Showing posts with label invisible illness. Show all posts
Showing posts with label invisible illness. Show all posts

Monday, December 19, 2016

Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain This Winter


There is nothing charismatic about chronic pain regardless of its source. Pain and chronic illness are greedy and demanding. Either or both can consume our time, our relationships, and our function. Chronic pain and illness can rob us of our dignity if we let it. But, there are things we can do, perspectives we can make that prepare us for the untold side effects of living with daily pain and chronic invisible illness.

“Remember, no one can make you feel inferior
without your consent.”

~Eleanor Roosevelt

Day Twenty-three - Whole Heartedness

The winter season metaphorically offers time for our old thoughts and destructive behaviors to die off. The barren land of winter uses the season for rest, to lay sallow in preparation for the birth of spring. The books in the Broken Body, Wounded Spirit series allows us to go of old thoughts by offering  daily thought prompts, exercises, and words of inspiration, such as those in the above quote. Our readers are given tools to fight the ogre of doubt that plays on our fear, agony, loneliness, and resentment in the Winter Devotions edition.

Come with us as we walk the barren winter land, appreciating that it is necessary to rid ourselves of previous conceptions in preparation for the spring season of rebirth.



Read more about Broken Body, Wounded Spirit, Balancing the See-Saw of Chronic Pain: Winter Devotions by Celeste Cooper, RN and Jeff Miller, PhD on my website, Celeste Cooper.com. Follow me on Facebook, Google+, Twitter, Pintrest, and Linked-In. Other resources include:


Available in paperback on Amazon and Barnes and Noble, and Kindle. Also available in Canada and the UK.


In healing,,Celeste

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

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Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

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



Saturday, May 2, 2015

May Awareness Event for Fibromyalgia and Other Invisible Illnesses-An Interview with a Disability Attorney by Celeste Cooper



Each year in May I make an effort to do at least one interview to raise awareness for fibromyalgia and other invisible illness. This year I am the interviewer. I picked this topic for two reasons:

  1. I frequently see patient comments regarding denial of application for disability benefits.
  2. Anthony Castelli, Esq., attorney in Cincinnati, Ohio, was willing to give the interview to help patients understand the process.

 
Anthony Castelli
Attorney at Law
 







If you or a family member or friend has significant symptoms or disease that interferes with their ability to work, this is an hour you don’t want to miss.

Attorney Anthony Castelli has more than thirty years experience with:

  • Social Security Disability
  • Personal Injury
  • Worker’s Compensation
  • Wrongful Death


We discuss:

  • The difference between SSI and SSDI
  • Long-Term Disability Insurance and SSA disability
  • When to apply
  • How to apply
  • Turned down, now what? The Appeal Process
  • The benefits of having a disability attorney
  • How the attorney is paid
  • Primary doctor vs. Expert Witness
  • Engaging the primary doctor to write a report
  • The most important thing to remember
  • Resources


You can find the interview by following this link:

*Disclaimer: The time delay on my end is due to my internet connection being from a phone hotspot. I apologize for any inconvenience.


You can find more information:


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"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain ProAdvocate—Sharecare Fibromyalgia Health Expert

NEW Website: http://CelesteCooper.com


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


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Saturday, May 3, 2014

Advocates Respond to Dr. Drew Pinsky by Celeste Cooper


Having experienced:
  • horrific pain related to menstrual cycles
  • my first cystoscopy at age five
  • two surgeries for lysis of adhesions (cutting out scars that developed around my internal organs as a result on polycystic ovarian disease resulting in a total hysterectomy at age 35)
  • a bladder that is not only in pain, but also creates an environment for chronic infection 
  • vulvodynia and bowel problems that will last throughout my lifetime
  • treatments of  daily antibiotics, constant pelvic floor therapy, vaginal dilators to control internal trigger points and pain, and electrical stimulation in areas where it wouldn't seem right,


I believe I have the right to say I am disgusted that Dr. Drew Pinsky would suggest that interstitial cystitis is all in our heads. This is a learning experience for physicians to know when to hold their tongue.  As patients, we get it that no one person can know it all. So why didn't this egocentric physician reserve the right to refer to a specialist instead of blundering through a question he was ill prepared answer? Read on spoonies, you will see the need to advocate with an assertive voice

Please take a look at Dr. Drew & Loveline Crossed The Line, here


thesethree.com/Pain_Activist
My comments are as follows:

Dr. Drew is a BULLY! Those who use their power in the media spotlight should be held accountable for bullying behavior. There is exceptional gravity in this particular situation, because physicians take an oath to do no harm.

While Dr. Drew offers some good medical advice at times, manners such as his (and it's not the first I have witnessed from him) should speak to his credibility. Shouldn't he be held to the same standard expected from a patient? When healthcare providers behave this way, they lose the trust of the very people they THINK they are helping. What is Dr. Drew's goal? Is it improved patient outcome or has he let fame and his ego drain him of his capabilities to be objective?

His judgments are in direct contradiction to helping people in pain. Pain is not just a physical problem. It nags and threatens to destroy a patient's emotional, spiritual, social, and financial ability to live life in a meaningful way. Behavior such as that of Dr. Drew harms the patient and in some cases, contribute to the patient's demise. This is an example of how NOT to treat people. Making a bad situation worse, this physician touts himself as an addiction specialist. In my opinion, he has a very tainted point of view. His behavior is a disgrace to his peers who do treat their patients with dignity and respect. Actions such as his are everything we work against in our mission to change the way pain is perceived, judged, and treated, defined in the IOM report "Relieving Pain in America," a report from his PEERS! (Accessible here.)


When a physician tries to set as judge and jury regarding someone else's pain, they become part of the problem. Bullying physicians and healthcare providers need to get the heck out of Dodge.

This is not IC awareness month, but this blog speaks to everyone with painful and misunderstood conditions as we begin a power packed month for spoonies. (See "Moving into the Month of Spoonie Awareness," here.)


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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.

Celeste is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com



Sunday, August 18, 2013

Social Security Disability: Mastering the Red Tape When You have Invisible Illness

Scales of Justice

SSDI and Their Expert Witness

Make sure you doctor is documenting what you say in your medical record. 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?


Excerpt from Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain. Read more here.

The ALJ may request expert testimony from medical and vocational experts. These “experts” may or may not have firsthand knowledge of [FM, CFID, myofascial pain, systemic Lupus, RSD/CRPS, Lyme’s disease, GWS, or other invisible illness.]  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? Book excerpt  from “Approaching the System Systematically”

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. 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.

Here  is a link you might find helpful. http://www.ssa.gov/pubs/EN-05-10041.pdf

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 your illness is, the repercussions, other issues, and how they all come together to affect your ability to function. Educate them.

How do you make it through a day? 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 attorney. Let them see, make them see, what it is to walk a day in your shoes.

Even though you may have a SSA qualified illness, your application for SSDI benefits can turned down. They based their decision not on your diagnosis but on your ability to function, or more sadly, the lack of documentation.

If you have brainfog, get that neurocognitive exam.

My doctors 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. 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! 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 capped.

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.

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

 Final 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).



Other links you might find helpful:

From my website - When pain and disability is life limiting. The Seven Rules, here.

Social Security Application
http://www.socialsecurity.gov/applyfordisability/

SSA Listing of Impairments (Blue Book)

SSA Listing of Impairments Part A

SSA Listing of Impairments Part B (Childhood)

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

You can find the book at all major retailers. There is a synopsis on the book and links for purchase.  though it was written with specific patients in mind, 80% of the material can apply to anyone living with invisible illness.  In healing and hope, Celeste

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


Celeste's Website

Celeste's Website
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