Hiatus

     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.

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.

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."

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

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.

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.

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.

Down But Not Completely Out

I have been too sick to leave my home since December 22. Too weak, too tired, etc...
In fact, there are some days that I get out of bed, eat breakfast-- and crash from exhaustion. Between the antibiotics and the infections I am fighting, I have problems standing up without being dizzy.

I did read a fantastic book today. Listening to the Rhino: Violence and Healing in a Scientific Age, by Jungian analyst Janet O. Dallet. It's as much about visionary healing as it is about the American shadow that is behind our nation's epidemic violence.
She makes a great case against certain classes of drugs that are misused.

Which brings me to this:

I am often asked why I resist taking all the drugs that have been prescribed to me, which include dextroamphetamines, and ergotamine (LSD),and myriad anti-depressants. I am chemically sensitive and have to be very, very careful what I breathe, or ingest.
Ultimately it is summed up well in this passage quoted by Dallett (page 125), from Huxley's Brave New World. The character Savage is speaking: "I don't want comfort, I want God, I want poetry, I want real danger, I want freedom, I want goodness. I want sin.....I claim the right to be unhappy."

Irony

I have been to Urgent Care this week and I am too sick with simultaneous infections (both viral and bacterial) to even write about being sick. :-(

Have you tried....

Often, when I explain my disabling condition to others, they immediately chime in with
"Have you tried _____________ ?". I understand that they think they are being helpful. Underneath the helpfulness is a common misconception: Somehow, by being chronically ill, I have failed. Failed to "accept healing", failed to "allow myself to be well", failed to "do what the Dr. tells me", failed to "find the right healer". Endless assumption of failure. In reality, my chronic illnesses is not a failure.

Especially in New Age circles, there is this idea that some one who is sick is somehow "giving themselves a lesson", they are "thinking the wrong thoughts", they are "not accepting THE LIGHT".
These ideas and assumptions of the sickness ( and death) as failures are actually toxic. They are of no value to the sick and the dying. These ideas allow people to ignore what really happening right here, right now. In other words this way of thinking is a form of avoidance of suffering.

There is a wonderful essay explianing these misconceptions entitled Spiritual Healing, Holistic Healing and the White Light Fascists by Caitlin MacKewen. It's in a book called Stricken: voices from the hidden epidemic of chronic fatigue syndrome by Peggy Munson. (I have it pictured in the Amazom.com sidebar here on this blog.)

In a future blog, I will list all the healing techniques I have tried in my journey toward wholeness.