LymeNet on Facebook
LymeNet on Twitter
The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.
When purchasing from Amazon.com, please
click here first.
Thank you.
Dedicated to the Bachmann Family
LymeNet needs your help:
LymeNet 2020 fund drive
The Lyme Disease Network is a non-profit organization funded by individual donations.
Author
Topic: THE FORGOTTEN by a 14 year lyme sufferer
nan
Frequent Contributor (1K+ posts)
Member # 63
posted 04-07-2006 04:45 PM
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 suffererwww.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, 05:24 PM: Message edited by: nan ] -------------------- nan
Posts: 2135 | From Tick Country | Registered: Oct 2000
| IP: Logged |
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted 04-07-2006 08:36 PM
That is such a tough piece to read. It really speaks to all of us in one way or the other or in all ways for some of us. I sure hope this person is getting help she needs. Let us know if there is any way we can help.... Ann - OH --------------------www.ldbullseye.com
Posts: 5705 | From Ohio | Registered: Jan 2002
| IP: Logged |
bettyg
Unregistered
posted 04-08-2006 01:18 AM
Nancy, I suggest you edit your topic title and show "double-spaced" for easier reading. I couldn't figure out why you had a separate post when Paula posted it herself; now, it makes sense...double spacing for us neuro lymies.
IP: Logged |
arcyone
Member
Member # 5956
posted 04-09-2006 05:51 AM
I see you. You are not invisable. You are not forgotten. You WILL get better. Please remember, this is not a disease, it is an infection. A TREATABLE infection. It will take time but you WILL get better.
Posts: 16 | From Buffalo, New York | Registered: Jul 2004
| IP: Logged |
Contact Us | LymeNet home page | Privacy Statement
Powered by UBB.classic™
6.7.3
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey
907 Pebble Creek Court ,
Pennington ,
NJ
08534
USA
http://www.lymenet.org/
Home |
Flash Discussion |
Support Groups |
On-Line Library
Legal Resources |
Medical Abstracts |
Newsletter |
Books
Pictures |
Site Search |
Links |
Help/Questions
About LymeNet |
Contact Us
© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions .