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Monday, October 20, 2014

Chronic Migraine, Chronic Smiles… REALLY? by Celeste Cooper


I am picking myself up off the floor and sharing my angst so I can let it go.

I saw the neurologist today. He said because I reported fewer than 3-5/week while on vacation in Colorado (very few barometric pressure changes, less stress, and no humidity), I wouldn't meet the continuous 6 months requirement for Medicare for trying Botox. I started with this doctor about 2 years ago because my neurologist of 25 years retired. I thought that maybe someone younger would have something new to offer.

When I filled out ALL that initial paperwork, I told him my migraines and facial pain and tics are 3-6/week. In all this time, all he has done is start me on Xanaflex and slowly up the dose. I have told him repeatedly that Xanaflex helps with the fibro pain and sleep but NOT the migraines. I was on 32 mg/day until I started passing out. I not only passed out cold two times, I had to be in a wheelchair for my mammogram because my B/P was 80/50. Per the pharmacist and HIS nurse, I started titrating down. His only comment was that on my last visit I was all smiles. REALLY?

Wouldn't we all smile if we have a day without pain? I live with other pain every day, and I have found a way to smile my way through it, even the migraines. After all, no one appreciates a downer, or so I thought. In fact, in all my books, I suggest forcing a smile because research tells us that natural endorphins are still released. Shouldn’t a NEUROlogist know this? Should I be admonished for trying to cope in a positive way?

It makes me question, what is going into my medical record? Will he note that I had on sunglasses today because of photosensitivity, or that my medication only brought my migraine down to a 5? He should talk to my husband because every day I have a migraine, I tell him or apologize for being short, his response, “What’s new, you have a headache every day.”
 

To say I am frustrated in an understatement. I am on day 12 of 13 with either a migraine or facial pain so intense it is triggering one. My nose runs only on the right side (and yes, my GP ruled out sinus involvement over a year ago). If I refuse the steroids (to break the pain cycle) even though I told him, I don't tolerate them well and they GIVE me a migraine. Or the Depakote he now wants to add to the Xanaflex (even though I gave him a list of all the things I have tried and I don't tolerate anti-seizure drugs because they make me feel too disconnected), I will be labeled as non-compliant. I feel like it has become a battle of the wills, and his will wins out. Despite my reservations of following this regimen, I will try it. I am putty in his hands, because I am desperate.

Why will he refuse to accept that I am NOT responding to Xanaflex and overall my migraines are 3-5 times/week, so I can explore other options? When I tried to show him my Migraine Tracker, he was not only disinterested; he seemed put-off by it. He stated twice, just average it out. So why can’t he AVERAGE IT OUT?

To all my fellow PAIN WARRIORS, do not think for one minute that I do not understand what you go through. All I can say is, I am so sorry. I have feelers out to find a neurologist that understands and treats chronic headache. They are out there. I just haven’t found the right one yet.

Forlorn, confused and in tears, and needless to say, my migraine has not improved either. Thank you for listening.


In healing and hope, Celeste

Wednesday, October 15, 2014

Free copy of Broken Body, Wounded Spirit: Balancing the SeeSaw of Chronic Pain, Fall Devotions EBook by Celeste Cooper, RN and Jeff Miller, PhD, Sunday, October 19th and Monday, October 20th.


On Sunday October 19, 2014, download a free Kindle Ebook copy of FALL DEVOTIONS (Revised 2014). It is one in the Broken Body, Wounded Spirit: Balancing the SeeSaw of Chronic Pain four book series. Ranked #1 in its genre during the initial launch.


It will be available:

Sunday, the 19th, at 12:00 AM (Pacific Time)
To Monday, the 20th, 11:59 PM (Pacific Time)

For our US readers (Pacific Time, here.
For our UK readers (Pacific Time), here.
For our Canadian readers (Pacific Time), here.


We sincerely appreciate the loyalty of our readers and we hope you will share this token of our appreciation with others. Let us know what you think of the revised edition by leaving a review on the same page where you downloaded the book. Just scroll down the page and click on the button


If you don't have a Kindle, you can download an app for your device(s), here

Paperback version available on Amazon, here
and on Barnes and Nobel, here

Be sure to access other free information on Celeste’s website. http://TheseThree.com 

Other books in the series rated #1 during the launch:

Broken Body, Wounded Spirit: Balancing the SeeSaw of Chronic Pain, WINTER DEVOTIONS
Find it at Amazon, here
Find it at Barnes and Nobel, here

Broken Body, Wounded Spirit: Balancing the SeeSaw of Chronic Pain, SPRING DEVOTIONS
Find it at Amazon, here
Find it at Barnes and Nobel, here

Broken Body, Wounded Spirit: Balancing the SeeSaw of Chronic Pain, SUMMER DEVOTIONS with five star seal from Readers Favorite.
Find it at Amazon, here
Find it at Barnes and Nobel, here


Also written by Celeste and Jeff:

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind body Connection.

Find it at Amazon, here.
Find it at Barnes and Nobel, here.
Nook Book, here


Sunday, October 12, 2014

Accepting Your Limitations, Exploring Your Talents by Celeste Cooper


Those of us who live with chronic pain and illness understand that we should respect our limitations. But, it is equally important to stay energetic. There are many ways to be energetic, full of life in thinking, present in our compassion for others, active in mindfulness, and more. Looking at things from this perspective helps us broaden the boundaries of not too much, yet enough. It allows us, gives us, permission to explore our hidden talents.

We discuss all these things and more in Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, Fall Devotions.

Follow Your Passion


It is easy to become passionate about people we admire or things we love.


Fall Devotions, Day Forty-eight

I love:

Having a positive role model.
Nature.
The grandeur of a mountain.
A good cup of herbal tea.
A stream that speaks.
Birds that sing.
Sharing information with people.
Having a network.
A path less traveled.
...





Start an "I love" list on one of the empty spots in this book, see where it takes you, you will be pleased. (See "Day Seventy-five,” and find more exercises throughout the Broken Body, Wounded Spirit… series.)

I love…


The   2014 Revised Fall Devotions is now available, here  and for Kindle, here.
Barnes and Nobel, here.
United Kingdom, here
Canada, here.
A promotional download for the Kindle version will be coming soon. 

Watch for it.

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN



Saturday, October 4, 2014

Costs Associated with Fibromyalgia: What’s Up with That? by Celeste Cooper


"When I was young I thought that money was the most important thing in life; 
now that I am old I know that it is."
~Oscar Wilde



How one answers the question, "What are the Costs Associated to FM?" depends on who you ask. Treating fibromyalgia is a costly business because often times it takes years for the right diagnosis. Patients will return for medical care until they get the answers they need. Why does it take so long to be diagnosed? Many care providers are unaware of other conditions that co-occur more frequently with fibromyalgia, and therefore, those conditions go unnoticed and untreated and the patient experiences unnecessary pain and fatigue from a wound up brain trying to process many messages at once.

Side Note: We need consistent diagnostic criteria such as that I reported on in my blog, The 2013 Alternative Criteria Dr. Robert Bennett, et al. – Interpretation for patients and providers by Celeste Cooper, here. Also shared on ProHealth here.

Ask the patient about the cost of having fibromyalgia. Most of the therapies found to be helpful, warm water therapy, acupuncture, acupressure, myofascial release, massage therapy, therapeutic trigger point massage therapy (for comorbid myofascial pain syndrome), T'ai Chi, Yoga, and other complimentary and alternative therapies are not covered by insurance, and if they are, they are capped. This means that most of the treatments suggested will never happen unless the patient has an endless supply of money.

Take a look at the latest Pain Action Alliance to Implementa National Strategy  policy brief NEVER ONLY OPIOIDS: The Imperative for Early Integration of Non-pharmacological Approaches and Practitioners in the Treatment of Patients with Pain accessible from my website here

We know that fibromyalgia patients need ongoing care, particularly since we have other painful comorbid conditions. The alternative diagnostic criteria by Bennett, et al, are comprehensive and can easily guide the diagnostician to the right conclusion (see side note above). If we can get integrative therapies moved to mainstream medicine, the overall cost to everyone will go down and the patient will have a better outcome.

You can also find my answer here  to What are the monetary costs associated with fibromyalgia? Don’t miss the hundreds of other questions answered by Celeste and others on Sharecare.com here.

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN




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

Friday, September 26, 2014

Pain Awareness Month Draws to a Close - A Recap by Celeste Cooper


September is a busy month for me as advocate, author, educator, and as a person living with chronic pain and illness. It is the month to raise awareness for the other 100,000+ million Americans, and countless others around the globe. And to hopefully change attitudes of discrimination and judgment that threatens our self worth. A time to fight for proper treatments that result in improved outcome.

The Sun is located on the vernal equinox, daylight and dark are equal, and autumn begins. For me, fall marks a time not only to advocate, but to educate my comrades in pain through my blog and through Fall Devotions in our Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain seasonal book series. Personally, I celebrate fall with an annual weekend get together with my healthcare colleagues. We have done this for over thirty years and I have only missed once. To say I embrace our need for socialization, regardless of obstacles, is an understatement. And when I need reminders on how to care for myself, those who share this trek with me, many who are our readers, wrap me in their virtual loving arms.


“Come along, it is time to begin our journey as we walk through the beautiful falling leaves that fill our path with color and diversity. Be prepared to kick up new ideas that come from this season grabbing at those of personal interest, those that entice you to learn more. Decorate your life with vast opportunities that autumn offers. Feel the crisp clean air as it fills you up, and prepare for the bounty you will soon discover.”
Excerpt from the introduction to Fall Devotions.



This is a season of time and energy which threatens to drain me because of chronic migraine and spinal disease, which flare FM and CFS and the autoimmune comorbid disorders I endure. But fear not, it is also a season of vigorous collaboration. The rewards of being a catalyst, a change agent, cannot  be measured. The value is found in humankind giving reason to advocate and educate. Here are the blogs written by me this September.


I am continually lifted up no matter how bleak one day may seem, because there is another in the past or the future that is sure to adjust my perspective.

“I cherish my friends because we stand together 
heading in the same direction.”



Go in strength my friends.



~ • ~ • ~ • ~ • ~ • ~


"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN



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

Tuesday, September 23, 2014

Free Kindle Download of Fall Devotions in the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain Series is coming Soon


Fall is here, but the "revised edition" of Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, FALL DEVOTIONS has not cleared the editor’s desk just yet. When that happens, we will offer a free download for the Kindle EBook version. The latest version has expanded information on some topics and room to take notes (the later being something our readers asked to have. 

Stay Tuned




Most Helpful Customer Reviews

Very helpful By Cecily T. on November 20, 2012
Format: Kindle Edition
I already bought the earlier book, "Integrative Therapies for Fibromyalgia, Chronic Fatigue and Myofascial Pain", so I got this on the recommendation of my pain specialist. It's nicely done and very helpful. The authors give suggestions, assignments and advice on a page per day basis. I like the format because I can focus on one thing at a time to help myself with my chronic pain condition. I can also go back and review information and rate my progress. I think this is a good tool for participating in my treatment

Helps add new perspective to each day! By Amazon Customer on January 7, 2013
Format: Kindle Edition
This is a great book, simple and effective! When you live in pain it's easy for the world to seem like it's falling apart. Waking up each morning in pain doesn't really help your focus, other than focusing on the pain itself and then building our day around the pain. It seems that we forget about all of the life that is going on around us and what it has to offer. This book is a reminder of all that life has to offer when you're losing focus. The book is well-written and easy to read. +1 for anyone needing help with kickstarting their days.

A good addition to your fibro library By Daily Reader on January 7, 2013
Format: Kindle Edition
Fibromyalgia is a multi-systemic disease that requires a mutli-faceted approach to treatment. This book is a wonderful addition to any fibro library, because it allows the fibro patient to take control of their own health. And the more you can do for yourself, the better you generally will do. Kevin White, MD, PhD Award-Winning Author of Breaking Thru the Fibro Fog: Scientific Proof Fibromyalgia Is Real

Great Book!!! By AKR on January 8, 2013
Format: Kindle Edition
This book was very informative and helped me in so many ways as i am living with chronic pain. I am so thankful for the help this book has given me and I look forward to the next book. Thank you!!

Inspiring !! By Ronda Blacker on November 20, 2012
Format: Paperback Verified Purchase
This is an "uplifting" book that is well written. I even followed the author's suggestion and wrote my own poem !


Read more about Celeste here.


Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, WINTER DEVOTIONS. ImPress Media, 2013, available in worldwide markets.
Amazon in paperback, here
Kindle version, here
Amazon UK, here
Amazon Canada, here
Barnes and Nobel here


Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, SUMMER DEVOTIONS. ImPress Media, 2013, available in worldwide markets.
Amazon in paperback, here
Kindle version here
Amazon UK here
Amazon Canada here
Barnes and Nobel here


Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, SPRING DEVOTIONS. ImPress Media, 2013, available in worldwide markets.
Amazon in paperback, here
Kindle version here
Amazon UK here
Amazon Canada here
Barnes and Nobel here


Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. (Vermont: Healing Arts Press, 2010).
Available from Inner Traditions: Healing Arts Press here and in all major online retail stores.
Amazon in paperback here
Kindle version here
Amazon UK here
Amazon Canada here
Barnes and Nobel here

Nook Book here

Celeste's Website

Celeste's Website
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