August 2014: Mother-Daughter Vacation in Martha’s Vineyard

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Chronic Pain flare-up

Despite the fact that weeks before this scheduled trip, I was dealing with a pain flare-up in the right knee; I was going on the annual Mother-Daughter Vacation in Martha’s Vineyard.

I have struggled with chronic pain since 1993 related to diagnosed conditions of Rheumatoid Arthritis and Fibromyaglia.  Over the years, I developed various self-management tools to control the pain levels.  However, my bone-on-bone knee pain needed either an injection or surgery.  And, neither was available before this vacation.

Since there was nothing I could do to make the “Pain Go Away”, my only option was to “Grin and Bare It” 

Wheelchair Transport Through the Airports

Since Hubby was not going, he ordered a wheelchair to transport me through the Orlando Airport.  This is a long walk through one terminal, a short train ride, and a longer walk through a second terminal.  Trust me the need for a wheelchair was the topic of more than one discussion in the days leading up to my departure.   Finally, I gave in.

My son picked me up at the Milwaukee Airport and we were off to meet-up with the daughters.  After the traditional hugs and kisses, they said, “Mama, you are limping.”  While the limp was noticeable, I am certain Hubby had telephoned with his concerns.

After discussing the pros and my cons of a wheelchair; I lost and they ordered one for the next leg of my trip.

When I arrived in Milwaukee, I was an “Unhappy Wheelchair Traveler”;  but, I left as the “Grumpy Wheelchair Traveler” as my 14-year-old grandson pushed me through the Milwaukee and Boston Airports.

Was it not just a few years ago that he depended on me to push him around in his stroller?  I was not ready for this.

Having someone push me around in a wheelchair was not a pleasant experience; and, I felt —

  • Stressed
  • Powerless
  • Depressed
  • Angry
  • Embarrassed

The Airline Flight

On the airplane and seated comfortably; I closed my eyes, breathed deeply, and let go of the negativity.

Through Self-Talk, Self-Awareness and Self-Acceptance; I embraced and accepted the gift of wheelchair transports from my hubby, son, two daughters and grandson.

No longer did I feel —

  • Stressed, I enjoyed Relaxing
  • Powerless, I gained Power
  • Depressed, I discovered Peace
  • Angry, I achieved Happiness
  • Embarrassed,  I reflected Pride

 A Few of My Favorite Mother-Daughter Vacation Photos – 2014

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The 14-Year-Old Grandson, CJ with His Friend – Lunch on the Ferry
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The Ferry Deck
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First Night. First Order of Business – Glass of Wine
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My Play Daughter from Another Mother, My Youngest Daughter, and Their Two Boys Playing Monopoly on a Rainy Day
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The Moms Won
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Could This Be The Reason The Moms Won At Monopoly? IPhones, IPADS, Laptops, X-Boxes, etc.? I’m Just Saying!!
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Main Street – Downtown Oak Bluff
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Oak Bluff Pier
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Love The Old Vintage Homes on Main Street – Downtown Oak Bluff – Facing the Atlantic Ocean
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Lunch on The Upper Deck of Nancy’s Seafood with Grandson, Two of His Friends and the Daughters
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Surprise from The Daughters – My Favorite Appetizer Before the Crab Leg, Lobster and Shrimp Boil
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The Grandson CJ – Adding Crab Legs to the Boil
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It’s Crab Boil Night – Because CJ Hates Seafood, He Had A Burrito. His Friend Enjoyed the Crab Let Boil and the Burrito.
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Relaxing and Sitting on The Oak Bluff Pier
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Look Up In The Sky – Air Force Helicopters Flying Over Prior to The President’s Vacation Visit in The Next Several Days.
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Beautiful Sunset View Sitting on The Front Porch
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Last Night. Busy Week. Grandson Massaging Mom’s Feet. He Is Special!!!
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Goodbye Rental House – See You In August 2015

Pain, Pain Go Away – Come Again Another Day

 Introduction

For more than fourteen years, I believed MY Pain had “Gone Away”.  But, in December 2013, the Pain decided to “Come Again Another Day”.  And, I started to experience both intermittent and continuous pain daily and nightlyThe levels ranged from “five” to “ten”  on the “standardized pain management scale.” 

pain-faces-web Why the Pain Came Back

This “pain flare-up” occurred when I quit taking the injectable drug, Methotrexate, to treat MY Rheumatoid Arthritis.    I injected the first dose in 1997 and once a week thereafter until it was discontinued in December 2013.

 Toward the end of November 2013, I was hospitalized for treatment of bronchitis. The pulmonologist performed a bronchoscopy procedure while I was in the hospital.  Several weeks after being released from the hospital, I followed up with the pulmonologist; and, he shared the results of the bronchoscopy procedure.  It showed scarring on MY lungs.  Prior to MY follow-up visit, the pulmonologist spoke with MY rheumatologist .  Both agreed, this newly diagnosed lung condition was due to the side effects of Methotrexate  I was told to immediately discontinue the medication.  They offered no options for alternative treatments.

When the Pain Came Back

Shortly after discontinuing the medication, the years of  living virtually pain-free ended.   I was in painI mean really, really severe pain.   I first went to see MY rheumatologist and followed up with a visit to MY primary care physician.

The rheumatologist increased my prednisone prescription from 5 to 7-½mg.  Several weeks passed with no pain relief; so, he increased the prednisone from 7-½ to10 mg.   Still there was no pain relief.  Finally, the rheumatologist prescribed Leflunomide, 20mg.  But, he cautioned it could take at least four weeks before I saw any improvements.  Could I live with this unbearable pain for four weeks?  No!!!!  I had to look elsewhere.

So, I went to see MY primary care physician for advice and to, specifically ask, if it was okay to take Vicodan.  I had eleven pills left from the thirty prescribed in February 2010; when I was discharged from the hospital after an extended stay for the treatment of epiglottitis.   He responded in a very patronizing voice, “stay away from pain medications they are not good for you.”

I couldn’t believe he said that!!!  Had he bothered to look at MY past medical records?  If he had taken the time, he would have noted that during MY more than 20 years as a chronic pain patient (other than the 2010 hospitalization);  I never received a prescription for an opioid/narcotic medication   When he offered no alternatives for dealing with the pain,  I knew it was time to step outside the box.

The Pain Goes Away

I reached out to  MY pain management doctor in Wisconsin.  She is fellowship-trained in pain management as well as board certified in both anesthesia and pain management.  I have been under her care for more than seventeen years.  I schedule follow-up visits at least 2-3 times a year when I return to Wisconsin.  Under her care, I had managed MY chronic pain without opioid medication and invasive procedures for more than seventeen years.  Through a multidisciplinary approach, working together, we developed a comprehensive, individualized treatment plan focusing on:  medication management, physical therapy, nutrition/diet, psychological counseling, and a variety of self management tools (exercise, mindfulness, diet/nutrition, sleeping habits, music, relaxation, distractions, etc).

On Tuesday, I telephoned her.  She listened to ME.  She empathized with ME.  She responded to MY needs.  She prescribed a non-narcotic pain medication to help ME.

I started taking it on Wednesday.  Today, Sunday, as I write this post; I am virtually pain-free.  I  am able to:

  • prepare meals,
  • perform housekeeping chores,
  • exercise at the YMCA
  • shop for groceries and flowers to plant, and
  • water and tidy up around our container flower garden.

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Come Again Another Day

Since there is no known cure for chronic pain, I am certain it will return.  In the meantime, I will search for two new doctors in Florida.  Doctors who, I believe, have the capacity to understand and respond to the unique needs of a chronic pain patient.

“Few things a doctor does are more important than relieving pain… pain is soul destroying.  No patient should have to endure intense pain unnecessarily.   The quality of mercy is essential to the practice of medicine; here, of all places, it should not be strained.”  (Marcia Angell)