As a holistic Health Counselor and Laughter Yoga Teacher, I have the pleasure & pain of sharing some of my life and work with you. Maria has asked that I share information regarding laughter, diet and self-care in the coming weeks. In all honesty, both Health Counseling and Laughter Yoga kind of snuck up on me. In a way weird way, I have Lupus to thank for the work I am now doing, so it is only fair that I share a part of my story.
Thirteen years ago Lupus changed the course of my life, but not in the way that you might think. I meet Jeff while attending OSU and right after he had been diagnosed with Rheumatoid Arthritis. We were inseparable from the beginning. When he told me about his diagnosis, which I am sure was a hard thing to do early in a relationship I jumped online and did a little research. RA didn’t sound fun, but I was already in love, so I didn’t care. I wasn’t gonna let a little arthritis get in my way. Within 6 months, as new symptoms emerged, Jeff’s diagnosis changed from RA to Lupus. I recall thinking, “That’s great! No permanent damage to his joints.” Our love and naiveté were a blessing in disguise.
We were married three years later, a year after our college graduation. Jeff had majored in Forest Recreation, a degree that can require a lot of physical strength and stamina and a lot of time outdoors in the sun; all of which he loved. It became apparent during his first real job in the field that this was not going to be a long term career because of the Lupus. His symptoms continued to increase fairly rapidly. By the time we married, he was being monitored for heart valve, kidney and esophageal damage. I had a decent job, so we made the decision that he would go back to school for IT so that he could get a desk job.
Lupus was a struggle for Jeff in more ways than just the myriad of symptoms. He had always been very physically active from hiking to weight lifting. He found it almost impossible to do either and he was gradually losing more and more weight. He had always struggled with school, but excelled in sports, so his identity was tied in with his physical ability. Now he felt not only stupid, but physically inept to boot. I am sure it was humiliating for him that I was the one mowing our lawn when we bought our first house.
Over time the sicker he got the more he pulled away from me. Never very open with his emotions, the illness took this to the extreme. I think shutting me out was his way of protecting me, although it was protection that I did not want.
Jeff eventually graduated from IT school and got a desk job with a decent company but, by this time the disease was a constant hindrance. Going to work was about all that he could do and even then he was missing a lot of days. Our social life as a couple was deteriorating. In the beginning, he encouraged me to go and leave him at home. Then as he got more ill he wanted me to stay home, although he wouldn’t let me help and he wouldn’t really talk to me either. I don’t know that there was much I could do anyway.
When we got the official word that his kidneys were failing I asked him to go to counseling with me. His words were that he didn’t need counseling. I was the one that had emotional issues and needed counseling. Although I was hurt and it wasn’t my ideal, I went to counseling on my own. I recognized that I needed the outlet to cope, but really wished that we were experiencing it and growing together as a couple.
Luckily, Jeff was a candidate for peritoneal dialysis, which allows you to do dialysis on your own, either at home or in a semi-sterile environment like a conference room at his office. This was a God-send, as it allowed him to continue working full time. However, as we learned, there are still complications of living, working and socializing while undergoing peritoneal dialysis 4 times a day. It was necessary for Jeff to plan everything out in advance so that he could be prepared with supplies, dialysis solution etc. It also became seemingly impossible for us to hike, camp or travel. In reality, it was not impossible, but it was so inconvenient that Jeff no longer wanted to do anything. In my view, he began to get extremely depressed and sometimes used his illness as an excuse to not do anything social even on the good days. He was never very comfortable socially and this was another thing Lupus brought out to an extreme. TV, video games, books and internet became his social life. And who can blame him? You don’t have to explain to them what is wrong. We’ve all heard the phrase “But you don’t look sick … ”
Summer of 2004, Jeff began having chest pain and shortness of breath. Just walking a few blocks to lunch would exhaust him. They thought it might have been pleurisy or pericarditis, both of which he had previously. He knew it was different. Finally, in December, he had another heart work up with a stress test, blood-work and an echocardiogram. They didn’t find anything. By this time, Jeff had been sleeping, elevated, on the couch for several months, because it was the only way he could attempt to lay down without chest pain.
Then on Monday morning, January 31st, Jeff asked me to drive him to the emergency room. Jeff never asked to go to the ER. Every time we’d gone in the past I had to drag him. He was convinced it was his heart. For the first time, his blood work showed elevated proteins that signaled a heart issue so they ordered an angiogram. The one test he’d never had. The angiogram showed a blockage in his left ventricle. Before all of his specialists could schedule his heart surgery, Jeffrey Owen Anderson passed away the next morning, February 1, 2005. I became a widow at age 29. It was this experience and the decisions I’ve made since that have lead me down the path to health counseling, Laughter Yoga and healing. I hope to share my knowledge around diet, lifestyle and self-care with you and more of my experience as a Lupus well-spouse in my following guest blog posts.
To learn more about Andréa, please visit her at Soaring Eagle Wellness
