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Valley Fever Awareness

Awareness increases prevention and brings about solutions, help spread the word and halt the disease

Valley Fever Awareness



Last Updated: 2/4/2008

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City: Southwest, CA and travelers to these regions

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January 27, 2008 - Sunday 

Current mood:  focused
Category: News and Politics
I originated this site out of sincere concern for a close friend who contracted Valley Fever.  Prior to her hospitalization, she had never even heard that it existed.  By the time of hospitalization, it had advanced to a stage that nearly took her life.  It did in the least change many things in life during the early battle. 

Too many find this disease life altering and difficult to overcome. 

Though my schedule took over and did not allow me to work it for the last several months, I have been keeping an ey on the progress of research and funding.  There was a difficulty with incorrect passwords, that is now over and the site is fully operational once again.  I am afraid, that I thought, this was just an information site which was available all over the internet and therefore, just duplication of efforts.  In fact, I came here thinking about closing it.

I chose to add to this blog because when I reopened the site I had the following emails waiting for me making me realize it is much more than inspirational... this site can offer hope to many who feel lost and forgotten ...  I am sincerely apologetic for taking this task so lightly ... from this day forward, this site will be covered by those dedicated to keeping the light shining. 

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Original blog

Many who are reading this may be here to support friends, a loved one or a close family member ... or you have been directly affected by Valley Fever as a patient, family member, pet owner...etc. 

Please share with us your story .. how you contracted it, how long you have had it, how it has affected you most and what you believe will help yourself and others? 

Thank you for your time and input.. it is important to us!

**********************
Messages that were opened today ... I asked Greg's permission to share this with all of you

 
http://www.myspace.com/blackvelvetknight
G-Diddy

Jan 21, 2008 1:00 PM

Are there any focus groups around?

My name is Greg Taylor.. I think that I had written my story to you before, not sure if you still have it...

On Wednesday, 12/6/06, I woke up for work & wasn't able to raise my right shoulder or arm. At first, I thought that it was due to years of playing football, back in the day. It was hard to shower, shave & dress, with one arm, but I made it.. Went to work & told people that I had a sore shoulder.

After work, I went to a nearby urgent care clinic, the nurse took my temperature & vitals, but didn't tell me anything... She advised that the doctor would be in to see me. When the doctor came in, he asked me, if I was feeling ok. I said "yes, I feel fine, but my arm & shoulder hurt." He then proceeded to tell me that I was running a 103 degree fever. I still said that I was fine & that my shoulder hurts. He did xrays & had set a date for blood work to be taken, on Saturday.. He gave me a prescription for 2 anti-biotics & 2 pain killers.. That was it..

I went home, took the medicine & went back to work, for the next two days... Saturday, had my blood drawn in Mesa(LabCorp)... However, Sunday, I wasn't feeling all that good, thought I was getting the flu...

Called in sick on Monday. I was out sick, at home all that following week, by Thursday, I was having trouble walking or standing, I, being stubborn, still thought that I had the flu. My friend, Jamie, came by to bring me chicken soup & told me that I was "burning up". The urgent care doctor, called on Friday, around 6:30pm, to see how I was doing, I told him that I'm having trouble walking... He asked if I had heard from LabCorp about my blood tests, I said no.. He called them & called me back immediately, asking me if I had ever heard of "Valley Fever"? I said no.. He told me that I had it & needed to get to the hospital immediately..

I couldn't drive, so he called an ambulance & set up a room in the emergency room, at Tempe St. Lukes...

I was in the emergency room for 5 hours, then admitted to a room @ around 2:30am 12/15/06.

I was in the hospital for 11 days. I was diagnosed with "Disseminated" Valley Fever... There were lesions all over my lungs & on my lower spine.

I was terminated from my job with Insight, while I was in the hospital. I was released on 12/26/06. I applied for ACCCHS, but was denied, because was told, I made too much money. I didn't have any income at all!

I was brought back to Insight on 3/26/07, but had a violent & painful flare up on 5/18/07. I was terminated .. my doctor advised HR that I needed time away from the office, because the stress of my job, was exascerbating my condition..

So, I've been unemployable ever since... It is extrememly painful to sit or stand, for any length of time... Lying down seems to be the much lesser of both evils..

When I lost my job, I lost my medical insurance, so all the tests & medicine, that I need to stay on top of the disease, I'm not able to have, so I've been going it alone... The medication that I was taking was Fluconazole 800mgs/day. My doctor says that I needed an aggressive treatment, because of how far the disease has spread...

This disease has taken a great deal from me... People don't understand that this situation is depressing, which has further fueled my depression, because I'm a very proud black man, who was able to take care of himself & now, I'm not... I don't know if anyone can truly understand how I feel.

I'm abbreviating this story, because there is so much more... Is there anyone or place that will understand what I'm going through?

Sincerely,
Greg Taylor

Katherine

Jan 26, 2008 5:57 PM
hello my name is katherine and i really Appreciate you putting this site together! I have had valley fever for almost a year. and almost every time someone ask why I wasn't someplace like school ( am in 9th grade) and I tell them I have valley fever and there like what is that? Of Corus I tell them! so i just really want to say thank u very much!

And in this one, I feel concern for this young woman and her boyfriend... We need to gather together and Help each other even if it is only to provide mental support ... this is serious ... she has not responded so I am not certain what happened .. prayers for them would be appreciated.

Nov 1, 2007 6:56 AM

my boyfriend is trapped inside his self from vf help!!

my boyfriend came home from prison this time last year. he told me he had valley fever.

i did not think twice about it.

he was not sick.

then about 6months later i took him to the hospital cause he had a bad headache.

he has not come home or spoken to me since that day.

he can blink and squeeze my hands so i know he is aware and the only words i have heard him say is (i dont want to live anymore) and that was months ago!

he is now in a convalesent hospital because i cannot bring him home (special condition of his parole not allowed around me) he lays in his pissy shitty bed all day. not able to speak. or move. the hospital stopped giving him treatments.

i can tell by the looks on his face that he is completly aware of everything around him he knows what is happening. the doctors wont let him give me power of attorny because they say that he is not competant. he has no family.

what i want to know is, has anyone ever recovered from a case this severe?

and if not, How long do they usualy suffer?

How long does it take them to die?

is there anyplace that specializes in this?

that maybe is doing research or something and will take him in and care for him ya know make sure he is not in pain, and maybe learn from it?

because where he is now they wont even give him a tylenol. i have to go in every other day and throw a bitch fit to get him up in a wheel chair so i can take him outside and let him smoke a ciggarette.

PLEASE HELP, I CANT STAND TO SEE HIM SUFFER ANYMORE

i just need to know what my options are ...  i would hope someone would do something if it were me laying in my shit all day and not even able to take my own life.


Well there you have it.. this is serious stuff people... None have to be victims ... we can rally around the ones who are suffering and find ways to get them help and for those who are vulnerable, we can bring awareness to increase the ability to prevent it..

Who is willing to be in charge of the group and help me keep this page up to date? 

Thank you all, love you for being there... lets shine the light of love to all we can...
~ Jurene


OK now it is time to update this with your story, your thoughts on what more we can do, and getting together to make this awareness site work!!!

Be sure to look at the site and listen to the radio interview ... it is going through upgrades .. I have some visuals to add and some more links to put in.. please let me know if they are working, have to get this thing to be helpful... and send everyone you know to it, please .. incidents are popping up all over, primarily travelers, however, you can never be too aware of your environmenr.



TeMple of the M∞nSh∑l
Moon Shel

 
Very interesting...
I had Valley Fever about 20 years ago, yet the doctor's at the emergancy room had no idea what I had. I didn't find out that I had it until I lived in Seattle 1988, when they found something on my lung. I didn't know it was such a big deal as this.
hmmmm.

Thank you for your site!
Shell
 
Posted by TeMple of the M∞nSh∑l on June 22, 2007 - Friday - 11:43 PM
[Reply to this
Valley Fever Awareness

 
Many of the cases are able to go undiagnosed for years until the immune system is compromised or something causes it to grow faster. This is the importance for early diagnosis and taking efforts to reduce exposure. It is when it becomes diseminated, that it creates all the major problems. You were lucky. If you get any symptoms accelerated at times of stress of immune suppressed illnesses, be sure to be retested, the information out there, says you will still have it.
 
Posted by Valley Fever Awareness on June 24, 2007 - Sunday - 3:59 AM
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Jocelyn
Jocelyn Gottesman

 
My Dad was affected by Valley Fever in Dec of 2006. He was in the hospital for a little over 3 months. It is now July 8th and he is still recovering. He still needs assistance when he walks. For the most part he is on his wheelchair. Every other day he has syncope episodes. He passes out and no one knows why. All his vitals are fine. Could it be the medication? Who knows? It is frustrating!!!!
 
Posted by Jocelyn on July 8, 2007 - Sunday - 8:31 PM
[Reply to this
Donna
Donna Bourne

 
The valley fever almost took my life in 2003. I was 90 pounds, with a 5 cm cavity in my left lung. That is a large hole. I had problems with arrthmia (sp) due to the lung damage. I had eye problems (sun sensitivity and cadaracs(sp)) Joint pain, and night sweets. I am doing so much better now. I only suffer from fatigue and joint pain now. My eyes, lungs and heart are all better.
Financially VF played total havoc in my life. Having trouble seeing, caused problems with driving. Problems with my health caused me to have no energy for a full time job. The cost of medication to treat the illness, was out rages. Keeping medical insurance was impossible... What a nightmare...

After all this time, I still do not have medical insurance. What a nasty chain reaction. The laws need to be changed and more needs to be done with SSI to help people who fall into this nightmare... I caughter VF in August of 1996. Went undiagnosed in Feb 2003.
 
Posted by Donna on July 18, 2007 - Wednesday - 11:34 PM
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cumherelilkitty
Christina Baker

 
my boyfriend came home in oct 06 from prison. he told me he had valley fever. he wasnt sick so i forgot about it. 6mo. later he was complaining of a headache i took him to the hospital he has been there ever since. the only thing i have heard him say is that he does not want to live anymore. but he has been unable to speak for months now. he cant walk or feed himself. but he can squeeze my hand and blink his eyes. he is aware of everything and everyone around him. but unable to move. He is now in a convalesent hospital the doctors gave up on him and quit doing treatments. I Know in my heart that he can recover if given the proper care. i just dont know where to find it. the simple fact that he can clearly answer my questions with a blink of his eye is enough to give me hope that he may move and speak again.. but if not. does anyone know how long he will have to suffer like this before he finaly dies? Is there hope for a case this severe? does anyone know of a place that is researching vf that might take him in with no insurance or income just to learn from him?
Has anyone started a petition or anything? when someone is this bad i think they should be euthanized if they choose to!!! we can do that for our pets! i dont want to go to prison for murder!
 
Posted by cumherelilkitty on November 1, 2007 - Thursday - 2:09 PM
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Jen
Jen Strache

 
I need help. I moved here from WI in march of this year, and now i have valley fever. the doctors are dragging their feet and i am getting worse by the damn day. yesterday i pushed my kids around in a cart at walmart and today i can't move my left arm at all. it hurts so much. the headaches are insane, the inhalers don't fucking help. sorry. i'm so tired all of the time, i have a baby so i have to be awake and alert. is this disease really eating away at my muscles or what is going on here? i am pretty sure i am going to die here. yes? no? i am scared to death and feel very alone.
 
Posted by Jen on November 12, 2007 - Monday - 7:06 AM
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