Upset with the CDC and misappropriation of funds, yet again?

Upset with the CDC, misappropriation of research funds, neglect in providing a replication study to the WPI and XMRV, and the oops we published this invalid study before the NIH study results (which does confirm the WPI and XMRV association with CFS/ME)? Advocates are now soliciting help from Erin Brockovich. Empowering! We will not be slam dunked again by the CDC.

I encourage everyone to PLEASE see the blog "Sample Advocacy Letter" posted in April.

There you will find and I hope you will contribute links for contacting government officials, worldwide.

"Though our bodies are weak our determination is unbreakable, standing tall, standing strong, standing united, committing to a cure."

Add this one to the list

http://www.brockovich.com/workcontact.html

Poem - "A Fall Homecoming at Horseshoe Park"

A Fall Homecoming at Horseshoe Park ©

Elk promenade streets of Estes Park,
They nibble quivering aspen’s tenderness.
On runway’s modeling racks to behold,
Blind to danger this wilderness dweller.

Though leery of man, in family tradition,
Fall’s decent from where trees greet tundra.
The magnificent graze in meadows of silk,
Swaying to their own reunion at Horseshoe Park.

Pure and sturdy, keeping a skeptical eye,
Dusk’s misty dew hazes as harems gather.
Buck’s circling females, bugling their mates,
And gold aspens give backdrop, scene one.

The novice youth lingers, as a matter of course,
But the senior, the voyeur, waits to pull rank.
The dance of defense won’t calm either stud,
But the sagest male’s patience claims victory.

The mating rehearsal, giving way to the play,
Strumming meadows provide a Broadway stage.
We lurk, crowded roadways, binoculars in hand,
How long, we ask, will the third act last?

Elks homecoming here at Horseshoe Park,
Applause in silence broken only by calls,
The bugling males harmonizing in the dark.
The curious watch, and the curtain falls.

The wonders of ritual at Horseshoe Park.

Written by Celeste Cooper, author

Creating an "I Am" Poem

Writing poetry of any kind begins with a spark that ignites feelings, encouraging them to provide light and insight by using our senses, our thoughts, our dreams and our imagination. Poetry is the conduit to your inner self, the one we live with everyday, but otherwise wouldn’t take the time to explore. I encourage you to use your imagination to create characteristics of “Who I Am.”

As a template start and end each line of your poem stanza (paragraph of sorts) with your I am line, then follow with the verbs provided below. Imagine yourself in a particular place, a certain situation, a role, an achievement, an illness etc., build your words from there.

After you do a rough draft, you can go back and change the words to convey your thoughts and feelings. This is free style poetry so you are not limited in your creation. It is totally up to you, as poetry is very personal and self revealing.

I wish I could find the author of this template, so I could thank them, but most of all give them credit. I found it by goggling but no one claims the origin. If anyone happens to know the author of this template, please share.

Following the template is one of my poems as an example.

I am…….

I wonder….

I hear…..

I see…..

I want….

I am….

I am….

I pretend….

I feel….

I touch….

I worry….

I cry….

I am…..

I am…..

I understand….

I say….

I dream…..

I try….

I hope…..

I am…..

I Am Tired not Weary ©

I am tired not weary,

I wonder if you see my pain?

I hear the thumping in my body,

The tunnel beckoning me to the light.

I seek the peace it promises,

I am tired not weary.

I strive to ski the slopes of life,

I feel lifted up by whiteness,

touching the light with my tongue.

I worry it will not last,

I deny the thought of darkness,

I am tired not weary.

I understand I must endure,

I say acceptance is the first step,

Imagining others will understand.

I try to get my point across,

I seek knowledge in truth,

I am tired not weary.

You can read more about how to write poetry, journal and much more in Integrative Therapies for Fibromyalgia,Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection.

(Signature line appended, March 2018)

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

“Listen closely; I hear the sweet sound of existence.”

Social Security Disability - Mastering the Red Tape

SSDI and Their Expert Witness

Make sure you doctor is documenting what you say in your medical record. My neuro of 25 years, put only, no changes. I developed a form, filled it out, reviewed it with him. He said, yes I know all this, but it is not new. I asked him if he would sign it and put it in my medical record. He did! Don't assume anything.

What the SSA wants to see is how illness affects your ability to function and with objective measurable criteria.

-What is your cognitive-neuro score? This is a grueling all day tests that measures
your cognitive deficit and is administered by a credentialed forensic specialist
psychologist.
-How does altered sleep interfere with your ability to copy with everyday things?
-How long does it take you to prepare for work?
-What is your life like at work?
-Is your work willing to make accommodations?
-Have you had to make adjustments to your work schedule in order to cope with the
pain and fatigue?
-What is your work record like, are you unable to make it many days, and if so, why?

The Social Security Administration's (SSA) own doctors said I should not do anything that requires repetitive long term motion of my upper extremities and hands, and that I should not stand or sit for prolonged periods. This was THEIR doctor. Yet in my denial letter they suggested I get a job as a "doll maker." Obviously the system is overloaded. Don't stop, file an appeal.

(Excerpt, please see copyright guideline)

The ALJ may request expert testimony from medical and vocational experts. These “experts” may or may not have firsthand knowledge of FM, CFID, or CMP. In my experience, finding a doctor who is aware of these conditions was difficult, so you can well imagine the knowledge base of the ALJ’s “expert witness.” The laws protect the claimant to some extent in that the ALJ must give more weight to the opinion of the claimant’s treating doctor than to the opinion resulting from a one-time medical exam requested by SSA or their team. However, the judge’s expert witnesses have more impact on the ALJ’s decision when the claimant’s physician has not adequately addressed and documented key issues in the claimant’s medical record. This is why it is so important to make sure your medical records reflect the continuing disabling effect of chronic pain.

WINNING A SSDI APPEAL

Getting Turned Down—What Next? excerpt from “Approaching the System Systematically” (copyright rules apply – See copyright in the discussion topics)

Your denial letter will most likely suggest you do some specific type of simple, sedentary work. The SSA gets their suggestions from the Dictionary of Occupational Titles and their suggestion may have little or no relevance to your claim. In my case, their own doctor told them I shouldn’t do any type of work that required repetitive hand motion. When they then suggested I get a part-time job as a doll-maker, I was quite sure they hadn’t really looked at my case with genuine concern(By the way, I use a voice-activated program to prepare most of my writing, which takes a great deal of time, compared to direct transcription. It’s not conducive to steady employment, but the finished product, regardless of the overwhelming amount of time it takes to prepare, is rewarding in other ways.)

If you disagree with the decision, you can request a review, called an “appeal.” There are certain guidelines for filing the appeal, so be sure to verify information with the Social Security Administration.
-End excerpts

IF YOU ARE IN APPEAL, you need a good attorney. I hear over and over again from people who lose at this stage, they are not happy with their legal representation. Your attorney needs to understand what FM, CFID, CMP or other issues are and how they affect your ability to function. Educate them.

How do you make it through a day with FM, CFID or CMP? How many hours to you have to care for the unpredictability of it all. Day by day, moment by moment we are held hostage by our symptoms.

Explain this in a daily diary, buy a calendar at the $1 store and document symptoms, treatments, medications, and whether or not they work. Photo it and get it into your medical record and give a copy to your atty too. Let them see, make them see, what it is to walk a day in your shoes.

A close family member has MS. Even though she had a SSA qualified illness, her application for SSDI benefits were turned down. They based their decision not on her diagnosis but on her ability to function, or more sadly, the lack of documentation.

If you have brainfog, get that neurocognitive exam.

My doctors, FP and neurologist, had witnessed my steady decline and their opinion does count. They saw me holding on to work by my fingernails. I did not go down easily. I cut my hours, changed gears, until I had to face the grim reality. SSA sure isn't RN pay, but it gets us by. The sad thing is because I had cut my hours back the last 3 years of the 5 year look back, my SSDI is not as much as it would have been otherwise. And, because I didn't have any extra money, I let my long term disability insurance lapse. But, hey, can't cry over spilt mild, we don't get do overs. The majority of us have stumbled down this road, quite literally. The SSA does take stock in what your personal doctors have to say. Make sure they say it.

If you lose at this level, don't give up! They would like nothing better than to break your will. Remember, get your documentation in order, and consider hiring another attorney if yours is unfamiliar with our illnesses. Most work on commission and their fee is topped by the USA, finally something in our favor.

"When defeat comes, accept it as a signal that your plans are not sound, rebuild those plans, and set sail once more toward your coveted goal."
--Napoleon Hill

Social Security Application

http://www.socialsecurity.gov/applyfordisability/

Fibromyalgia Residual Function Questionnaire

http://www.docstoc.com/docs/16448838/Fibromyalgia-Residual-Functional-Capacity-Questionnaire-_without

Good article on SSA disability process.
http://home-improvement-power.com/security/fibromyalgia-and-social-security-disability-benefit-payments

Lamb hugs to all on their journey; it is a winding road, hold on tight for a rough ride. At a time when I suggest focusing away from pain, you will be focusing on pain, it is the nature of this beast, and necessary for you to win either on initial application or appeal.

There is an entire section in the book devoted to SSA filing, documentation, what to expect, etc. The book has many documentation tools throughout to help you explain your condition and needs, painting a picture for your physician to help in his assessment. Using the forms will also get the information in your medical record. Make sure you physician puts the help sheets in your record where it belongs. It will help him/her save time and validate to the powers that be, why the treatments and medications are given, etc., and explain what it is like to be in your body.

Tips:-Always be truthful
-Document everything, even your conversations with SSA (you won't remember, but
they will)
-Explain what it is like on your worst day (I recommend having someone help you fill
out the paper work during these periods, as most likely you will not be able to. It
is human to dismiss how bad things are on a bad day when you are having a good one.
This is what your life is like, explain it in no uncertain terms, it is difficult
for those who do not experience our pain and fatigue to know what it is like).

Harvey Alter from the NIH supports/confirms the link between XMRV and CFS

Here is news that will knock your socks off. NIH expert, infection disease section, Harvey Alter supports/confirms the WPI link between XMRV and CFS. Now we wait for the published report. My two favorite words, Woo Hoo!

Follow the link to the article, Health Blog "Further Evidence of an XMRV-Chronic Fatigue Syndrome Connection?" written in The Wall Street Journal Health Blog on June 23, 2010.

http://blogs.wsj.com/health/2010/06/23/further-evidence-of-an-xmrv-chronic-fatigue-connection/

A bit about my journey

I didn't know what was wrong with me when I walked out of the hospital that last day, I only knew that my brain was slipping away and my ability to critically think, and important attribute of a registered nurse, was being held hostage by the unbearable pain and extreme fatigue. Insomnia and sleep deprivation reached the boiling point; putting the patients I so loved to care for at potential risk. I am grateful that I made the decision to exit stage left before anyone was injured, as emotionally painful as that decision was.

I had cut my work hours back to part time in the mid to late 90’s, and even before that I stepped away from the bedside by becoming an educator, but you see even that did not help with the pain and dysfunction. I had suffered several on the job injuries, part of the job description, and with each surgery, it became more difficult to recover. I spend those last 5 years or so juggling life so I could maintain health benefits for myself and my husband.

After I threw in the towel, not knowing at the time why, I was eventually diagnosed with fibromyalgia (FM) then two years later, chronic fatigue syndrome (CFID/ME). I then learned on my own that I had chronic pain from myofascial trigger points, even though I had injections previously for this, I did not understand what this all really meant, after all, my experience was as a hospital nurse.

I had experienced poor healing, sleep disruption, irritable bowel syndrome, migraine headaches, Raynaud’s disease, irritable bladder, osteopenia, gastric emptying delay, pyelonephritis, mononeucliosis, erosive gastritis, duodenal ulcer, osteoarthritis, chronic meralgia paresthetica, periformis syndrome, thoracic outlet syndrome, degenerative disc disease, shingles, joint hypermobility, levido reticularis, SICCA syndrome, several shoulder surgeries, knee surgery, a hysterectomy, several sinus surgeries, carpal tunnel, a rectocele repair and a hemorrhoidectomy. All of these gigantic puzzle pieces where in the box, but no one seemed interested in seeing the big picture. Finally, of all people a rheumatologist referred me to a neurologist that knew what it all meant. FIBROMYALGIA. Later I saw a different rheumatologist that diagnosed the chronic fatigue syndrome, but I am still not sure to this day, what criteria he used to make the diagnosis. Later I experienced irits of both eyes, (thought by the eye doctor to be related to some autoimmune disease, not yet diagnosed), and I found out after much insistence that I have Hashimoto’s Thyroiditis (an autoimmune disorder of the thyroid).

Dealing with any one of these issues by themselves is enough, but throw them into one existing person, me, became difficult to deal with, and it’s not over yet, but I keep hacking away one at a time.

After leaving work, I dealt with a great deal of depression, as I was used to being able to conquer anything thrown my way, until now. I was blessed to have crossed paths in life with my once therapist and now co-author, Jeff Miller, PhD. He offered many tools to help me deal with disability. I hated that word, but learned that though it is an obstacle, it does not define who I am as a person. I started journaling as a way of working through the grieving process, and boy was this ever one. The book started as an entry in my journal, and blossomed from there. Please read my blog on “Never Giving Up.” Determination is the mother of invention, I don’t remember who said that, but it is so true. I was, and continue to be determined not to let my illnesses destroy my ability to enjoy life’s pleasures. For me, I had to redefine what that was.

Redefining our life’s goals isn’t always easy, especially in the face of pain and fatigue, but I choose to look at the contributions of others who accomplished much. Vincent Van Gogh suffered horrible pain with migraines, yet he is one of the greatest artists that ever lived. Christopher Reeve overcame what some would say were insurmountable obstacles, but he did. He often said he found himself after his accident, a profound statement that I agree with. I had a choice, see the glass as half empty or half full. Choosing the later has altered the course of my being.

Though I may never reach that bucket of gold, total physical, mental, emotional, and spiritual balance, at the end of that rainbow, I am learning it is about the trolley ride over it, absorbing all I see as I reach the pinnacle.

My greatest desire is that when I am gone, people will say…. “She never gave in, she trusted God, she maintained forward momentum, and she always strived to pay it forward.”

Lamb hugs to all, and to all a good day.

Cervicogenic Migraines and Myofascial Trigger Points

Migraine headaches co-exist in both fibromyalgia (FM) and chronic fatigue syndrome (CFID), and can be a great factor in decreasing our pain threshold. It is like every nerve ending we have is fresh, raw and exposed. One more insult has us ready to explode.

Though we still don’t know for sure what causes migraine, we are learning. Cervicogenic migraine is a migraine attack that is perpetuated or preceded by neck pain. http://www.jaoa.org/cgi/content/full/105/4_suppl/16S For me, and I suspect many others, I can feel the golf ball starting to form on the right side of my neck at the base of my skull, and I can feel little pea size or smaller trigger points even up my scalp. (I do have significant cervical disease, but this is different, it is myofascial, in the muscle). Before long, a whole cascade of events begins and the once latent trigger points (those that can be felt but aren’t painful until pressure is applied) in my face develop into full blown active TrPs, ones that hurt and radiate pain seemingly without warning without even touching them. I can feel them with my fingers and when I apply pressure, this helps if I can get them to release. If treatment is successful, you can feel them relealse under your finger, and sometime can feel the tell tale local twitch response. Treating all of these TrPs can help with the attack. It is when I neglect treating them before this point that I am more likely to have this migraine, and the greater the neglect, usually the more intense the headache.

“A myofascial trigger point (TrP) is a self-sustaining, irritable area in the
muscle that can be felt as a nodule in a taut band. This irritated spot causes
the muscle to gradually shorten, interfering with the motion function of the
muscle and causing weakness and pain.” (Book excerpt)

Migraines alter my life, my ability to think rationally, and breakdown my defenses. My migraines always start behind my right eye, whether they start from weather changes, an oops with my diet, stress, or my myofascial TrP disease (which scientists now believe all fibromyalgia patients may have in addition to the body-wide centrally mediated tenderness). Usually, when my migraines switch to the left, I know it is on its way out. Rarely, but when the attack begins on the left, it isn’t as severe, nor does it last as long. Most of my refractory migraines are cervicogenic in nature, and I believe that is because of the number of neglected trigger points. This peripheral pain impulse to my brain, keeps it in perpetual wind-up, not allowing it to function as it should to send out natural endorphins and chemicals to counteract the original upset.

Books have been written regarding the myofascial trigger points and migraine. I am certainly not the first to write on the subject, and likely not to be the last.

• Mine, Celeste Cooper, Integrative Therapies for Fibromyalgia, Chronic Fatigue
Syndrome and Myofascial Pain
• Devin Starlanyl & Mary Copeland, Fibromyalgia & Chronic Myofascial Pain Syndrome
• Clair Davies, The Trigger Point Therapy Workbook
• Valarie DeLaune, Trigger Point Therapy for Headaches & Migraines
• Donna Finando, Trigger Point Self-Care Manual
• Hal Blatman, Art of Body Maintenance: The Winner’s Guide to Pain Relief

Migraine perpetuators related to myofascial trigger points

Bruxism is a fancy term for grinding teeth. This condition can aggravate facial trigger points, interfere with restorative sleep, cause teeth erosion, and, among other things, contribute to migraines. If you catch yourself grinding your teeth during the day, you most likely grind at night too, and according to my dentist, bruxism in sleep is four times more forceful. Is it any wonder that myofascial trigger points develop? Assistive devices, such as a nighttime mouth guard, can inhibit some of the pain associated with the disorder. Proper alignment, may abate the development of TMJ/TMD, but the force of bruxism can be a great contributor to the development and recurrence of TrPs in the face and jaw.

Temporomandibular dysfunction (TMD/TMJ), occurs when your chewing muscles are uncoordinated. This puts apposing muscles under undue stress and increases the occurrence of myofascial TrPs. Temporomandibular dysfunction is often associated with chronic muscular headaches and craniofacial pain. Pain can also extend to the ears, neck, and shoulders. Some people experience clicking and grinding noises during movement of the jaw, this limitation could be related to untreated or undertreated myofascial trigger points and pain that occurs anywhere there is muscle, including inside the mouth.

Poor posture and injury can also aggravate the neck and surrounding/supporting muscles, and trigger points in the neck can refer pain to the head and other places. (There are other topics here on my blog that explain how trigger points develop and cause pain and dysfunction).

Treatment

First find the TrP in the taut band of muscle. It may not be easy to do initially, it takes practice. If you can find a good myofascial therapist to help you, such as a chiropractor or physical therapist that does active release therapy (ART), http://www.activerelease.com/ or a myofascial trigger point therapist, http://www.myofascialtherapy.org/ to help you, and self treatment in between, you may be able to lessen your headache frequency or intensity if they are cervicogenic.

Wishing you all a migraine free day, lamb hugs, Celeste

Helpful links for understanding migraine
http://www.achenet.org/
http://www.webmd.com/migraines-headaches/news-features
http://headaches.about.com/od/internationalorgs/International_Headache_and_Migraine_Support_and_Advocacy.htm