Re: Carols Saga..cont!!!!

[Guest guest]

Also gave me a name for the bumps(peaks and valleys) on my head that are forming+ one on my forehead now...Plexiform Neurofibromas..anybody else have these?? I am beginning to feel disfigured! I think of the Elephant man when I think of these bumps. There is a guess that he had NF, only to the extreme

You know, to be very honest with you, that statement ruined my day. You see, of course you're entitled to your own fears, but you have to keep in mind, that many of us, including myself have severe NF2...by severe I'm talking about, amung other things, facial paralysis, limited vision, walking/balance difficulties, breathing/swallowing problems, very limited use of our hands, and of course these disfiguring neurofibromas. Being refered to as the elephant man, or similar to, thats just not real appreciated. I have very low self esteem to begin with and am literally afraid to go outside on some days because of the fears people will look at me as disfigured and scary....

Now let me count...my left arm, from fingertips to my elbow, I have 8 of those neurofibromas....thats only my left arm...I'm not even going to count the rest of that arm, my other arm, my legs/feet, my face or my turso. and no, I don't look like the elephant man, these stay relatively small but are noticable.

Anyway, just venting because I was really hurt by that statement.

Caren

[Guest guest]

The Elephant Man did not have NF2. It was something else but I have

forgotten the medical term.

I think I sent out the Poem " Measure of a Man " I wrote but will resend it.

Jane

[Guest guest]

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

From: CarsonCutey@...

Also gave me a name for the bumps(peaks and valleys) on my head that are forming+ one on my forehead now...Plexiform Neurofibromas..anybody else have these?? I am beginning to feel disfigured! I think of the Elephant man when I think of these bumps. There is a guess that he had NF, only to the extreme

_______________________________________________________________

Carol,Carol,Carol..............I think us guys have to worry about plexa whatever alot more then you ladies.After all,our hair could start falling out at any time.

Jimmy(who has had 7 "Plexiform Neurofibromas.." surgically removed,but still has half a dozen smaller ones.

[Guest guest]

In a message dated 5/21/01 5:27:33 PM Pacific Daylight Time,

JDWpoetgirl@... writes:

<< The Elephant Man did not have NF2. It was something else but I have

forgotten the medical term.

I think I sent out the Poem " Measure of a Man " I wrote but will resend

it.

Jane >>

Didn't he have NF1? That is what I thought? Lori Jo

[Guest guest]

In a message dated 5/21/01 4:53:21 PM Pacific Daylight Time,

jeffwurst@... writes:

<< (((((((Caren)))))))

We all love you Caren and I'm sure nobody ment to hurt you.

Jeff W. >>

Caren, You are a wonderful and caring person that has more courage and

strength than most people will ever have. Lori Jo (((((((((Caren))))))))

[Guest guest]

Dear Caren..I am sorry that it was taken in a way that wasn't meant.

I have all the side effects you mentioned too. And many times I deal

with everything with humor, right or wrong.

I have been ill with something since I was 16, now 46, and I am tired.

And I am frustrated. The elephant man was a kind and gentle man, and they

suspect he had NF but in the extreme. I do not mind being compared to such

a person, but it was not an insult to anyone. It was directed at me, myself.

I have grown over the years to know that it isn't the outside that

counts, but the inside. And anyone who wouldn't want to know your heart,

as I have grown to know you on this crew is missing much and it is

their loss. I do not care what people think about how I look anymore.

We are all special in Gods' eye. I hope one day you feel this way and

can go outside of your home and feel free. You are worth people knowing.

Hugs, Carol

CarsonCutey@... wrote:

In a message

dated 5/21/01 1:47:02 PM Eastern Daylight Time,

horizons@...

writes:

Also

gave me a name for the bumps(peaks and valleys) on my head that are

forming+ one on my forehead

now...Plexiform Neurofibromas..anybody

else

have these??

I am beginning to feel disfigured! I think of the Elephant man

when I think

of these bumps. There is a guess that he had NF, only to the

extreme

You know, to be very honest

with you, that statement ruined my day. You see,

of course you're entitled

to your own fears, but you have to keep in mind,

that many of us, including

myself have severe NF2...by severe I'm talking

about, amung other things,

facial paralysis, limited vision, walking/balance

difficulties, breathing/swallowing

problems, very limited use of our hands,

and of course these disfiguring

neurofibromas. Being refered to as the

elephant man, or similar

to, thats just not real appreciated. I have very low

self esteem to begin with

and am literally afraid to go outside on some days

because of the fears people

will look at me as disfigured and scary....

Now let me count...my left

arm, from fingertips to my elbow, I have 8 of

those neurofibromas....thats

only my left arm...I'm not even going to count

the rest of that arm, my

other arm, my legs/feet, my face or my turso. and

no, I don't look like the

elephant man, these stay relatively small but are

noticable.

Anyway, just venting because

I was really hurt by that statement.

Caren

[Guest guest]

At what point did they decide to remove them? These are new to me!

Carol

Jimmy wrote:

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

From:

CarsonCutey@...

________Carol,Carol,Carol..............I

think us guys have to worry about plexa whatever alot more then you ladies.After

all,our hair could start falling out at any time.Jimmy(who

has had 7 "Plexiform Neurofibromas.."

surgically removed,but still has half a dozen smaller ones.

[Guest guest]

I asked my neuro if I could get them removed.These 7 had become fairly big,and were sticking out from under my hair.Having them removed is fairly easy,just a numbing shot,right into the bump,then Dr. cuts and stitches.

Jimmy

Re: Carols Saga..cont!!!!

At what point did they decide to remove them? These are new to me! Carol Jimmy wrote:

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

From: CarsonCutey@...

________Carol,Carol,Carol..............I think us guys have to worry about plexa whatever alot more then you ladies.After all,our hair could start falling out at any time.Jimmy(who has had 7 "Plexiform Neurofibromas.." surgically removed,but still has half a dozen smaller ones.

[Guest guest]

Okay...this is going to sound stupid......Mine are hard, like it is the

skull underneath not a fatty tumor... Were yours hard or soft...you talk

about sticking a needle in.

Carol

Jimmy wrote:

I asked

my neuro if I could get them removed.These 7 had become fairly big,and

were sticking out from under my hair.Having them removed is fairly easy,just

a numbing shot,right into the bump,then Dr. cuts and stitches.Jimmy

Re: Carols Saga..cont!!!!

At what point did they decide to remove them? These are new to me!

Carol

Jimmy wrote:

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

From:

CarsonCutey@...

________Carol,Carol,Carol..............I

think us guys have to worry about plexa whatever alot more then you ladies.After

all,our hair could start falling out at any time.Jimmy(who has had 7 "Plexiform

Neurofibromas.." surgically removed,but still

has half a dozen smaller ones.

[Guest guest]

Mine were hard.yes,he stuck a needle in them.Painless:)well,like the dentist(right )

Jimmy

Re: Carols Saga..cont!!!! At what point did they decide to remove them? These are new to me! Carol Jimmy wrote:

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

From: CarsonCutey@...

________Carol,Carol,Carol..............I think us guys have to worry about plexa whatever alot more then you ladies.After all,our hair could start falling out at any time.Jimmy(who has had 7 "Plexiform Neurofibromas.." surgically removed,but still has half a dozen smaller ones.

[Guest guest]

The Elephant Man did not have NF2. It was something else but I have forgotten the medical term.

I think I sent out the Poem "Measure of a Man" I wrote but will resend it.

Jane

Hi Jane,

Didn't he have von Recklhausen disease or something like that? Please excuse the spelling mistake )

June

[Guest guest]

Thanks for the sight.

Jane

[Guest guest]

I don't know. Were you on the crew when we were alerted to watch a T.V.

show depicting a man with NF1? There was controvery over the show. Others

will help me out here with my memory. NF1 people were very offended by the

show. I think (please correct me if I am wrong here) the man in the show was

more Elephant Man's illness.

Jane

[Guest guest]

And Amen to those two statements Caren.

Jane

[Guest guest]

Ya, that's it. See, once you tell me I recognize it!.

Thanks a bunch!

Jane

[Guest guest]

June - That is the word I was looking for in my mind!

Thanks!

Jane

[Guest guest]

June - That is the word I was looking for in my mind!

Thanks!

Jane

Oh shoot!!!! I should've signed my email...

June,,,

One of the Flying J's )

[Guest guest]

(((((((Caren)))))))

We all love you Caren and I'm sure nobody ment to hurt you.

Jeff W.

-----Original Message-----From: CarsonCutey@... Sent: Monday, May 21, 2001 3:50 PMTo: NF2_Crew Subject: Re: Carols Saga..cont!!!! You know, to be very honest with you, that statement ruined my day.

[Guest guest]

Jane.....I understand they can or cannot say what he did have....They never

really have determined what he had, Nf was one of the guesses and Proteus

Syndrome was another. But they have never actually pinpointed it. Here

is a good site for this and other info that I found, along with his writings.

Carol

http://www.zoraskingdom.freeserve.co.uk/frame.htm

[Guest guest]

Ouch..oops........Thanks Jimmy

Carol

Jimmy wrote:

Mine were

hard.yes,he stuck a needle in them.Painless:)well,like the dentist(right

)Jimmy

-

[Guest guest]

Caren, I am amazed to hear you say you have low self esteem; I have always admired how you seemed like nothing bothered you!! Take it from me kid, none of us would win any beauty contests for physical beauty, but when it comes to character - you take no back seat. marie

Re: Carols Saga..cont!!!!

Also gave me a name for the bumps(peaks and valleys) on my head that are forming+ one on my forehead now...Plexiform Neurofibromas..anybody else have these?? I am beginning to feel disfigured! I think of the Elephant man when I think of these bumps. There is a guess that he had NF, only to the extremeYou know, to be very honest with you, that statement ruined my day. You see, of course you're entitled to your own fears, but you have to keep in mind, that many of us, including myself have severe NF2...by severe I'm talking about, amung other things, facial paralysis, limited vision, walking/balance difficulties, breathing/swallowing problems, very limited use of our hands, and of course these disfiguring neurofibromas. Being refered to as the elephant man, or similar to, thats just not real appreciated. I have very low self esteem to begin with and am literally afraid to go outside on some days because of the fears people will look at me as disfigured and scary.... Now let me count...my left arm, from fingertips to my elbow, I have 8 of those neurofibromas....thats only my left arm...I'm not even going to count the rest of that arm, my other arm, my legs/feet, my face or my turso. and no, I don't look like the elephant man, these stay relatively small but are noticable. Anyway, just venting because I was really hurt by that statement. Caren

[Guest guest]

It was Von Recklinghaus's disease.

Re: Carols Saga..cont!!!!

>The Elephant Man did not have NF2. It was something else but I have

>forgotten the medical term.

> I think I sent out the Poem " Measure of a Man " I wrote but will resend

it.

>

> Jane

>

>

>

>

[Guest guest]

Carol,

I,too,have fibromyalgia. I think this is a diagnosis used in place of not

knowing what else to say. It is so erratic and unexplainable. I have been

told to sleep also, give in to the pain when it occurs, exercise more not

strenuous, just slow and constant. So I trudge on, too, knowing it is stress

related but stuck with the stress.

Take care of yourself. Love, Vicki

[Guest guest]

Are you asking me Jane??

Carol

JDWpoetgirl@... wrote:

> I don't know. Were you on the crew when we were alerted to watch a T.V.

> show depicting a man with NF1? There was controvery over the show. Others

> will help me out here with my memory. NF1 people were very offended by the

> show. I think (please correct me if I am wrong here) the man in the show was

> more Elephant Man's illness.

> Jane

>

>

>

>

[Guest guest]

Marie wrote:

Caren, I am amazed to hear you say you have low self esteem; I have always admired how you seemed like nothing bothered you!! Take it from me kid, none of us would win any beauty contests for physical beauty, but when it comes to character - you take no back seat. marie

I reply....hesitantly:

You know, typically nothing really bothers me, but lately,it has just been harder and harder to deal with...why?? because I remember what I was like say 5 years ago...just going to college, racing from my room on 9th floor down the stairs to a friends room on 1st floor, then running back up the stairs, my leg muscles were awsome, my hands were perfect (I often got told to slow down when signing, I was VERY fast and strong with ASL), i'd go camping with my sorority sisters, and even 2 years ago I could type 62 words per minute with 3 or fewer mistakes..... then I see me now....

running on stairs?? LOL I can barely walk on stairs!!! my hands, ugh I can't even fingerspell my name clearly anymore, forget typing, i use 1 finger on each hand and my thumbs for the space bar......

just seeing myself getting weaker and having such awsome memories of what I once was, it takes its toll. I've never been real concerned about how pretty I was (or wasn't) I was just me...Im still not too concerned about my looks but again remembring what I once was.

sorry for mumbling, Caren