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Jason
401-261-3261
NICOLE AND JASON NEED HELP
(and an environmentally clean place to stay, ASAP!)
-- PLEASE READ --
Recently, Nicole, who suffers from a serious disease of the autonomic nervous system (POTS and ME/CFIDS), as well as Multiple Chemical Sensitivity Syndrome, became much more acutely symptomatic due to a mold infestation in her and Jason's apartment. Already in a health relapse for nine months, and barely able to sit or stand for more than a few minutes at a time without provoking unsafe blood pressure and pulse fluctuations, she suddenly became unable to tolerate all food and medication.
Nicole went through a blur of starving for three days, and experiencing dangerous medication withdrawal, as things had reached such a low point that each bite of food put her body into shock: burning tongue and mouth, soaring blood pressure and heart rate, burning ears, extreme full-body discomfort, writhing, convulsions, etc.
She had to be rushed to two different ERs (RI Hospital and Miriam) over the course of 24 hours. On the third day of this situation, Jason and Nicole had doubts that she would survive. They immediately hired a private ambulance and went to Brigham & Women's Hospital in Boston, which has a renowned allergy/immunology team. BWH admitted her (June 28 - July 4), ran a plethora of tests (results still pending), and prescribed a medication (Gastrocrom, a mast cell stablizer) that allowed her to begin eating again -- still with symptoms, but eating nonetheless.
The hospital discharged Nicole prematurely (such is the "modern hospital stay," as one administrator said), and Jason spent countless hours on the phone searching for a safe place for them to stay, since they couldn't return to the moldy apartment which sent her to the hospital in the first place. Nicole's chemical sensitivities were made astronomically worse from the ER visits and the hospital stay. She now must wear a mask most of the time, and develops the same symptoms of shock if exposed to nearly every chemical: gasoline, scents of laundry detergent clinging to people's clothes, mold, new carpeting -- the list is very long. Exposures also make her autonomic nervous system disease worse, so it's a vicious cycle. Exposures also make eating difficult, despite the new medication, which is still a major concern.
Because of the nervous system dysfunction, Nicole is bedridden, though she can sometimes endure short (1-2 minutes) transport in a wheelchair. Most of the time she has to be carried, especially up and down stairs.
In addition to petrochemically-derived chemicals and scents, Nicole is absolutely unable to tolerate exposure to electromagnetic frequencies emitting from devices such as cellphones, iPods, computers, televisions, etc.
Nicole and Jason are currently staying temporarily with some incredibly dear and generous friends (Niki, Brendan, and Cormac) in Matunuck, RI through Monday, July 13. At that point they will be in desperate need of a clean environment to transfer Nicole to. Their car is packed with necessities and they are living day-to-day. They are grateful that Nicole is still alive, and they are very much in need to folks to really step up and help keep her alive! If you can drive or fly in to help be a part of their survival/support team, now is the time to do it. There will also be a number of ways that you might be of assistance from a distance.
They have already rented an apartment in Brattleboro, VT, which opens on August 1. They may not be able to move on this date, however, until Nicole is more stable, as it will be impossible for the two of them to manage in a new state without the infrastructure of support that exists in Rhode Island.
Nicole and Jason will also need help clearing out their current apartment and getting all of their belongings into a safe storage space (one that doesn't use pesticides, for example--a controlled space such as somebody's home would be preferred for storage.)
The most crucial thing right now is immediate help. Help finding a safe living space, and help supporting Jason, as Nicole is currently completely physically dependent on him as a caregiver while he's also trying to organize a million different things at once just to keep them afloat. They have not been able to set up things like nursing/hospice home care and home IV, as every day has just been a struggle to simply survive and deal with the absurd reality that they are "couch surfing" at such a medically critical time.
This list will have several moderators and be updated regularly. Discussion is welcome, and Jason will be able to see messages (though Nicole won't). Thank you so much for anything you are able to contribute to help in this struggle. Nicole and Jason send love, gratitude, and hope.
On Fri, Jul 10, 2009 at 6:24 AM, <RHODE_ISLAND_FIBROMYALGIA-CFS_SUPPORT@yahoogroups.com> wrote:
Messages In This Digest (1 Message)
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- ME/CFS HealthWatch - Could Omega-3 Deficiency Be Affecting Your Long From: Kerrie Murray
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ME/CFS HealthWatch - Could Omega-3 Deficiency Be Affecting Your Long
Posted by: "Kerrie Murray" ladiekerrie@... blu_bedroom_eyez_33
Thu Jul 9, 2009 10:45 am (PDT)
Rituximab helped all ME/CFS symptoms in pilot trial. Web version: prohealth.com/em/EM070809C Font Size: A A A
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~*Kerrie*~
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Click the link to join or just to check out the group! New members welcome! This group is for ANYONE with Fibromyalgia/CFS, you do NOT have to be from Rhode Island to join!!!
http://health.groups.yahoo.com/group/RHODE_ISLAND_FIBROMYALGIA-CFS_SUPPORT/
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