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.
Thursday, May 5, 2011
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.
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....
http://mythicmusing.blogspot.com/2010/12/alchemically-speaking-past-two-months.html
Happy New Year to everyone!
http://mythicmusing.blogspot.com/2010/12/alchemically-speaking-past-two-months.html
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:
http://www.redcross.org/portal/site/en/menuitem.94aae335470e233f6cf911df43181aa0/?vgnextoid=dc099a02fbcac210VgnVCM10000089f0870aRCRD&vgnextchannel=00a00628b1cde110VgnVCM10000089f0870aRCRD
American Red Cross Statement on XMRV and Chronic Fatigue Syndrome
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.
http://www.redcross.org/portal/site/en/menuitem.94aae335470e233f6cf911df43181aa0/?vgnextoid=dc099a02fbcac210VgnVCM10000089f0870aRCRD&vgnextchannel=00a00628b1cde110VgnVCM10000089f0870aRCRD
American Red Cross Statement on XMRV and Chronic Fatigue Syndrome
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.
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.
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
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.)
The Blanket of Blessings & the Lama
The Ordinary: Connecting With Nature From Your Doorstep
(This post includes some photos I've taken.)
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.
PDF located here.
This supports the findings released last year by the Whittmore Peterson Institute.
Monday, August 16, 2010
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.
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.
Monday, July 26, 2010
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."
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."
Tuesday, June 29, 2010
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.
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.
Wednesday, June 23, 2010
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
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
Tuesday, June 22, 2010
FDA and NIH confirm 'XMRV' Findings.
See Hillary Johnson's website:
http://www.oslersweb.com/
Today:
http://www.oslersweb.com/
Today:
Original Press Release from the Netherlands: FDA and NIH confirm 'XMRV findings'
http://www.mmdnewswire.com/xmrv-9040.htmlSunday, June 20, 2010
Infinity Chained
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.
Monday, June 14, 2010
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.
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.
Tuesday, June 8, 2010
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.
"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.
Tuesday, May 18, 2010
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.
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.
Friday, May 7, 2010
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.
Thursday, April 22, 2010
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...
Tuesday, April 13, 2010
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.
Monday, April 5, 2010
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...
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...
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