Thursday, May 5, 2011


     Due to the condition of my health, I am forced to stop doing almost everything... except manage my illness. I am very upset about this, but I can do nothing but surrender to the truth. The truth is that the daily maintenance of my body in it's current condition is a full time job. This means I will be taking a break from blogging both here and on Life in Neverwell.
I am going to try to work a little on Quintessia's Journey, if I can.

During the course of my 30 year oddessy with this amalgamation of immune disorder(s), ME/CFS, etc, I have tried everything to change my condition. I've done all the New Age  "think yourself well" programs (which lead to me ignoring symptoms in an effort to will myself healthy. Silly of me. And dangerous.) I had extensive counseling and analysis, which showed this was not a psycho-somatic in origin. I've participated in experimental drug trials. I have spent $10,000's at an environmental clinic, purifying my body. I have met with authentic shamans, psychics, and gifted healers. I also became a Reiki Master in 2000. I have tried supplements, herbs and peculiar diets (I am NOT allergic to gluten). I have tried almost everything (within reason) to bring my body to wellness.

I feel it's important for people to realize that being chronically ill is not a failure on the part of the sick person. The idea that there is "something out there, but you just haven't found it" is also useless. No one wants to be this debilitated, to live a half-life. All of us with chronic illness are doing the best we can with what we have.

So.... in the spirit of living the truth, I am admitting that I need to withdraw from putting my attention anywhere, but on the needs of my poor sick body. It's the least I can do for it.
If I should improve or have a reprieve, I be back at this  blog.

I want thank everyone for the good wishes, prayers and healing rituals. Those efforts are not lost in the bigger picture. Compassion never is lost, even if we don't see the result of our actions.

Friday, February 4, 2011

Laura Hillenbrand & CFS

There is a very good interview with Laura Hillenbrand, author of Seabiscuit and Unbroken, posted on the New York Times website. She very honest about her struggles.
Click here to read it.

I haven't been posting much. I am in a collapse, and my health care network has become a circus (except for my MD who is an angel), making it hard for me to get much help.

Saturday, January 1, 2011

The Past Two Months

I wrote a rather long story about the past two months. It's rather long. It's posted on my other blog. I am too exhausted to do 2 posts....

Happy New Year to everyone!

Monday, December 6, 2010

American Red Cross bans ME/CFS Patients from Donating Blood

Below is a copy of the press release from 12/3/2010:

American Red Cross Statement on XMRV and Chronic Fatigue Syndrome
National Headquarters
2025 E Street, N.W.
Washington, DC 20006

WASHINGTON, Friday, December 03, 2010 — At present, there are no specific federal recommendations regarding deferral of individuals with Chronic Fatigue Syndrome (CFS) or other diseases that have been associated with Murine Leukemia Virus-related virus (XMRV) infection. Nevertheless, in the interest of patient and donor safety, the American Red Cross will defer indefinitely any donor who reveals during the donor interview that they have been diagnosed with CFS.
XMRV infection has been associated in some studies with prostate cancer and chronic fatigue syndrome, but at the present time these disease associations have yet to be confirmed.
There is currently insufficient data to conclude that XMRV is transmitted through blood transfusion. However, the National Heart, Lung and Blood Institute (NHLBI) Task force is conducting research to determine the frequency of the virus in the donor population, whether it is transfusion-transmitted, and whether recipients become infected and develop the disease.
An AABB Interorganizational Task Force is charged with reviewing all available data, making recommendations for further action to assess the risk of XMRV transmission through blood transfusion, develop mitigation strategies as needed, and to provide information for blood donors, recipients and the public.
The AABB Taskforce released Association Bulletin #10-03 in June 2010, recommending that blood collecting organizations — through the use of donor education materials available at the donation site — actively discourage potential donors who have ever been diagnosed by a physician with chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (ME), from donating blood or blood components. In addition, any donor with symptoms of CFS would be deferred if, on the day of donation, they respond negatively to the question, "Are you feeling well today?"
The Red Cross has implemented the AABB recommendations and has gone further to implement indefinite deferral for donors who reveal a history of a medical diagnosis of CFS.
About the American Red Cross:
The American Red Cross shelters, feeds and provides emotional support to victims of disasters; supplies nearly half of the nation's blood; teaches lifesaving skills; provides international humanitarian aid; and supports military members and their families. The Red Cross is a charitable organization — not a government agency — and depends on volunteers and the generosity of the American public to perform its mission. For more information, please visit or join our blog at

Friday, October 8, 2010

Sometimes it's a Struggle

Right now, I am in a very low place with my illness and its process. In fact, this is the worst condition I have ever experienced since my initial collapse in 1979. I have developed a complication that, according to medical journals, is found only in post operative complications, or in the dying. There is no treatment, and everyday is a struggle with this life threatening complication.  For those who wonder what it is : paralytic illeus. My doctor believes it's neurological. This is not something I was prepared for... I didn't know it existed. It's taken over 1 year to determine that it is neurological. An administrator at the clinic where mt doctor works asked me, "How does it feel to be at the cutting edge of a new disease?" The question shocked me. My immediate response was to her was "Like hell."
New disease???? I've had it over 30 years!

Things have been made  more nightmarish by a type of insomnia that seems to be neurological. No amount of medication has allowed me to sleep. Part of the problem here may is that my reactions to chemicals (ingested and airborne) &  foods has changed suddenly, so I have to learn all over again how to deal with everything. Some examples: sedatives make me hyper. Yogurt gives me a migraine. Perfume closes off my airway. I have always had Multiple Chemical Sensitivities, but it's gone to a whole new level.

I have hesitated to share any of this, because I wanted the blog to be honest, but somewhat uplifting.

Toni Bernhard's new book, How to Be Sick is sitting beside me everyday.
I am reminded to be empty of expectations.
But, sometimes it's a struggle.

*Note: Toni's book is not just for Dharma students. It is helpful for anyone chronically ill, or those who love someone chronically ill.

Monday, September 20, 2010

Monday, August 23, 2010

Study Confirms CFS and XMRV Link

The National Academy of Sciences has released the results of a study confirming the link between Chronic Fatigue Syndrome and XMRV.
PDF located here.
This supports the findings released last year by the Whittmore Peterson Institute.