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.

Be Still Day

“Learning how to Be Still, to really Be Still and let life happen — that stillness becomes a radiance.”  (Morgan Freeman)

Last Sunday, overwhelmed and anxious, I decided it was time for a Be Still Day!   On this day only calmness, peacefulness, and stillness could enter my “Personal Space.”  

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Is it difficult to Be Still?  Or is it, just me?  As a young child, Mama often had to remind me to stop fidgeting.   She would quietly, but firmly say, “Yvonne, Be Still.”   An impatient child, I fidgeted most when I was . . .

  • getting my hair combed;
  • doing homework;
  • sitting in church,
  • riding in a car, or
  • eating dinner.

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Had I learned to Be Still as a child, perhaps my adult life would have been less stressful.   Though, I stopped fidgeting after a while, to Be Still is yet a work in progress.

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More recently, my inability to Be Still correlates with an addiction to my I-Pad and MacBook Pro.  For this reason, venturing into cyberspace — banned on Be Still Day.  No surfing the Internet, reading e-mails, or entering blogosphere for me on Be Still Day.  

The Be Still Day was a success.  I needed this day of stillness, aloneness, meditation, inner focus, and spiritual enlightenment to cure a serious case of undernourishment.

For weeks leading up to the self-imposed Be Still Day, I didn’t nourish my mind, body and spirit.  Far too many “first time tasks” on a long “to do list.”   All related to:

  • A 53rd Anniversary Gift this month from Hubby and The Eldest Daughter; as well as
  • Preparing for The Daughters and 13-Year-Old Grandson’s Annual Week-Long Spring Visit

The anniversary gift was a “generous, though budgeted amount,” for a mini makeover of my kitchen and bathrooms.    Hubby and The Eldest Daughter offered to help.   My immediate response was, “I Got This.”   After all, I have been an avid follower of . . .

  • Home and Garden TV
  • Do It Yourself Network
  • Martha Stewart Living
  • Better Homes and Gardens
  • Real Simple
  • House and Home

Certainly, twenty years of devouring decorating magazines and countless hours of watching home makeover programs on television prepared me to handle a “mini makeover.” 

Feeling confident, I went to my trusted friend, The Internet, for ideas on tile, granite, sinks, faucets, and lighting.    Looking for contractors, plumbers, fabricators, installers, electricians, and painters; I  checked the telephone book, Angie’s List, Craig’s List as well as asking my neighbors.  Overwhelmed with all the options.  Unable to make a decision, I spent days analyzing, procrastinating and stressing outaccomplishing nothing.  

My inner voice shouted, “You need help.”   Putting pride aside, I called on the Hubby and The Eldest Daughter for help.   Working together, as a team, we completed all the tasks on the “to do list” in less than a week.   The last stage of the project, installing the backsplash tiles, is scheduled for completion by day’s end.

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I am a Survivor.  Living with a medical history of:

  • Breast Cancer,
  • Rheumatoid Arthritis,
  • Chronic Obstructive Pulmonary Disease;
  • Sleep Apnea;
  • Fibromyalgia, and
  • Peripheral Neuropathy

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The challenges I face, as a survivor, on any given day can be . . .

  • Fatigue
  • Sleeplessness
  • Weakened Immune System
  • Stressfulness
  • Chronic Pain
  • Cancer Re-Occurrence

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Oftentimes, I forget my survivor status and take on too much.  When this happens, the mind, body and spirit crash.   I can always count on Hubby and the Three Adult Kids to lift me up.   Ultimately, however, I am the survivor and it is my responsibility to make the right choices.

Since Be Still Day, upon arising every morning, I repeat my personal affirmation.

I am a survivor of Breast Cancer and Chronic Pain.   I claim, accept and embrace this life.  Today, I am grateful for the opportunity to follow my path toward a healthy mind, body, and spirit.  My Survivorship is Dependent Upon My Emotional, Mental and Physical Health. (SeasonedSistah 2)

Exciting New Adventure – Yoga Class!!!

When I first signed up for an exercise program at the YMCA more than sixteen years ago, Yoga was my first exercise of choice.  But, I walked away.  Why?  I was . . .

  • Embarrassed about the inability to lift or lower my body to do the floor poses; and
  • Fearful to let others know about this physical limitation.

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Recently, this changed.  First, let me share my story.  Several months ago while perusing the Internet, I came across an article on Chair Yoga DVDs for the elderly and people with disabilities.   Immediately, I went to my favorite online source for DVDs, www.amazon.com, and ordered three — “Easy Yoga for Arthritis,” “Chair Yoga:  A Seated Practice,” and “Yoga for Us.”

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Looking to share my happiness, I e-mailed a friend who has practiced Yoga for a number of years.  She cautioned against trying to do this on my own.  Her advice, which I respect and value, was to find a Yoga instructor who could show me the proper way to do the poses and lessen the chance of getting an injury.

Following my friend’s suggestion, I discussed my dilemma with a personal trainer at the YMCA.  She urged me to attend one of the upcoming Yoga Issues classes.  Mind you, she said the Yoga Issues class was “low key” and designed to meet the special needs of people with “issues” that prevented them from taking a traditional Yoga class.

Imagine my surprise when I entered the class.   There were No Chairs.   Well, One Chair was in the middle of the room.   But, surrounding the One Chair were people sitting on a variety of vibrant and colorful Yoga floor mats.  All appeared quite comfortable in their Cross-Legged seated poses.  The ONE CHAIR, I assumed was for me.  So, I claimed it.   This “issues” group performed poses comparable to the ones I had observed while peeking through the window of the Yoga class at the YMCA in my former hometown years ago.

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In looking around the room, like me, there were,

  • elders in the class;
  • several people were overweight; and
  •  others may have had “invisible” disabling conditions.

But their “issues” did not seem to limit their abilities.

I sit in the CHAIR, fearful and embarrassed.  I watched the flexible and pliant bodies of people with supposed “issues” effortlessly bending, reaching, rising, lifting and twisting their bodies as they did the various Yoga poses.   Following the lead of others, I attempted, when possible, to do the poses in a sitting position.  I was embarrassed by my performance.

Disappointed, but not defeated, I returned to the class the following week.  Alone, in a far corner of the room, and leaning against the wall was the CHAIR.  I claimed the CHAIR.  Clearly, no one else in the class would ever need a CHAIR.   Naturally, I did not seek a spot in the center of the room.  The CHAIR and I went to the farthest corner in the rear of the studio.   I placed my Yoga mat in front of the CHAIR for the comfort of my feet.  Unlike the first class, I chose to do the standing poses without the assistance of the CHAIR.

Then, it was time to do the floor poses.  I sat down in my CHAIR.  After several poses, the CHAIR slowly started to lower toward the floor.  I prayed no one would notice.  But, the CHAIR kept moving down, down, down until my “buttocks” ever so lightly touched the floor.  Several people came to offer help.  Pride made me say NO.  I did not want people standing around trying to figure out how to get me up.  .

Instead, I remained on the floor.  To my surprise, with a bit of effort and a little pain, I got through the poses.  Independent, of any help, I brought my body to an upright standing position.

Now, I don’t want to oversell.  While I lifted, reached and twisted, this body did not always end up where it was supposed to go.  Touching my toes and sitting in a Cross-Legged pose are at the very top of my “Yoga Goal List.”

I am a little nervous about going to the next class.   But, FEAR and EMBARRASSMENT, are no longer problems.  After years of dreaming, I am grateful to finally have Yoga in my life.

Thank you CHAIR for breaking and gently guiding me to the right place.

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I Choose to Rise 

Better Late than Never

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Late Start

At 54 years of age, roughly 16 years ago, I chose to start exercising.   Chronic pain had literally controlled my life for more than three years.  I relied on prescribed medications for pain relief.  While the medications temporarily and sporadically reduced pain levels, I aspired to have a richer and fuller life.  Frequent, pain flare-ups prevented me from carrying out many day-to-day functional activities.  My body was under the control of either Ms. Fibro (Fibromyalgia-muscle pain) or Mr. Arthur (Rheumatoid Arthritis-joint pain).  While I FEARED the prospect of enduring the extra pain likely to come with exercising, the excruciating pain I was experiencing at the time left me with no other realistic choice.

In the Beginning

I exercised three days per week.  I could only endure six minutes on the treadmill and five minutes on the bicycle.  The body was so deconditioned and the muscles so atrophied, 11 minutes of low-impact exercise was all I could tolerate. Those first months were a struggle.  But, as the days, weeks and months passed – the FEAR disappeared — the pain lessened –the body strengthened.

Results

Over time, I have been able to add:

  • 49 minutes to exercise time (11 minutes to 60 minutes);
  • 2 days per week to exercise program (3 days to 5 days);
  • 3 new cardio machines to the treadmill and bicycle (Step, Elliptical, and PreCor); and
  • 10 circuit weight machines

Making the decision to start exercising was not easy.  But, I chose to TRY.

TODAY

Mr. Arthur and Ms. Fibro are no longer in control of my life:

“It is Better to Do Something Late than Not at All”