Awesome Side Effects

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In the more than 60+ years of taking medications, I never experienced “side effects.” But, since 2008, I have faced several serious health issues that related to “medication side effects.”  I always knew there were side effects to medications. I just never bothered to check.  Thinking, the doctor prescribed the medication, so it’s okay.

In a ten-year period, I took four different medications to treat conditions, which later turned into creating new conditions.   After the first incident, I should have learned a lesson.  Well, I didn’t.

First Incident – Humira

About ten years ago I was prescribed a weekly self-injection of the drug, Humira, to treat MY Rheumatoid Arthritis.   The “risks and benefits” expert in the family was Hubby’s 83-year-old aunt.  For more years than I can remember, she wouldn’t take a prescribed or over-the-county medication without researching the “risks and benefits”. A long-time RA survivor, I asked her what she thought of this drug.  And Auntie said, “There are too many risks.”  I listened. But, it didn’t change my mind.

During that time, I made bi-monthly visits, to the hospital for a four-hour infusion of Remicade to treat MY RA.  The “benefits” of the weekly at-home injections of Humira versus a four-hour stay at the hospital outweighed, in MY mind, any “risks.”

Five years later, I was diagnosed with Breast Cancer which according to the literature and confirmed by both MY then treating oncologist and rheumatologist was due to the “side effects” of Humira.

(Thankful for the Humira medication, which significantly reduced MY pain levels.  Living this new life as a Breast Cancer Survivor opened ME up to receiving and expressing Gratitude everyday for the Gift of Life.)

Second Incident – Chemotherapy

Following a lumpectomy, I was scheduled to have 12 weeks of chemotherapy. After eight treatments, I noticed “tingling and burning in both feet.” I brought this to the attention of MY oncologist.

He diagnosed the condition as peripheral neuropathy due to a side effect of chemotherapy and immediately discontinued the treatments.   Peripheral neuropathy is a chronic condition that will be a part of MY life for the rest of MY life.

(I move a little slower on feet that are continuously burning, stabbing, or freezing.  But, I am so appreciative for I am still able to walk.  Grateful.)

Third Incident – Orencia

For two years, after the Humira was discontinued, I relied on prednisone, plaquenil and weekly injections of methroxate to treat MY rheumatoid arthritis. MY rheumatologist and oncologist researched different medications looking for one to adequately treat MY RA condition without putting ME at “risk” for a cancer recurrence.  They both felt Orencia was the answer.

In late January 2010, I had the first infusion of Orencia at MY rheumatologist’s office.  The second one never happened.  One week later, I was hospitalized with a life-threatening case of epiglottitis.  The pulmonologist who treated ME at the hospital and MY rheumatologist agreed this newly diagnosed condition was due to a side effect of Orencia.

I left the hospital with a multitude of new diagnoses: asthma, bronchitis, chronic obstructive pulmonary disease (COPD), sleep apnea, hypersensitive airways, swallowing difficulties, vocal problems, and allergies.  All of these conditions are chronic and will remain with ME for the rest of MY life.

(Following such a serious and life-threatening illness, I still breathe.   Thankful for God’s Grace and Mercy.)

Fourth Incident – Methotrexate

Since the Orencia was no longer an option, the prescribed medications to treat MY rheumatoid arthritis are plaquenil, prednisone, and methotrexate. 

 I spent seven days in the hospital in late November, including Thanksgiving Day.  I was being treated for bronchitis.  Because bronchitis and other upper respiratory problems had been a recurring problem since 2010, the pulmonologist performed a bronchosphy. The results showed scarring on the lungs.  This newly diagnosed condition was related to a “side effect” of methotrexate. The medication was discontinued.

(Grateful for the many years, I was able to use methotrexate to reduce further joint degeneration associated with MY rheumatoid arthritis.)

Closing

With each “new side effect”, I faced a “new challenge.”  And, I am grateful for each of those new challenges for I was re-directed down a new path, which re-created a better ME.

So inspired to live life to its fullest, I gladly embrace MY latest “side effect”, the “Side Effects of Kindness”.  It’s AWESOME.

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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)

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