And please read some of Noel's Loving poetry on the preceeding pages.
After I posted this in my forum, I decided to go ahead and share this with as many people as I can. I also will be sending it to every representative in public office in the State of Hawaii, and who knows from there? Please let us create a LOUD voice that gets the message to the officials, that our health care system needs a RADICAL overhaul. And educate each other regarding the risks of Hepatitis C., AND the importance of organ donation. I have Hep C, and have been on treatment for almost 6 months. It has been rough. I was called and told to stop the meds because I am now classified as a *non-responder* ;( Several days ago I came across a post, on the Hep C board,and went to the referring site that described several symptoms I had that I *thought* were hayfever. Dry itchy eyes,nose, dry skin, mouth, and loose teeth.
I went to my dentist the next day and she was appalled at the rapid deterioration of my teeth, cracking, breaking, & loose. Of course, Hawaii Quest will not pay for anything other than pulling when infected. I cannot afford an infection! I told the optometrist next door of my vision loss, dryness, and pain. He immediately called the eye specialist. THANK GOD I saw that post and site and saved my Sight!! Today I went to the eye specialist, and was diagnosed with Sjogrens syndrome,an auto immune disorder probably brought on by the treatment I've been on, or the hep c itself. Left untreated, it can cause blindness in a VERY short period. I am so grateful I caught this in time! I have had some deterioration, (which I was told was aging)... in 3 short months! Also there are two phases of this disorder, the first affects eyes and teeth. It can develop into the systemic disease, which is much more serious. It is also associated with fibromyalgia, which I was diagnosed with years ago. Fibromyalgia is a disease which affects the muscle groups of the body causing pain, sleep disorder, fatigue etc. It won't kill you, but some days you wish it would.
It is time to make the public aware of Hep C which is going to be much more devastating than HIV, unless we get off our duffs and become pro active.!! Have you EVER heard a public service announcement about Hepatitis C!!?? Many people confuse Hep B with hepatitis C, and get a vaccination they mistakenly assume protects them. There is NO vaccination for Hep C. I am ill, I cannot do this alone, and we need healthy people to fight for us, because by the time most people find out they are ill, and do not have the resources nor have the energy to carry this load without your help.
Get TESTED! This is NOT only a drug addict's disease!!! My liver doc thinks I possibly have had this since the 1970's! I am Rh- and was given Rogram. Also,I was a practicing midwife ie; exposed to lots of blood. Health care workers/fire/police/ lifeguards are at risk. An outstanding number of Vietnam Vets have hep C. Tatoos, (the ink)!!! ANYONE who received a transfusion or ANY blood product before 1992. If you EVER snorted cocaine and shared the straw, there is a risk. Also If you have shared razors/toothbrushes etc. there may be a risk. If you do test positive take IMMEDIATE action, adjust your lifestyle..Stop drinking, smoking etc. Educate yourself. DON'T wait for the Docs to do it! I think many doctors really DO care, but their hands are tied by the political machine, and insurance companies! Had I been treated long ago this immune factor may not have existed, with it's added complications.
I was diagnosed in 1991, when my liver was in good shape. Doctors told me I was fine, my liver enzymes were low. The immune factor developed right before treatment, August 99. My liver enzyme level went down after starting treatment, and Dr said that what I had before was high for me, since it went lower! Had I not read the Hep C message board...I may have gone blind, like two of my chat friends have. Become your own health care consumer!!!! We need healthy people to lobby for us, as energy permits, I want to create more public awareness about this disabling and life threatening disease. We Need the awareness because we need the Funding to find a cure, and so treatment can be made available for ALL! And so financial assistance(disability) can be accessible. It appears that our country would rather give disability to a still using addict,than a productive member of society! Prisoners get treatment!! The system needs to be made accountable for the needless death and suffering of it's citizens.
I was sent to the State's disability doc for a reassessment; based on a 10 MIN exam, he determined I am able to work 30 hrs per week.This was for a mere $370.00 a month, just a temporary stipend while I apply and fight for SSI.; AND which I must repay if given disability. It dosen't take a rocket scientist, to figure out where his loyalties are. But a USING addict can get three hots and a cot, AND financial aid!; relapse over and over and do it all over again! THAT is abuse of the system. I know of someone that is doing exactly that!
SOMETHING IS WRONG WITH THIS PICTURE!!!!!
I appeal to you to become aware and let your voice be heard. These are hidden diseases that one can have and still remain healthy *looking* for a long time!!! Our friends and family and EVEN our Doctors call us lazy, hypochrondiacs, depressed. We need to question why doesn't our health care system take care of it's citizens. Why do senior have to deplete their savings to survive? Many who are veterans?! Why is health care so exorbitant? A very valuable medication that WORKS for Sjogren's, so one doesn't need the tear duct procedure, EXISTS but the FDA has not approved it!!!. How MANY other cures do they have? My son Ivan was born with a congenital cataract... The FDA at the time, hadn't approved a size that would fit and stay on. Why?? They WERE available! As a result, he is blind in one eye. Helplessly, have I watched wonderful people die this past 3 years, some that NEVER used drugs, because they are made to wait till end stage liver disease to be ELIGIBLE to be on a transplant list, and then there is no liver available!!??? *They* are selling, but I'm not buying! Very rich and famous people CAN get livers, way BEFORE end stage. I know you all have your own experiences you could add!!
It is TIME for a change in this country's health care system. It is time we take care of our own. It is time we look at the waste in State and Federal government, from the lowest to the highest levels. I experienced the waste first hand at two different state positions I held. IT WAS ASTOUNDING!
We NEED a voice! YOUR voice. Write your local reps. We also need livers, please educate yourself, your family, friends, about organ donation,and add yourself as a donor.
Thank you all for your love and support. I could not have survived this year, without my on line friends.
I love you all dearly. Peace and health.
We will not go away.
We'll be in your face tomorrow,
and again the very next day.
We are so very weary,
For too long we have carried
If only you knew how many
It's time to make the changes,
You have masqueraded
Hepatitis C is a killer,
written 3/27/00 by ~Noel~
face the pain they did inflict,
on women and their children,
putting families on the run.
Throughout all time and history,
And they stood before their victims,
They saw women by the hundreds
And ships that bore the pain
The great bald eagle heard the lies
These men they saw the numbers
As they stood before Earth's Children,
For when we hurt another,
So I say to you take heed now,
by ~Noel~, Jan 21, 2000
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