Unfortunately, there is no known cure for fibromyalgia (FMS). Myriads of symptoms make it nearly impossible to narrow down the problem. Additionally, and the reason the cure is unknown is that researchers are uncertain what triggers fibromyalgia. Studies show that most patients have had some kind of traumatic event in their life, such as surgery, an auto accident, abuse or even living in a war zone. The pain can be triggered at any time.
In my case, there is not any real event that we can point a finger too. However, I can see several indications that I have been dealing with the pain of FMS most of my life. In 5th and 6th grade, I suffered greatly from what they called ‘growing pains” and I have always had curious scalp pain from wearing a hairpin or a hat. So Who really knows.
Is It Even a Disease?
Fortunately, in 2015 the CDC finally came up with a diagnosis code, declaring that Fibro IS a disease and that all these patients have not lost their minds. Without this code, doctors did not take the problem seriously. Diagnosis has been difficult because there are no markers to show that one has FMS. Patients have terrible pain but a cause is not found. Nothing shows up in an x-ray or in the blood work. It has been called the Invisible Disease. Doctors can only arrive at the diagnosis by the process of elimination.
For me, it took 6 months of extreme pain to finally arrive at Mayo Clinic for three days of lab work (drawing 16 vials of blood), x-rays, body scans, balance testing and more. These tests ruled out MS, Rheumatoid Arthritis (RA), Lupus, and other diseases.
Associated with Other Problems
Fibro likes to hang with a dozen other syndromes that all fall under the umbrella of Central Sensitization Syndrome (CSS). One can have several of these syndromes and likely will add more of them as time goes by. At this point, I have Chronic Pain Syndrome, FMS, Myofascial Pain Syndrome, and recently added TMJ to the mix. Along with these, we found later after reducing my steroid intake that I do indeed have RA.
Hope For a Cure For Fibro
Researchers have recently found some new markers and with a little more research it is possible that they may have found some indicators in the blood that are common to all patients.
If you would like to keep up with the latest news on FMS, follow my pain warrior & blogger, Donna at Fed Up With Fatigue. She reports on any important news in the field.
Thanks for asking;
This post was inspired by the Five Minute Friday Prompt: Unknown. FMF writers accept a new prompt every week and write for 5 minutes. No editing. Come read what others were inspired to write today.
Sometimes family and friends are not certain how to help the chronically ill handle the holidays. Debra Lyons offered to write a letter to you. Read on…
family and friends,
It is hard to believe that October is here and with that comes the anxiety of handling the upcoming holidays. I realize that we all experience some form of anxiety and pressure when the holidays come along. But the anxiety, I am referring to is not caused by last-minute shopping or not being able to find the perfect gift. It’s a result of being chronically ill and not knowing what to expect from one minute to the next. This makes all the planning that goes along with the holidays quite stressful and emotional for me.
Don’t take that the wrong way. I want nothing more than to…
spend the holidays with you,
visit with family I may not have seen for a while,
take pictures that will save memories that most likely my foggy brain won’t retain itself,
stay long enough to enjoy dessert and
bask in all the glory that the holidays used to mean to me.
Handling the Holidays Is A Fight
But I fight my body every day and I fight even harder on holidays because I don’t want to disappoint you and, I truly don’t want to miss spending the day with you. I love spending time with you and when I am around you and others, I try to be the me that you remember. I try to put on a happy face, smile, laugh and enjoy my time with you. You have no idea how much effort is put into pulling that off.
Every day I am in pain, it’s just the degree of pain that changes. Some days I can’t even dress while other days I can be self-sufficient. It takes me hours to get ready because I must take breaks in between every act I perform.
you get the idea.
And then, of course, there are those days, no matter how much I think I am up to the challenge, I simply cannot will the strength to make it out of the house. I’m not complaining. I love to be with you, and I do appreciate the invitations so please don’t stop inviting me. I may have to say no on occasion but please give me the opportunity to say yes to that one moment I can get together with you. I truly don’t want to miss it! See Shona’s letter about Getting Ready for Church.
And please, don’t tell me NOT to bring anything to your house.
I don’t want to feel like there’s something special or so frail about me that I can’t pick up a bottle of wine or make cupcakes. It may take me a few days to get to it, but I CAN do it! And if I must buy the cupcakes, well, it won’t be the end of the world. There are many things that I am no longer capable of doing but still so much that I can do, using the coping tools I have learned, and I ask that you let me decide what I can and can’t do. Just ask me. I have had to learn to be brutally honest with not only others but myself. “No” has been the hardest thing to learn, but I would like to be the one to decide what is too much for me.
Grieving my Losses
I’m reflecting on last Thanksgiving. I made it! And it was so good to see everyone. I felt so bad that everyone went through so much trouble to make me comfortable, but I ended up having to leave early. At home, I have so many tools to ease my pain and make me comfortable. And for me, when I am feeling ill or in pain, there truly is no place like home. It has no reflection on you or your home. It’s often difficult to handle the holidays.
I don’t know about you, but even if I only get to spend an hour with you, the memories that were made in that hour are very precious to me. I spend a lot of time alone, so I make an extra effort to get to these get-togethers. We have been doing them for so many years and some of our loved ones have gone onto a better place and we remember and celebrate them during the holidays while we are all together. There’s mom’s biscuits or your mother’s stuffing recipe.
These are moments that are so precious to me. I don’t want to miss them, and you can bet that if I do, it’s because I lost the battle, temporarily, with this body of mine. I think about when the kids were little, and I would run out after work to do some secret “Santa” shopping before I got home. I could be going for hours hopping from store to store and still get home and make dinner. Now I do most of my shopping online and meals are often, take-out. See Mandy’s Pain Comes for the Holidays
Making the Holidays Less Stressful
I hope that having some of the information I’ve shared with you will help us all handle the holidays. I appreciate you for taking the time to read my letter and for trying to understand what is often difficult for me to understand myself. What I do understand is that even though our visit may be short, and the efforts I had to take to get to you can be quite painful, if I can make it, I’ll be there.
I care about all of you and I thank you so much for your compassion and understanding as we handle the holidays together. While those looking in at my life from the outside may see a broken woman, I see me as I’ve always been, just with a broken body. And I am thankful and truly blessed to have the love and support that you all have shown to me.
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.
In the following paragraphs, I would like to share a few of the things that caught my attention about the life of Mallory Smith.
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.
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,
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.
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
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.
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.
Welcome to June’s Legacy Link Up! But First, Read Stacey Shannon’s account of a legacy of love. Link-up at the bottom.
By: Stacey A. Shannon
Catch Me When I Fall
One of my first memories of my dad is of him catching me. I was an accident-prone child. In the first five years of my life, I broke a bone each year during the most ordinary types of things. When I was 5, I fell off a big wheel and broke my right arm. It was the worst break of them all. I remember not long after, I had a big plaster cast on my arm and started to fall again – this time into the picnic table outside. Just before I hit, strong arms stopped me.
Throughout my entire life, those strong arms have been there to support me. Only now as an adult do I even begin to understand the sacrifice and strength behind my father’s love. My dad has always been a quiet guy. Growing up, he didn’t talk all that much, and he also didn’t smile all that much. He worked long hours. I just thought that was his personality. In middle school, I started learning more about his story. My dad, who had been drafted into the Vietnam War, was battling with PTSD.
Vietnam War & PTSD
I did lots of research about the Vietnam War and PTSD as a college student. As a magazine major, I had the freedom a few times to pick article topics, so I interviewed other veterans about what they had faced in the war and afterward. I heard snippets here and there from my parents, but not all that much. My dad also didn’t want to talk about Vietnam. It was a topic that was mostly off limits.
What I learned most from my research is how strong my dad really is. While I knew his physical strength, I didn’t quite understand his mental strength until I did research and talked to other veterans.
Dad Paid a Price
I didn’t know as a child the price my dad paid when we went to see fireworks each Fourth of July. I didn’t know how much energy it took for him to show up at every single school event in the midst of all he was dealing with. I didn’t know how much effort he had to put forth just to function and be a dad and husband.
I Never Doubted His Love
Of course, he wasn’t perfect and had his flaws. But never once in my life have I doubted my father’s love or his support. Not one single time. I nearly lost him when I was in my mid-20s. He had complications from injuries sustained during a motorcycle accident. It’s been 15 years since then and I continue to be grateful for every moment we have together. I am grateful to be able to see him love on my children, who were born a few years after his accident.
Almost Lost Him
His accident gave him a second chance on life. He was able to be freer from his PTSD struggle than he has been since he returned home from the jungle. He still deals with effects of PTSD, but he smiles much more easily these days and talks more often. He plays with my children, my niece and nephews and loves them fiercely, just as he always has my brother and me.
Legacy of Love
In the midst of pain, my dad has created a legacy of love. His love helps me understand the sacrificial love of my heavenly Father. I see the sacrifices he made (and know there are plenty I know nothing about) to love his family and provide for us in every way even when it was costing him significantly.
That love is what I want to pass on to my own children. I don’t struggle with PTSD, but I have my own challenges through chronic health problems. I hope and pray my children will never doubt my love or support, just as I have never done with my father. That is a legacy I want to pass on for generations to come.