This life with chronic pain is not a simple one. It involves, for many of us, lifting a large bucket of problems daily. Life with chronic pain requires us to not only live with pain but to alsolearn all we can about our condition, eventually memorize the daily activities of a whole new lifestyle and subject ourselves to shelves of legalized poison, also known as medication. If you also live with daily, unending pain is there anything in your life that hasn’t changed? Every aspect of mine changed when chronic pain moved into my life with all its changes; the unwelcome visitor who never left, staying on, baggage and all.
We are faced with a world of choices. As an RN and a patient, I believe I’ve seen all variations of the consequences of those choices. Many of them I’ve tried myself. We cry, we throw fits of rage, we sink into depression, we pray for good doctors, and we take many, oh yes, too many pills. We desperately seek thatdoctor, who will bring forth the magic answers via crystal ball, number of degrees framed on the wall or pure guesswork. Most of all we seek a doctor who will actually listen to us without getting a bored, distant look on his or her face or perhaps worse yet, not looking at us at all but staring at the computer in front of them instead. We must beware of doctors who are more worried about their medical records on that screen than examining you, the patient.
Many of us grow desperate looking for answers outside ourselves, yes desperate to find a cure, an escape or at the very least hope, or ways to live with this awful thing. Without even realizing it, we slip into a state of panic as we know life will never be the same. We all have problems with change and this is a humdinger when it comes to that. This particular alteration to our bodies and our daily equilibrium has thrown us a curve of major proportions. We search for answers everywhere outside of ourselves from doctors, counselors, friends, and family members. We read books, search the internet and talk about it much too much.
In my years of searching for answers to the conundrum of learning to live with chronic pain, I confess I was in the prime of life; whatever that is for each of us. I had the best job I had ever had. I was the Director of Nursing at a small hospital in the central valley of California, had a wonderful marriage to a great guy who was another RN, two bright and sweet teenagers and a funny yet charming old Victorian Queen Anne home. When I became ill, I was forty-years-old. I had just bought a fun loving bright blue Mustang convertible that I loved. I enjoyed it so much, I would drive the half-hour to work, even in the winter time, with the top down. We also owned a ski boat that was my husband’s obsession, loving it almost as much as he loved our wonderfully huge Saint Bernard. Life was wonderful.
Almost suddenly because it was just a matter of weeks, I began to have a rash on my head, arms, legs from the knees down. Basically, I had an angry red rash wherever the sun hit me while I was driving to work or when I was out on our boat in a swimsuit. The rash on my scalp developed into angry, itchy welts beneath my hair making a hairbrush hurt when I tried to run it through my hair. I had never been particularly fair skinned, am a brunette and had never had rashes previously. At about the same time, I started having pain in my rear end. I literally had a pain my ass. Whenever I sat in a chair or my car or any furniture, my bottom hurt. Eventually, my legs would become numb, making it difficult to stand up. I began to make light of it, saying it probably had something to do with those who worked for me and their varying opinions of me. It was,quite honestly a joke as my staff was very fond of me, several of them nurses who followed me there from other jobs just to work for me.
I was obsessed with shedding this awful condition, not adjusting to it and just knew there had to be an answer as well as a cure. I fought with every stubborn ounce in me and there is a considerable amount of that virtue here. I had no intention of putting up with this usurper that had moved in and created chaos out of the life I had fought so hard to establish. I have always been a spiritual person, even as a child, and in that area of my life I was angry, betrayed and generally pissed off. I discovered you can only flap your jaw so long before you become a pariah to others, drive your husband to tears and generally become a pain in the ass; all of which was ironic because as most of you already know, that was the “seat” of my troubles. God’s little jest just for me which I found less than funny; sorry Lord. Normally I have an excellent sense of humor and very soon became a thesaurus of jokes and remarks regarding the human tush, sitter, hiney, rump, fanny, po po, buttock, rear, etc. I also heard or used all of the associated actions such as sit on it, up yours, hard ass, bad ass, pain in the ass, and the list goes on. All of it was happening to me. At the same time, my heart began to trip away in a peculiar tachycardia, or rapid heart. My energy flew away and where it went, I do not know. Wherever it went, it has yet to return.
Over the many years since my trials began, none of it has become better, only worse. I was finally diagnosed with Sjogren’s Syndrome, a disease of the glands and joints causing dry eyes, dry mouth, runny nose and generalized dryness. For years I have had to drink liquids every hour as well as put in eyedrops as often. Swallowing can become a scary issue if one is too dry. Vessels in the eyes rupture and become very irritated when too dry. Fourteen years later I was finally discovered to also have a very rare disease called Relapsing Polychondritiswhich is a disease which causes the cartilage to be destroyed. All the joints and other parts of the body are coated with cartilage thus causing destruction and explaining the sacroiliitis, or pain in my bottom or sacroiliac joints from the beginning of my ordeal. Six years ago, I was discovered to have breast cancer and had to have a mastectomy on the left side of my body and also found the cancer had already spread to my lymph nodes and caused small tumors beneath my skin all over my body. Oh yes, I know what you are thinking. I found it hard to believe, also. More and more, the troubles in the body seemed unending, but I’m still alive to tell this tale.
When I consider these many past years, I consider and have often written about the many ways I have learned to cope with this pain. Even though I am aware it sounds like a country western song, I’ve concluded, “You gotta have heart.” The heart to believe life can still be good. The faith that comes from the heart to know it may get better but if it doesn’t you and I can still survive. There is a spiritual quality to the activities of the interaction between the heart and the brain. We are driven by our desires hidden deep within our hearts as many of these activities keep us going. We exercise because we driven by the desire to be strong, in order to survive. We rest, not only because we are fatigued but because we have learned we have to pace ourselves and in the pacing, we gain strength and live a more productive life. We eat correctly, learn to stop brooding and grasp the life we have left to us; all driven by the desires of the heart. Great athletes and great achievers always have great spirits, thus heart. Meaningful writers dig deep within their hearts to inspire us and motivate us to achieve, to survive and to more than overcome. We learn to step up to the next level and renew our enjoyment of life, in spite of the pain. We learn to dream, from our heart’s desires. We find new and hidden talents based on looking within our hearts. I guess you would say we really get to know ourselves as so few people really do. Most individuals do not find themselves living in a whole new world from what they always knew and expected.
Each of us has to face this journey alone. We can love, cavort, visit with and help others but this seeking must be done within one’s self. Where do we find the heart to live this rough and sometimes terrible life? It’s a secret. Don’t you hate that? It’s like having to go to the bathroom at the end of a movie and missing out on the best part or finding the last page missing in a John Grisham novel. I wouldn’t do that to you. I just mean it’s different for each of us. Your secrets are different than my secrets. We are each as individual as a snowflake falling from the sky. Each as different in conformation and each with a different destiny. Some flakes will simply melt on the window, others will join forces and become a snowman with a carrot nose and a goofy old hat retrieved from the depths of the basement. Other snowflakes will be made into snowballs and crash into laughing children who know how to have heart in almost all circumstances. Beware lest you become a flake in this vicious game and do not meet your destiny. Do I have the nerve to think there is a purpose in all of this misery? Yes, I do have that much nerve, verve and courage and I believe, so do you. It may be buried deep within, but it is there.
How do I find the heart to live this life? It’s very simple and it isbasically three steps to take.