Sneek a Peek into my journal & my HeART of Chronic Conditions (including life)

The best I can describe my “condition” is feeling like a sandy beach being worn away by unrelenting waves and occasional pounding storms.

Fibromyalgia/Chronic fatigue is said to not be life threatening only life altering,  Flares come and go, exhaustion is ever present.  Describing the pain is difficult but sharp pressure anywhere on my body hurts. I’m just reporting, not complaining, (although I’ve been known to moan & groan) .

A WHOLE HOLE, judy’s visual journal

I was blessed in my first forty plus years with relatively good health.  In 1995 that changed for me with the diagnosis of fibromyalgia/chronic fatigue.  I admit it’s been a struggle trying to ignore, over-ride or giving in to the daily fatigue, pain and various other “irritants”.  The older I get the harder it’s been.  

In public I look fine and only those who intimately know me would know if I were feeling exhausted, in pain or depressed.  When I’m feeling particularly bad no one knows as I shelter in place – stay home and lick my wounds.  Any contact, even a phone call, can feel overwhelming.  Weirdly, having to isolate at home during the pandemic has been a relief.

Black-eyed Anger, collage by judy

CURIOUStotheMAX blog has been my in-home companion:  A way to connect to the world and my incredibly understanding friends while expending minimal energy;  posts that remind me to eat better, be grateful, and most of all Peggy and her delightful drawings that make me smile.  

My Baha’i faith, above all, is what sustain me.   Even on my worst days my question is never “Why me?”.  I ask God for guidance, the wisdom to understand that guidance and the where-with-all to carry it out . . . one day at a time . . . sometimes one hour at a time.

The Eye of Grace, judy’s visual journal

I learned early on that each of us, in ways large and small, carry physical or emotional pain.  Each of us searches, longs for answers, respite and meaning.

Be generous in prosperity, and thankful in adversity.

Be worthy of the trust of thy neighbor, and look upon him with a bright and friendly face.

Be a treasure to the poor, an admonisher to the rich, an answerer of the cry of the needy, a preserver of the sanctity of thy pledge.”

The Baha’i World Faith)

Check out this way of giving – POUR for POVERTY

This post first appeared on MaxYourMind. Click here to see more 

Little Miss Muffett, no pain in her tuffet

Pain Remedy Pome

by judy

Little Miss Muffett

sat on a tuffet

Eating her curds and whey

Along came a spider

Injected inside her

medicating pain away

“I don’t hurt inside”

she happily cried

and threw her curds away

“No more aches and pains

or all manner of strains

the spider has made my day”

DSCN5899

Spider Venom May Hold Chemical Keys to New Painkillers

(to read the whole article the title above)

by KATE KELLAND

(Reuters) – “Scientists who analyzed countless chemicals in spider venom say they have identified seven compounds that block a key step in the body’s ability to pass pain signals to the brain.”

“In research they said could one day lead to a new class of potent painkillers, the scientists focused on 206 species of spider and searched for molecules in the venom that block nerve activity, particular via so-called “Nav1.7 channels”.”

“Experts estimate that as many as one in five people worldwide suffer from chronic pain and existing pain treatments often fail to give sufficient or long-term relief. Pain’s economic burden is also huge, with chronic pain estimated to cost $600 billion a year in the United States alone.”

“People sense pain in a part of their body when nerves from the affected area send signals to the brain through what is called the pain pathway, and it is this pathway scientists seek to disrupt when searching for potential new pain medicines.”

DSCN6012

Click here to read my other “tribute” to the Muffett Miss: 

No Rhyme nor Reason, Muffett & the Spider Pome

My Stress Checklist Reminder & widespread pain

Even when I’m spaced out in front of the TV, gardening, petting Max I’m stressed out. It’s important that I remind myself of that since stress has become my norm.

It’s easy  for me to forget that with a chronic medical condition(s) my body itself is the stressor.  Pain is a signal that something is wrong and tells all my systems to be on alert . . . 24/7

This is a comprehensive easy to read article on stress and provides an excellent reference.

http://www.helpguide.org/mental/stress_signs.htm

There is a check-list in the article.  I love check lists so of course took it.  Here are my surprising results:

Stress Warning Signs and Symptoms

Cognitive Symptoms

  • Memory problems  No problem, no memory.
  • Inability to concentrate I am a great multi-tasker
  • Poor judgment Posting this post
  • Seeing only the negative  I can barely see past my own nose.
  • Anxious or racing thoughts Never, I concentrate on relaxing
  • Constant worrying  “What me worry?” 

    Alfred E. Neuman

Emotional Symptoms 

  • Moodiness  Only when I’m moody
  • Irritability or short temper  I get  irritable when my temper is short.  
  • Agitation, inability to relax I try to relax all the time
  • Feeling overwhelmed This list is overwhelming
  • Sense of loneliness and isolation  I long for isolation . . .
  • Depression or general unhappiness Eh?

Physical Symptoms

  • Aches and pains  That’s what’s creating the stress in the first place.
  • Diarrhea or constipation  There are limits to my self disclosure.
  • Nausea, dizziness  Does ditsy count?
  • Chest pain, rapid heartbeat  No kidding!
  • Loss of sex drive  X-rated, no comment
  • Frequent colds Only my feet

Behavioral Symptoms

  • Sleeping too much or too little Much is more
  • Isolating yourself from others What other’s?  Remind me who they are.
  • Procrastinating or neglecting responsibilities Who me?, never! I’ll get to my paperwork . . . soon.
  • Using alcohol, cigarettes, or drugs to relax  My drug of choice is carbs
  • Nervous habits (e.g. nail biting, pacing) Shaking my foot
  • Eating more or less  More is more

This stress checklist has irritated me.  I’ll decide if I’m stressed after I eat some cake and relax .

Is Spirituality Connected to Pain and Suffering for You?

Walking with Max we passed a house decorated with hundreds of lights, candy canes and Charlie Brown Characters with huge stacks of gifts.  On the gate was a tiny sign that read “Happy Birthday Jesus”.

How and what, I wondered, did this family celebrate.  Many of my clients experience more pain, much suffering, emotional and physical, during the holidays than almost any other time of year.

The spiritual is lost in the longing for what they perceive is missing in their lives – that elusive dream or fantasy of how it should be.

I am NOT minimizing the loss experienced, remembering those who have died or left.  I have experienced the emotional “anniversary” “pain” of the death of loved ones. I am referring to the yearning for the picture in our mind of how we think it should be and the belief that “everyone else” is having that “Hallmark experience”.

Then I read a timely post from Carol D. Marsh at Chronic Pain and Spirituality Her blog is about spirituality, not religion.  As she says, “. . .pain and suffering are universal and so I take a universal approach”.  

I also believe that physical and emotional are so interrelated that whatever the origin of the pain, of the suffering Carol’s post applies.

Here’s an excerpt.   Tell me what YOU think:

“. . .  It’s a simple as this: when I am in pain, I do not care for theological arguments or doctrinal matters, I care about relieving, managing and living with the pain.
 
“. . . Here is how I see it: pain is the migraine – stabbing, pounding – and is physical; suffering is the contortions – worry, fear, despair – and is mental.
 
I have little or no control over migraine pain (behind that statement, there is a long saga of therapies tried, drugs taken, and alternative medicine explored), and that can lead to a sense of helplessness that is truly depressing. So there is something hopeful, something liberating in the knowledge that there is one area in which I have control: how I relate to the pain, or, how my mind thinks about it.
 
It’s the ancient Buddhist saying, pain is inevitable, suffering is optional. For those of us with chronic pain, the physical discomfort is inevitable. We are trying everything we can to alleviate it, and until something works for us, the hopeful news is we do not have to resign ourselves to being victims of it.
 
It is in our ability to choose to leave the egoic mind and turn toward Being that we become most fully and wonderfully human. Here we find what Jesus called, “the peace that passes all understanding.” (Philippians 4:7) And here is where I have found my most effective and healing pain management practice, in a calm of body and tranquility of mind that somehow miraculously reduces in significance the pain of my body, while eliminating the suffering of my mind.
 
” . . . Relieving the mind of thinking and emoting is about connecting to one’s essential Being. This is the journey to Wholeness that must take into account and include our body with its pain and our mind with its suffering. Perhaps that is the hidden blessing in chronic pain: it makes impossible the human tendency to split body and mind, thereby opening the door to our spirituality.”   Carol D. Marsh 
 

To read Carol’s post in it’s entirety click here: 

Chronic Pain and Spirituality 

“Men who suffer not, attain no perfection. The plant most pruned by the gardeners is that one which, when the summer comes, will have the most beautiful blossoms and the most abundant fruit…”
(Abdu’l-Bahá, Paris Talks, p. 50)


Scientists Find a Gene that Regulates Chronic Pain & A Link that T-Cells Play Key Role in MS.

When I was 8 years old I had no clue that one of the most significant findings of our times was made when James D. Watson and Francis Crick described the first correct double-helix model of DNA structure.  In my mid 30’s the sequence of a gene was unraveled.

Since then the understanding of the human body has developed at an astounding rate.  Here are excerpts from two articles in Reuters that I just read.  Hopefully these findings will benefit all of you who have touched my life while I’m still alive.  Here’s hoping!

Gene that Regulates Chronic Pain

 by Kate Kelland, Edited by Sitaraman Shankar

“What is exciting about the work on the HCN2 gene is that removing it — or blocking it pharmacologically — eliminates neuropathic pain without affecting normal acute pain,” McNaughton said in a statement about this work. “This finding could be very valuable clinically because normal pain sensation is essential for avoiding accidental damage.”

“Neuropathic pain, which is distinguished from inflammatory pain, is seen in patients with diabetes — a condition which affects an estimated 280 million people around the world — and as a painful after-effect of shingles and of chemotherapy in cancer patients. It is also a common factor in lower back pain and other chronic painful conditions.”

Read more from Reuters

Lymphocyte

A Link that T-Cells Play Key Role in MS.

By Kate Kelland

LONDON | Wed Aug 10, 2011 3:55pm EDT

(Reuters) -” Scientists have found 29 new genetic variants linked to multiple sclerosis (MS) and say the findings should help drugmakers focus treatment research on precise areas of the immune system.

In a study published in the journal Nature on Wednesday, researchers said the newly found links point to the idea that T-cells — a type of white blood cell responsible for mounting an immune response — and chemicals called interleukin play a key role in the development of the debilitating disease.”

Read more from Reuters

The Mystery of Chronic Pain & Hope

It’s a flip of the coin whether you will be affected by chronic pain (if it hasn’t already affected you).   This video is worth 8 minutes of your time to listen –
one of the clearest, most concise (and short) descriptions of how the brain-body registers pain AND the HOPE of remedy.
The Mystery of Chronic Pain

Elliot Krane, M.D., Pediatric anesthesiologist, Director of Pain Management Services at Lucile Packard Children’s Hospital at Stanford

“We think of pain as a symptom, but there are cases where the nervous system develops feedback loops and pain becomes a terrifying disease in itself. Starting with the story of a girl whose sprained wrist turned into a nightmare, Elliot Krane talks about the complex mystery of chronic pain, and reviews the facts we’re just learning about how it works and how to treat it.” TED

Current Statistics on Chronic Pain

An estimated 50 million Americans:
An estimated 50 million Americans suffer from persistent pain each year, according to the American Pain Foundation. Add two loved ones for every patient and the total number of people affected is at least 150 million Americans–50% of the population.
1 in 3 Americans:
1 in 3 Americans lose more than 20 hours of sleep each month due to pain, according to the American Alliance of Cancer Pain Initiatives (AACPI).
Headaches:
According to the National Headache Foundation, headaches are the most common type of pain. It is estimated that industry loses $50 billion per year due to absenteeism and medical expenses caused by headaches.
Pain:
Pain is the second leading cause of medically related work absenteeism, resulting in more than 50 million lost workdays each year, according to the American Pain Society.
Arthritis:
There are more than 100 forms of arthritis. Currently more than 33 million Americans have arthritis. Nearly 90% of all persons over age 40 show beginning signs of arthritis or rheumatism (Lawrence, R.C., Hochberg, MC, Kelsy J.L., Journal of Rheumatology 16, 427-441)
Women are less likely to receive treatment for pain than men
According to recent pain research by Hoffman and Tarzian ( “The Girl Who Cried Pain: A Bias Against Women In The Treatment of Pain” Law/ Med Ethics, 2001: 29:13-27), women are less likely to receive treatment for pain than men.
Caregivers:
Some 52 million informal and family caregivers provide care to people aged 20+ who are ill or disabled, according to the Department of Health and Human Services. Many caregivers consider pain to be an indication of the patient’s status.
Costs & Effects of Pain:
Pain costs an estimated $100 billion each year. Every day, 60% of men and women experience some pain (AACPI).
Elderly:
Of the community dwelling elderly, up to 50% can be expected to suffer from pain. Among institutionalized elderly 71% to 83% report at least one pain problem (L. Galieze, “Chronic Pain in Elderly People” Pain 1997 Mar., 70 (1): 3-14)
Social life:
Chronic pain not only causes physical discomfort, but also interferes with social relationships, family life and self-esteem. There is a high correlation between chronic pain and depression.