Saturday, May 11, 2013

Looking Back and Planning Forward: Invisible pain and illness

Looking Back

First I look back. Since last May I have posted over 50 blogs from "Are Your Power Lines Down: Sensitivity of Neuro-Endocrine-Immune Disorders," (here),  "Is your butterfly dead: your thyroid and you?"(here),  and "100 MILLION Americans Suffer from Untreated Pain: Does your healthcare provider have the knowledge base required to treat you at all?" (here)  to "Fibromyalgianess is ALL in Our Head? My Correspondence with Dr Frederick Wolfe." (here). 

I answered  over 90 fibromyalgia questions as Sharecare expert, (here).  including a monumental question #300 “How do I handle other people's reactions to my fibromyalgia?”  (here).

I was privileged to have articles published such as, "How to Write an “I AM” Poem in the Fibromyalgia and ChronicPain Life  (a National Fibromyalgia and Chronic Pain Association magazine),  “New Canadian Guidelines for Treating Fibromyalgia,” published at the National Pain Report, (here),  and "Could Fibromyalgia Be Labeled as a Psychiatric Illness?" the National Pain Report, (here).

Recently I did two interview with Cinda Crawford on the Health Matters Show on fibromyalgia and chronic fatigue syndrome, and awareness and advocacy for all comorbid disorders and how to identify helpful strategies for coping with pain and other symptoms. (here)

I have been blessed that others such as you have shared what I see as helpful information for educating ourselves on our illnesses.  And I recognize those who have been particularly helpful in my Facebook note: Standing on the shoulders of giants - Thank you for your support, (here). 

Looking forward

It will be interesting to see how far advocacy will take all of us in the chronic pain and invisible illness community. I hope you will join me in supporting organizations and individuals that share their own time, talent and treasures as we look forward to what the next twelve months will do to raise awareness for chronic pain and invisible illness. 

You can help by re-sharing information from organizations and independent bloggers that promote awareness and support. If others see us get excited, they may join in. We never know how far the sharing can go. In today’s social media the sky is literally the limit.

I hope you will use your talent by dropping names and standing together on important topics.

Research has come a very long way, but “miles to go before we sleep,” quite literally for many of us. I have been thrilled by some research and disappointed by others.

There has been a great deal of debate of the validity and ethical implications of the American Psychiatric Association, DSM-5 classification of somatic symptom disorder. Here is the hope, there are those in powerful positions who are working hard to try to see that the DSM-5 is completely eliminated from the World Health Organization ICD codes, which are used to help with diagnosis, tracking data, proposing research and much more. This is an important article I want to share with you. Huffington Post on Somatic Symptom Disorder, (here).

Personally, I have been struggling with how to conserve energy and still contribute effectively and efficiently. The conclusion is that my responsibilities as author and educator, volunteer work, being a guest blogger and publishing articles for raising awareness are of greatest priority. Therefore, on Facebook, I  am asking friends and others mutual goals to stay connected on my new page. (here)  I encourage you to also evaluate your strengths and weaknesses, we all have them, in an effort to re-prioritize..

Remember, we are never alone in our plight. If you feel isolated or are in despair, I sincerely hope you will pick up one of our books,  which you can access from the right side of this blog or visit my website

I look forward to a fruitful year by continuing my advocacy work, collaborating, learning new ways to deal with my own personal struggles, and to use my energy wisely for education and review of the research. 

"In our every deliberation, we must consider the impact of our decisions 
on the next seven generations."
~Iroquois Maxim (circa 1700-1800)

In healing and hope, Celeste

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