Fibro Treatment: Pending

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Last Monday, a visit to MY Primary Care Physician left ME feeling frustrated and concerned.  Why?  When I requested a new Rheumatology referral, he responded,

“If You Find A New Rheumatologist, Do Not Mention You Have Fibromyalgia.”

I was Silenced.   What’s a polite way to say, “Doctor, I need a Rheumatologist who wants to treat Fibromyalgia”?

Satisfied with the current Rheumatologist’s treatment for MY Rheumatoid Arthritis; but, I was disappointed with his failure to address MY Fibromyalgia.  Even though, I mentioned this on more than one occasion.

I left the Primary Care Physician’s office, without a new referral, unsure of what to do next.

Diagnosed with Fibromyalgia more than sixteen years ago, I was able to get access to quality health care when I lived in Wisconsin.   I was blessed with empathetic, compassionate and highly trained health care providersPCP, Pain Specialist, Rheumatologist, Psychologist, and Physical Therapists.  They respected, validated and treated Fibromyalgia.   Though I continued to rely on these health providers for more than three years after retiring in Florida, this is no longer practical.

When I reached out for treatment in Florida; two of physicians sent different messages:  (1) Ignore the Condition and (2) Hide the Condition.

Are there health care providers who think Fibromyalgia is a “wastebasket syndrome?”   Is it possible that they still Believe the Myths and Disregard the Facts as reported on:

www.fibrocenter.co

Myth: Fibromyalgia is rare.

Fact: Fibromyalgia is one of the most common types of chronic pain disorders.  More than 5 million people in the United States have fibromyalgia.

Myth: Doctors diagnose fibromyalgia when they can’t find a “real” diagnosis.

Fact:  Fibromyalgia is very much a real condition. In 1990, the American College of Rheumatology developed guidelines for diagnosing fibromyalgia. Today, these guidelines are widely applied.  Today there are more than 4,000 published fibromyalgia studies.

Myth: Fibromyalgia is a “woman’s disease.”

Fact: The majority of people with fibromyalgia are women (about 80%). But, remember that fibromyalgia is a common condition. That means many men are diagnosed as well.

Myth: The pain of fibromyalgia is mild.

Fact: Some people only experience mild symptoms, especially when they are being properly treated. For others, the pain can be severe. It can have a significant impact on quality of life.

www.sharecare.com

MYTH: Your Fibro Symptoms Are All in Your Head


FACT: Fibromyalgia is a real medical condition, which includes specific medical criteria for diagnosis.

MYTH: Only Lazy, Inactive People Get Fibromyalgia


Fact: Researchers actually suspect that many people who develop fibromyalgia are driven people, and that the stress of that drive may play a role in wearing away a person’s defenses against fibro symptoms.

MYTH: There Are No Effective Fibro Treatments


Fact: Here’s the good news. As more and more research is being done on fibromyalgia, we’re learning more about it. And that’s helping doctors pinpoint better, more effective fibro treatments. The catch is that what works for one person may not work for another, so you need to work closely with a doctor to refine and modify your fibromyalgia treatment.

The denial of health care for Fibromyalgia is probably not covered under existing anti-discrimination laws.  Yet, I felt discriminated against.  The same feelings of “unworthiness”, “loss of self esteem”, “powerlessness” and “helplessness”, that I  experienced when faced with discriminatory practices in the past because of MY race, age, sex, and/or disability.

Yes, I definitely need health care for both Rheumatoid Arthritis and Fibromyalgia.  Over MY 70+ years, I have learned to pick my battles.  Therefore, I decided to focus on the RA treatment.   Exacerbated pain levels and joint degeneration leaves ME little choice.  For now, I will not  “burn bridges” and/or “voice opposition” because of inaccessible health care for Fibro.  But, I will re-visit this issue at a later date.  Not sure how, but MY voice shall be heard.

MY Choice – Online Church

Posted @ QUOTEZ.CO

Six months ago, I made the choice to visit an on-line church service.   Nowadays, Sunday mornings from 8:30 to 10:30 a.m., I am in front of the computer.

What Critics Say

To find out, I did a Google Search.  I found critics, both pastors and parishioners, who felt there were major missing elements within the on-line churches.   For example,

  • Corporate worship, praying and studying the bible together.
  • Serving one another and reaching out in mission together.
  • Encouraging each other through personal face-to-face interactions.
  • Taking Communion.
  • God needing your physical presence in the church.

Why I Made the Choice

Hubby and I retired and relocated to Florida four years ago; and, we spent the first three years visiting church after church looking for the right one to call our home.  Unsuccessful, I decided to accept a cousin’s invitation to visit her church service online in Chicago.  I had two options to worship:

  • On-Demand Recording at my convenience; or
  • Live Video Streaming during the actual church service.

Because, I wanted to hold on to the tradition of attending church on Sunday mornings, I chose the Live Video Streaming option.

After the first visit, I knew this was the church for ME.

First, the biblical teachings, mission, and focus on social justice mirrored MY former church.  I wanted to keep worshipping within the  “comfort zone” I had grown accustomed to.  And, these two churches embraced MY religious needs as a Black Christian seeking a positive spiritual, ethnic, and cultural experience within a church environment.

Second, the weekly Live Video Streaming church services connects ME with family members who attend this church.   The opportunity to build a stronger religious relationship, though we are separated by thousands of miles, has improved the quality of my life.   On any given Sunday it is possible to briefly connect with:

  • Cousin G, a Deacon in the church, singing in the Men’s Choir.
  • Cousin S’s young granddaughter, member, Children’s Praise Dance Team.
  • Cousin S, an Ordained Minister and long-time church member.
  • Cousin-In-Law D, a Deacon in the church, sitting in his designated pew.

Oftentimes, I will text, telephone, or e-mail Cousin S about a service.

Initially I had serious reservations about worshipping at an on-line church:

  • Self-Doubt made me ask, “How will others view this decision?”
  • Self-Awareness stepped in saying, “Who cares, it’s your choice.
  • Self-Empowerment gave ME the courage to accept, acknowledge, and embrace MY choice.

Though HUBBY supports MY decision, HE has yet to join ME for an on-line church service.   I’m just waiting.  After all, we have been partnering as a married couple for almost fifty-four years.  He’ll come around.

 

Grateful for My Breast Cancer Mentor

I will never forget February 8, 2008.   The date of my breast cancer diagnosis.  I immediately went back to 1988.  Remembering, the eight weeks I was a caregiver to my sister-in-law who had breast cancer and died quietly in our spare bedroom.   Caring for her was a gratifying experience, but it was painful and heartbreaking to watch a loved one slowly departing this life.  On February 8, 2008, I saw myself going down the same path.

But several days after the diagnosis this wonderful woman, who is a breast cancer survivor, entered my life.  She was the founder and president of a newly formed organization, Sisters Network, Inc., – Milwaukee Affiliate.   An organization dedicated to providing supportive, educational, and advocacy outreach services to increase breast cancer awareness for African-American women in Milwaukee, Wisconsin and surrounding areas.

At the time, she was employed as a full-time nursing instructor and simultaneously implementing this new and innovative non-profit organization.  Yet, she found the time to lend individual support to a newly diagnosed breast cancer patient. 

My Breast Cancer Mentor was there or within reach as I went through a lumpectomy, chemotherapy, and radiation.   Utilizing the information and tips she provided, I navigated through the treatments with little or no distress.

For the past five plus years, I have watched my Breast Cancer Mentor build a strong organization.  One that is well respected throughout the city and surrounding areas known for providing survivors, caregivers, and others with a broad range of programs, events, and activities designed to increase breast cancer awareness.

Because of the long-relationship with my Breast Cancer Mentor and the other survivors at Sisters Network, Inc., I have been able to make the transition from:

  • being a Victim – I lived in fear of the “unknown.” Always seeking an answer to the question, “breast cancer, Why Me?”  
  • to living as a Warrior – I will not let breast cancer define who I am.  I live in the present moment expressing and demonstrating gratitude, daily, for the wonderful Gift of Life.

As my Cancerversary date grows closer, I wanted to honor and express heartfelt love and appreciation to my Breast Cancer Mentor, she continues to:

  • inspire me to look beyond my condition;
  • uplift me spiritually (a praying woman)’
  • educate me on the positive benefits of mindfulness, wellness, and spirituality.

Thank you, Phyllis Holder, for all you have done, all you continue to do, and all I know you will continue to do in your untiring effort to promote breast cancer awareness for the under diagnosed and undertreated population in the Milwaukee community.

My Mentor – Cancer Retreat

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Cancer Help Program-The New School of Commonweal

My Mentor – Top Row and Center

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NAACP Young Professionals Adult – Fundraiser:  A Tribute to Services Provided by Sisters Network to the Community

Happy One-Year Blogging Anniversary to ME

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This past year, beginning with writing the first post for this blog, I started down the path of a life-changing journey.   In search of peace, love, and happinessI stepped out of my comfort zone to look for ME.

As I walked this path, I paused along the way to

  • Publish a Weekly Blog Post
  • Socialize on Facebook
  • Practice Yoga
  • Attend Aqua Zumba Classes
  • Transition from Windows PC to Apple Mac Software
  • Meditate Daily
  • Express Gratitude
  • Pray and Praise God
  • Make Positive Affirmations
  • Perform Random Acts of Kindness

In 2014, I want to continue to release the “unnecessary burdens” of 

  • Negativity
  • Fear
  • Self-Judgment
  • Anger
  • Low Self-Esteem
  • Gossip

These things block ME from being the person God created.

In this second year of blogging, I will write about MY continued journey to create a peaceful, loving, and happy life through:

  • Self-AwarenessAs you become more clear about who you really are you’ll be better able to decide what is best for you – the first time around.”  (Oprah Winfrey)
  • Self-Care – “Our bodies are our gardens to which our wills are gardeners.”  (William Shakespeare)
  • Self-Acceptance – “You don’t need to be accepted by others.  You need to accept yourself. The only person who can pull me down I, myself, and I’m not going to let myself pull me down anymore.”  (C.  JoyBell)

I am a work-in-progress.   I grow stronger and wiser each day.  I no longer regret what happened in the past or fear what may happen in the future; Moment-by-Moment, I choose to live in the Present.  For, this is the only timeframe within MY control.

Sometimes You Just Gotta Rant!!!

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Since, the “texting in the movie theater shooting last week,” I have been ANGRY.  Wanting to COMPLAIN loudly. After a while, Hubby tuned me out.  Frustrated!!I Gotta Rant?   Sorry, loyal blog followers.  I need to dump a little negativity on you this week.

Hear Me Rant!!! We Need Better Gun Control Laws

Too many guns in the hands of criminals, YES.

But, also too many “concealed weapons” in the hands of supposedlylaw-abiding people.” 

Law abiding people acting as judge, jury and executioner.

Law abiding people who, apparently, believe the “license to carry a weapon” anoints them to the level of judge, jury and executioner.

This is a health and safety issue for all of us.

Did you know that 554 people have been killed since May 2007 by people licensed to carry concealed weapons in incidents that did not involve self-defense.” 

Allow Me Rant About Five!!

Rant #1:  71-year-old, retired police officer felt entitled to “draw his “concealed weapon” to shoot and kill” Chad Oulson, a 43-year-old father and husband in a movie theater who “refused to stop texting” and “responded to the request to stop texting by throwing popcorn.” (January 2014 – Florida)

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Rant #2:  Renisha McBride, 19-years-old, injured and dazed following an early morning car accident in a Detroit suburb.   Seeking help, she went to a nearby home, knocked on the door and was met with a gunshot wound to the head.  The homeowner alleged she was an intruder.  Yet, he failed to call 911 prior to shooting her through a locked screen door.  And, then left her to die on the front porch without calling 911. (December 2013, Michigan)

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Rant #3:  Jordan Russell Davis, 17-years-old sitting in a parked SUV at a gas station with friends was shot and killed.   The shooter, 45-years old, was angered by the loud music the young men were listening to.  When they failed to turn the music off, he randomly fired shots into the vehicle killing Jordan.    (November 2013, Florida)

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Rant #4:  Darius Simmons, 13-years old, shot and killed by a 76-year-old neighbor who suspected Darius had broken into his home and stolen weapons.   As Darius mother stood helplessly by on her front porch, the neighbor first pointed the gun at her; and, then pointed the gun at Darius and shot him in the chest.  (July 2013, Wisconsin)

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Rant #5:  Seventeen-year-old, Travon Benjamin Martin, was shot and killed while walking unarmed in a gated community by a neighborhood watch captain.   Calling 911, to report seeing a “suspicious person,” he ignored instructions not to get out of the car and proceeded to follow Travon and killed him.  (February 2012, Florida)

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Closing Rant

I join the many other Americans who believe stricter gun control laws and better mental health restrictions are needed to address this epidemic.  It is unthinkable, in this day and age; that people feel it is okay to bear arms and act as though still live back in the days of the Wild, Wild West.

Family: The Best Holiday Gift, Part 2 – Christmas 2013

Family:  The Best Holiday Gift, Part 1 – Thanksgiving 2013

In last week’s post, I learned a valuable lesson; “You can’t have a better tomorrow if you’re always thinking about yesterday.” (Unknown).

No doubt, I am stepping outside the boundaries of a “writer’s privilege;” but, the reverse order of this quote provides a better explanation of what happened in my case.

  • “Thinking about yesterday,” I broke a more than fifty-three year family tradition of spending Thanksgiving with our Children.  Guided by the FEAR of a replay from the previous year, I chose to stay in warm Florida rather than expose my compromised immune system and serious lung condition to cold Wisconsin.
  • You can’t have a better tomorrow.”  Why?  In choosing to make a decision about tomorrow, I relied on FEAR and ignored the commonly held theory that FEAR is:   False Evidence Appearing Real.  This view was validated when I was admitted to the hospital in warm Florida for seven days, including Thanksgiving Day, with both an immune system problem and lung condition.

As it turned out, even though I didn’t spend Thanksgiving with family, I found HAPPINESS in the PRESENT” through unexpected Gifts.

 Family:  The Best Holiday Gift, Part 2

What a beautiful Gift for ME and Hubby over the Christmas Holidays in the PRESENCE of the special people who bring happiness into MY Space on a daily basis.  I am strengthened throughout the year, as the receiver, of their Gifts of encouragement, unconditional love, and support.

MY IPAD Amateur Photo Gallery

Hoping to avoid having to answer over-and-over again, “What are we eating?” I prepared the week’s menu so everyone knew what to expect:

Christmas 2013 Menu

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I was able to capture the images below of my Gifts on an IPAD camera during their seven-day visit.   While, the photos may not be appealing to the eye, they will join the other memorable treasures of past family gatherings.   For, I truly believe, “memories are a way of holding on to the things you love, the things you are, the things you never want to lose.” (Unknown)

Hubby and Youngest Granddaughter –His Little Cupcake

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Younger and Elder Daughters

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Son and His Five-Year-Old Daughter (AKA, Cupcake)

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Nephew/Surrogate Son

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Son-In-Law Married to Elder Daughter

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Eldest Grandson (24-years-old) and Baby Sister

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Granddaughter (22-years-old) and Grandson (17-Years-Old)

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Youngest Grandson (13-years-old) 

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Cupcake said, “I got this Banana Pudding!!

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The Only One that Still Believes in Santa

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Last Day – Quality Time with Two Granddaughters – Pedi/Mani

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Visit Over – ME and MY Quality Time

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Closing this week’s post, with the memorable family quotes I choose to embrace:

  • “Having someone to love is a family.  Having a place to go is a home.  Having both is a blessing.” (Donna Hedges)
  • “If the family were a fruit, it would be an orange, a circle of sections, held together but separable – each segment distinct.”  (Letty Cottin Pogrebin)
  • What greater thing is there for human souls than to feel that they are joined for life – to be with each other in silent unspeakable memories.” (George Eliot)
  • “I sustain myself with the love of family.”  (Maya Angelou)
  • “Spending time with the ones who are dear to you is like being in a dream is it not?”  (Sakura Tsukuba, Land of the Blindfolded, Vol. 3)

Living Life as One of God’s CREATIONs

The exact day of the week is unknown, but in February of 2010, I made a decision that would change the course of my life.    I chose to begin the journey of  “Living Life as One of God’s CREATIONs.”     On long-term medical leave, bedridden, recovering from a serious illness, bored, and television channel surfing, I landed on a religious cable network.   Immediately, I was drawn into the commentary and lively discussion on the topic of the day.   I have to admit, the religious cable network is not one of my “go to” networks.  My cable channel programming preferences lean more toward Home and Garden TV, The Food Network, OWN, and MSNBC.   But on this particular day, I chose to channel surf.  Why, I may never know, but the information shared in this program led me down a new path that has improved the overall quality of my life.

The discussion topic was the book by Monica Reed, M.D. entitled, “The CREATION Health Breakthrough.”  Dr. Reed, is a former Medical Officer of Florida Hospital and most recent the CEO of Florida Hospital’s medical facility – Celebration Health.  Having a lifetime commitment to whole health, Dr. Reed suggests there are “eight fundamentally, powerful and scientifically proven essentials to reverse the effects of lifestyle, prevent disease in at-risk people, and ultimately achieve total health and wellness.”

I questioned whether it was possible to “achieve total health and wellness.”   If so, I needed to get on board.  At that time, I was a chronic pain survivor having been diagnosed both with Fibromyalgia and Rheumatoid Arthritis more than seventeen years earlier.    After so many years of being by themselves, I guess these two conditions were getting lonely so in a two-year period, I brought them four new major conditions:  Breast Cancer (2008); Peripheral Neuropathy-Nerve Pain (2008); Epiglottitis-Severe Respiratory Distress (2010); and Chronic Obstructive Pulmonary Disease (2010).

These last four conditions were due to the side effects from medications prescribed to treat one condition causing the onset of a new condition.  Most over-the-counter and prescribed medications will list the side effects – even some carry the statement, “rare but serious side effects.”   It is my understanding less than 1% of people prescribed a medication will have “rare but serious side effects.”    Four incidents in two years, was I qualified to be the poster child for the “rare but serious side effects” ?    I survived four, but what about the future.  I was even more concerned after reading an article on MedicationSense.com reporting that medication side effects are the #4 leading cause of deaths in America.”   So on this cold day in February 2010, recovering from a life-threatening illness, I was more than ready to look at alternative therapies to manage my existing health conditions.

As soon as the program ended, I ordered Dr. Reed’s book, willingly paid extra for the overnight delivery, and read the entire book in one-day.    What resonated most was the section on Lifestyle Diseases, which Dr. Reed defined as,  “a group of harmful behaviors practiced over time, which result in decreased quality of life and ultimately to the onset of chronic illnesses leading to premature death.”   I had to “fess up” to having more than less of the harmful behaviors.

  • Little or no physical exercise
  • Lack of sufficient or fulfilling sleep
  • Sustained exposure to stress
  • Participate in high risk behaviors such as smoking or drug use
  • Minimal or no personal playtime or time for solitude
  • Limited family or meaningful relationship time
  • Lack of a spiritual connection

Yes, regrettably I had a long-time relationship with five of the eight behaviors as indicated by those highlighted.     Actually, there could well be six, if I were to include “smoking,” a 20-year habit until I quit in 1980.  I was ready to get on board with Dr. Reed and the CREATION Health Lifestyle.”

Some three years later, I am grateful and humbled by the improvement in my life since starting the journey to “CREATION – God’s 8 Principles for Living Life to Its Fullest .

  • I no longer control my long-term chronic conditions with medications that carry the label “rare but serious risks.”
  • On March 8, 2013, I will celebrate my Fifth Anniversary as a Breast Cancer survivor.
  • My pulmonary issues are adequately managed with minimal use of an inhaler and nebulizer.

My personal CREATION plan for living life to its fullest is ever-changing, I am happy  to share the latest with you:

C = Choice – The choices I make, in large part, determines my destiny.  Strive daily to make good choices in all areas of my life.  Choose to be happy rather than sad. Choose to focus on the positive rather than the negative.  Choose to show gratitude and appreciation daily for all of my blessings rather than coveting what other have.  Empowered and in control to make healthy choices relating to my health.

R = Rest –Take time out during the day for “solitude time.”   Reading, meditating, and “total silence” is what I choose to do during this time.  Take a full Sabbath Day on any day I feel my body is in need of rest and revitalization.

E = Environment – Home is a safe haven it brings me peace, serenity and tranquility.   I enjoy sitting on the rear patio looking at the vibrant colorful flowers overflowing in beautiful pots brings happiness into my life.  I love the feeling of “isolation.”  Large trees in the conservation area backing up to the rear of our home and flanked by tall shrubbery on both sides creates my own private oasis.

A = ActivityExercise at the YMCA four days per week for one hour.  Recognize exercise reduces my pain and stress levels.

T = Trust – Trust in God.  Develop healthy relationships based on mutual respect and trust.  Trust my other half.  Trust my children.

I = Interpersonal Relationships – Pursue supportive and positive interpersonal relationships beyond my immediate family.  Stay connected with my Wisconsin friends.  Open the door to attract new friends in Florida.

O = Outlook – Far better to find the good as opposed to the bad in any given situation.   Choose to be optimistic rather than pessimistic.  Keep a positive outlook and visualize the unlimited possibilities available during this season of my life.

N = Nutrition – Continue to develop a realistic nutrition plan.  Limit intake of animal fats and cholesterol.  Limit sweets and refined foods.  Increase intake of high fiber foods.

The quality of my life is getting better every day by – Making good Choices; Taking time for Rest; Enjoying the Environment; Exercising four days per week as an Activity;  Learning the true meaning of Trust; Expanding Interpersonal relationships; Maintaining a positive Outlook; and knowing the importance of Nutrition. 

I Am Gonna Make the Rest of My Life the Best of My Life