May Awareness: Sharing Our Spoons by Celeste Cooper

Moving into the Month Of Spoonies

Did you know?

• Those who learn to live despite chronic illness or pain are called spoonies.
• May is awareness month for:

• Allergy
• Arthritis
• Chronic Fatigue Syndrome (ME/CFS, SEID)
• Ehlers-Danlos Syndrome (EDS)
• Fibromyalgia
•  Lyme’s Disease
•  Neuropathy
• Osteoporosis
• Systemic Lupus Erythematosus (SLE, Lupus)

ALLERGY– The role in immune dysfunction

Allergy may be coexistent with or aggravate many conditions. “Allergy symptoms are in response to an abnormal neurotransmitter, specifically, histamine.” (Cooper and Miller, 2010) 

Take the Health Central “Allergy Quiz”. 

ARTHRITIS

Arthritis is an umbrella term for many disorders that affect our joints. The most common type is osteoarthritis. Research is advancing what we know of about osteoarthritis.

See Health Central article "Arthritis Awareness Month: More than 100 Types of Arthritis and Related Diseases" by Lisa Emrich, Follow me, Celeste Cooper, Chronic Pain Health Pro and other "Health Guides and Pros" who walk the talk. Ask questions, comment, share your story. 

CHRONIC FATIGUE SYNDROME (ME/CFS/SEID)

Advances have been made in understanding the biology of ME/CFS.  Love it or hate it, and there are reasons for concern, the Institute of Medicine proposes a name change that addresses the most common component, systemic exertion intolerance disease (SEID). There is genuine concern that this name, while addressing a biological cause, may result in ignoring other biological changes that have been associated with ME/CFS. Many people educate and advocate for those of us with this dreadful disorder. You can find out who they are on my website here. 

EHLERS-DANLOS SYNDROME (EDS)

Ehlers-Danlos Syndrome is a genetic disease with several types under its umbrella. Characterized by joint hypermobility, skin elasticity, and connective tissue fragility, this disease results from atypical (unusual) proteins are responsible for the fragility of collagen, which is the glue for our tissue. Some patients with EDS also have fibromyalgia or are susceptible for developing myofascial pain syndrome. Read on. 

FIBROMYALGIA (FM)

We are learning more about fibromyalgia. Several researchers believe they are close to finding biomarkers, but the stigma lives on because of those who hold tight to the in ill-conceived notion that fibromyalgia is a psychosomatic disorder. In light of more recent research, how and why remains a mystery to me. But, as I always say, there is opportunity in adversity.

It’s possible that finding the answer to FM will unlock our understanding of other chronic pain disorders associated with pain (pain that is amplified by our brain’s perception). I have written many blogs on fibromyalgia; check out the archived blogs to the right listed according to month.

LYME’S DISEASE

“Lyme disease is caused by the spirochete bacterium, Borrelia burgdorferi. The infection is passed to humans by the bite of an infected tick carrying the microorganism. Symptoms include a “bull’s eye” rash at the site of the bite, malaise, fever, headache, muscle aches, and swollen lymph nodes. Untreated Lyme disease can result in symptoms occurring months or years after the initial exposure and causing damage to the heart, joints, and nerves of infected individuals. Symptoms can imitate other diseases and can be misdiagnosed.” (Cooper and Miller, 2010)   

It is very sad to say, but despite overwhelming evidencethat Chronic Lyme’s Disease  exists, there are those who doubt it.

OSTEOPOROSIS

Osteoporosis is diagnosed according to bone density tests. Poor bone density makes our bones fragile increasing fracture. A common complication of osteoporosis is hip fracture, and the mortality of hip fracture in the elderly is very high.  Watch a great overview of osteoporosis and prevention on Health Central. 

NEUROPATHY

“Neuropathy is any functional disturbance or pathological change in the peripheral nervous system; also used to denote nonspecific lesions, in contrast to inflammatory lesions.” (Cooper and Miller, 2010)

Neuropathy can be due to an array of medical conditions. It can also be idiopathic, meaning that the cause of symptoms is unknown. Read about neuropathic pain. 

SYSTEMIC LUPUS ERYTHEMATOSUS (SLE, Lupus)

Systemic Lupus Erythematosus is poorly understood and under researched. The cause is unknown. Often referred to as Lupus (not to be confused with discoid lupus), SLE affects predominately women, African Americans, Hispanics and Asians and is generally diagnosed between puberty and mid age. It is an inflammatory autoimmune disease that causes destruction of the body’s various connective tissues. Read on.  

You can learn more about Lupus in an article by Leslie Rott at Health Central, “Lupus is as Lupus Does”. 

BRINGING IN THE SPOONS

While we wait for such evidence, it is important to remember that regardless of our diagnosis, regardless of biomarkers, we are yet to find the cause or a cure for many immune or neuro-immune disorders. So, we must find ways to cope in a healthy way. You can find coping 

and management strategies on my website.

To all my fellow SPOONIES, thank you for sharing this journey. 

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate—Sharecare Fibromyalgia Health Expert

NEW Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. 

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Moving into the Month of Specific Spoonie Awareness by Celeste Cooper

As April 2014 ends, here is a recap for this month's awareness into conditions and methods of coping and re-energizing our body, mind, and spirit.

From Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, Spring Devotions

"No man is great enough or wise enough for any of us to surrender our destiny to. 

The only way in which anyone can lead us is to restore to us the belief in our own guidance."

~Henry Miller

Did you know that April is "Qi Gong Awareness"month? by Celeste Cooper

Looking Back at IBS by Celeste Cooper

April is Poetry Recognition Month by Celeste Cooper

As we prepare for one of the biggest awareness month, it's only fitting to share a short but important poem that will provide a bridge from April to May.

Pain Facts of an Advocate© by Celeste Cooper 

Fatigue challenges us,

Action defines us.

Collaboration empowers us,

Tenacity unveils us, 

Spirit enlightens us, 

Pain and illness unites “The Advocate”

Preparing for May...

Ribbon Colors for May Awareness:

• Autoimmune Rare Diseases - Black or orange
• Systemic lupus erythematosus (SLE) - orange
• Fibromyalgia (FM) - Purple
• Myalgic Encephalomyelitis/Chronic Fatigue (ME/CFS) - Blue
• Complex Regional Pain Syndrome (CRPS/RSD - Orange with yellow and red
• Ehler's Danlos Syndrome (EDS) - Blue with Black and white stripes on one side
• Chiari Malformation - Purple
• Arthritis - Navy blue
• Allergy 
• Asthma = Gray
• Food = Teal (I have seen varying colors)
• Allergy-sinusitis - I could not find one ribbon for this most important reaction to environmental triggers so I am going with true green to represent the color of common triggers.
• Lyme Disease - Lime Green
• Osteoporosis (OP) - Blue vs white
• Neuropathy - Purple

For everyone who knows what it's like to live with rare, autoimmune, or poorly understood conditions or disease , spoonies, my greatest hope is that you will take up arms by representing this vast community. Change your profile picture and feel free to use the spoon picture to spread the word for all who endure the many effects of chronic pain and illness. Make the choice to be visible. Support your organizations by sharing information, making a donation, encouraging others to make a donation, or offer up a few words of support. 


Whatever it is you have in your wheelhouse, USE IT!

~ • ~ • ~ • ~ • ~ • ~

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and author of books related to chronic pain and illness. You can read more about Celeste and her work on her Amazon Author Profile, here , or look to the right of this blog for direct links to her work.

May awareness for all neuro-endocrine-immune (NEI), rheumatic and autoimmune disorders.

(Updated, December 11, 2017)

May awareness for all neuro-endocrine-immune (NEI), rheumatic and autoimmune disorders.

“You can’t change what you don’t acknowledge”

~ Dr Phil McGraw

Raising awareness is instrumental for research funding, improved treatments, and patient outcome.  How many times have we wished there were answers?

Is it purely coincidence that some of the NEI, rheumatic/arthritic and autoimmune disorders/diseases overlap? That is the $100,000 question.  Let’s make May the month of home runs for all neuro-endocrine-immune, arthritic and autoimmune disorders by recognizing all of them, coming together as one community. It is possible that when we find the cause of one, we find the master key to many.

WHAT IS NEI?

What is a neuro-endocrine-immune disorder/disease (NEI/NEID)? It is an umbrella term that takes in several invisible or orphan disorders. These disorders are thought to be affected by the neurological, endocrine, and/or immune system.  Conditions that are frequently thought of as NEI disorders are: myalgic encephalomyelitis/chronic fatigue syndrome (Now known as ME/CFS), fibromyalgia syndrome (FM), Gulf War Syndrome (GWS), multiple chemical sensitivity (MCS), and chronic Lyme’s Disease . 

AWARENESS

May is also awareness month for all autoimmune disorders that can, in many cases do, co-occur with  NEI disorders, a double whammy and a two-fold opportunity for advocacy.  Autoimmune disorders to be considered for this particular blog (though there are many) include: 

Hashimoto’s thyroiditis,   rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), scleroderma, and ankylosing spondylitis (AS). 

Note: Multiple sclerosis is recognized in March, Sjögren’s and Spondylitis is April, and other conditions not listed here that fall under the same umbrella. 

Rheumatic conditions for May awareness:  

• Fibromyalgia (here) 
• Ehler’s Danlos Syndrome (EDS) (here)
• Osteoporosis (OP)
• Osteoarthritis (OA) (here)
• Rheumatoid arthritis (RA) (here)  
• Systemic lupus erythematosus (SLE) (here)  
• Ankylosing spondylitis (AS) (here)  
• Gout  

Though allergy is not classified as an NEI, autoimmune or rheumatic condition, it often overlaps with several of the disorders above. May is allergy awareness month.

ADVOCATE

“Snowflakes are one of nature’s most fragile things, 

but just look what they can do when they stick together.”

~Vista M. Kelly

Raising awareness requires participation by patients.  We have a duty to help others understand how any one of these disorders affects our lives. As an advocate, I am never certain where or how my words will be heard, but I can assure you, they reach further than I ever thought possible.  I personally understand we can’t be all things to all people, and we must make difficult decisions when it comes to prioritizing, but when possible please find an organization that has helped you. Your support can make a difference for all of us. Here are a couple of links on how to advocate (click on the title):

• Advocate (here)
• Sample Advocacy Letter (here)

A few organizations you can support (Recognizing those that have been instrumental in supporting my advocacy work).

• National Fibromyalgia and Chronic Pain Association (here)
• Missouri Regional Arthritis Centers (here)
• The American Academy of Integrative Pain Management (here)
• Pain Alliance to Implement a National Strategy (here)
• The U.S. Pain Foundation (here)
• International Pain Foundation (here)

There are a plethora of organizations that are at your fingertips, make May the month you do a little something extra, even if it is learning a bit more about your illness. Self awareness is the first step. 

Standing together, standing strong, committed to making a difference.

 In healing,,Celeste

"Adversity is only an obstacle if we fail to see opportunity."

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN

Author—Patient—Freelance Writer at Health Central & ProHealth —Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about Celeste’s books at her website or find links here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All blogs and comments are based on the author's opinions and are not meant to replace medical advice.