> think will be one huge step. Any other ideas?

> Carol

>

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

February 11, 2000