Setback

        Sometime last week (Thursday night?) I awoke to horrific abdominal pain..... so much pain that I could not tell where it was coming from.  I soon found out that I had an ulcerative erosion in the upper intestine. Two years ago, after several tests, it was discovered that my entire stomach lining was eroded: erosive gastritis. My Dr. said that it could possibly be that my immune system was attacking my stomach lining. (To me, this was obvious because of my prior diagnoses of interstitial cystitis and ulcerative colitis.)
       To further complicate matters, the required diet for this crisis is clear  liquids. This diet does nothing to address my functional hypoglycemia: chronic low blood sugar. With low blood sugar, you can't simply eat sugar. You have to eat things that metabolize slowly, like whole grains and proteins. When your blood sugar is in the 60's, or lower, you basically can't function. It's like putting your computer in "safe mode". You are very limited in cognition, perception and energy.  So I did the only thing I could do:   I just laid around our 750 square-foot home in a fog. Occasionally I noticed cobwebs and dust bunnies that I  do not have the energy to clean. Maybe I should name them...
     Somewhere in the lost time and fog of doing nothing, I have sprained my left thumb. I am starting to eat whole foods today. I hope this episode ends soon.

Original Press Release from the Netherlands: FDA and NIH confirm 'XMRV findings'

Below is a full copy of the original press release:

Gendringen, NL (MMD Newswire) June 22, 2010 -- The FDA and the NIH have independently confirmed the XMRV findings as published in Science, October last. This confirmation was issued by Dr. Harvey Alter of the NIH during a closed workshop on blood transfusion held on May 26-27 in Zagreb. Two journalists from the Dutch magazine for health professionals, ORTHO, who have been working on XMRV stories for several months, were able to obtain a copy of the Alter lecture.
In the October 8, 2009 issue of Science Express, the Lombardi-Mikovits group at the Whittemore Peterson Institute (WPI), the Cleveland Clinic and the National Cancer Institute (NCI) reported that 67% of 101 chronic fatigue syndrome (CFS) patients tested positive for infection with xenotropic murine retrovirus (XMRV). Only 3.7% of 218 healthy subjects tested were positive for this gammaretrovirus. Since that time, a number of research groups have proved unable to independently confirm these findings.
On Friday last, the AABB released an Association Bulletin recommending that its member blood collectors actively discourage potential donors who have been diagnosed with CFS from donating blood or blood components. This interim measure was proposed by the AABB Interorganizational Task Force on XMRV. This Task Force includes representatives from several government agencies, including the Center for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA) and the National Institutes of Health (NIH).
The fact that the measure was introduced suggests the presence of information not yet published. The ORTHO journalists were able to obtain a pdf document of the lecture given by Harvey Alter at the IPFA/PEI 17th Workshop on 'Surveillance and screening of Blood Borne Pathogens' in Zagreb. The International Plasma Fractionation Association (IPFA) represents the not-for-profit organizations around the world involved in plasma fractionation. The IPFA is based in Amsterdam, the Netherlands.
The highly-experienced Dr. Harvey Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. "The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy", was one comment on the XMRV findings reported by Alter in Zagreb. "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings."
ORTHO contacted Dr. Harvey Alter today for a reaction. He did not want to comment, but confirmed that a paper is soon to be published.

ORTHO is a Dutch magazine for health professionals focusing on nutrition and dietary supplements. ORTHO has been publishing reports on CFS since 1988. Editor-in-chief: Gert E. Schuitemaker (PhD). Tel: + 31 (0) 315 695211 / + 49 (0) 170 808 9484. E-mail: ortho@orthoeurope.com.
http://www.mmdnewswire.com/xmrv-9040.html

FDA and NIH confirm 'XMRV' Findings.

 See Hillary Johnson's website:
http://www.oslersweb.com/

Today:

Original Press Release from the Netherlands: FDA and NIH confirm 'XMRV findings'

http://www.mmdnewswire.com/xmrv-9040.html

Infinity Chained

This is another of my paintings: Chained Angel II. I painted  it at the same time I painted Chained Angel I, below . I painted them side-by-side, using the same color palette  ( I wrote a little about Chained Angel I earlier on this blog : The Art of Illness.)
       Chained Angel II has the horse head nebula as her dress, and deep space as her wings. Yet- she is enchained deep in a cavern inside the Earth.  How can space and infinity be chained??? For me, this is a description of living with ME/CFS.
         Having a mind that wants to explore  the world around me and a body that can't even make it to the parking lot is a paradox. Embodying  a heart that desires interaction with other cultures & other peoples in a body that is chronically exhausted is.....well... frustrating.
         A case in point is this past Friday. I was not doing well already, but my daughter & her boyfriend were taking us to lunch to celebrate Father's Day. This is a rare occaisions due to everyone's work schedules, and my health. We all went, and we all had a nice time, though I couldn't eat. 
               Later that night was the first get together for the newly re-formed Pacific Paranormal Investigations. We all love being together. The chemistry feeds our souls. My husband & I spent 6 wonderful hours with these fascinationg and caring people around a fire. We all talked about things we are passionate about.  By yesterday , late morning,  I had crashed. Complete adrenal exhaustion. Everything hurts. No more that 2 hours sleep. My kidneys are inflamed, my joints are inflamed, it hurts to breathe, my brain is foggy..... I could go on, but I won't. I am in a complete breakdown.  I only spent time with people I love, sitting only (no dancing, walking, moving around)..... and yet the cost was very high. I'm still paying.

Another Urgent Care Day

I have been groggy, dizzy, head-achy and have blood draining out my right ear. My body temp is usually 96.7. Today it's 98.2. Diagnosis: Viral Labyrinthitis.... a virus is attacking my right inner ear. What makes this even more distressing is the  fact that it could become a permanent condition. This is the way the other permanent conditions started for me. Now I have to wait and see.
Oh, and we're still having quakes, both aftershocks from the 7.2 Easter quake, and new ones from other fault lines. Quakes also affect my inner ear.

*sigh*
I think I'll go lay down....

UPDATE: we had 5.9 quake approximately 55 miles from our home, after I posted this.

Tending The Body

   The amount time I spend taking care my body leaves me with very little time to do much else. If I am not tending the body, I am recovering from the exertion of having tended it. There are days were I wonder if this is to be, in the end, the total of my life. I know there are days where I am asked "What did you do today?" and my answer is "I took care of my body".

    "She spent the whole of her life tending to her body", a statement I imagine someone could say after I die. That doesn't appear to be a productive way to live. I have no choice in the matter. The loudest voice in my life is the cry of my body and its systemic complications.

    To find meaning in in this condition, I turned to spirituality. There arose yet another struggle: modern spirituality is NOT body based! You are supposed to be striving for heaven, or Nirvana, and you are NOT allowed to bring your body with you!  You end up, on this non-body-based journey, looking everywhere outside yourself to find the kingdom of heaven, or god, or enlightenment, or samadhi.  The "new age" philosophies often regard illness and death as a complete failure. "You don't really want to be well or you would be", says one well known "new age" healer. Or a well meaning "spiritual" friend who says "Why did you give yourself this illness?" Then there's the "spiritual counselor" who asks "What is the pay off for remaining sick?" The sad thing here is the "spiritual persons" just mentioned have completely immersed themselves in delusional thinking. True spirituality includes the very conditions you are in right now. You cannot escape your body, and achieve spiritual wholeness. Your body is your vehicle. That being the case , we need to work with spiritual principles that include our body, as it is. Each of us who bears an illness such as this has a right to demand a body-based philosophy from their spirituality. To believe any other way does not contribute to wholeness.
 To tend the body IS to tend the soul, the spirit, the mind-stream.