Draft Report on Pain Management Best Practices | HHS.gov — Patient Responses Are Needed!

Responses are needed from both the medical community and patients/caregivers that have had experience with opioids for pain relief.

The Department of Health and Human Services is making a request for comment on the ‘Draft Report, proposes updates to best practices and recommendations for pain management, including chronic and acute pain’.

While everyone knows that there is certainly an illicit (illegal) drug crisis, patients and the medical community have been especially affected by this crackdown–and because of it, some patients have been taking drastic—and deadly—measures to get relief from their pain, and some doctors have lost their careers.

It’s up to us to be the voice for patients by standing up to the government, and finally stopping this insanity. Let them know that opioids–when taken under the care of a licensed physician–is beneficial for pain relief for many chronic pain conditions, not just cancer; it helps many of us with chronic, painful and disabling illnesses.

Photo by Startup Stock Photos on Pexels.com

To lend your voice on the opioid crisis, click the link below:

— Read on www.hhs.gov/ash/advisory-committees/pain/reports/2018-12-draft-report-on-updates-gaps-inconsistencies-recommendations/index.html


The “Kissing Disease” Linked to Some Adult Chronic Illnesses & Diseases

The Epstein-Barr Virus, aka the “Kissing Disease” or “Mono(nucleosis)” has been linked to several chronic illnesses and autoimmune diseases–including Fibromyalgia, Multiple Sclerosis and Cancer; according to an interview with Dr. Henry H. Balfour, Jr. MD, Professor at the University of Minnesota/Lab Medicine and Pathology Department.

Watch this news clip, courtesy of 11alive.com, which interviews Dr. Balfour as he explains his theory:


Proper Medical Documentation: Why It’s Important

When I was “younger” I trusted my (ex) doctors were taking care of me for years; until I realized they weren’t actually paying attention to my symptoms–only making assumptions–and not taking proper records. Because of that, I have been fighting for Social Security Disability over ten years later–and I’m guessing I’m going to be denied again this time around (it doesn’t stop hurting after all of these years, you just start getting used to being rejected… Personal tip: Never give up fighting for Disability if you believe you honestly and truly deserve it).

doctor-with-tabletWhether you’re disabled or not, it’s important to make sure that your doctor is documenting your case properly by noting all of your symptoms–including any and all phone calls where you discuss your symptoms (some doctors don’t keep notes of calls with their patients–losing very important information at times). If you doctor isn’t keeping proper records, it could mean longer wait time for a proper diagnosis–and treatment–which could even mean the difference between life and death or disability…

As far as Disability and the Social Security Administration, it doesn’t matter how disabled you are in real life–if it’s not on record and they can’t read how severely ill you truly are, you will not be approved for SSDI. The guidelines are very strict, and interpretation of these records depend on whether you’ll be approved for Social Security or not… Even if you have medical records as tall as you are… if your records don’t detail every symptom, official diagnosis, and the scale of your disability, you will lose YOUR money. Even worse, if you become disabled and still haven’t been diagnosed, you will have no chance at winning your “benefits” if you don’t get your answers before your DLI (Date Last Insured–The SSA’s term for the final day of being “insured”, ie. end of premium date). It doesn’t matter how many times you went to your doctor, or how hard you tried to get them to help you. Your relationship with your doctor, and how they keep record of your illness(es) will be the deciding factor in more ways than one.

Read more about why it’s so important for doctors to take proper records in the article Poor Documentation: Why It Happens & How To Fix It, and what can be done to help create change in the medical field.

It can mean more than just your life, it also means your quality of life/livelihood… Like you don’t have enough problems already, right?


Strengthening Doctor/Patient Relationships

0328eaa9-e829-4681-a268-1485280d3bd0_400_282It almost seems a lifetime ago that I was fighting for answers for all of my confusing symptoms.

For years I waited patiently for my doctors to come up with an answer to what was happening to my body, and nothing really happened. Well, actually, one particular doctor especially did keep trying to send me to a psychiatrist because, of course, my symptoms were “all in my head” (and a few other choice phrases). I was in my 30’s, and according to them, “too young” to be having the types of complaints that I had.

In fact, if it wasn’t for a doctor telling me to look up Fibromyalgia online that April in 2006 (that he finally diagnosed me with–then proceeded to tell me it was a “throw away diagnosis”)–I probably would have been a permanent resident of a psychiatric hospital by now because of them.

Literally. Pretty scary, right?

When I finally learned about the vast amount of quality medical information that was available online, and realized that Fibro didn’t answer all of my questions, I started researching my symptoms on my own.

It was about six months later that I learned my primary physician had lied to me about not having Multiple Sclerosis–because he never actually tested me for it. Had he tested me for it back in 2005, I believe that I may not have progressed with my illness(es) as much as I did after the meningitis attack. After he told me that I didn’t have MS, I even asked him if I was brain damaged because I wasn’t able to concentrate, comprehend a lot of things; my speech would slur and more. His reply was simply “no”, and he left the room.

Researching my symptoms changed my life for the better. It wasn’t easy at first–most doctors don’t appreciate a patient doing their own medical investigating. In fact, a lot of them frown upon it.

istock_000016285548xsmallBut, some doctors actually do appreciate it as long as you are well informed when you present it to them.

When I realized that my doctor(s) weren’t paying proper attention to my medical issues, I finally got away from the entire medical group four years later (it would have been sooner had I not had a case already pending about my disability). You could say that the treatment that I, and some of my family members received could have been considered malpractice because of the undertreatment and misdiagnoses that were taking place on a nearly consistent basis for several years.

Since handpicking my own doctors I have been diagnosed with Multiple Sclerosis, Systemic Lupus, Ehlers-Danlos, Epstein-Barr–the list is a page or two long so I won’t bore you with the details.

Check out the link to the article in the October 2016 issue of Neurology Now that agrees that patients want more input when it comes to their health. It offers some great tips to have better interaction with your physicians – and hopefully get a more timely diagnosis.

Good reading, and good luck with your research. ❤

Chaos Behind A Smile

I read Susan Williams’ account of her husband, the late Robin Williams’s final months. It’s heartbreaking, yet so familiar at the same time if you live with a chronic illness.

Mr. Williams was a warrior whose mind, body and spirit could take no more. In life, he inspired and filled millions of people with joy and laughter as he performed his many wonderful characters throughout his career. In many ways, his death will have meaning that he probably never anticipated.

66th Annual Primetime Emmy Awards - Show
Photo credit: Lester Cohen/Wireimage

Mr. Williams was living with an invisible illness called Lewy Body Dementia, a neurologic condition that causes a form of dementia that creates the same underlying changes in the brain as Parkinson’s Disease and Alzheimer’s. He was officially diagnosed postmortem. Even though he succumbed to his illness on his own terms his widow, Susan, explains in detail the journey that led to the final months of his life. She showed how difficult it was for him, and for his family, to go through his journey of confusion, cognitive issues, temporary paralysis and more.

Everything the public never saw.

She showed us, through the eyes of a caregiver, the life of a human being that was living with a debilitating chronic illness.

PLEASE, read Mrs. Williams’ story. I promise, it will open your eyes – and your hearts – to a world that healthy people, luckily, never have to experience.

It will teach you how easily a smile can fool the outside world into believing that a sick person is fine.

Do me a favor. After you read the story, share it with your friends and loved ones. While you’re at it, give them a hug – remember how precious life, and good health, truly is.

Rest in peace, Mr. Williams. Your light will be in our hearts and laughter for eternity.

To learn more about Lewy Body Dementia (LBD), click here.  

To donate to the Lewy Body Dementia Association, click here.


Some notable people who suffered from Lewy Body Dementia include:

  • Actress Estelle Getty
  • Music industry icon Casey Kasem
  • Athlete Stan Mikita
  • Artist Don Featherstone, creator of the iconic lawn flamingo
  • Former NBA head coach Jerry Sloan
  • Actor Robin Williams

Summer Treats & Gadgets To Beat The Heat

Refreshing Watermelon Margarita

via Watermelon Margarita — MSnubutterflies

Watermelon Margarita

Since Memorial Day weekend is almost upon us I thought I would share this recipe.  Whether you’re barbecuing with family and friends or relaxing at home it’s a perfect summer drink. Light, cool, and so refreshing! It’s my new favorite.


18 Quick Summer Snacks

by JaneMaynard via Cosmopolitan

Simple, delicious snacks and desserts in this easy to access website. Beat the summer heat while noshing on these wonderful delicacies. Yum!



Sew Very Useful Neck Cooler (DIY)

by Beastbunny via Instructables

The neck cooler in its dry, flat state before soaking in water.

Have a great summer!

Doctor Writes A Letter To Patients With A Chronic Illness


Why aren’t Medical Schools teaching a class on Doctor/Patient relationships and the insecurities and communications (and miscommunications) that happen between them?

I know it would have been a much more pleasant experience for me all those years, if a doctor would have had the guts to just say, “I’m sorry… I can’t help you. Please find a new doctor.”

It would have been so much easier than their favorite go-to, “Go see a psychiatrist”.

After the scores of “insecure” doctors I have been to over the years, I think I just might, thank you.

Click to read the letter, “A Letter To Patients With Chronic Disease“, by Dr. Rob Lamberts in his blog. He actually sounds like he gets it!

Doctors That Are Patients, Too

NeuronsAll too often, people that live with a chronic illness have a difficult time explaining to their doctor what their pain feels like; the fog, the numbness and tingling, the fatigue or whatever symptom they happen to be experiencing that week. We tend to become frustrated because we see the looks that a doctor gives us, most likely because our explanation doesn’t sound anything like they are described in medical school.

We as patients though were never taught how to properly describe a symptom; so basically going into an appointment can be like going to a convention where no one speaks the same language – which ultimately leads to nothing but confusion and frustration, and a lot of wasted time.

It’s extremely rare to find a doctor that understands exactly what we’re talking about. Unless, of course, they actually live with the symptoms we have been experiencing.

If you live with Multiple Sclerosis, you may have heard about a doctor named Terry Wahl, MD. She is the inventor of the “Wahls Protocol” (Amazon, Paperback $10.97), a diet she created to help stave off her symptoms of her progressive MS (which worked wonders for her), ultimately hoping to help others MSer’s do the same.

More recently, I have learned about Vincent F. Macaluso, MD. He is a neurologist that was diagnosed with MS while he was going to Medical School. Understandably, his specialty landed toward Multiple Sclerosis after school; and more recently he wrote a book called, “Multiple Sclerosis From Both Sides of the Desk” (Amazon, Paperback $24.73 USD)

Dr. Macaluso stated in an interview (below) that having MS influenced his practice, not only because he can relate to his patients in more personal manner, but also because he knows what alternative medications can be prescribed to help some of the symptoms. One of those medications, normally used for Attention Deficit Disorder (ADD), helped him finish his new book, because it was able to help him with the weak focus that is commonly found in patients with MS. In writing his book, Macaluso said he hopes to encourage clinical trials of similar drugs for MS, and spread awareness of the realities of MS patients among his colleagues, and MS patients and their families.

After hearing what Dr. Macaluso had to say in his interviews, I’m really looking forward to getting a copy of his book for myself so I can hear what else he has to say. Check out two of his interviews that are posted below:

  • Interview #1 – with Vincent F. Macaluso, MD; Credit to: Fox News Health

(Unfortunately, I was unable to embed this video, so please visit the link below to see the full interview with Dr. Macaluso on Fox News Health):

Fox News Health | Interview with Vincent F. Macaluso, MD

  • Interview #2 – with Vincent F. Macaluso, MD; Video credit to: Fox5NY 

If you do happen to get a copy of his book, come back and let me know what you thought… I’d love to hear your reviews!
Good reading!