How do you start to explain to someone, anyone, what it is like to live with pain 24 hours a day seven days a week? Most people know what pain is, at least they think they do. So, when you mention a little ache or pain they agree with you, “Oh yes, I know how you feel.” But, they don’t know how you feel and you know they don’t know and if you are a caring person you hope they will never have to know.I’ve been in pain most of my life and just assumed everyone else had the same kind of general aches and pains. I remember the doctor injecting cortisone in my back when I was about fourteen years old. So pain was a normal thing for me. I would take a few aspirin and go on with the chores before me. That’s what I thought everyone did. In my early 20’s shortly after the birth of my first child the pain in my back became much worse, and I began to notice tender spots on my body that felt bruised but there was no evidence of bruising. Then, after the birth of my second child the tender spot in the lower region of my back near the tail bone became untouchable. I would have lots of aches and pains and normal anti-inflammatory medications wouldn’t touch the pain much anymore so the doctor would give me something a little stronger for those times that were hard to manage. I gave birth to two more children and after each pregnancy the overall pain in my body was worse than before. But I thought it was something you just worked through, and I was determined to be the best wife and mother that I could possibly be. In 1983 a car accident sent my body into more bouts of pain that wouldn’t go away.
I have devoted myself to being a wife, mother, gospel singer, bible teacher, sales associate and caregiver.
I have worked full time while taking care of four children, an incontinent, invalid grandmother and still made time to study and teach a bible study every week, keep my house reasonably clean and have dinner on the table most every night. Somewhere in all that I even ran a state licensed day care and became a foster mother to an abused, neglected teen with a substance abuse problem while still finding time to spend two years in an elected position on the city council. Was I “Super mom?” Of course not! But I loved every minute of my busy life. I was just living the life that so many other normal mothers and fathers live every day.
I knew my pain was progressing but just considered it part of growing older and being overweight. At least that is what the doctors kept telling me because every test they did on me came back all “well within normal range.” Their answers to every ache and pain I had was always, “Lose fifty pounds, and I’m sure your pain will go away.”
I began a rigid program of low fat eating and walking almost four miles a day at least four days a week. The weight began to fall off but during and at the end of each walk the pain was so excruciating that I would have to take pain medication and fall in bed. Once I would sit down it was almost impossible to get up. Of course I was told that once my body was use to the exercise that would stop. It didn’t. I must admit that losing the weight made my energy level higher (actually I think it was the nutritional supplements that gave me more energy), but it did not ease the pain in my body. It continued to get worse.
One morning while getting out of bed my right knee snapped with an excruciating knife like pain, and I hit the floor. My four mile walks were over. No doctor could explain the reason for this knee pain other than “Let’s do surgery and clean that out.” Well, I wasn’t quite ready for that. I had already had three major surgeries in my life and after each one my body seemed to have more tender spots, more pain, and more stiffness that would not go away. It was un-relentless and unforgiving. Sometimes I felt that my own body hated me. I could hardly get out of bed in the mornings. I had to hold the wall just to walk. My hands didn’t want to open and close. I couldn’t even open a medicine bottle without help.
There was only one doctor in all this time that had any sympathy for my pain at all. He told me that I had a problem called Myofascial Pain Syndrome which effects the fascia ligaments that surround the muscles in your body. He said that his father suffered from the same thing, and it would only get worse as I grew older. He was a gentle caring man, and I thought I would actually start getting a little help from someone who would listen to me. The next time I went to an appointment at my HMO he had left, and of course, the doctor I saw that day had never even heard of the syndrome, didn’t believe in it, and I was back to square one. Doctor’s kept telling me there was nothing wrong with me. “It was all in my head.” Maybe seeing a psychiatrist would be beneficial. Now that was a blow to my psyche, for sure. I wanted to yell, “I’m not crazy; I am in pain!” I was told it must be depression and I needed to be on antidepressants. I was put on medication that made me lethargic and tired all the time but did nothing for the pain. Everything in me cried out, “Someone please help me!” I’m not suffering form depression other than the depression you get from being in pain 24 hours a day. What deeply depresses me is that I live in a society that is more concerned for the pain of an animal than of a human being. Of course if my dog was suffering like this then euthanasia would be the vet’s chosen method to relieve his suffering. I’ll tell you right now; I’m not ready to go that route. I was treated like I was just making it all up so I could get drugs, or that I just craved the attention. I began to cry out, “I’m not making this up because I want drugs! I’m not making this up because I need attention! I’m not making this up because I am some sort of neurotic woman with an insatiable need to see and receive the attention of doctors! I’ve got to the point that I don’t even like you guys anymore and you are the last people I want to see. I’m not making this up because I want to sit home and do nothing all day. I am in PAIN! Terrible, excruciating, debilitating PAIN! My lower back and hips constantly feel like they are on fire. The burning sensation never goes away. My knees, ankles, and hands ache and feel swollen constantly. I get sharp pains in my thighs, hips, lower back, buttocks, and upper arms that feel like electrical shocks. Sometimes these electrical shock sensations are so strong that I would give anything just to be able to pass out. When they happen in my lower back it feels similar to the labor pains I experienced in childbirth. Much of my body feels bruised and is so tender that I can hardly stand to be touched, the slightest pressure will send me reeling in agony. You don’t know me. You don’t know that I am not the type of person that enjoys having people feel sorry for me. You don’t know how much I value my independence and how hard it is for me to ask for help. You don’t know how much it would mean to me to clean my house again, to be able to hold down a job to help meet the financial needs of my family. You don’t know how much fun I used to have providing food for family barbecues, throwing dinner parties for friends and playing pinochle on Friday nights. You don’t know the joy I felt being the captain of our church softball and volleyball teams. How much I enjoyed bowling, fishing, and camping with my family. How much I treasured and cherished dancing with my husband around the living room and more intimately, making love to him. You don’t know how hard it is to explain to my little grandchildren why I wince when they crawl up on my lap and hit an extremely tender spot on my thigh, the agony I feel when I see the look on their little faces because they think they hurt Nana. I can’t begin to describe to you how much it hurts me to see the look of disappointment on the face of a loved one when, once again, I’m unable to attend an award ceremony in their honor.”
I would tell them how much my singing and teaching meant to me. How I used to give concerts but now getting through one song sitting on a stool zapped me of my energy. It all just seemed like a distant memory now. A life that belonged to someone other than me. Something as simple as writing a letter would often take me hours because I would have to stop and let my hands and my mind take a rest. I can hardly write anything by hand anymore. If it wasn’t for computers and the spell checker most people couldn’t read what I write. My days became extremely unpredictable. Some days I could hardly get out of bed, and my body wouldn’t respond to any kind of medication. Then, there were other days when I could actually cook a meal or wash a few dishes.
One day in June of 1997 I was feeling pretty good and decided to get on the riding lawn more and mow for a while. Big mistake! Don’t ask me what happened or how it happened because it all happened so fast that I’m not even sure. All I know is that the lawn mower decided to do a wheelie up the wall of the storage shed, and I hit the ground directly on my tailbone with a terrible thud. The next thing I remember was laying there on the ground crying in agony as my son and my husband were running to help me up. For three weeks I could hardly get out of a chair without help. The one high point in all this was after they x-rayed my tail bone I saw a doctor that after listening to all the symptoms of pain I had had over the years told me that I had all the classic symptoms of something called Fibromyalgia. This was something that I had never even heard of.
I began to read everything I could about this thing called Fibromyalgia. I found that, yes, I had all the symptoms. They say there is 18 tender points and that you must have at least 11 of them to be diagnosed with this “invisible” disease. Well, guess what? I had all 18 of them. I found that there were many doctors that considered it a “wastebasket” disease. They considered it a name some other doctor put on something because he didn’t have anything else to call it. They still believed it didn’t exist and was just something that was “all in your head.”
I began to search for doctors that new something about Fibromyalgia or was at least willing to learn. I ordered books and searched the Internet for anything I could find that would help. One of the most helpful books I have come across is one called Fibromyalgia & Chronic Myofascial Pain Syndrome A Survival Manual by Devin Starlanyl, M. D. and Mary Ellen Copeland, M.S., M.A. This book has given me some of the most valuable information on these syndromes that I have run across in all my years of searching. Just knowing that there were really people, doctors even, out there somewhere that understood gave me strength to keep searching and fighting for wellness. These studies and findings also helped my family begin to understand why the wife and mother they used to know was no longer the same.
For two years I fought for disability because I was no longer able to hold down a job. I have even placed the letters that two of my daughters Shannon and Amber wrote to the Administrative Law Judge during my appeals. You can click on their names to read their letters. This will give you just a small glimpse into the minds of my family as these tremendous changes in our lives were happening. It takes a lot of love and patience from a family to even begin to get through the changes that interfere with your every day life. And, for me it took an abiding faith in the God that I serve, my Lord and Savior, Jesus Christ, the Holy Spirit, my Strength and my Comforter. Without that strength I draw from my faith, I would be lost in a world of pain that I cannot control. There are days that I can lead an almost normal life and there are days that I need to just stay in bed. I have learned through prayer and studying this disease to pace myself and take my medications as prescribed. My work for the Lord is an important part of my life, and I know that God has called me “For such a time as this.” I believe in divine healing as the Word teaches. But I also know that many good, caring, loving, Christians suffer in agony over things they cannot understand. When any kind of suffering hits the life of a Christian our first thought is usually, “Why me?” But in all honesty why shouldn’t we say, “Why not me?” Being a Christian does not exempt us from pain and sorrow or even sickness. As Christians when pain, sorrow and sickness thrusts itself in our lives you can be sure there will be a non-Christian watching the way we handle our situation. It is in these times that we can be the examples of faith and trust that will draw the unbeliever into the longing for what we have. It’s easy to serve the Lord when we are never sick and our bank account is overflowing but it isn’t always easy to shout praises when things are on a down hill slide.
I would give almost anything to be a whole, complete, functioning human being again and I am getting there at a snails pace. It has been very hard for me to accept that I have a disability that limits my actions and activities. I was an active, happy, extremely functional contributing human being before this invisible disease slipped in and stole life, as I knew it, from me. My family has also suffered great loss and great pain because of my disability. One of the most important things I have learned through this is that no matter where you are in life as a Christian, God has allowed your pain for a reason. It may just be that there is a lesson to be learned. It may be that God is placing you in a position to truly understand someone else’s pain. We all know how many times someone has said to us, “Oh, I know just how you feel.” But they didn’t have a clue. God may be on the verge of bringing someone in your life, and you will really be able to say, “I know how you feel.” And be the witness they need to keep them from giving up.
Living with pain is far from easy but it is possible with God’s help. And we can always find blessings even in our suffering because, believe me, there is always someone that is in worse shape than you are. May we always be able to say with Job, “Though God slay me, yet will I trust him.