The Upcoming Soul of Healing Summit

I am spending today recovering from an Independence Day picnic.  What did I do to get so worn out?  I left the house for 5 hours.  I talked to people I love.  I played a card game.  That’s all it takes, and I’m sidelined for the day.  The good news is that if I do nothing today and spend some time in bed, tomorrow I should be functional, or as a friend termed it, “up to my usual level of debility.”

I made the mistake of checking my email before turning my computer off (it’s in my bedroom) before a nap.  One email was the announcement for The Soul of Healing (online) Summit, and I just had to pass it on.  It runs July 11-18.

In June I accessed the FibroFix Summit.  It had a similar format with 31 speakers from a wide variety of fields on the subject of fibromyalgia.  I was overwhelmingly pleased with the choice of speakers and the content, learned so much, and gained sources I can mine for more information.  I felt really guilty about not passing it on in my blog, but was already overwhelmed by a recent health issue and was trying to keep up with listening to 4-5 hours of talks a day.  I finally gave up and ordered the talks.

To save myself time and energy, I will just direct you to http://www.nikigratrix.com  where you will find a link to more information.  One thing I learned from the FibroFix Summit is that childhood trauma is a prevalent characteristic of many sufferers of fibromyalgia.  I think that The Soul of Healing Summit will give me tools to work on that part of my recovery.

It costs nothing to listen the each day’s 5 talks during that day’s 24 hours.  But, I would suggest that if you suffer from a fatigue-related illness, you order the talks before the summit starts.  Plus, even with the lowest priced option you also have access to mp3s, mp4s, and pdfs of the talks and some very interesting bonus gifts.  As soon as the summit begins, the price goes up if you order the talks (e.g., $59 will become $99).

My job here is done.  Off to bed.

Plan Update

March is Autoimmune Disease Awareness Month

All month Dr. Amy Myers will be sharing articles about autoimmune disease on her blog (Amy Myers M.D.).  Of all the books I have examined so far, hers has been my favorite for its clarity.  I’m just getting acquainted with her blog, but trust that it will reflect that same quality.

Here are the books I am using to formulate a diet plan to eliminate symptoms of autoimmune disease (psoriatic arthritis). The last two have been added since my last post. There is currently research being conducted on several fronts concerning the connection between CFS/ME/ fibromyalgia and autoimmunity. I want to see also what effect the dietary changes have on post-exertion fatigue.  With the exception of the first book listed, all the books recommend diet, supplementation and lifestyle changes based on healing leaky gut and nourishing body systems damaged from years of autoimmune disease.  All of them have used this information to greatly improve autoimmune conditions in themselves and their patients.

Beating Chronic Fatigue, by Dr. Kristina Downing-Orr, 2010 (UK)

The Immune System Recovery Plan, by Susan Blum, M.D. (USA)

The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body, by Sarah Ballantyne, PhD (USA)

The Autoimmune Solution,  by Amy Myers, M.D. (USA)

The Wahls Protocol, by Terry L. Wahls, M.D. (USA)

I am crazy busy since starting the Autoimmune Protocol (AIP) diet on March 1.  Since it requires that I use no processed foods, the food prep has occupied a larger part of my day.  I decided to begin the diet even though I am still working my way through some of the books I recommended in my last post, as well as adding two.  I believe I have a sufficient understanding of the science behind the diet, as well as the dietary requirements, to begin.  And, well, I need to get started.  Considering I experienced my first symptoms 42 years ago, it may take several years before I feel the full effect of a healthier body.  The upside to that is that I can enjoy improvement along the way.

Understand that I am going against my nature in beginning before I have laid the ground work.  For good or for bad, I am a linear thinker.  My tendency is to begin at the beginning and work toward the end.  Jumping in in the middle feels unnatural.  You say I lack spontaneity?  And your point is……?

So far, I am able to stay on the diet, and am finding it quite satisfying.  In December, when I began a failed attempt to follow the AIP diet I was basically following a low-carb diet, finding that it was best at controlling my weight without requiring me to go hungry.  My comfort foods were mostly dairy, sweetened with artificial sweeteners.  I have a history of being very sensitive to sugar.  A single serving of dessert will leave me with a severe headache.  More than that, and it turns into the headache from hell.  With such exquisite motivation, swearing off sugar was pretty easy.  And, pulling away from sugar many many times over the years, I discovered that it takes only 3 days without sugar before I no longer felt its addictive pull.

In December, I thought “I can do this.  I’m the person who spent the last half of the 1990’s eating no carbohydrates.”  Carbs caused an immediate reaction in the form of Irritable Bowel Syndrome (IBS), or as a friend termed it, “Grouchy Gut”.  But, that was another time and place.  At that time I was attending college full-time and living with a friend who was very health-conscious.  He was in charge of buying and preparing the food.  I was happily distracted by my classes, and just ate what I could of what was prepared.

Fast-forward to today.  I spend most days by myself, shop for and prepare all the food, and  live with a junk food junky.  When I first moved in 7 years ago, I gained 8 pounds from sampling the goodies available.  My December attempt was a bust after 3 days.  I missed my familiar foods, especially my comfort food.  Eliminating dairy, eggs, all grains, tomatoes, peppers, and all artificial sweeteners was just too big a bite.

On February 1, I decided to take a first step.  In 1992 I had gone to a doctor treating CFS with diet and vitamin-mineral infusions.  He did an Elisa test, a blood test that indicates food sensitivities.  My top offenders, in order of greatest sensitivity, were cheese, all other dairy, sugar, wheat, and brown rice.  This seemed like the logical place to start, so I eliminated these, including that spoon of ice cream (my favorite food) that I ate while dishing up my husband’s dessert. In addition, I decided to continue to use Stevia with the intent of tapering off to little or nothing as my taste adjusts.

I think that approaching a diet as restrictive as the AIP in steps may be the only way some of us can do it.  In addition, this approach is recommended by some of the author-MDs whose books I’m suggesting.

 

A New Year, A New Plan

I know it sounds hokey. At least I didn’t call it a resolution. It’s just that I’ve been waiting for Thanksgiving, Christmas, and my daughter’s 2-week visit from Arizona to get out of the way before I could get on with my plan.

Christmas 2014 was really hard on me. Since we have the largest house (at least for a while) and my mother-in-law a few years ago at the age of 98 said she could no longer host the family at Christmas, I volunteered.

Actually Christmas has been on my hate list since my children were young (40 years ago!). I like the idea of Christmas, and I enjoy the gatherings, but the work involved has always been more than I could handle and keep smiling. But, 2014 did me in. Afterwards, I couldn’t leave the house for 3 weeks, then for another 3 weeks when I did go out to do routine errands, I would come home sick with fatigue. I had to say I couldn’t do Christmas in 2015, even though it meant my mother-in-law, now 101, would choose to have it at her house.  (Of course, she felt good enough 2 days later to entertain for dinner).  We all helped with making food, and the adult grandchildren cleaned up after dinner.

All that info is just background for saying that I never fully recovered from Christmas 2014.  The past year I have had to shorten the amount of time I spend on errands and socializing with friends, while still coming home feeling more exhausted than I would have the year before.  I am fortunate to still be able to do my own housework, but now I have to work for shorter periods, trying do just a small amount each day.  I know some of my readers would be happy to have that much capability.  But, this is where I live, and I want to lose as little of my life as possible.

My husband has been tutoring me in doing as little as possible.  He’s quite good at it, a fact that I found quite irritating as a young parent.  But, he has a point.  I need to be more selective about where I spend my energy.  I put it to use this Christmas; it was absolutely luxurious.  There were days when I had to think hard to find anything I needed to do!

After dealing with CFS and FM for 42 years and, more recently, psoriatic arthritis (an autoimmune condition), I’m not foolish enough to believe I will be cured.  I just want to regain some of the energy I’ve lost, minimize my symptoms, and avoid sliding into greater disability as I age.  I’ve recently come across three books that offer insight into how I might improve my health.  I think that these, along with careful analysis of my own experience, will allow me to formulate a long-term plan for healing.

The plan is still in the works, but I will share the books here:

Beating Chronic Fatigue, by Dr. Kristina Downing-Orr, 2010 (UK)

The Immune System Recovery Plan, by Susan Blum, M.D. (USA)

The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body, by Sarah Ballantyne, PhD (USA)

I will discuss each of these briefly in a future post.  But for now, enough work for me, and probably enough reading for you.

My best to you..

 

Indecision

Indecision

leaves me holding

Nothing

in a world of

Somethings

Kicking myself for being surrounded by things I truly want to do…and having a little energy and time to do them…but not being able to decide which one I should do.  Time disappears.

 

Edited Out

Edited Out

He said

people

were tired

of poems

about divorce.

If so, why

are there still

no words

for all

the broken pieces?

Put Yourself In The Way of Beauty

From the movie Wild:

“There’s a sunrise and a sunset every day and you can choose to be there for it.  You can put yourself in the way of beauty.”

My Poetry

It’s a bit of a stretch, since “my poetry” consists of about 15 entries written for a single poetry workshop in 1996.  I loved it and got some decent feedback.  I concluded that I could become a decent poet if I worked at it.  I soon realized that the making of poetry is a full-time job.  Images, relationships, and wonderful strings of sounds tantalized me at all hours of the day.  As I lay trying to sleep at night, I found myself turning on the light to make notes for a poem.  It was all too much to handle with CFS and FM.  I had to concentrate on earning my degree, then getting a job.

Today isn’t much different.  Getting decent sleep is still a problem; turning off my brain is the main challenge.  I am still trying to keep up with housekeeping, shopping, laundry, and a bit of cooking.  Then there are all those other things I want to do.  Making jewelry is a good compromise. It’s creative, and I can leave the studio and not be preoccupied by the unfinished project.  When I’m ready, it’s there for me to resume.

For what it’s worth, here’s one of my poems.  (After considerable frustration trying to get it to display with the proper formatting, I still couldn’t find out how to get it single spaced.  If you know how to do that in the free version of WordPress, please let me know.  Now when I posted it, I also see I’ve lost my fancy indentations.  How in the world do I do this?)

Reality of a 50^th Birthday

I gave away

my years

like campaign buttons

at a

presidential convention

exchanged the brightly colored

plastic disks for

smiles

warm handshakes

belief I was a winner

Nameless acts collecting

at backs of

drawers

of those whose

names I now forget

and some I’d rather

not remember

Today

I would gather

tiny grains of careless time

blown by

others’ urgency

build a castle

safe from

the tide

of “I want”

“I need”

I wanted

loyalty

a barrier

against loneliness

a dream of sharing

turned nightmare of

exhausted self-surrender

I offered

gifts of time

the wood and nails

of life together

now stolen away

to build with

someone else

My life

buried with parents

grown distant with children

exited by friends

and spouse

I count

the coinage of the

coming years

hold it in one hand

know it is mine

to give

to keep

to use

know it has

no value

but to me

Super Soul Sunday Starts September 27, 2015 on OWN

Oprah And Michael Singer Talking About Fear Of Change

For the past month I have been feeding on reruns of past Super Soul Sundays with Oprah Winfrey. These insightful interviews with some of today’s foremost spiritual thinkers are so rich I will be digesting them for years to come.
Thanks, Oprah, for introducing me to Eckhart Tolle, Maryanne Williamson, Mark Nepo, Richard Rohr, Michael Pollan, Gary Zuckav, and Don Miguel Ruiz as well as some of my favorites. I can hardly wait to see what she has in store for us this season.

Doctors!

My doctors don’t seem to know what to do with Chronic Fatigue Syndrome

One of the major frustrations of my life is over finding a doctor who actually treats CFS/ME and Fibromyalgia (FM).  When I was looking for a new rheumatologist after I moved to my present area, I wanted find one that would not only treat my psoriatic arthritis (PsA), but also my fibromyalgia.  I was told by the appointment receptionist that Dr. W. was the one doctor in the multi-doctor clinic who “specialized” in FM.  After 2 years with him, I’m still trying to understand how he does that when he refuses to prescribe anything for IBS or sleep difficulties, both symptoms of FM.

Getting a doctor to respond to CFS/ME concerns is even harder.  No one wants to claim the nebulous condition.  Both my rheumatologist and my primary care physician (PCP) don’t object when I mention it, but they get very quiet.  I’m imagining they are thinking “Just let the crazy lady talk.”  To the credit of my PCP, he has been helpful in prescribing for my CFS/ME and FM symptoms.

If you search online, you will find that the CDC, WHO, Mayo Clinic and Cleveland Clinic all appear to accept these conditions as valid and recommend treatments for symptoms.

The Mayo Clinic states (http://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/basics/symptoms/con-20022009):  Chronic fatigue syndrome has eight official signs and symptoms, plus the central symptom that gives the condition its name:

• Fatigue
• Loss of memory or concentration
• Sore throat
• Enlarged lymph nodes in your neck or armpits
• Unexplained muscle pain
• Pain that moves from one joint to another without swelling or redness
• Headache of a new type, pattern or severity
• Unrefreshing sleep
• Extreme exhaustion lasting more than 24 hours after physical or mental exercise

I experience all these symptoms except sore throat, enlarged lymph nodes, and, I might add, the low immunity to infection that I know others suffer.  My immune system seems to be out of whack in another way, attacking itself with autoimmune arthritis.

Sometime in the next few months I plan to be moving about 40 miles away to an area with a Cleveland Clinic facility, but I cannot find in their directory a single CCF rheumatologist or immunologist who claim to treat CFS, and only one who claims to treat FM.

While I wish that there was more comprehensive care available, the situation has improved.  I experienced my first symptoms of CFS in 1975 at age 27 when I found that some of my more strenuous activities took such a severe and lengthy toll on me that I had to discontinue them.  Fatigue, muscle pain, and IBS continued, though my symptoms seemed too vague to take to a doctor.  Around 1980, I sought out a doctor.  He examined me and ran tests, and when he found nothing, he told me I was just a bored housewife and I should go get a job.  This discouraged me for another 5 years, when I went through a battery of tests at Cleveland Clinic (CCF).  The result was the same; this time they recommended biofeedback.

It was then that I turned to M.D.s practicing alternative medicine.  I found that the cocktail of vitamin supplements that they gave as an IV helped me maintain a somewhat normal life, but, even with insurance covering some of the services, it was very expensive.  And I didn’t experience a “cure” as they seemed to promise.  I did finally get a diagnosis of FM from an immunologist at CCF in 1990, but no treatment was recommended. I’ve never found anyone to diagnose me for CFS.

In 2010 I came across a book in the library: The Bowersox Protocol for Fibromyalgia and Chronic Fatigue by Harold Bowersox.  In it, he documented his success using homeopathy.  His office was 50 miles from my home, so I began treatment with him for the next 4 months.  $1000 out of pocket and exhausted from the 100 mile drives…..nothing.

This has all brought me to realize that there will be no cure.  And I’m really okay with that.  I’ve developed a philosophy – a theology actually.  I believe in an involved creator and sustainer of all life.  The creator is incapable of evil; evil is merely a lack of connection with spirit.  With this in mind, I receive all things as good.  What is left for me is to live my life with as much faith, courage, and creativity as I can.

Commitment

“The difference between involvement and commitment is like ham and eggs.  The chicken is involved; the pig is committed.”   – Martina Navratilova

I am realizing that this blog thing is going to take some COMMITMENT.  I am really good at keeping my commitments – to everyone else.  I was a conscientious mother and wife, a top-notch student, and a productive employee.  When someone is expecting something from me, I deliver.  This is not true when I make promises to myself.  Then it’s distraction, impatience, and “I can always do it later.”

But, in this case, there’s YOU (however few or many YOU might be).  YOU are a tool that I can use to get me off my duff.  So, I’m committing myself to publish a blog post every Monday, even if it’s just a photo or a quote and comment, although I have higher hopes than that.  But, today I have already frittered away valuable time on Facebook (more about my sentiments on FB later).  It’s 3:45 p.m. and I still have to lie down and recharge for an hour before supper time.  What’s more, it’s a beautiful day – 72F; a soft breeze is rustling through the trees; the birds are singing, the hummingbirds are dogfighting over the nectar feeders.  In another month such a day will be just a memory in Northern Ohio.

I have composed many a blog that has never made it into print, since I spend a lot of time in bed not being able to sleep.  I COMMIT to spending time during the next week gathering and taking some photos – I find the blogs with photos to be more interesting – and drafting next Monday’s post.  I also desperately need to just spend time learning how to make my blog more inviting.  Wish me luck!