Salt in my Soul

Cystic Fibrosis – The Good, The Bad and the Ugly

What is Cystic Fibrosis (CF)?

Cystic Fibrosis is a chronic genetic illness that affects many parts of the body. It operates like this: A defective protein caused by the cystic fibrosis mutation interrupts the flow of salt in and out of the cells, causing the mucus that’s naturally present in healthy people to become dehydrated, thick, and viscous. This sticky mucus builds up in the lungs, pancreas, and other organs, causing problems with the respiratory, digestive, reproductive endocrine, and other systems. In the lungs, the mucus creates a warm and welcoming environment for deadly bacteria like Pseudomonas aeruginosa and Burkholderia cepacia. The vicious cycle of infection, inflammation, and scarring that comes from the combination of viscous mucus and ineradicable bacteria leads to respiratory failure, the most common cause of death in cystic fibrosis patients.

It’s progressive, with no cure, which means it gets worse over time. The rate of progression varies from patient to patient and is often out of control.

Salt in My Soul: An Unfinished Life by Mallory Smith, page x

I have a cousin with CF. So when I was asked to review this diary of Mallory Smith, I was glad to read it in hopes that it would help me understand more about what Andrew deals with on a daily basis. I have a chronic illness as well and I know that most people just don’t get it when you talk of pain or not being able to do everything you desire to do.

Salt in My Soul: An Unfinished Life definitely opened my eyes to the “good, bad, and ugly” of CF. Young Mallory Smith kept a journal beginning at the age of 15 until her death at the age of 25.

What a trooper she was. She at most times had a very positive outlook on life and didn’t let her diagnosis define her.

For me, it was a hard read feeling her pain and realizing that I didn’t know the half of what my cousin faces. I could only read one or two entries at a time. But it was worth the read.

 

If you ever wonder what having a chronic illness is like, read a patient's diary. #saltinmysoul #cysticfibrosis #chronicillness Click To Tweet

The Good, Bad, and Ugly of Cystic Fibrosis

In the following paragraphs, I would like to share a few of the things that caught my attention about the life of Mallory Smith.

The Good

Staying Active is a Plus

Mallory was able to stay very active for most of her life. When a patient is able to do this it is helpful for their lungs and other organs. She loved playing volleyball and swimming. Fortunately, she lived near the ocean which made her feel alive. Her parents were able to take her to Hawaii several times in her life.

From her diary,

Ever since my parents threw me in the water at age three, the ocean has been my escape, my passion, and a powerful healing agent. I’ve always faced complications of cystic fibrosis, from malnutrition to frequent and aggressive pneumonias. For years, I’ve had the unshakeable sense that being in nature ( specifically, the ocean) somehow heals me. Clears my lungs. Prolongs my life. Maintains my sanity. Restores my soul.

My intuition was right. While I was swimming, surf, and fighting CF; researchers in Australia were discovering what I always knew; CF patients who frequent the ocean live longer- ten years longer.

Salt in My Soul: An Unfinished Life by Mallory Smith, page 101

A Positive Attitude

I have to remind myself not to envy those whose lives look normal because their mountains do exist, even if they’re less obvious than mine.

It’s given me empathy, and gratitude, and courage, and humor, and heartache, and happiness.

Salt in My Soul: An Unfinished Life by Mallory Smith, page xiv

Mallory had a very positive attitude, always appreciative of those who cared for her. At times she hated that she was dependant on them. Sometimes she felt sad or guilty that her family gave up a lot to help her live. When she thought about death she seemed more concerned about how those she would leave behind might feel.

Mallory didn’t let CF stop her. Her love of nature and how healed her caused her to want to make a difference in the environment. She attended college and did studies about saving our universe.

The Bad

Risk of Opioid Addiction

Chest pain is a real issue for the Cystic Fibrosis patient. Even the treatments themselves are rather difficult. I have watched my cousin apply treatments on his son. Beating and vibrating the chest to loosen the mucus. But I’m sure the real pain comes with the infections and pneumonia. Mallory wrote one time that she never thought she would love the feeling of being on opioids.

I never thought I was at risk before. But now I realize it can happen to anyone and I need to be careful and I’m happy the doctors don’t want to send me home with oxy. They say if I have pain that severe, I should come to the ER. It’s a valid point.

Salt in My Soul: An Unfinished Life by Mallory Smith, page 142,

Scheduling at Home Treatments

Often Mallary would need to have nurses come to the house to give her treatments or change her PICC line. Scheduling these in a timely matter sometimes became a challenge. The nurse would not have the right supplies and the pharmacy would want to supply them (you know insurance issues we all have). But in her case,

Managing Medications

As with many, chronic illnesses, one medication doesn’t continue working all through your life. Medications constantly need tweaking or changed completely.

During her college years, Mallory participated in a drug trial. She never knew if she took the real drug or the placebo but one thing she knew, she felt much better when she was on it. But then, an infection caused her to be removed from the trial. She begged her doctors to allow her to stay on the drug but it was not to be.

Ugly

Cystic Fibrosis Does a Lot of Taking

Mallory missed a lot of classes and would often head to the hospital right in the middle of a project or a great stream of athletic accomplishments. This could be very frustrating. The constant changes in life, due to hospitalization, found Mallory convincing professors and coaches that she needed more leniency than the typical student.

..It’s hard to look forward when we must always be looking at the ground beneath us; we’re more lurching than walking, stumbling to stay upright.

..

Being frustrated and angry that something was taken from you hurts creativity, the very same creativity that could help you reinvent your possibilities and achieve your ends. understanding this trap is important-knowledge is power.

So yes, CF does do a lot of taking. It’s a complex, unpredictable, irreversible, progressive, painful, suffocating, choking weed of a disease and it’s okay to have it.

Salt in My Soul: An Unfinished Life by Mallory Smith, page xii

Losing Friends

Mallory shared how she became friends with other CF patients. It was good on one side that they could relate to one another’s issues and encourage each other. They had a whole second family within the health community. But it was also painful to watch her friends die. Most of us don’t have that trauma in our twenties.

My Final Thoughts

It’s been a long, long time since I have read about someone’s life who did not know Jesus Christ as their Savior. While Mallory had a beautiful spirit and a zest for life, she did not believe in the existence of God. To me, this was the core thing missing in her life. Her grandfather, apparently Catholic, discussed the existence of God and faith but Mallory chose her own path. This makes me sad because while she felt free here on earth, I must wonder if she is free now.

On Atheism

Typically, an atheist denies the existence of God. Whether they admit it or not they feel anger toward God for allowing bad things to happen or that they feel God restricts them from their own choices.

According to the Bible and my own faith, God is a God of love. So much so that He does allow us to make our own choices. The problem with free will is that our choices not only affect our own lives but others as well. Therefore, our decisions create pain in the lives of others and vice versa.

The good part is that God warns us of the consequences of our sin and He gives us second, third, and more chances to make things right with Him. But our choice stands.

In the end, He will be a just God. If you chose to live without Him in this life He will allow you to live without Him in the next.

Need Some Convincing?

I pray that whoever reads my words have made the right choice and if not that they will study it further. I suggest reading some of C.S. Lewis’ books. His autobiography, Surprised by Joy, would be a good place to start.

Lewis called himself a reluctant convert to Christianity. Meaning that he fought against converting until there was just no denying that God existed and had a plan for his life. Alister McGrath wrote a wonderful book set up like a conversation with C.S. Lewis. McGrath, also an atheist, converted to Christianity after attending college to learn and prove the non-existence of God. Along with other books on Lewis, he wrote If I Had Lunch with C.S. Lewis. I think you would enjoy this read.

May God Bless You Richly,

Mandy Farmer
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MY REVIEW OF THE ABOVE MENTIONED BOOK, If I Had Lunch With C.S. Lewis, CAN BE FOUND HERE.




Cancer What's Lacking

Cancer: What Can a Friend Do?

I lack the words to tell you the effect this weekend has had on me. I went to visit my dear friend, Debra at the nursing home. She is fighting Stage 4 Brain Cancer. Besides the chemotherapy and some kind of radiation cap that she had to wear all the time, Debra has had two brain surgeries to try to stop the swelling and the growth of cancer. The doctors give her less than six months to live.

I entered the nursing home at the far end of the facility. It was a long walk down to Debra’s room but it gave me a chance to see the whole facility. It all looked nice. I was comforted to see that she was in a clean facility. There were seating areas everywhere and visiting rooms and dining areas. There were wonderful helpful workers all along the way. My hat is off to the nursing staff that works with these precious people suffering from such debilitating diseases. I am thankful for every one of them.

I could give you a discourse of the next two hours but for my friend’s sake, I’ll just share a few things I have found lacking as I go through this trial with my friend. I’m just a bystander in this matter. Although, being a pastor’s wife, I have gone alongside many time.

The Greatest Need is Support For the Caregivers

My husband and I found that what is really lacking is support for the caregiver. Awareness is rising of late but we really need to become more aware of people with chronic illness, cancer or not. I would like to see churches create a team of people that make sure our sick do not fall through the cracks. Sadly, the sick become “Out of Sight: Out of Mind”. I recently read this article about How Can the Church Better Serve Chronically Ill by Shona Smith. Shona had some wonderful advice for churches. Even the sick could take this information and share it with their chur leaders.

The Caregiver is Lost and Alone

We have found that outside of caring for their loved one, they are also holding down a job, trying to keep the house/family together, dealing with financial issues, and they often are completely ignoring their own health. I recently read Sarah Beckman’s new book Hope for the Hard Places (my review here) which gives excellent step by step advice for when trouble comes our way. Many of us would do ourselves a favor to read this book and prepare our own families for the inevitable Hard Place.

My friend Anita Ojeda has experienced caregiving for her husband who had cancer and survived. There are many things she learned along the way and after the fact. She is now trying to encourage caregivers to take care of themselves. You will find her website, Blessed: But Stressed, very helpful. There is also a facebook page, Self-care for Caregivers.

What is Lacking for Cancer Patients

  • Core friends that stick around. We’re all guilty of this. The first month we do whatever we can for the patient and family. But somehow we tend to fall back into our routine of life and completely forget about our friends. Let’s admit it, I am guilty. You may be guilty as well. We need to be calling or dropping by frequently, doing simple household jobs, cooking a meal, etc. I have a downloadable list of ideas to get started on. The aforementioned author, Sarah Beckman has another book called, Alongside: A Practical Guide for Loving Your Neighbor in their Time of Trial. I haven’t read this one yet. But possibly, we all could learn a few things from her book.
  • Prayer. Real true “I see it and feel it” prayer. Facebook is a place to start where you can tell them you are thinking of them. But we need to visit them and pray over them. Call them and pray with them over the phone. I had a friend once that rose early every morning before work and walked around a friend’s home praying for them. Every day for months until her death. Now THAT is visible prayer.
  • Encouragement through cards, flowers. Debra’s room was not only dim but void of cards. Again, I’m guilty as I have not sent her one card. 🙁 There was one small flower arrangement and that is it. (live flowers might not be good, as some patients cannot handle the smells.) I would like to get a card shower going and have everyone I know sent her a card. If you want to get involved send me a note through our “contact us”. I’ll send you an address.

Other Great Things Lacking

  • Providing other needs. If you visit on a regular basis, take notice of needs like is she cold? Does she need a blanket? Drinks and snacks so they don’t need to buy them? Don’t go empty-handed when you visit. grab a bag or basket and place a few ready to eat items in it. Maybe a book to read or puzzle books. You can get many items like this at a dollar store. Speaking of blankets, I know of two churches that make quilts to send to cancer patients and others. I received one when I first was hit with chronic pain. Not only does it keep me warm, but it also encourages and reminds me that someone cares.
  • Lastly, and importantly, an illness like cancer is terribly expensive. Even with great insurance, the bills begin to rise beyond what a person can fathom. And just when you think you have a way to figure it out, there is another surgery or issue that arises. In Debra’s case, they are still trying to get hospice care or a way for someone to sit with her and tend to her needs. This comes with a $250/day copay. Think of it, where would you be if this were you?
caregiversprayer
Photo Credit: Rena Raines Monholland @Caregivers Prayer Page

Here’s my challenge

I imagine we all know of someone who is struggling with a serious illness. Donate to their cause, even if it is just $10. Maybe you can add it to your monthly budget. Just 10 bucks. Give up a cappuccino. You will brighten their day and make a difference in their lives. Imagine if everyone would give just $10. The bills would be taken care of quickly. Find their GoFundMe page and donate today.

Don’t Forget The Least of These

Cancer and Chronic Illness Patients are Out of Sight Out of Mind. Don't Forget them. Click To Tweet

Thanks

Mandy Farmer

If you don’t know of anyone to donate to, here is the link to my dear friends, Paul and Debra’s GoFundme.

What a friend to do
photo credit: Truthseeker08 @ pixabay modified by Mandy

How to Find Hope in the Hard Places

hard places book
image provided for Sarah Beckman

I was given a copy of this book in exchange for an honest review. I am not being paid to write this or being told what to say.

There’s nothing like reading a book that you wish you had earlier but then realizing the Lord directed you to survive in the very way the author has suggested. That’s what I found in Sarah Beckman’s book, Hope for the Hard Places. That is exactly what happened to me.

Our family has had our share of hard places: chronic pain, job loss, bankruptcy, grief, You name it. Sarah offers some definite steps in how to handle a crisis. And everyone, one time or another, will need this guide.

If you are in a hard place, this book is for you. It’s a beautiful guide to making it through the worst of times whether it is from grief or sickness or any other trial. If you need encouragement, go ahead and read the last chapter.
Then start from the beginning and read IT through. This book is filled with practical advice along with the spiritual. Trust me you will be glad you picked this one up.

Everyone will need this guidebook sooner or later. Buy it today, get bonuses. #hopeforthehardplaces #pastors #grief #cancer #chronicillness Click To Tweet

Sarah will tell you how to place the right people around you and what you need to have at your access. She will offer you great ways to get what you most desperately need in your own time of crisis. This book will help you deal with words that hurt and friends that disappear. Sarah will also help you look inward to change impossible expectations and how to give yourself grace when you fail to rise to your own expectations for yourself.

hard times without missteps

Most importantly, she talks about your own soul-care for this, to me, is the most important thing you can do in a crisis because as the scriptures say,  “For what profits a man if he gains the whole world but loses his own soul” (Matthew 16:26) I’ll let you get the whole explanation by reading the book yourself but here are the steps in a nutshell.

5 Steps of Soul-care during a Crisis

  • Listen to God – Ask “Why me?” but also “What now?”
  • Be Honest with Trusted Friends – tell them what you need
  • Trust God without any Expectations – He sees you & knows what you need
  • Choose Joy – A positive outlook makes all the difference
  • Spend Regular time in God’s Word – Cindy Barnes recently wrote this about regular time with God here on the blog.

Get bonus products by ordering today ~ LAUNCH DAY, March 5th

Hope for the Hard Places

There is so, so much more in this wonderful guide for the hard places. Please go get your own copy to read and keep on your shelf. Trust me. You or someone near you will need it soon.

The Perfect Guide for When you are in Hard Places. #grief #cancer #chronic illness Click To Tweet

And Hold on to Jesus, He’s got this.

Mandy Farmer

P.S. Free Resource – How Can I Help

I wrote about how How you can Help Others when they are in crisis. There is a free resource there.


You may also like Sarah’s book, Alongside which guides you to come alongside a friend who is in crisis.


Mayo Clinic – How Healthcare Should Be Done

HEALTHCARE UPDATE 2021: Mayo Clinic ranked No. 1 hospital in the nation by U.S. News & World Report – Mayo Clinic News Network

Inside the Doors of Mayo Clinic

As soon as we entered through the doors at Mayo Clinic, we felt peace and hope. We had never experienced anything like the atmosphere and the love and care we felt when we arrived.

When we turned the car onto the campus we felt peace. We saw beautiful landscaping with trees and flowers and water fountains as we drove onto the campus. We drove right up to the building we needed to check into.

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