LymeNet Flash: THE FORGOTTEN by a 14 yr. lyme sufferer

This is topic THE FORGOTTEN by a 14 yr. lyme sufferer in forum Medical Questions at LymeNet Flash.

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Posted by nan (Member # 63) on :

THE FORGOTTEN

I am not crazy

This is not all in my head

I am not making any of this up

I am not a hypochondriac

I do not seek attention or fame

I do not have borderline personality disorder

I don't need a psychiatrist or a psychologist

Why do you admonish me when it is you who does not understand?

None of this is my fault

How can you say that my disease does not exist?

Why do you say it is not in my town?

Hush, keep it down or panic will ensue

People might move away

Or worse yet, never come and visit

We can't have that can we?

I stand here before you as a testament to my illness

I am a helpless victim of a cruel disease

And an even crueler system

Your misdiagnosis is designed to render a pill so I go away

You choose to ignore me and I will go away

Eventually I will die of a disease called ignorance

If the illness doesn't get me first

Some die by their own hand out of desperation

Many have tragically lost hope

You see the dark circles under my eyes and say that I must be tired

You have no idea of my tiredness
Not half as tired as I am of hearing that I don't exist,

That I am invisible,

That I am nuts,

Or that I do not matter

You say you don't believe in my disease

But it believes in me

Let's take stock of all my imaginary illness has given me

The gift of my experiences and the toll they have taken

I am allergic to most foods, and many medications but not really, my body just thinks it is

I am not a basket-case, but I feel like one

I have seen 10 doctors, or 20 or 50 or 100

None will give credence to me

I have every illness known to man except that which I truly have

According to them

I don't smile because my face has nerve damage

You interpret it as looking mean instead

I try to communicate but it is work for me

You think I have an attitude problem

I can eat only 5 foods for months at a time, or sometimes only one, but this isn't a diet

You don't understand and you make me feel bad about my food ``choices''

I run screaming out of the store because the light bothers me

There is terrible bone pain

I can no longer use my limbs

I have no sex life

I suffer panic attacks and palpitations

I have a heart block, an arrythmia or chest pain

Fatigue so profound I feel like the walking dead

Hello you say on the phone in my moment of silence

Did I hear what you said? Forgive me I'm quietly seizing

Blanking out, momentarily ceasing to function

You hardly notice, you think me not listening

I wear sunglasses in the daytime not to be fashionable

I can't stand sound at any volume or I cannot hear at all

Motion sickness plagues me, my stomach my enemy

Turn me in circles and I get confused, disoriented, dizzy

I struggle to regain my physical strength

Desperate for human connectedness

A kind word, an understanding heart

Save me from this isolation I feel

An unwelcome blanket of silent uncertainty

You say I want for attention

Tumors appear in me for no apparent reason

My organs are failing while you call my blood work ``normal''

My ears ring incessantly; my eyes no longer work or I can no longer see

My head hurts worse than any migraine I have ever had, even my hair hurts

I wince when you touch me, when you kiss me

I need reassurance but your embrace is painful to me

Or I find none at all, feeling your rejection from lack of support

Because I am too much work

Because you are tired

Or you have had a long day

You walk out on me

I have no value to you

Because you cannot relate

Strange sensations, odd tastes, smells that are not really there

I have lost my hair and not from bad hair genes

Lost weight, wasting away as nourishment escapes me

I feel biting, stabbing and jabbing pain in my body.

Nails of fire are burning my skin, a red-hot poker

Bugs crawling on and under my skin

They bite me relentlessly but I cannot see them

I am being eaten alive, from the inside out

Excuse me while I die, one cell at a time

My immune system is thwarted by something I cannot control

My brain manipulated, my body stressed

This thing controls every aspect of me, I see the world through a filter

My thoughts are dark, sometimes suicidal, you call me insane

Or elation, roller-coaster mood swings which have no meaning

I am so cold, hypothermic, or feverish, wet from night sweats or chills

My joints and muscles hurt, ache, throb, burn, and are swollen

Who are these people I am hallucinating? I know they do not exist

Yet I see them before me, standing there, threatening me

I am paralyzed, I am incontinent, I am a shell of the person I used to be

I can't breathe, or eat, and I can't think straight

Words fly out of my mouth that I did not choose

I am dyslexic, I am speech-impaired, I cannot speak at all

I forget where I am going, what I am doing, and who I am

I am confused and frightened

I lose my temper from nothing at all, and I fight with everyone for reasons I can't explain

The night hours are long and I cannot sleep, or I sleep longer than I should

I fall asleep in the daytime and need rest throughout the day

I am afraid of slumber, nightmares disturb my sleep

I stumble along, knock things over and fall

You tell me to be ``careful''

I have no perception of myself in time and space

I cannot control my own movements

I am called disabled by some; others refuse to label me that

You accuse me of crimes I have not committed

Like failure to work

Failure to pay child support

Failure to show up places

Argumentativeness

Impatience

Like it is really a choice I would make

You reject me because I am unreliable

Because you don't understand

I am sorry I missed your family function

Or dinner party, or funeral, I was too sick to attend

You say I am not sick and my disease is but my imagination

I have rashes on my body that are hideous and uncomfortable

I cannot eat; my toilet is a valued friend

I am hyperactive, or a slug, laying about each day

I have trouble learning new things

Or remembering them

When you poke me with a needle, my blood won't flow

I am so tired of the tests, the needles and the drugs

The home remedies, the sure-fire cures

And emptiness of the unknown

I am spastic, I twitch, I jerk, I tremble, I shake

I can't lift a milk carton, or dress myself, or comb my hair

My teeth hurt, my gums and nose bleeds

I have bruises all over my body and I don't even know why

When I look in the mirror, I no longer recognize the image there

The person I was is now a shell of my former self

I have lost my children, friends and family because they just don't understand

Maybe I can no longer work, uncertain how I will survive

I've lost my livelihood, my home, my finances, my health, and my future

I cannot get disability because my illness is not on the list

Or maybe I have disability but it still doesn't help pay the bills

I have filed bankruptcy or live on the verge of it

I cannot get insurance because I am ill but no one will say that I am

I cannot go to doctors because they don't want me there

Or I have the wrong insurance

Or worse yet, none at all

Family courts have punished me

Taking away my children

They tell me I am playing games

Because I cannot work

Because I endlessly reschedule hearings

Because I struggle with my memory on the stand

You accuse me of heinous crimes

You ridicule my supposed disease

And chide me for not having proof

And take advantage of me

To get what you want, my children

Because you can and they let you

Because I am ill

Maybe you found me wandering in the street

Speaking insanity, out of my mind

You accused me and put me away

Shame on you

Yes I am still stick

Is this taking too long for you? I am sorry

I don't know if I can be cured

No there are no tests to see if I am well

I cannot find a doctor to treat me

Or diagnose me

Or care

This never should have happened

It could have been avoided

If you had just listened to me

And tried harder to help

I can no longer drive, walk, think, write, or function

What is a normal life?

I have a service dog

Or maybe I can't afford one

I can't stand up or walk straight

I am depressed I am alone

I am lost in a sea of despair because no one sees me

I am invisible though I stand before you

You close doors in my face and send me away

Because you don't want to deal with me

Because you say three weeks is enough and I should be cured

Or 10 days or 30 or 100

Or worse yet you experiment on me without knowing what or why

Because you are afraid of being a doctor

Of losing your license to practice

Hesitant to being compassionate

Or afraid to pass a Bill

To take governmental control

To assist your constituents

Because no one wants responsibility

To be forced to acknowledge that I am ill

Like it is some sort of a crime

I did not choose this disease

It chose me (oh lucky me)

To you I don't look sick, but I assure you that I am

Outside I look fine, but inside I am screaming

I am angry

I have a right to be

Let me explain

I am the forgotten

I have Lyme

�2006 by PJ Langhoff
a 14-year Lyme sufferer

www.lymeleague.com

(please feel free to distribute this anywhere, but leave the last 3 lines there for credit. You can also download the file at www.lymeleague.com/prose.html as a Word file)

[ 07. April 2006, 05:23 PM: Message edited by: nan ]

Posted by Mo (Member # 2863) on :

wow.

Posted by Mo (Member # 2863) on :

This is really powerful -- Thank you for sharing your writing PJ.

Note to Nan:

When I read your headline I thought it was written by a 14 year old..

I wonder if you can edit that to say
'14 year Lyme sufferer'

Mo

Posted by nan (Member # 63) on :

Thanks, Mo! Can I blame it on Lyme? [kiss]

I thought this was very powerful, too.

Posted by nan (Member # 63) on :

Thanks, Mo! Can I blame it on Lyme? [kiss]

I thought this was very powerful, too.

Posted by AZURE WISH (Member # 804) on :

Wow is right.

The sad thing is I knew someone who did lose her daughter due to lyme. [Frown]

Posted by Gretchen P (Member # 8403) on :

Sheesh, this is our life! So powerful! Thank you to the author.

Posted by 5dana8 (Member # 7935) on :

I am so deeply sorry [group hug]

Posted by lymster (Member # 5964) on :

wow!

This says the whole story, so true, so close to everyone of us.

Lymster in WA

Posted by hopeful4 (Member # 8486) on :

Wow! That's powerful! Thanks for posting this.

Posted by humanbeing (Member # 8572) on :

[bow]

Nan, you're courage in writing this is inspiring. We need to keep telling our truths and not hide in dark places.

You are helping so many people with your writing...
Best

Posted by humanbeing (Member # 8572) on :

Can I post it on the new Lyme Artist webpage? See link below...

Posted by nan (Member # 63) on :

Yes it can be posted...see below...this was written by PJ Langhoff. [B][/B]

�2006 by PJ Langhoff
a 14-year Lyme sufferer

www.lymeleague.com

(please feel free to distribute this anywhere, but leave the last 3 lines there for credit. You can also download the file at www.lymeleague.com/prose.html as a Word file)

Posted by bettyg (Member # 6147) on :

Nan, may I suggest you edit your topic line to
THE FORGOTTEN double-spaced & leave rest of what you have.

This way the readers will know the difference between YOUR post & PJ's SINGLE-spaced post of her story. Thanks Nan.

It's effected all of us the same way!

Posted by Kerryblue (Member # 4077) on :

Hi, UNbelievable from 14yr. old.WOW...

Could not have put better myself, since there was not 1 sentence myself could not relate to.
Have few yrs. on her.ahummmmm???lol

Thanks for the post, Sooo Sorry for the pain & that it has been this way for waaaaay toooo long.

Unfortunately have long way to go according to my 14 yr. research & work at pain clinic with many coming in younger & younger with no 1 to help.

Or ones who have Dr. hopped so long can`t even remember the ducks names anymore.

Till came to us who believed.

No words to express what their faces told.

Wish had a picture of them all.

When found someone believed them & all the mis-dxes.

Priceless

Take care, keep your chin up kiddo...
All some of us can do...

[group hug]

Kerry

Posted by bettyg (Member # 6147) on :

Kerryblue,

PJ is not 14 yrs. old, but a lyme sufferer of 14 years.

I was going to PM you, but you have private messages disenabled. Go to MY PROFILE, and look for private messages and show YES.

PM go directly to your home email addy but your home addy is SECRET.

You can read the entire PM from your in-box, and then click on the link shown so the sender knows you opened their PM to you; otherwise, they have NO knowledge you got their PM ok.

only 60 messages can be in sent/in. So delete often.

Since you have the FULL PM in your private email, you can start a file there IF you chose to keep something important to you.