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A Day in the Life of a Fibromyalgia-Neuropathy Patient

Kenneth Avery is a Southern humorist with well over a thousand fans. The charm and wit in his writing span a nearly a decade.

Me, Kenneth Avery, displaying a sense of humor about my life's dilemmas in 2011.

Me, Kenneth Avery, displaying a sense of humor about my life's dilemmas in 2011.

How I Got Into Blogging

One day, my dear friend and very talented freelance writer Jody Kamins Harper of Dothan, Alabama, said to me in her creative and high-IQ voice, "Ken-NEE, uh, listen . . . why don't ya start your own blog? You can use blogging to vehicle your fantasies about Kathleen Turner, Penelope Cruz--but not together--and, uh, like it's great fun! Advertisers love bloggers if they are off-the-wall but somewhat sensible--and like, Ken-NEE, I say do it."

I love Jody's writing style and wish I had been blessed with it. She makes her items sound intelligent, an aspect I never learned when writing a column for our local newspaper The Journal Record managed by my good pal Les Walters. Walters is a multi-talented man. He's the best writer I know and a public figure, doing a lot of good for the Hamilton community. With a heated voice on more than one occasion, he told me, "You'd be a decent writer if you knew how to punctuate!"

So, these are the people who have influenced my blogging. The greatest impetus, however, is the fact I have medical bills to pay--lots of them. Maybe, just maybe, between my hidden, undeveloped talent and a few friends with their word-of-mouth support, I just may be able to release the worrisome burdens of skyrocketing medical costs.

The Fatal Diagnoses

From January 2003 for a year, I traveled to Tupelo, Mississippi, and Birmingham, Alabama to see every specialist available to learn why my body was hurting 24/7 and swelling like a Bambi helium-filled balloon. Finally, a knowledgeable intern at Kirkland Clinic in Birmingham diagnosed me as having fibromyalgia and neuropathy, a disease where nerve endings are irreparably damaged. My life was suddenly changed, and I was not able to work anymore.

Today, I stay home and do what I can for my wife Pam, who is a department manager at our local Walmart Super Center, and take meds seven days a week. Every three months I go to the Longtown Pain Clinic in Tupelo, Mississippi, for spinal injections to ease the intolerable pain.

I've become quite reflective as a result. With these grounds laid, I shall share my typical day.

Normalcy, Sleep, The Bible, and Coffee

What is truly normal? It's like the proverbial question, "What is truth?" Pilate asked of Jesus and would not stay for an answer (John 18:38, NIV). In other words, I have no idea how to define normal. I guess it's what one becomes accustomed to or comfortable with, a kind of a North Star upon what one bases his or her life for guidance.

Each morning I get out of bed--well, to be honest, I force myself, usually with the aid of an old-fashioned crowbar to get out of my humongous, comfy bed, that refreshing chamber where from 11:00 p.m. until 8:30 or 9:00 a.m. the next day, my mind (what's left of it) can recharge, regroup and, hopefully, arrange a positive and sensible thought pattern. I make my own bed, by the way, as I have no butler or pretty French maid.

After straightening, I have my morning devotional time to my Creator whom I adore but sometimes don't fully understand, especially about His plans for my life. Proverbs, Psalms, Isaiah, and the four gospels of Matthew, Mark, Luke and John, randomly read, anchor my soul into my crumbling body with the hopes that this failing structure can somehow be redeemed. This part of my day lasts 10 to 15 minutes.

Then, it's to the kitchen where I start the precise process of making coffee--Community Coffee from Baton Rouge, Louisiana--the only real coffee there is. I mean, who can beat a company that's been producing coffee since 1919 and places the joy of serving it's community first? That's great coffee!

Prescriptions, The Dan Patrick Show, and Facebook

My splendid joy over my morning coffee abruptly takes a nosedive when I face my medicine caddy, a clever contraption made of either American or Taiwanese plastic. This seemingly innocent, monstrous contraption holds my daily regiments of anti-depressants, painkillers, and mood enhancers, all pills prescribed by licensed doctors, supposedly to help me with my fibromyalgia. The facts regarding this disease are elusive.

Now I, for just a short time, watch what is supposed to be a sports-talk show called "The Dan Patrick Show." Patrick is formerly of ESPN in Bristol, Connecticut, but now owns his own studio in Milford, Connecticut, thanks to DirecTV. He dubs his backup crew, "The Danettes." I ponder over the feminine suggestion of the -ette suffix. My confusion over the all-men crew finally clears after consulting a dictionary. One final disappointment about Dan Patrick is that I have been unable talk to him via his phone number: 1-877-3DP SHOW. When I call this number, DirecTV answers and directs me to call a different number! (At that point, I get angry and hang up.) I've emailed Patrick several times at the address he broadcasts, and wouldn't you know?--he hasn't responded to one of my emails yet.

With around 45 minutes to an hour of this unfulfilling show, I turn off my Sanyo television and head to my workroom where I live on Facebook by talking to friends and freaks--believe-you-me, I've learned to stay out of politically based discussions!

Investment Dreaming, Woodstock, and the "Mayberry" of Alabama

My medications have kicked in by now, and I am feeling somewhat relieved. I think some of my meds cause my brain to send propaganda to my body and con it into believing that it's not really hurting. It's times like this when I wish I had some stock in Lily Pharmaceuticals. I'd become an anonymous philanthropist overnight--well, maybe two weeks. (Some roles in life take careful study.) In theory, I'd give thousands to banks and pay off other people's loans without them ever knowing what saint had relieved them of their worries--a Woodstockian idea!

Back to Lily Pharmaceuticals, this giant company was rumored to have given hundreds of dollars to some of the Woodstock performers as a brilliant public relations move. It apparently worked, as many rock-and-roll performers showed up without ever realizing they had.

Where are these music use-to-be legends anyway? I miss them. I have copies of Deja Vu recorded by Graham Nash, David Crosby, Steven Stills and Neil Young, along with Dallas Taylor and Greg Reeves. Woodstock was quite a time in our country's musical history.

Alas, I didn't get to go to Woodstock, mainly because I live in Hamilton, Alabama, a small town in northwest Alabama. Oh, we have inside plumbing and telephones, but people tease us about being the "Mayberry" of Alabama. While Mayberry has Andy and Barney ("The Andy Griffith Show"), we have a terrific sheriff, Kevin Williams. He's a level-headed, professional lawman--a rare and valuable commodity in today's society.

Naptime, Spicy V-8 Combo and Rock Music

Now it's the afternoon of my typical day. I've now begun to feel the soothing effects of my Prozac, Mobic, Avanza, and other meds and am tempted to take a long nap on the couch. As I have said, my wife works, so I'm alone at the house. She trusts me. Maybe that's a short-sighted judgment on her part, but I'm mostly alone except when two or three Jehovah's Witnesses come a-calling. They are really a nice lot of people who have taken bad raps over the years. On one of their visits when I had the flu, I told them nicely that I was satisfied with what Jesus did on the cross. They understood and politely left. Coincidence? No, just evidence of these people's goodness.

At the end of my naptime, I go to my refrigerator and look inside. Since I don't eat but one meal (supper, dinner to you city folk) per day, I drink lots of V-8 juice, the spicy kind. I like the way it burns my esophagus and stomach. Then I take a huge swig of A&W root beer in the 2-liter size. What a combo! (Try it sometime if you're not too into taking care of your body.)

I notice that it's now a little after 2:30 p.m. Time to log back onto Facebook and YouTube for more classic rock songs to be shipped to Facebook under my fictitious radio show: Golden Vault of Forgotten Classics. These rock classics trigger a dream of becoming a DJ that was crushed by the late Robert Owen, my former high-school guidance counselor. I've never really grown past that day in my life. Paul McCartney could write a song about my life and make millions.

Evenings

Evening brings the comfort and companionship of my wife Pam, home from a day's work. We share supper together, a truly Southern supper, that delights the stubbornest taste buds of a coot like me. I have shared some of the recipes of these mouth-water dishes in other blog articles.

Personal hygiene can be a challenge at times, but somehow I manage to plug through the motions of showering, pajama dressing, toothbrushing, and shaving. Nighttime meds chuck down my throat with some water.

Often my wife and I share a movie together until that golden hour, eleven o'clock, approaches. The sleep aids begin to go into effect and, once again, I crash into my humongous bed, that chamber where weary brain and body cells take a vacation.

I'm not bitter about my fate--not at all. I know there are millions of people in our world who are worse off than I am. Why does God allow me to continue to live with this condition? I will be sure to ask Him when I see Him face-to-face.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2011 Kenneth Avery

Comments

Kenneth Avery (author) from Hamilton, Alabama on September 26, 2020:

Dear Marie, Sept. 26, 2020, late. Very late.

I love your comments. Thank you for caring for me. I mean it in a good way, not a cheap, ego-building remark. No. I stay what is in my heart

Since this comment, I thank God that I have been blessed with

a dear friend like YOU.

Love, Me..

Marie Flint from Jacksonville, FL USA on August 19, 2020:

It has been a pleasure helping you with this article, Ken. I do see a couple of edits that I will correct shortly.

You have convinced yourself that most of your materials of the past are not worth reading. I disagree.

Keep happy, keep doing what you enjoy, and remember that each morning is a new day, fresh with no mistakes!

Kenneth Avery (author) from Hamilton, Alabama on July 03, 2012:

Thanks, my friend, junko,

I have to agree with you swiftly. I didnt like being confined and somedays I dont deal with it that well, after all I am human, but that one thing, "God isnt through with me," that applies to you too, my buddy. And together, "we" can do some "positive damage" to a dark world went mad.

Kenneth

junko on July 01, 2012:

kenneth, I thank God for the Internet. I think that after over 40 year of truck driving and interacting with people all over the country the solitary confinement of disability forced retirement,would be much worse for me. I'm glad you and I are able to speak encourageing words to each other and the world. God don't make personal appearances at this time, He use willing workers and we will live as long as he can use us. Iam glad He is not through with you ,kenneth.

Kenneth Avery (author) from Hamilton, Alabama on September 22, 2011:

Dear Nellieanna, YOU are so right on, my dear friend. Being a bit polite is far better than a lifetime of hate. I have learned so much since I have known you. Thanks is not enough to tell you how MUCH I appreciate how you think and how you express yourself. Thanks and bless you!

Nellieanna Hay from TEXAS on September 21, 2011:

:-) Thank you, Kenneth. You're right that we never know what others may have gone through or may be going through at the time. It's not everyday that folks have the opportunity or the inclination to share their "I stories". So we usually have no way of knowing how it really is for others we meet in our daily comings and goings.

I know I don't have to tell you, that's the most powerful reason to give others "the benefit of the doubt". If someone seems irritable or preoccupied, there are surely reasons and some of those reasons may be extremely intense. But even the more trivial ones are real to him at the time. If the person overslept, got a ticket trying to get to work on time, was late anyway and got docked for it, etc. etc - those may not be earth-shaking experiences, but as they were in progress, they were felt as 'downers' and when we run into the person later, he may still be recovering emotionally. So if he's a bit snappish, It can be a chance to help him get over it, instead of adding yet another irritation to his day by snapping back.

It takes so little to be pleasant instead of touchy, but somehow lots of folks get into a habit of jumping to negative conclusions and adding to the problems. Pretty soon everyone is at everyone's throat.

Just think what difference it would make if each person just chose to give others benefit of the doubt in daily interactions. Such a small thing with such great possibilities. Even if the person one encounters is really a dyed-in-the-wool grouch for no particular reason, "just because", still being nice to him might make some difference to him - and it definitely makes a major difference to oneself and one's own outlook and joy of being!

Kenneth Avery (author) from Hamilton, Alabama on September 21, 2011:

Dear Nellieanna, THANK YOU, DEAR FRIEND, for sharing with me, YOUR experiences with pain that is worse than mine. I never dreamed that you had went through something this bad. Like you said, we never know until we put ourselves into the other person's life, or footsteps, we will know what they are really feeling. You are a true 'rock' of encouragment and your comments uplift me each time I read your remarks. I do appreciate you a LOT! And I wish for YOU, a happy, fun, and peaceful day. Kenneth

Nellieanna Hay from TEXAS on September 21, 2011:

Lots of things come to mind to share, but you've stated it so well.

Though we can have empathy for one another, no one can truly, fully know what another person's experience is, - whether its joyful or painful. We can only try to put ourselves in the other's position and relate it to whatever we know of similar experiences and challenges.

One thing about it. The fact that one is alive means that there are changes, frictions and ups & downs. If not, it would just be static; and static is not alive. Life consists of change. It's not a secure experience. But what a wonderful one!

The downs may seem endless but there's some comfort in the awareness that change can and does happen and also that "sufficient unto the day is the evil thereof". Faith assures us that tomorrows can bring better things. And a day is only so long. Taken one by one, we can endure many things with a degree of equanimity. Also I believe that fully experiencing everything we feel and encounter has real value and makes us who we are. Doesn't make the pain any less, of course, but it gives one some power over it. True Grit.

I noticed this was your first hub and was honored to be the one to write a comment. As I mentioned, I'd read the other one in which you described the illnesses with which you must contend.

The nearest I can personally relate to the pain of nerve endings was when I was 25 and pregnant with my second child. My first was only a little over a year old when I became pregnant. My inlaws had come and stayed with us for months after he was born and had spoiled him so completely that he had to be held and carried around constantly or he really wouldn't stop yelling. They went back to Indiana and I was the one who finally got to hold him but it was on his little terms! My husband fully expected the baby to never cry and of course, I didn't want him to, either, though I would greatly have preferred to have trained him differently.

Between carrying him around all day and being pregnant, I developed such horrible varicose veins that for the last part of the pregnancy I had to put on surgical support stockings before I got out of bed in the mornings. I was not supposed to stand to do any chores. I pushed my son's bassinet with my foot while I sat to iron and cook, etc. The veins at the top were like clusters of grapes and quite painful.

Anyway - as soon as I gave birth to my daughter, I was rushed to the hospital for vein 'stripping'. There was no laser surgery then. They simply made incisions at the top of my legs in (the doctor's joke was that I wouldn't be wearing any bikinis for awhile) - and incisions in my ankles and feet, then they inserted some sort of a device into the veins from top to bottom to grab hold of the bottom ends of the veins and pull them out wrong-side-out, like a piece of spaghetti, my husband said. I didn't see them, but he said that he could see the little valves along the insides of the veins whose function it it to hold the blood "up" as it it circulating back from the extremities to the heart for new supplies of oxygen. He said they were just hanging loose and dangling, incapable of doing the job of holding the blood, so that it just collected instead of circulating as it should. In my right foot, the veins were so bad, it took 35 small incisions on the top of my foot to remove them.

But the long-lasting effects of this surgery resulted from the veins being torn loose from the nerves in the pulling out process and those nerve endings just hanging unattached, so that any slight pressure on my legs and feet was excruciatingly painful. For years and years that intense pain persisted, along with the still-present problem of blood circulation. And I had two small children and all the other duties of a wife in the the 1950s, plus a demanding husband.

Even to this day, those nerve endings are sensitive, though nothing like they were then, when - if my husband's leg happened to rest against mine in our sleep, I woke up screaming.

There was no follow-through medically. My children were born in military hospital in Waco, Texas, where my husband was stationed in the Air Force. He decided to get out of the A.F. almost immediately after these events and then we moved from Texas to his home state of Indiana, where I knew no one and was completely out of place. I spent 15 of the 18 years of that marriage almost as a hostage in a foreign land. For that and many other reasons, it was not a happy marriage. But there were many good things to come from it, including a lot of my poetry.

Anyway - perhaps that ordeal with my vein striplings is one reason I can greatly empathize with your fibromyalgia and why your daily ordeal seems so real to me, even though I am sure that yours is ALL your nerve endings, not just in some parts, and surely more intense.

I admire your courage and good spirits, Kenneth!

Kenneth Avery (author) from Hamilton, Alabama on September 20, 2011:

Dear Nellieanna, "THANK YOU, DEAR FRIEND, for this comment. I didn't know that at the time, anyone would ever read this hub, which IS THE FIRST hub I ever submitted. You are part of my history now for being the first person to read what I do five days a week. And as for the Fibromyalgia and Neurothopy, well, not even Jesus promised that life would be fair. I am learning to accept this physical, mental, and emotional pain as the weeks go by and realizing that there are people around me who are worse off than I--e.g. the children at St. Jude's Children's Hospital in Memphis. I could learn from them what gratitude really means. I am not going to sugarcoat this, but am I always this placid and philosophical? No. I have bad days and then worse days..but I DO HAVE DAYS...and can get out of bed. Thank you, dear Nellieanna, for your thoughtfulness and care. I am so glad that you and I are friends. God bless you and yours with love, peace, and happiness.

Nellieanna Hay from TEXAS on September 19, 2011:

Kenneth, I just found and read this and the other one about your affliction and I'm truly beyond speechless to realize the intensity of your daily ordeal with such distress.

You know that I liked you immediately when I first began to delve into your hubs after we began to follow each other only about 2 and a half weeks ago, obviously knowing very little about each other's backgrounds. I hope I haven't been insensitive, but what did I know? I can only say that you're even a more fantastic inspiration, now that I know a little more of yours. Thank you for sharing yourself so generously on HP, Kenneth.