Nicole has been sick since 1996. Her partner Jason has been acting as her caretaker, as she was bedridden for eight months and then hospitalized for starvation this past summer due to severe food sensitivities that would cause her body to go into shock. They’ve run out of funds and are appealing to friends, family, and strangers to help them manage. Below is an excerpt of their story. Please follow the link to read the whole article if you’d like to help with their medical and living expenses. They are asking folks to commit to a monthly amount for a year through a PayPal subscription, even as low as $2.50/month. Please think of them this holiday season if you can afford to help. Here is their plea:
Dear friends and family of Nicole and Jason,
We are in crisis and could really use your help.
After spending eight months bedridden and unable to function due to a massive relapse of her chronic illness (a debilitating neuro-immune syndrome that began in 1996), Nicole had to be hospitalized in June, 2009, for starvation – she had developed food sensitivities so severe that a bite of any food put her body into shock.
The good news is that she made it through and is now able to tolerate a short list of foods, with the help of a drug prescribed to her in the hospital. The bad news is that we are still fighting hard every day to keep Nicole’s head above water. We’ve relocated to Vermont from Rhode Island so that Nicole could be treated at the Sojourns clinic (which has greatly helped her before), and we are sorely lacking local community.
Jason is running on fumes after months of carrying the physical and emotional burden of caring for Nicole, who is still so ill — on “bad days” she can not speak out loud, and can barely roll over in bed — that her care is its own (unpaid) full-time job.
Vermont social services are badly under-funded, so we currently lack the resources for a personal care helper like the ones who kept us afloat when we lived in Rhode Island. We must pay out-of-pocket for someone to relieve Jason for a few hours a week, though we’re now subsisting off of rapidly dwindling savings.
In addition, much of Nicole’s treatment is ours to pay out-of-pocket, as is the advanced genetic testing available to Nicole through the clinic. This crucial testing and treatment is not cheap, nor is the home medical gear we’ve had to purchase. The sum total of Nicole’s formidable medical expenses, all told, simply exceeds what we can afford.
What’s worse, on top of her existing food and chemical sensitivities, Nicole has developed overwhelmingly strong sensitivities to electro-magnetic fields (EMFs). She must now remain isolated from most electronic devices, as well as from synthetic chemicals (fumes from nearby highway traffic, just for example). Exposure to even low levels of pollutants can make her unbearably sick, and each exposure further heightens her existing sensitivities — it’s an exhausting vicious cycle.
To allow Nicole’s overwhelmed immune system a chance to heal, we have no choice but to relocate again, to a rural area with no close neighbors. It is imperative that Nicole be moved ASAP, to our fifth temporary residence in six months.
Luckily, there is a very bright light on the horizon. It appears that the scientific breakthrough many “Chronic Fatigue Syndrome” sufferers have been praying for has finally emerged. You can read all about it here and here.
So — finally a proper name for this life-robbing illness that plagues at least seventeen million worldwide: XMRV Associated Neuro-Immune Disease, or XAND. And a cause: a retrovirus! Essentially all the top CFS docs who have followed this epidemic for years agree that the implicated retrovirus, XMRV, is the cause, and will be treatable. Hallelujah! Trials of anti-retroviral treatment, we’ve learned, began this past summer.
Nicole has been holding on and waiting for thirteen long, pain-filled years for this breakthrough. We are now more determined than ever to get Nicole on a stable path back to wellness, and will not stop until this has been accomplished! Viable treatment could be available as early as a year from now, as most of the drugs being tested are already FDA-approved — WE JUST NEED AN OPPORTUNITY TO KEEP NICOLE GOING UNTIL THEN…
This is where you (we hope!) come in. We’ve decided it’s time to mobilize the troops en masse in the form of this online fundraiser.”
posted by earthwalker on November 24, 2009 | 686 views | tags: CFS, chemical sensitivity, chronic fatigue syndrome, electrical sensitivity, electromagnetic sensitivity, ES, fundraiser, MCS, ME, myalgic encephalomyelitis, XAND, XMRV retrovirus
John
November 28, 2009 at 1:04 pm
Hi. As a Chronic Lyme Sufferer for almost 10 years now i feel sorry to hear these tragic stories. I was almost bed ridden myself but after 30 Docs and 7 years i decided to look into Lyme Disease and discovered how Lyme can do so many different things to so many different people.
All my blood test for Lyme were either neg. or borderline Lyme, I was told i had CFS, Fibro among other things. Lyme is the great imitator and most Docs don’t have a clue about it, i asked myself the key question, do you go outdoors a lot or have a pet at home etc. Ticks are everywhere and can bite in places not easy to detect because they go to warm areas of the body.
In the movie UNDER OUR SKIN a slew of people like me are on there telling there story of how many Docs misdiagnosed them. I hope better testing will evolve someday so Lyme can be the first thing ruled out not the last and it hast to be done by a Lyme Literate because main stream Docs are clueless to Borrelia and what it can really do. I wish you all the best as i know how Lyme wiped me out financially and ruined my whole life.
kasha
November 28, 2009 at 5:01 pm
Nicole,
You should move down to Mass to ride out the next two years. There are better resources and there are tons of places like Sojourn everywhere.
There are social services, health benefits, I have a state paid PCA, drug assistance, a section 8 apt.
The hospitals are better too.
Email me if you decide to do this and I will send you medical info.
A CFS sufferer from MA,
Kasha
earthwalker
November 28, 2009 at 5:55 pm
Thanks for your comments John and Kasha, but Nicole will probably not see them. If you want to contact her, you’ll need to find her partner’s email in the articles linked to above and write to him directly with your message. Thanks for reaching out – I’m sure Nicole would appreciate it.