My name is Sue and I live with daily chronic pain
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It occurred to me I should introduce myself to many of you who are not familiar with this blog which I have written for the past 2 and a half years. This will probably bore my regular readers a bit but I beseech them to bear with me. I’ll try to make this quick and painless. I love that word “painless.” Don’t see it much around here. My blog is about how I’ve learned to live a quality life while carrying a camel on my back.
Just like many of you, my life has done a complete cartwheel, camel and all. When I first started having problems I was a 40 year-old nurse, wife and mother of two teens. My husband was a respiratory therapist who was tired of all that mucus and wanted the wider challenge of nursing. He had returned to school while working full-time nights. Our eldest child, our son, was also interested in nursing and was ready to graduate high school and enter college with that goal in mind. I had helped him to get a job as a patient transporter at a local hospital but he definitely took it from there. He fell in love with medicine, hanging out in the Emergency Room whenever he got the chance, observing, learning and fascinated. Our daughter was still in high school, in love for the first time challenging many a curfew. Any parent with teenagers know what it is like to lie awake, waiting for the sound of the door to open before you completely fall asleep.
I had just been asked to take the job of my dreams as Director of Nursing at a small, busy hospital in the Central Valley of California, about 25 miles from where we lived. I had a new blue Mustang convertible which was a car I loved. I never was one to care about a car one way or the other but that one; I used to turn on the heater so I could have the top down on a cold day. I loved to make rounds with our doctors; attended patient conferences held in our alcohol rehab unit but my favorite part of my day was the interaction with the nursing staff. It was important to me to keep the personal touch with the patients, always calling them by name, never by their diagnosis as well as keeping a positive attitude with the nursing staff. My philosophy was patient care first, encouragement to my nurses secondly and compassionate treatment for both. A couple of my old friends had left their jobs to drive the distance and work for me. It was a cordial, caring group and I was proud to be a part of it.
A few months into my new job I began to have pain in my “sitter.” The twenty eight minute drive to work began to hurt; getting out of a chair after a meeting my legs were numb and my fatigue level was through the roof. My beloved convertible became the enemy because I developed a rash whenever I was exposed to the sun. My husband and kid’s favorite activity was water skiing and I no longer felt well enough to have my backside jostled and was confused by the rashes which had never happened before. I went to doctor after doctor to try to solve the pain. After seeing and being seen by 13 doctors with various and sundry diagnoses but no relief, we drove the three hours down to LA to see a well-known rheumatologist who taught at UCLA and practiced at Cedars.
It was wonderful to see a doctor who listened, was very thorough and was extremely interested in my family history which was filled with autoimmune disease. I had three sisters, all with some form of arthritis; my Dad had arthritis, polymyalgia rheumatica as well as giant cell arteritis. The doctor’s conclusion, after much prodding and poking, was that I had sacroiliitis, which was proven when he injected the sacroiliac joints with cortisone using one of the longest needles I have ever seen. I had complete relief for a whole five days, but at least we knew where it was. The SI joints are the largest joints in the body and the ones you need to sit on. Sitting is a big part of life and I was in pain whenever I did it. This began to include lying down because you do have to put that part of your anatomy onto the bed.
I know it sounds strange, but just having any diagnosis, at that point was a relief. I had had enough with all those other doctors. I had one rheumatologist who had told me two years earlier that the pain might be psychosomatic (because he had never learned to say “I don’t know”). I told him, quite emphatically, “The pain is in my ass, not in my head.” Of course, many of us who live with pain can benefit from counseling but I knew that wasn’t the “seat” of my problem.
When it became apparent I was not going to be able to work any longer, I still had to try it and worked as a house supervisor at two different hospitals, part time. I could walk, walk, walk with very little sitting. I then started having sinus tachycardia, rapid heart rate as well as irritable bowel syndrome. The gist of all this whining is that I had to find a new way to spend my energy and talent. That’s when I began to write. I’ve written poetry, prose and a newspaper column. I was an editor for a wonderfully funny magazine called “The Journal of Nursing Jocularity.” This blog seemed like a natural fit for me as a nurse and due to my pain which has extended into other areas of my body now being labeled Relapsing Polychondritis as well as mixed connective tissue disease.
We moved to the Northwest 11 years ago to enjoy the slower pace of a small town and to avoid the sun. My husband is the nurse at the local county jail where he cares for 70 felons, I’m certain with much humor. Our son is an RN in Texas where he works as a regional supervisor for an emergency specialty company and has four marvelous kids. Our daughter lives here in town, is a speech pathologist and has two adorable little ones. They both have great spouses and I have the satisfaction of seeing my kids happy. Certainly, life is far from perfect for any of them but they “turned out” well.
This blog is an open forum for anyone with any and all types of pain. It’s been read by thousands every month and many of them write in on a regular basis. Friendships have been forged here. We cry together, frequently laugh together and share just about every aspect of life. We try to cover pain treatments, diet, exercise, and treatments. Most of all we talk about how we feel, what we feel and what we wish to express. I want any new readers to know you are welcome. Come on in and we’ll treat you like family. Is that a good thing?
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