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Hello,

I was diagnosed with EN in March of 2006. It came on suddenly with

severe joint pain, fatigue, episcleritis, fevers, and the lovely red

bumps on my legs. I also had a different rash on my arms that they

said was some neutropenic reaction. These were both biopsied and

confirmed. I was put on a Prednisone taper which quickly resolved all

my symptoms. After stopping them though about two weeks ago, I was

extremely extremely fatigued and the joint pain came back. All my

labs were negative for infection, sarcoidosis, rheumatology factors,

lupus, ect, ect. I am 33 and this is very scary. I am thankful that

there is a support group out there for this. I am a registered nurse

and had never heard about EN until now.

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  • 3 years later...

Hello one and all!!

I am Virginia, I live in Kansas city, mo....not oz...like Dorothy.

I was born with Asthma.

My parents were befuddled.

They gave me Vicks Salve to eat, whenever I has an Asthma Attack.! (today it'll kill ya).

They did not understand. And I did not know what I had until I was 28 years of age.

I took prima tine. Because some folks thought they knew what I had.

No playground games. Discrimination , all the away around, from teachers and students.

No one picked me for sports teams and I just dealt with the hurt feelings. As a child.

Once diagnosed , I would not take Brethine regularly. Or any drug.

Why should I? I only got sick four times a year. When the weather changed.

Now the weather changes weekly. And if I listen to "naysayers"...the world is coming to an end.

I lived in Massachusetts, Kentucky, Georgia, and Missouri.

Only "weather changes" bothered me.

Then came the prescriptions for "theordure"...and "intal", and "beclovent".

I was not compliant. Moving ahead, I contacted pneumonia one summer and was

Hospitalized. And given "prednisone"....a year later, I had to have "hip replacement surgery"

Prednisone, ate away the bone in my right hip. Now bone density test ever six months.

And gave me Type II Diabetes.

I have never felt sorry for myself. Just amazed that there is no cure. And Denver did nothing

For me. Georgia's heat and humidity nearly killed me. The six years I lived there.

Every time I went to the ER. My family got their Black Clothes out of the cleaners.

I am back in Missouri and older and wondering what is gonna become of me and Asthma?

Of course Prednisone made me "swell up" and look like a "mud pig". Lol.

I had 33 part time jobs in Atlanta, the six years I lived there..because of my asthma.

Thanks for letting me join the group and so far what I have read has been entertaining and

Informative.

Virginia

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I had to laugh! My folks tried to treat my asthma with Vicks Salve too (though

they didn't have me eat it).

Welcome to the group.

>

>

>

> Hello one and all!!

>

>

> I am Virginia, I live in Kansas city, mo....not oz...like Dorothy.

>

> I was born with Asthma.

>

> My parents were befuddled.

>

> They gave me Vicks Salve to eat, whenever I has an Asthma Attack.! (today

> it'll kill ya).

>

> They did not understand. And I did not know what I had until I was 28 years

> of age.

>

> I took prima tine. Because some folks thought they knew what I had.

>

>

>

> No playground games. Discrimination , all the away around, from teachers and

> students.

>

> No one picked me for sports teams and I just dealt with the hurt feelings.

> As a child.

>

>

> Once diagnosed , I would not take Brethine regularly. Or any drug.

>

> Why should I? I only got sick four times a year. When the weather changed.

>

> Now the weather changes weekly. And if I listen to " naysayers " ...the world

> is coming to an end.

>

>

>

> I lived in Massachusetts, Kentucky, Georgia, and Missouri.

>

> Only " weather changes " bothered me.

>

>

> Then came the prescriptions for " theordure " ...and " intal " , and

> beclovent " .

>

>

> I was not compliant. Moving ahead, I contacted pneumonia one summer and was

>

> Hospitalized. And given " prednisone " ....a year later, I had to have " hip

> replacement surgery "

>

> Prednisone, ate away the bone in my right hip. Now bone density test ever

> six months.

>

> And gave me Type II Diabetes.

>

>

> I have never felt sorry for myself. Just amazed that there is no cure. And

> Denver did nothing

>

> For me. Georgia's heat and humidity nearly killed me. The six years I lived

> there.

>

>

> Every time I went to the ER. My family got their Black Clothes out of

> the cleaners.

>

> I am back in Missouri and older and wondering what is gonna become of me and

> Asthma?

>

>

> Of course Prednisone made me " swell up " and look like a " mud pig " . Lol.

>

>

> I had 33 part time jobs in Atlanta, the six years I lived there..because of

> my asthma.

>

> Thanks for letting me join the group and so far what I have read has been

> entertaining and

>

> Informative.

>

> Virginia

>

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