Remarkable Journey: My Dual Perspectives as Doctor and Patient

By Bonnie J. Floyd Ph.D., PhD

This book offers a unique perspective on coping with chronic illness. It is written by a clinical health psychologist, who happens to have been diagnosed with multiple chronic illnesses.

Insights from the author’s dual perspectives, as both doctor and patient, are provided.

• Language: English
• Publisher: Balboa Press
• Release date: Nov 25, 2019
• ISBN: 9781982239091

Bonnie J. Floyd Ph.D., PhD

Bonnie Floyd is a licensed clinical psychologist, with a specialization in health psychology. She obtained her Ph.D. in Clinical Health Psychology from Albert Einstein College of Medicine/Yeshiva University, Ferkauf Graduate School of Psychology. Dr. Floyd has been diagnosed with multiple chronic illnesses, including MS.

Book preview

Copyright © 2019 Bonnie J. Floyd, Ph.D.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

This book is a work of non-fiction. Unless otherwise noted, the author and the publisher make no explicit guarantees as to the accuracy of the information contained in this book and in some cases, names of people and places have been altered to protect their privacy.

Balboa Press

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www.balboapress.com

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Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

The author of this book does not dispense medical advice or prescribe the use of any technique as a form of treatment for physical, emotional, or medical problems without the advice of a physician, either directly or indirectly. The intent of the author is only to offer information of a general nature to help you in your quest for emotional and spiritual well-being. In the event you use any of the information in this book for yourself, which is your constitutional right, the author and the publisher assume no responsibility for your actions.

Any people depicted in stock imagery provided by Getty Images are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Getty Images.

ISBN: 978-1-9822-3908-4 (sc)

ISBN: 978-1-9822-3910-7 (hc)

ISBN: 978-1-9822-3909-1 (e)

Balboa Press rev. date:    11/23/2019

This book is lovingly dedicated to my dear mother, Ivy Jedrzejek. Her complete selflessness has made my long-awaited dream of writing a book become a reality. I am very deeply blessed to have such a godly mother.

I also dedicate this book to my daughter, Kaitlin Holmes, who is painfully familiar with the challenges of coping with chronic illness herself.

Thanks to Jerry, for suggesting that I start writing a blog, which eventually became this book.

CONTENTS

The Journey Begins

F-A-T-I-G-U-E

Monday Morning

Less Than Twenty-Four Hours per Day

Turn Down the Heat!

But You Look So Good

Stress and Chronic Illness

Acceptance

Sorry, but I Need to Cancel

Medication Side Effects

Losses

Don’t Neglect Routine Screenings

Unsolicited Advice

Are You Still Sick?

Why Ask Why?

Comorbid Chronic Illnesses

Rise and Try to Shine

Too Sick to Keep Doctor’s Appointments

It Could Always Be Worse

Oh, I Feel That Way Too

Why Not Me?

Dangers of Comparisons

Satan’s Tic Tac’s (Prednisolone)

How Have You Been Feeling?

Take a Deep Breath

Maybe It’s Your Thyroid

Do You Mind Waiting?

We Found Something Suspicious on Your Scan

Yes, I Could Use Some Help

Unmeasured Lab Values

Patients Make the Best Doctors

It’s a Weighty Issue

Are You a Real Doctor?

Count Your Blessings

I Overdid It Today

Family Work Ethic

Just for Today

Why Are You Parking in a Disabled Area?

At Least You Don’t Have Cancer

Permission to Say No

Why Am I Still Surprised?

Applying for Disability

Disability Denied

Congratulations! You’re Disabled!

Disability Redetermination

Between the Extremes

Secondary Diagnoses

Chronic Illness and Appearance

Must Be Nice Not to Have to Work

All Your Medical Care Is Free, Right?

Disclosing Your Diagnosis

Going Backward

Having a Rare Disease

You’re a Doctor but Selling Ten-Dollar Necklaces

Online Support Groups

You Must Only Have Mild MS

Easily Overwhelmed

Depression Isn’t Always Sadness

Medi, Set, Go

Endlessly Spinning Around

Can’t Swallow This Dysphagia

Family Reunion

Thyroid Nodules

Crying So Hard I Can’t Drive

Wearing a Cast in July

Abnormal Pap Smear

Overachieving Immune System

Why Do I Rarely Get Sick?

Will I End Up in a Wheelchair?

One Step Forward, Two Steps Back

Returning to Work

Napping Isn’t Just for Kindergartners

Borderline Identity Syndrome

Don’t Scratch That Itch

Wheelchair Request at Airport

Before and After the Event

Just Sleep on It

Period of Hyperthyroidism

Going to the Food Pantry

Slurred Speech and Public Speaking

You Must Be Feeling Better

Showing Up Late

Paring Down My To-Do List

Sandwich Generation

Writing about Writing

Hair Stopped Growing

Unbelievably Cold

Optic Neuritis

Spasticity

Insomnia and Weight Gain

Periodic Limb Movement Disorder

Awakening in the Middle of the Night

Seasonal Affective Disorder

Unexplained Rib Pain

Filling in as Receptionist

Dropping Out of High School

Heat, Vitamin D, and Multiple Sclerosis

Bloom Where You’re Planted

First Copaxone Injection

Fighting for My Own Money

Oral versus Injected Methotrexate

Pacing Your Activities

Provider Burnout

Primary Care Physicians and Specialists

Illness and Identity

Chronic Fatigue Immune Dysfunction Syndrome

Importance of Distraction

Differential Disclosure of Diagnosis

Remembering What Your Mother Told You

Technology and Chronic Illness

Giant Papillary Conjunctivitis

Financial Stress and Symptom Worsening

It Could Always Be Worse

Permanence of Medical Diagnoses

Negative Self-Talk

How Do I Plan My Life Anymore?

Learned Helplessness

Not Playing It Safe

Glad I Took a Chance

Mother, Daughter, Granddaughter Challenged

CellCept and Moving Seven Hundred Miles

Thank You, Blog Readers!

Diabetes, Diagnosis, and Degree

Diagnoses from A to Z

That’s a Lot of Different Antidepressants

Your Mother Must Need Help

Recovering Perfectionist

Whac-A-Mole and Multiple Chronic Illnesses

Numbness and Broken Glasses

Will I Run Out of Things to Write?

Budding Health Psychologist at Age Ten

Terrified of Three-Minute Oral Book Report

Lumbar Puncture and Migraine

Normal Laboratory Values

So, You Think You’re a Chair?

Antibiotic-Induced Myalgia

Struggling to Get Going in Morning

Short of Breath While Speaking

Didn’t Want to Stay Home Sick

Our Culture, Disability, and Ageism

Oh No, Not Again

New Normal Keeps Shifting

Colorful Breakfast

Is It Really Worth It?

Why Hasn’t God Healed Me?

Even If I Were Healthy

Fight-or-Flight Response

Subtypes of MS

Resources versus Demands

Escape via Oil Painting

Maybe She’s Just Lazy

Experience of Being a Minority

Resilience

Motivation: Friend or Foe?

Landing on a Descending Staircase

Capabilities versus Limitations

What Type of Cancer Do You Have?

Numbers Everywhere

Internal GPS

Filter of Fatigue

Barely Made It through Class

Differential Etiology of Symptoms

Recycling through Stages of Grief

Co-payment for One Month of Medication Is $2,300

Beyond Weary

Less Is More

Energy Deposit versus Withdrawal

Depression and Fatigue

Tipping Point

Nothing Is Wasted

What’s Right with You

Insomnia and Sedative-Hypnotics

Medication Allergies

Just Take the Next Step

What Doesn’t Kill You Makes You Stronger (Plus Very Tired)

Facing Surgery Alone

Delegating Tasks

Human Being versus Human Doing

Observing Self-Mutilation

One Day (or Just One Hour) at a Time

Happy for Healthy Teeth

Hashimoto’s Thyroiditis

Thoughts on Suicide

Postdiagnosis Poetry

Inexpensive Forms of Entertainment

Crying Behind Closed Doors

You’re Way Too Smart for Us

Is Treatment Worth the Side Effects?

Hot Flashes from Hell!

Urinary Urgency and Frequency in MS

Buying Larger-Sized Clothing

Slowed Information Processing

Another Week Begins

So How Are You Feeling?

Passing the Test

Preparing for Medical Appointments

It Takes Time to Get Help

You’re Sure Looking a Lot Better

Where I Find Myself Today

Paperwork, Patients, and Patience

Working as Distraction

Thank You for Your Patience While Waiting

Long List of Things to Do

Accessibility

Take One Step at a Time

I’m Already Behind

Wish Others Could See My Struggles

Disappointed Again

Yes, I’ll Get through This

Way Beyond Weary

From Pear to Apple

Flexibility Required

Resentment Seeps In

Same Surgery for the Seventeenth Time

Back at the Doctor’s Office

Another Visit, Another Diagnosis

I’ll Never Be a Morning Person

Going to Extremes

Diagnostic Complexity

Not Keeping Up

Scheduling Appointment with New Specialist

Doubting Myself Tonight

Stress of Hidden Illness

Depression

Rigidity of Disability

Nothing If Not Flexible

Aggressive Throat Clearing

Irony of Illness

Risk of Disclosure

No Support Group for Rare Disorders

Dealing with Medical Errors

Personal Struggles Produce Greater Empathy

Realistic Expectations

All in a Day’s Work

Pain Instead of Painting

Utterly Miserable

Healing Power of Music

Creativity Is Therapeutic

I’m Okay If I’m Just Sitting

Trying to Distract Myself

Filling Out Forms

Airway Is 80 Percent Occluded

Treating One Problem Exacerbates Another

Grading Papers

So Unbelievably Weary

Thankful for Small Blessings

Sometimes Things Just Work Out

We Are All Here Temporarily

Pelvic Ultrasound

The Plot Thickens

Grading on a Curve

Waiting

Needing a Surgery Date

Tour of New Facility

Stress of Pretending I’m Well

Thankful for Test Results

Can’t Do It All

Losing Disability Benefits

Feeling Better, All Things Considered

Busy Week Ahead

Chronic Illness Doesn’t Take a Holiday

It’s a Beautiful Day, and I’m Just Resting

Can’t Believe This

Choices

Never Give Up

Narrow Has Become My Life

Billing for Psychological Services

Thankful for Distractions

Specialists I’ve Seen

Illness Interfering Again

The Countdown Begins

Struggling to Breathe

Another Sleepless Night

Thankful for Pleasant Distractions

What You See Isn’t What You Get

Presurgical Screening

Extremely Limited in Activity

Boredom of Recurrent Illness

Surgery Coming Up

Surgeon Running Behind

Surgery Is Over!

Pain Woke Me Up

Vomiting Blood Clots

Made It through the Night

Remarkable Lecture

Side Effects of Prednisolone

MS Symptoms Reemerge

Stress Incontinence

Rescheduled Plans

Leaden Paralysis in Legs

Thankful for Symptom Remission

Grateful for Employment

Increased MS Fatigue

Effects of Insomnia

Yesterday’s Lecture

To-Do List

Complexity of Clinical Assessment

Somatoform and Related Disorders Lecture

Three Hundred Posts!

So Very Fatigued

Overthinking and Insomnia

Temperature Dysregulation

Feeling Very Down

Electronic Note Submission

Attitude Is Everything

Eating Disorders Lecture

My Blog Has Been Read in Fourteen Countries!

Pulled in Every Direction

Happy November: Month of Gratitude

Public Speaking and Slurred Speech

Bittersweet Experience

Perimenopausal Confusion

What Might Have Been

Deeply Blessed, Deeply Challenged

Another Year Has Elapsed

Chronically Ill but Rarely Sick

Expecting Free Therapy

Essential Oils

Scheduling Endometrial Ablation

Hidden MS Symptoms

Restricted Disclosure

Impact of APA Accreditation

Similarities and Differences

Notes to My Younger Self

A Study in Contrasts

Vulnerability of Disclosure

Here We Go Again

Filling Out Forms and Waiting

Surgery Follow-Up

Another Year of Appointments

Tired of Being Tired

Giving an Examination

Emotional Reaction to Increased Symptoms

Pressure to Keep Up

Debilitating Fatigue and Reduced Speed of Information Processing

Learning Curve with New Position

Perils of Perfectionism

Challenges of Keeping Plans

Achieving Balance

Not-So-Chance Encounters

MS Fatigue and Stress

Showing Up Late

Multidimensional Fatigue

Feeling Sick When Chronically Ill

Yes, I’ve Caught a Cold

Pushing Through or Pulling Back

Identity Confusion

There Really Are No Adequate Words

Waking Up Tired

Bracing against the Elements

Staying Home to Rest

Malaise

Still Not Feeling Well

Missing Out

More Than Just Existing

Painting as Respite

Concerned about Reliability

Just Not Going Away

Thankful for Working

Giving Thanks

Need to Slow Down

Importance of Rest

Need to See the Doctor

Unexpected Medical Appointment

No Time to Not Be Well

Thankful for Unexpected Insights

Updated Test Results

Remarkably Blessed

Started Antibiotic

Only One Lecture Left

Fading Fast

How Time Does Fly

Impact of Choices

Can’t Do It All

Perspective Is Everything

Choose Your Focus Wisely

Parallel Process

So Very Fatigued

Nonrestorative Rest

Echocardiogram Today

Last Class before Final

Disorganization, Delays, and Disease

Fear of Getting Sick

Echocardiogram Results

Final Examination

Complex Follow-Up Appointment

Recent Doctor Visit Results

Behind on My Blog

Stress and Increased Fatigue

Familiar Fatigue

Trying Alternative Treatments

February and Fatigue

Competing Demands

Highly Motivated but Deeply Exhausted

Nonrestorative Sleep

I Have to Lie Down Now

Dual Appointments

Loss and Moving On

Managing Emotional Reactions to Increased Symptoms

Paradoxical Vocal Fold Movement

Social Phobia

Appearances Are Misleading

So Tired It Actually Hurts

At the Dentist

Realize I Can’t Do It All

Neurology Follow-Up Appointment

Here Goes Amantadine

Amantadine to the Rescue

False Energy and Overdoing

Weighty Issue

Increased Stress and Heightened MS Symptoms

Testing: One, Two, Three

Importance of Balance

Getting Sick While Chronically Ill

Irritated Eyes

Shortness of Breath Returns

Intense Itching and MS

Full-Time Illness, Part-Time Employment

Doctor, Daughter, and Caregiver

Unnecessary but Perfectly Persistent Guilt

Different Class, Same Symptoms

Feeling Down

Symptom Visibility at the Movies

Brand-New Month, Multiple Challenges

The Incidental Aneurysm

Explanations for Absences

Are You Still Dealing with That?

Going to Try CBD

Less Is So Much More

Stress-Sensitive MS Symptoms

So, What Do You Do All Day?

Are You Analyzing Me?

Lack of Self-Disclosure

Younger and Receiving Medicare

Worsening Stenosis and Fatigue

Juggling Multiple Chronic Illnesses

Keeping Plans While Impaired

I Know How You Feel

Decreased Frustration Tolerance

Definitions of Depression

Torn between Two Worlds

Have You Retired?

Please Just Listen

Illness Anniversaries

Tempted to Cancel Class

Better Than Expected

Waiting to Hear Back from Doctor

One Step Forward, One Step Back

Pausing Perimenopause

You Should Write a Book!

Empathy Is Tiring

Taking More Medication Than My Patients

Far More Views Than Visitors

Wishing for Warmer Weather

Showering and MS Symptoms

Gasping for Air

Not-So-Chance Encounters

When You Can’t Breathe, Nothing Else Matters

Inadvertent Deletion

Ennui of Chronic Illness

Just Getting By

How Much to Discuss Symptoms

Supporting Someone with Chronic Illness

GPS Re-correction

Trying to Distract Myself

Changing Your Trajectory

Missing My Former Self

Humiliating Symptoms

Chronic Illness Doesn’t Take a Vacation

Risking Vulnerability

And It Came to Pass

Illness as Identity

Where Would I Be Now?

You Don’t Look Sick

Competing Appointments

Pulled in Every Possible Direction

Amazed by Views

Chronic Illness and Change

Are You Better Yet?

Surgeon Is Running Two Hours Behind

Sobering ENT Appointment

Canceled Class

Best of Times, Worst of Times

Coping Strategies

So Very Weary

MS Symptoms Flaring

Insomnia

My Body Is Amazing

Stronger Than You Know

Nursing Home Identity

Setting Up Vendor Table

At the Movies

Moving Day

My Body Has Betrayed Me

Pseudobulbar Affect

Just Sleep on It

Multiple Current Health Concerns

Writing about Writing

Worsening Shortness of Breath

Iron-Deficiency Anemia

Importance of Distraction

Take a Seat

Moving, Medication, and Madness

Thirty-Nine Years of Illness

Fear of Getting Sick

Transferring Prescriptions

Illness and Feeling Attractive

Where Does It Hurt?

Depression and Denial

Just Getting By

3-D CT Neck Scan

Tax Season and Chronic Illness

Cost of Copaxone

Catching Up with an Old Classmate

Lower Back Pain

Gasping for Air While Getting Dressed

Chiropractic Adjustment

Patient with MS, Doctor with MS

Medical ID Friday

Invisible Symptoms While Shopping

Annual Physical with Primary Care Physician

Multifactorial Fatigue

Importance of Pampering

Social Media and Chronic Illness

Reasonable Accommodation for Student

Try to Rise and Shine

What Happened to My Body?

Shared Diagnosis with Patient

Fear of Progression

Quality of Life with Idiopathic Subglottic Stenosis

Busy Week Ahead

Thankful for Unlimited Calling Plan

Financial Stress of Chronic Illness

Managing Multiple Chronic Illnesses Is a Full-Time Job

Today’s Annual Physical

But You Look So Good

Medical Record Shuffle

Reinitiating Copaxone

Multiple Chargers

Getting Ready with Chronic Illnesses

Class Observed

The Road More Traveled

Heightened Mortality Salience

Today I Want to See a Therapist

Weekend Work Meeting

Insecurity of Adjunct Instructor

Preoperative Instructions

Never-Ending Health-Care Tasks

Pain in My Back

Conversation Overheard

Where Will I Be in Another Year?

Put Your Best Foot Forward

Reaction to Injecting Copaxone

Chronic Illness and Holidays

Nineteenth Surgery

Loneliness and Social Support

Pretending I’m Well

Groundhog Day

Postsurgical Status

Motivation versus Limitations

Pushing Through versus Pulling Back

Tuesday Surgery and Thursday Examination III

Dual Identities

Fragile Well-Being

Juggling Diverse Tasks

Visual Symptoms

How Are You Feeling?

Reversal of Misfortune

Another Week Begins

Behind the Scenes

Flexibility in Working

All-Too-Familiar Fatigue

Disorganization and Distress

Consultation with Gynecologist

Disclosure to Resident

Last General Psychology Lecture

Meeting with Associate Dean

Updating Résumé

Waiting for Biopsy Results

Suffering Observed

Return of Warmer Weather

System Overload

Discussion with Copaxone Nurse

Submitting Final Grades

Receiving Biopsy Results

Using Shopping Cart as Walker

Flurry of Medical Tasks

Postsurgical Follow-Up

Last General Psychology Class

Meeting with Associate Dean

Assisted Living Facility Meeting

Traveling with Chronic Illness

Appointment with Neurosurgeon

Back Pain and Endometrial Polyp

Weary of Chronic Illnesses

Seasonal Affective Disorder

Annual Eye Examination

Choose Your Focus

Eye Dilatation

Eventful Consultation

Forgot to Pack Amantadine

Consultation with Dr. Jones

Heat-Sensitive MS

Here We Go Again

Surgery for Endometrial Polyp

So Tired of Being Tired

Electronic Medical Record

What to Focus Upon

Wegener’s, Initially

Feeling Down

Imposter Syndrome

CHE Meeting with Buffalo-Area Clinicians

Using Disabled Bathroom

Feeling Exhausted for Twenty-Six Years

Possibility of Losing Disability Benefits

International Readership

Moving between Two Worlds

To Tell or Not to Tell

Additional Copaxone Reactions

Another Nursing Home

Breathing Freely

Crushing Fatigue and Concentration

Juggling Dual Roles

Back to Trazodone

Tired Beyond Description

Getting Started at New Facility

Struggling to Just Get By

Secrecy versus Disclosure

Keeping It to Myself

Too Tired to Talk

Frustration and Physical Pain

Doubled Dose

Fear of Failure

Contemplation of Disclosure

Extended Malaise

My Not-So-New Reality

Off to a Slow Start

Never Enough Time

Working with Publisher

Follow-Up with Neurologist

Neurology Appointment

Lower Back Pain

And It Begins Yet Again

The Unhealthy Health Psychologist

Multiple Medical Tasks

Increased Fear of Getting Sick

Parallel Process with Patient

Shrinking Social Circle

From Blog to Book

Trifecta of Misery

The Journey Begins

Sunday, August 18, 2018, 2:33 p.m.

This is my very first blog on WordPress! Thanks for joining me! I’m a clinical health psychologist who happens to have been diagnosed with multiple chronic conditions. I’m sharing my dual insights as doctor and patient. I wish to provide psycho-education about various forms of chronic illness, validate the experiences of others who are coping with chronic illness, and share strategies for successful coping with long-term medical conditions.

My most important goal is to highlight that my strong faith in God has been the single most important resource for coping with chronic illnesses that have turned my entire life upside down and inside out. I freely admit that I crave the catharsis of writing about how chronic illness has radically altered my life. I hope you find value in reading my posts.

F-A-T-I-G-U-E

Sunday, August 19, 2018, 10:03 p.m.

F-A-T-I-G-U-E deserves more than a little R-E-S-P-E-C-T. No pun intended, but I honestly feel too tired to even write this blog tonight. I have been diagnosed with relapsing-remitting multiple sclerosis (MS) for the past twenty-five years.

On a daily basis, I experience profound, incapacitating, debilitating, and indescribable fatigue. It is the single most difficult aspect of living with this chronic illness.

I’ve had multiple periods when MS temporarily affected my ability to walk, requiring the use of a wheelchair. Needing an assistive device offers validation of having a serious health impairment.

There is no such external marker for my fatigue. Outwardly, I look fine, even when I feel an overwhelming need to lie down and rest. This happens after the simplest of tasks.

I no longer pop out of bed, jump into the shower, and simply get dressed. The simple task of showering necessitates lying down to rest before I finish getting ready.

I feel like I spend my life in slow motion—no easy adjustment for a self-confessed driven type-A high achiever. Just this past week, I saw my neurologist for my six-month checkup.

I told my neurologist that I no longer am benefiting from my Provigil medication, which I take twice per day to manage my fatigue. Increasing this stimulant medication is not safe for me since it would increase my blood pressure. This is especially risky since it was incidentally discovered five years ago that I have a cerebral aneurysm.

I feel frustrated, discouraged, and anxious about losing the efficacy of the single most important weapon in my fatigue arsenal.

Monday Morning

Monday, August 20, 2018, 11:01 a.m.

So, what do you do? A loaded question for a healthy-appearing woman who happens to receive full Social Security disability benefits.

Being a patient is a full-time job. This is especially true when you have been diagnosed with several chronic illnesses, as I have. For example, here are some of my disease-related tasks today.

I am going to have a dilated eye exam to determine how MS has affected the health of my eyes. I’ve had several episodes of optic neuritis, resulting in temporary blindness, exclusively in my right eye. I’ve also had multiple episodes of treatment-resistant giant papillary conjunctivitis, so my ophthalmologist needs to check on the current status of this condition too. My neurological field test will also need to be rescheduled.

Later, I need to phone Rx Outreach Pharmacy to supply them with the correct code for reordering my Provigil medication; this is usually at least a one- to two-hour phone call due to being placed on hold and needing to reiterate the correct code for reordering a controlled-substance medication.

Medicare won’t cover modafinil, which I’ve needed to take twice per day for the past fifteen years. Consequently, I need to order this prescription through a mail-order pharmacy.

Later, I’ll swing by my pharmacy to pick up my injectable MS medication, Copaxone. Then I’ll need to do my pill organizer for the week, setting up my fifteen daily medications. I need to reschedule an appointment with my speech therapist to address a recent flare-up in my symptoms secondary to paradoxical vocal cord dysfunction.

I need to reschedule another adjustment with my chiropractor, having sustained injuries when I fell twice this past June. Perhaps I’ve left something out.

Less Than Twenty-Four Hours per Day

Tuesday, August 21, 2018, 9:32 a.m.

Of course, we’ve all heard the expression We all have twenty-four hours per day. However, I challenge this basic assumption for those who face the multiple challenges of living with chronic illness.

Our bodies consistently require more sleep than the bodies of those who are healthy, leaving us fewer hours in the day to accomplish what needs to be done. We fatigue more quickly as well as require frequent rest breaks. This further diminishes the amount of time at our disposal.

I remember being astonished when I came across the following statement: it takes five times more energy for a person with MS to complete a given task compared to a healthy person. Furthermore, I know I have struggled with feeling depressed as a result of my persistent fatigue; being depressed, of course, makes us feel even more tired too.

Add in the powerfully sedating effects of needing to take multiple medications on a long-term basis, and it’s rather amazing we even keep our eyes open! Everyone with chronic illness also experiences the effects of somewhat diminished energy as well as decreased task efficiency as our minds and bodies age.

If you happen to develop a short-term infection on top of being chronically ill, your energy level is further compromised. Just some thoughts about how the diminishing sand in the hourglass is different for those who struggle with persistent illness.

Turn Down the Heat!

Tuesday, August 21, 2018, 11:23 a.m.

I really think more people need to be informed about heat sensitivity in those who have MS. Increased heat and humidity temporarily worsen all of my MS symptoms.

The simple task of taking a daily shower is an excellent example: if I have the water too hot, I will inevitably experience decreased sensation in my legs. Sometimes this numbness is accompanied by temporary difficulty with walking.

Prior to having MS, I used to run in the summer, no matter how hot or humid it was. I enjoyed going for long bicycle rides too. I really miss those carefree days before my body betrayed me.

Now I must be extremely careful about how much time I spend in hot weather. If not, I risk having blurred vision, increased fatigue, numbness, impaired coordination, and dizziness.

Obviously, this heat sensitivity has always been challenging, but the difficulties increased exponentially when I entered perimenopause within the past year.

Having profuse hot flashes is uniquely miserable, as any middle-aged woman will tell you. Experiencing a sweltering hot flash when you have heat-sensitive MS is nearly unbearable.

This past June, such hot flashes induced total numbness in my legs, resulting in two serious falls. The first time, I fell face-forward on concrete! Facial abrasions, increased pain, and spinal misalignment followed.

This necessitated increased rest, pain medication, application of ice, multiple chiropractic adjustments, and a cortisone injection in my lower back. Two such falls in less than ten days urged me to discuss the option of hormone replacement therapy with my primary care physician.

No longer were my hot flashes simply uncomfortable; they were downright unsafe. I’m happy to report that I have had excellent results since I started hormone replacement therapy; although I still have hot flashes, they are not as frequent, nor are they as severe. Ladies, there are effective options for dealing with personal summers.

But You Look So Good

Wednesday, August 22, 2018, 9:13 a.m.

Appearances can be deceiving. As I’ve said before, it’s both a blessing and a burden to appear significantly healthier than you are.

In the absence of disclosing health problems, we tend to assume those who outwardly appear healthy are, in fact, healthy. Of course, this can work to your advantage, such as when appearing for a job interview or a first date.

I genuinely don’t want to elicit pity for my health challenges, but it’s difficult not to receive validation for how much more challenging everyday tasks are in the context of managing multiple chronic conditions.

Seeing me look relatively well at a social function is only part of the story: what’s missing is how I felt while trying to get ready for such an event as well as how I almost inevitably will pay later for participating in such an activity.

I continue to experience many symptoms of MS every single day, even when I look just fine on the outside. Just a gentle reminder that what you see isn’t always what you get.

Stress and Chronic Illness

Wednesday, August 22, 2018, 11:31 a.m.

Everyone experiences varying degrees of stress from multiple sources on an ongoing basis. Stressors may be minor inconveniences, ongoing irritations, major lifestyle changes, abrupt losses, or unexpected turns of events.

How we choose to respond to such stressors plays an important role in the impact they subsequently have on our well-being. Nevertheless, those who are forced to deal with chronic illness are uniquely challenged by adjusting to such stressors.

We simply do not have the same reservoir of physical, mental, and emotional resources that healthy individuals possess. In addition, chronic illness often severely impacts one’s ability to remain employed on a consistent basis; as a result, financial resources are also adversely impacted by chronic illness.

Consequently, the impact of any given stressor is significantly heightened by having a chronic medical condition. In turn, heightened stress levels notoriously induce increased levels of symptom severity.

This, of course, further enhances the perceived degree of stress that is experienced. Obviously, this induces a vicious cycle! It is important for everyone to learn how to better manage stress. It is critical for those living with chronic illness.

Acceptance

Wednesday, August 22, 2018, 1:36 p.m.

I used to view acceptance of my chronic illness as a sign of defeat, a passive resignation to all that being seriously ill forced me to lose. I’ve come to realize that continuously attempting to rebel against my illness-imposed limitations is ultimately my worst response.

Acceptance doesn’t mean I stubbornly lie down, allowing chronic illness to steamroll my life. It means I graciously find that gentle balance between the things I used to be able to accomplish and what I am now realistically capable of doing.

It is an ongoing daily process. Some days, I like to think I am successful in accepting my new normal. Other days, I realize I fail miserably.

I think we typically cycle through the stages of grief multiple times as we adjust to the complexities of chronic illness. Chronic illnesses themselves are anything but static; they frequently change in severity as time elapses.

Their symptoms often change in frequency, intensity, and persistence. Medical treatments themselves may induce an entirely new set of symptoms to which adjustment is necessary.

Superimposed upon all these changes is the aging process itself. Please be gentle with yourself if you are dealing with the challenges of accepting chronic illness in your life. If you are healthy, please practice patience with others who are not.

Sorry, but I Need to Cancel

Wednesday, August 22, 2018, 5:23 p.m.

Over the many years of dealing with chronic illness, I’ve lost count of how many times I’ve needed to tell friends, former friends, and family members that I’m just not able to make an event I sincerely planned on attending. Doing so has absolutely nothing to do with having changed my mind about wanting to go to any given event.

It just means my symptoms are notoriously unpredictable. Once again, they’ve reared their ugly heads. That’s one of the single most difficult aspects of living with MS.

On any given day, I never know what symptoms I am going to experience, how severe they are going to be, how long they will last, and what residual impact they may have. Obviously, this makes it incredibly difficult, if not downright impossible, to plan one’s life.

Some people understand this challenge, whereas others do not. Not being able to overtly see my symptoms makes it more challenging for others to be convinced I am truly unable, as opposed to unwilling, to take part in any given activity.

Having always prided myself on being a dependable, reliable person makes this reality even more difficult to accept. I certainly never chose to develop MS and its associated challenges. I honestly dislike disappointing others when I need to cancel on getting together.

Medication Side Effects

Wednesday, August 22, 2018, 7:18 p.m.

As anyone living with chronic illness can tell you, there is so much more to deal with than just the symptoms themselves of any given medical diagnosis. Frequently, multiple medications are required to manage chronic illness.

Such medications may be used to address the severity of individual symptoms or to alter the actual course of a disease. All such medications, of course, come with side effects. Not infrequently, such side effects are as troublesome as, if not more so than, dealing with the symptoms themselves!

Over time, we may find ourselves adjusting to medication side effects. If this is not possible, it might be necessary to change the dosage of any given medication. If such measures are not effective, it may be necessary to adjust to an entirely different medication. In addition, a new medication may be introduced to augment the efficacy of a prescription.

Medications may also be used off-label to treat symptoms. Over the course of many decades, I’ve needed to take dozens of prescription medications for multiple chronic diseases. This is a list of side effects I have experienced from taking such medications: weight loss or gain, debilitating fatigue, impaired coordination, blurred vision, increased susceptibility to infection, delayed wound healing, hair loss, unwanted hair growth, altered taste, nausea, vomiting, dizziness, headaches, breakthrough menstrual bleeding, injection-site reactions, depression, dry mouth, increased urination, skin lesions, itching, dry skin, decreased concentration, increased hunger and thirst, swelling, increased susceptibility to dental decay, increased sweating, insomnia, heart palpitations, increased or decreased appetite, urinary tract infections, spasticity, anemia, heightened sensitivity to sunburn, oral ulcers, migraines, skin peeling, fluid retention, lower-extremity swelling, abdominal cramping, diarrhea, constipation, insomnia, excessive sleeping, elevated mood, increased risk of developing cancer, altered menstrual cycle, and decreased frustration tolerance.

Most likely, I’ve inadvertently omitted some symptoms. If you happen to be challenged by the demands of living with chronic illness, please give yourself a generous pat on the back. Not only are you dealing with persistent symptoms, but you are faced with multiple side effects from attempting to treat those symptoms.

Losses

Wednesday, August 22, 2018, 10:09 p.m.

I find myself thinking this evening about the multiple enduring losses that accompany having a chronic illness. When symptoms are severe enough to disrupt employment on a regular basis, there is often a loss of career.

Depending upon the degree of importance that working has had in one’s life, this can induce a profound loss of personal identity as well as self-esteem. Unemployment, of course, is accompanied by lost earnings and reduced security about one’s eventual retirement.

When you are no longer able to work, there are also decreased opportunities for socialization with fellow employees. Loss of income is not infrequently accompanied by increased anxiety about being able to simply meet basic needs.

Experiencing chronic symptoms produces social losses too. One may simply not feel up to taking part in activities with friends and family members. Various sorts of relationships are strained and sometimes end in the context of addressing the myriad demands of chronic illness.

One of the most significant losses that accompanies having a chronic illness is the profound loss of control: reduced control over symptoms as well as their severity, in addition to reduced control over planning one’s schedule. I continue to mourn the loss of control over my own body’s abilities. At one point in time, I was very physically active, drastically thinner, and in great shape.

I must admit that most of the time, I previously took for granted the very abilities I cherish: being able to see, walk, and breathe. Chronic illnesses have taken away these basic abilities more than once over a period of several decades. I continue to mourn the specific way I thought my life would be at this point, including physically, socially, and financially.

However, I don’t allow myself to continue to dwell on such images. I instead actively choose to focus on my remaining abilities.

It is important to remember that such enduring losses have also been accompanied by multiple blessings: I’ve cut to the chase of what truly matters, I no longer sweat the small stuff, I’ve developed deep friendships with others who are similarly challenged, and I’ve been permitted the opportunity to rediscover my artistic interests and abilities.

Don’t Neglect Routine Screenings

Wednesday, August 22, 2018, 11:13 p.m.

Those of us who live with chronic illness are all too familiar with seeing a wide variety of medical specialists to manage the challenges of our persistent health problems. As a result, we can easily place routine health-screening procedures on the back burner.

However, no one is immune to developing any sort of additional health concern at any time. It’s always in our best interest to remember to schedule routine medical screenings: annual physicals and comprehensive metabolic profiles are essential. If health problems should be detected, it’s always best for them to be caught at an earlier, more easily treatable stage.

For women, it’s important to complete regular pelvic examinations, breast self-examinations, Pap smears, and mammograms. Colonoscopies, despite their unpleasant preparation, are also very important forms of screening for both genders.

I know I have personally required more than one gentle reminder to schedule my recommended mammogram. Even if you’re managing a chronic illness, take the time to schedule routine medical screening tests. Doing so may save your life.

Unsolicited Advice

Wednesday, August 22, 2018, 11:45 p.m.

I’ve recently been thinking a lot about the topic of unsolicited advice for those who deal with chronic illness. Over the course of many years of coping with chronic illness, I’ve certainly had my fair share of unsolicited advice.

I do believe that most of the time, people have good intentions when they offer their opinions about how best to deal with chronic illness. They do not want to see their friends and family members continue to struggle unnecessarily with ongoing symptoms.

Nevertheless, I’ll freely admit I have been more than a little insulted by some of the advice I have received over the years. Please do not suggest that my chronic conditions would be completely eradicated if I were to change my diet, becoming vegetarian or gluten-free. Although my general health is likely to benefit from such interventions, I’m not naive enough to believe that my symptoms (several decades in duration) will magically be erased.

Taking high doses of the megavitamins you just happen to be selling will also not eliminate my persistent symptoms. Sharing that cancer only exists in acidic states also doesn’t change my medical situation! I’ve received high doses of chemotherapy over the course of many years. However, I have never been diagnosed with any form of cancer.

Think about it: if the solution were that simple, I most likely would have stumbled across it at this point! I’m a bright, well-educated woman with a doctoral degree in the health-care field. Please be aware of the consequences when you offer what you believe to be the cure to those who are facing chronic illness.

It is not unreasonable to state that such unsolicited advice frequently blames the victims for their persistent suffering. It’s unbelievably challenging to deal with the multiple challenges of chronic illness. No one needs the additional burden of being made to feel personally responsible for his or her ongoing suffering too.

Are You Still Sick?

Wednesday, August 22, 2018, 11:48 p.m.

It still astonishes me how much difficulty a lot of people have with understanding the true nature of chronic illness. I’ve often said that our society is much better equipped to deal with acute illnesses as well as terminal conditions than with chronic forms of illness.

Most of us are familiar with the onset of an acute medical condition. We may feel miserable, but we take comfort in knowing that our suffering is time limited. Before I developed chronic illness, I remember the perceived agony of having a time-limited head cold.

Should any of us unfortunately develop a terminal condition, there are many forms of medical, emotional, and financial resources available to assist us with coping with an untreatable diagnosis.

Those who face chronic forms of illness aren’t permitted to benefit from either of the above scenarios: we deal with decades of symptoms, often initially enduring misdiagnoses; we are offered a wide array of pharmaceutical interventions that manage but do not eliminate our symptoms; and despite sometimes needing to receive toxic chemotherapeutic treatments, we’re never going to be told that we no longer have any given medical diagnosis.

Let that fully sink in. I am not sick. I am chronically ill. There is a tremendous difference. Stating that I’m sick means that although I’m suffering, I’ll eventually recover. Being chronically ill is nothing like this!

Honestly, the best-case scenario is that my symptoms will stabilize, and I won’t eventually develop a more severe degree of ongoing impairment.

Why Ask Why?

Wednesday, August 22, 2018, 11:52 p.m.

Over the years, I have frequently questioned why I happened to develop multiple forms of chronic illness. After all, both of my parents were very healthy individuals.

Neither of them struggled with any form of chronic illness as I was growing up. I frequently contemplate the negative impact of being heavily exposed to pesticides, having played outside often on the beef farm where I grew up in rural western New York.

I remember viewing the glossy yellow droplets of toxic pesticides that accumulated on the crops we raised. I frequently played outside in my sandbox during those long, hot summer months, with my loyal dog always serving as a faithful companion nearby.

I think about how western New York is notoriously known as an MS belt, given the disproportionate incidence of this chronic neurological disorder. I have two older sisters, one of whom also has been diagnosed with MS.

I experienced the normal range of childhood diseases, including chicken pox, measles, and mumps. However, I rarely missed attending school as a result of experiencing illness.

During tenth grade, I began to show multiple signs and symptoms of multiple sclerosis. It was unbelievably devastating. I would eventually be diagnosed with relapsing-remitting MS several years later, at age twenty-nine.

Honestly, I may never truly know why I eventually developed multiple forms of chronic illness.

Comorbid Chronic Illnesses

Wednesday, August 22, 2018, 11:57 p.m.

Many medical specialists will inform you that having one chronic illness predisposes you to developing another