My Life with SLE

Late spring 1989, my physician, Dr. Fred Parham called me into his office. After years of testing, we finally had a definitive answer. I had SLE. getting to this point caused me unbelievable frustration and heartache as I watched my husband and family try and understand what on earth was going on with me. See, with lupus, the symptoms initially are not always clear cut, nor are lab tests always definitive. We all knew something was going on, but just what that something was, could not be diagnosed.

The first signal that this body of mine wasn't working as it should, was the regular miscarriages I had had over a 6 year period. 13 in all. My doctor then, had often conjectured about my having some autoimmune problem, but the tests failed to show anything. There were periods of intense fatigue, where even doing light chores was simply too much for me to cope with. This led to a few ugly arguments with my husband, who would get frustrated with it all.

Being a California girl, I grew up loving summers at the beach, and loved being in the sun. But, as time wore on, I began getting ill after even short exposure to sunlight. Rashes would bloom over the exposed areas, and I began getting a red rashlike mask over the cheekbones. Then the nosebleeds and sore throats began popping up. My mouth would get red lesions, that made it difficult to chew or even swallow. The sore throats were so bad, they felt as if my entire trachea was filled with broken glass. The doctors prescribed xylocaine sprays to numb my throat, so I could just sip water.

As the years rolled on, my hands and shoulders began to really ache badly, and lower back pain became a real issue in our marriage. It took a lot of work to keep our marriage on an even keel, because David was beginning to think I was a hypochondriac. Finally, in 1989, when the joint and muscle pains got so severe, I needed Dilaudid just to get out of bed, Dr.Parham ordered a huge panel of tests, designed to capture what he felt was SLE.

They did. My ANA was very very high at 1:1800, and the other tests like the Anti- DoubleStrand DNA, anti-phospholipids, and a battery of thyroid tests clearly demonstrated SLE. The speckled pattern was present in the ANA, which is a fairly definitive marker in many SLE cases. Retesting showed the same or slightly higher results. My normally reserved internest sat there with tears in his eyes as he counselled me on just what we would be facing.

Let no one tell you differently, SLE is a killer. It may take years, or even short months, but it will kill you. How can I live facing this every day of my life, was my first thought. How is it possible to live like this, watching your children, dealing with life, and always always be aware of the ticking time bomb, eating away at your body? How can I explain to those who cannot understand how our bodies can turn on themselves, systematically destroying tissue and bone? Most of all, how can I live with pain and fatigue in a way that won't tear the very fabric of my marriage and family apart?

It took months of researching, counselling and trust in God, for me to finally find a way to handle all of these issues, in a way that was fair to us all. First off, many, if not most of the medications that are prescribed for lupus, can cause immense damage. Having already experienced some of this because of long term corticosteroid use, I decided to stick with dietary supplementations. Things like Co-Enzyme Q -10. Carnitine, Vitamin E, Hawthorn, and a good multi-vitamin. I added fish oils and Omega 3's. And they helped. I'm not suggesting that anyone else follow this, because this was a very individual, personal decision.

In reference to my marriage, I withheld much of the issues I faced with pain and fatigue. And I made every effort to be as productive and active as possible. Was this fair? No, but it worked. So well, that when I truly was shot to the curb, down for the count David came through for me every time. Friends were treated the same way. Most people have an enormously difficult time even understanding what SLE or other autoimmune diseases do to you. As a society, we are geared towards going to the doctor, getting a pill or treatment, and voila! We are good to go. When friends ask, "What is the cure?", they cannot handle being told there is none.

Finally, I turned this huge burden over to God, asking him to walk this lonely journey with me, one step at a time. And He has. Since I was first diagnosed, things have gradually gotten grimmer. Due to multiple traumatic injuries and of course the death of my husband, my body is finally breaking down. Arthritis has caused the collapse of the L1-5 vertebrae, along with stenosis and a spur compressing the sciatic nerve. The chronic pain is impacting my blood pressure which remains high, even with medications. My rosy cheeks signal to those who know that the wolf is prowling and hungry.

But life is a precious thing. With the help and love of my friends and family, I am able to walk the last legs of this journey with a smile and a prayer. It is all we can do when faced with something like this. I have learned not to fight lupus, but accomodate it, as I would an angry and anxious old friend. To live in the moment, to sometimes sit quietly watching all those loving faces, quietly talking, or jump in and help them with their simple tasks. All through my days, I try and remember to thank God for all He has given me, to let go of anger and hurt and realize this great truth. Life isn't promised any of us. So no matter what life has gifted you with, never forget to say I love you, or I'm sorry. You may never have another chance.