American Red Cross bans ME/CFS Patients from Donating Blood

Below is a copy of the press release from 12/3/2010:
http://www.redcross.org/portal/site/en/menuitem.94aae335470e233f6cf911df43181aa0/?vgnextoid=dc099a02fbcac210VgnVCM10000089f0870aRCRD&vgnextchannel=00a00628b1cde110VgnVCM10000089f0870aRCRD


American Red Cross Statement on XMRV and Chronic Fatigue Syndrome

National Headquarters
2025 E Street, N.W.
Washington, DC 20006
www.redcross.org

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 www.redcross.org or join our blog at http://blog.redcross.org.

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.

On my Other Blog

There are two posts you may enjoy:

The Blanket of Blessings & the Lama

The Ordinary: Connecting With Nature From Your Doorstep
(This post includes some photos I've taken.)

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.

A New Book: How to be Sick by Toni Bernhard

There's new book that will be published on September 1st. I'm excited about it. Buddha knows, I need all the ideas I can get as my body becomes more unmanageable....
How to Be Sick is by Toni Bernhard, a woman who became ill on a trip to Paris and never recovered. She has been diagnosed with CFS and she wrote the book from her bed.
Here are some of her links: 
Toni's website
Toni's face book page
Wisdom Publications is the publisher.

Domino Effect and a Really Bad Trip

      With ME/CFS, one setback can lead to several other problems. My body doesn't have any stability. I have continued to get sicker since my last post. I even had a nightmare episode were my husband took me to the ER. I won't go into the details of my symptoms at this point, but I will say that I did have a form of paralysis. The ER kept me there for 6 hours, did lots of blood tests and X-rays. The DR said , basically, "Yes, we can see what you are saying is true, but we don't have any way to help you. It doesn't appear to be a stroke." The nurse who checked me in was horrible. She closed the curtain and angrily informed me that I was wasting the ER's time. I pointed out that she hadn't read the intake form, and she was mistaking my condition for something else. She looked at the file, and then became very quiet. She never talked to me again, nor did she apologize. (I was fortunate that my husband witnessed this incident, or I might have questioned my mental state.) I haven't been in an ER for over 2 years... the last time was when my husband and I were run down by a car in a parking lot. I avoid ER's!
      Now there is an investigation into what happen that afternoon. The hospital administration was further upset when they discovered that I was released without treatment. (I have very good insurance, so this isn't a money issue.)
      I regret going to the ER and asking for help. One of the investigators asked me if I would be using their facility in the future. I replied: "When I am dead."

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.

Beauty in Nature

I grew up in an isolated area along the Canadian Border, in Northern New York. It was time when a time the land still talked to the people. Nature was my mother in many ways, and interacting with nature taught me invaluable lessons. She is both fierce and beautiful, but always awesome.
On my other blog, mythicmusing, I have been writing about my experiences with a numinous image: reindeer goddess. Due to my interest in reindeer, I discovered the story of baby Blue: he his the first wild reindeer born in England since the Ice Age and he was born on May Day.

photo by Adam Gerrard/SWNS





In prior posts I have told stories of my adventures in hummingbird triage and rescue.
A colleague of mine at Pacific Paranormal Investigations recently pointed out a hummingbird web cam to me; meet mother Phoebe and her hatch-lings Hope and Hoku.

I hope these images are as inspiring to you as they are to me.

Me, ME, and Vitamin D

I have been incapacitated for weeks. A friend of mine, artist Teresa Mill, came to visit me. She brought freshly cut roses from the garden. They smell heavenly! Thank you, Teresa!

The past 2 weeks have been very painful for me. I have spent many hours at my doctors office, on 2 separate visits. The first visit was preceded by the worst body aches I have ever had. I was actually crying. I didn't have a fever, and there didn't seem to be one thing that was causing the all-over excruciating joint, muscle and bone aches. My kidneys hurt, too. I had to be seen by nurse practitioner. He was very thorough, but he did say one of those things that make ME/CFS patient's blood pressure go sky high: "Sometimes we give pain patients anti-depressants and the pain just goes away." I said, "Look at my chart. I have been on nortryptaline (20 mgs a day) for 16 years! And I have tried them all!"
"True", he said, after reading the chart.
So he ordered many tests for things I've never heard of, and other things I've been tested for numerous times.
Three days after the Dr. visit, I discovered the culprit for the horrible body pains: vitamin D supplements. I stopped taking them because I felt so terribly sick. Three days later, most of the pain was gone. (Last month I was found to have a severe vitamin D deficiency with a level of 16. This is in spite of my diet containing foods with a daily intake of 100% of vitamin D. )
I had to go back to my Dr.'s. It turns out that because my body can't absorb the D, taking the supplements makes me very sick. It's part of a mal-absorption syndrome. My Dr. explained that my bones are at risk, and need D asap. Normally, your body absorbs D through sunlight. Due to having zero thyroid function, going out in direct sunlight causes me to have abscesses on the skin. (Did I mention I have very pale skin with no chance of tanning?)
The other tests showed that my pernicious anemia is alive and well. No wonder I feel sad and blue. I've also got a virus that attacks the vocal chords. I can't talk. I was told this will take 6-8 weeks to run it's course. Chances are, I was exposed to it at the clinic. Oh Joy!!
Now comes the task of experimenting with different supplements and food combinations. Fortunately, my husband works for a health food store. Oh- and he is a musician who plays the Blues... and plays it like he means it.

Quakes and Naps

This is Lilah. She is one of my daily companions, along with Thomas (a large Maine Coon).
I haven't been able to write much these days. I am feeling too achy-all-over. I feel downright poisoned. There's a few things going on with my blood results, but nothing that can be solved. I can't even sleep for any length of time, but that's just part of the ME/CFS experience. That's were Lilah comes in.... She's the Master Napcatcher. She naps all those naps I miss. Lucky Lilah!
Meanwhile, we are still having quakes every day, every hour since the 7.2 Easter quake. It still feels like I'm standing on a dock at the edge of the ocean. Maybe I'm just sea-sick?

Some moments I feel pretty sad. Other moments I count my blessings. Moment by moment...

Happy Orchid, Moving Earth & NOW

It's been 10 days since the Pacific Coast Quake. Since the 7.2 rocked the ground here, there has only been 5 hours of quake free activity. By Sunday 4/11, there had been over 3000 logged quakes. It's very edgy living with ground moving so much. For me, it feels like I am standing on a dock moving with the waves. My two furry buddies, Thomas & Lilah, have been very nervous cats. My hummingbirds and other bird friends have been very lethargic and quiet. Only the ravens are chattering, with the occasional hawk "scree" chiming in.

My orchid is very happy and just opened it's 6th bloom today. I know next to nothing about orchids, so I thought I'd check out the symbolism. It turns out that they are very temperamental to grow. They represent fertility, but also can symbolize the death of a child when the blooms are cut. They also symbolize abundance and luxury. On a deeper level, they symbolize purity and spiritual perfection (Chevalier & Gheerbrant/1994). It has cheered me up a bit to see the happy orchid in the morning.

At this time, my body is very achy and tired, day after day. The word for how I am getting through life is this: I feel like I am slogging through. Though I wake up in the morning with the idea I'd like to read something, or write something, or maybe DO something... the reality is that I am too tired after breakfast to keep moving. The next challenge is to shower. So, you see that I don't get very far.

The advantage to moving so very slow in life is that I get to see the process of the orchid blooming. I get hear the ravens talk, and what their different tones might mean. I get to watch the hummingbird babies grow up. And I get feel the earth move during quake clusters. I get to be here when my husband comes home from a long day at work. I answer the phone when my daughter calls.

I am here.
NOW.

Earthquake Experience

This is a re-post of my blog entry on mythic musing. I didn't start having physical symptoms BEFORE quakes, tsunamis & and volcanic eruptions until 2004.


Sunday, April 4, 2010
7.2 and a Cluster of Quakes
Last night I started having dizziness, headaches and a feeling of malaise. My ears felt plugged. I had a disturbing night, and felt terrible when I woke up. I told my husband that something was very wrong with me, but I didn't know what it was. I even felt disconnected from my body. We agreed that if it got any worse we would go to urgent care. Then I did something I rarely do: I went back to bed. I couldn't function! I dozed in and out all afternoon. I had earplugs in so I didn't have hear the neighborhood noises. Late in the afternoon I was alerted by a sound that was similar to wind chimes. I knew there are none nearby, so I ignored the sound. Then the bed started to shake. I realized we were having a quake, but this one wouldn't stop. I got out of bed and opened the bedroom door. My husband wasn't home... he had gone to the store. I heard the whole building CRACK. I ran outside to find all my neighbors outside as well. The shaking kept going on. When the ground stopped moving we all went back inside.
This quake was 130 miles away and it was a 7.2. We're still having aftershocks with different epicenters up and down the fault line that the original quake was on. This is the worst quake I've experienced and the first major quake in my local area since I became sensitive to quakes. To read more about these experiences click here and here. Trish & Rob MacGregor have written about others who are sensitive to earthquakes on their SYNCHRONICITY blog: click here and here.
Damage assessment is still in progress, and reports from the epicenter in Mexicali are just starting to come in.
I didn't see Reindeer Woman (which may signify an axis shift)-- unless you count the book Creations Heartbeat: Following the Reindeer Spirit, by Linda Schierse Leonard. It was in may mailbox late yesterday afternoon...

Orchid Thriving, Debra NOT

This orchid has been in my kitchen for 1 & 1/2 years. It started blooming recently.

Another visit to my doctor.... Nothing has improved since the last visit. In fact, things are worse in several ways:

1) Some of my muscles in my digestive tract are completely, permanently paralyzed, and there is no treatment. Combine the digestive problems with chronic functional hypoglycemia (low blood sugar) , and I am in a constant struggle to keep the body fueled. I am losing the battle with this.

2)I have also had more frequent, longer lasting, migraines than ever before. Bad enough to wear sunglasses at night, if house lights are on. Certain smells are intolerable.If anyone comes near me with perfume, I am immediately overwhelmed with dizziness and weakness. My eyesight is also effected my the migraines. Forget about cognition! Probably, my I.Q. has dropped by about 40 points!

3) My upper body muscles (head, neck, shoulder, arms, chest and upper back) are all in a Charley-horse type freeze. I can barely hold my own head up. My DR said,"Usually when the muscles get this bad we use steroids. But with your condition they may be too harsh."

4) I am in a prolonged cycle of insomnia, waking up *suddenly* every 20-160 minutes. Exhaustion has set in.

All the above amounts to this: for the first time since acquiring this illness in 1979, I've had to submit to a program of pain management. I have avoided pain meds all this time. But I can no longer function. This makes me feel like I've lost some kind of fight.

My Dr, her intern, my husband, and I spent our time together trying to work out a treatment plan. We even discussed medical marijuana

I am feeling very heavy-hearted at this point.

Thanks to the recent health care reform passed by Congress, the Senate and signed into law by President Obama, I will be able to go deeper into testing my body without fear of losing my health insurance coverage. This fear had limited how my Dr and I approached diagnostics and testing for my illness. My health care facility still isn't set up to test for XMRV, and I cannot afford to pay for the test out of pocket.($600- $800) The lab took 7 vials of blood for all the tests my doctor ordered. Now we wait.

Trying

I'm trying to get well enough to feel "normal sick" instead of wretched. Everything hurts. At least my orchid is thriving.

Hummingbird Visit

There is absolutely nothing to say about how miserable my body is. Day after day after day. *sigh*

So instead, I took a photo of one of the winged people that lives in the tree outside my front door. He buzzes me when I step out. He's a chipper fellow!

Compassion, Suffering, and Courage

"Compassion literally means to feel with, to suffer with.Everyone is capable of compassion, and yet everyone tends to avoid it because it's uncomfortable. And the avoidance produces psychic numbing -- resistance to experiencing our pain for the world and other beings." ~Joanna Macy

The above quote was on Lama Surya Das's Face book page. It's very relevant to me because I have noticed something painful in the course of being chronically ill. People turn away from my life because it causes them to feel depressed. Seeing my illness causes them suffering.

When I was caring for my terminally ill infant daughter (1993-1995), it was a rude awakening for me to see that people would rather not know her, because they considered it too painful to watch her life. Caring for my daughter Laryssa, loving her, meant accepting her exactly as she was without wishing her to be something else. Even some of the doctors in her life had problems with her condition, because they viewed her as a "non-viable life form" (their term). Anything but a human being. Everyday folk would say things like "Tsk tsk, what a waste." Seeing this, I vowed to consciously stay with suffering in others when the opportunity arose.

I once asked my precious lama, Lama  Gyatso "Why do they call this process enlightenment? It should be called endarkenment, because you can see everyone is suffering. You can't even walk on grass without killing a bug."

"Stay with this", he replied.

Even my beautiful compassionate Lama has died. He acquired hepatitis as a child in a refugee camp in India after escaping from Tibet. (He was a young boy and he witnessed most of his family being slaughtered.) I know he didn't turn away from witnessing suffering. I know he lived what he taught.

I pray I am brave enough to live what he taught.

Fun With Infections

Last week I blogged about my doctor's visit. While I was there she noticed a slight infection in my left ear. I didn't mention this in the post below, because it seemed insignificant at the time.
Yesterday I spent 2& 1/4 hours at Urgent Care. The antibiotics I had taken for one week didn't work. The infection has spread down the ear canal to my throat. It's hard for me to tell when I have bad an internal infection because I don't get fevers. My normal body temp is 96.7. Even when I've had pneumonia I don't get a fever. When I had H1N1 last spring, I didn't get a fever. Now I have antibiotic ear drops plus a stronger oral antibiotic. I had a horrible night with fever like sweats, chills and ear pounding. And nightmares! Antibiotics give me horrible nightmares! My dream life is crucial to me. It has always guided me. When my daughters were young, my dreams always warned me if they were sick, or having problems. My dreams tell me before a friend or family member dies. They also tell me when there is a pleasant surprise just around the corner. I don't like having my dreams messed with, especially by drugs.
On a positive note, I did have a good time on Friday evening. Read about it on my other blog mythicmusing.

A Visit With My Doctor

Today I went to see my doctor. She is an amazing and compassionate woman.
(To see the heartwarming story of synchronicity about how she came to be my doctor, click
here. This will take you a story posted on my other blog.)

Today's news has created another life changing challenge. My immune system has attacked yet another part of my body. The symptoms started last year, but I needed to go through a series of tests to see if it was going to be temporary, or permanent. I am so upset about the news that I am not sure how to even write about it. Now, some of the muscles in my digestive tract are paralyzed. This is not going to go away, and there aren't many options for treatment at this point.

Time for what my daughter calls "A Reality Adjustment".

I did give my doctor a paper about the Whittmore-Peterson Institute's findings on XMRV and it's possible connection to ME/CFIDS. She is going to start the process for her medical group to get patients tested for XMRV. I am so grateful to have a caring , compassionate doctor who listens.

The Art of Illness

Chained Angel 1, oil, acrylic, molding paste on canvas.

Above is painting I did in 1998/99. It's part of a diptych I did for a painting class. I did another painting along with this one, with the same theme: a chained angel. I will upload a photo of the other painting in the future.

The painting is an expression of how I feel in this body with this mess of entangled illnesses.
Blood and bone- rawness.
The wings are infinite possibilities, yet they cannot overcome the weight and immobility of the chains.
The sheer grief of knowing you will never actualize your own potential.
And so it is, while struggling with a wretched disease of the immune system.

It's been 11 years since the paintings, and I can no longer paint. My arms and upper body too weak, and the Sjogren's Syndrome has caused my eyesight to deteriorate.

All is not lost: I am struggling to blog and share. I hope to give others a voice-
a way of expressing their journey.

I am also fortunate: I recently was in a spate of griping and complaining.
"Everything hurts! My skin even hurts, my hair roots hurt. I ache."
My husband got very quiet
He looked at me very seriously... I shut up.
"You're still beautiful." he said, as he started the car.
My hero.

Neurological Problems with Intermittent Hail

It's Friday, late afternoon, in no-longer-sunny Southern California-land of San Diego. The storms have been non-stop since Tuesday. Last night and today we've had repeated episodes of peas-size hail with thunder and lightening. This morning the hail broke through my roof. As I was trying to get myself coordinated to call the roofers, property management and other HOA board members, I tripped & knocked over my portable oil heater. I landed on top of it. I've re-wounded my hip, wrist & lower back. All these areas were traumatized in 2008 when I was run over by a car (that's a story for another day!). My brain-body coordination has been challenged lately. The stress has caused my heart rhythm to be "off".

O the joy of it all!!!

I did rescue a poor kitty from the storm, and reunited her with her family today. How she knew to cry at my door, is a wonder to me! I hadn't met her before today.
Back to the afghan, couch, cats, and Vajra Guru mantra.

Migraine With Tornado Watches

Today is a "migraine with tornado watches" kind of day. We don't often have tornado watches here in Southern California.

The migraine has my brain scrambling : it's all confused over left and right. It's more on left, or the other left.

Of course, there is flooding on the property, and people need help, so I can't crawl in the closet with my afghan, like the national weather service recommends.

Oh well....

all around dysfunction

I was exposed to chemicals... new carpet.... and now my chest and lungs have been giving me a hard time. Not to mention the brain fog. This was 3 days ago, and I can't shake it. If this isn't bad enough, my computer has been malfunctioning as well. And the cell phone. I'm afraid to turn on the cable box! And now, back to the couch and my specially knitted afghan (by special and close friend Christine). *sigh*

The Virtue of Small Things

Being chronically sick has given me a chance to notice things that would have been missed in the rush of the 24/7 working world. For example, my front doorstep/patio has it's own little world. I live in suburb of a very large city, but my single story condo faces a small greenbelt . During the late winter, this area is populated with hundreds of hummingbirds on their way to and from North and South America. This also happens to be their mating season. Hummingbirds are very territorial, and will fight each other for access to food and mates.
The first winter after we moved in, I noticed that exhausted hummingbirds were dropping on my doorstep. Since I knew nothing about these tiny marvels, and I did not want them to die on my doorstep, I decided to learn what I could do to help them. I contacted a lady who works for the San Diego Zoo. She came to my home and gave me a crash course in hummingbird urgent care. Now, when I see a downed hummer, all I have to do is hold it gently, and put a dropper of nectar-water over it's beak. If you see downed hummer, it's because it is exhausted and has low blood sugar. If they don't get nectar, they slip into a coma and die. Hummingbirds are not afraid of humans.... they don't struggle when you pick them up. After they receive enough nectar, they will fly out of your hands, off to their next adventure.
The photo above is of me feeding a female (the males are brightly colored) hummingbird. The length of time it takes to revive a hummingbird depends on how depleted their blood sugar is. It can take a few minutes, or a few hours. It doesn't matter to me. All I have is time....

On my other blog

On my other blog I have posted a story you may enjoy: Once in a Blue Moon. Click here.