Living with Lupus

When fall sweeps summer out I come alive again. I realize that this sounds strange but living with Lupus means summer is my enemy. I have always been a lover of summer. My life revolved around camping, water skiing, hiking, exploring...


As I began to mature these simple pleasures became difficult. By the age of 30 the summer things I enjoyed had become a thing of the past. It actually really came to the surface and demanded to be dealt with on my Luna de Miel or honeymoon. I had been ill off and on since I was 17 and had no reason to feel any different about this time. I dealt with the symptoms and enjoyed a month long retreat all around Mexico. When we arrived back in the states I got sick again and decided that I should see a Dr. (I had been to several since I was 17, because they couldn't find anything that should be causing my symptoms, they were deemed "psychosomatic")

I was not about to take "crazy" for an answer. As it so happened, neither was my new Dr. After many tests, questions and history he was proud to announce a diagnosis. As the words left his lips...Lupus, my life would never be the same again. I now could confront the enemy, was grouped with the "chronic illness" people, am uninsurable and my health has a mind of it's own.

I was now aware that my depression was a side effect of being chronically ill and not some kind of genetic mutation that would have me drugged up and possibly committed if not kept under control. Being a newlywed, I offered my new husband a free pass out. He had bought a lemon, there were not enough goats in my dowry (so to speak) to make up for the fact that he may never have a child to carry on his name, his wife could become ill and need to be cared for or she could disappear all together.
Knowing that I had married a amazing man was some comfort but, he still should be able to part company if he so desired. His beautiful new future with his new bride was now tainted with uncertainty and potential sadness.

That was almost 13 years ago and many things have happened since. We have a beautiful daughter and have had many amazing moments. It is those moments that I cling to every time I'm not feeling well. My memory and the memory of my husband have been scarred with the reminders of my illness. With every wonderful moment of our lives, these scars are healing.

Unfortunately, we both suffer from one that plays itself out over and over when you let it creep in. It was the night that my heart was attacked by Lupus and the rhythm of life was silent. Our baby was just 2 years of age and my life just slipped quietly into darkness. Luckily for us, I was already in the E.R. because I knew something was wrong. They were able to revive me quickly and the only permanent damage was the Sinus node (electrical box) of my heart and my security of life. I was implanted with a pacemaker to keep my heart beating.

It is a strange thing the pacemaker. It's the thing you see a warning for on microwaves and at the airport. It is a common tool of the over 70 crowd. Then there was me. A 35 year old wife, mother, daughter and friend that didn't quite fit the profile. I was greeted by Dr.'s and nurses for the first couple of years with a "oh, your so young", I would say yeah. What the hell did they want me to say. Gee, thanks for reminding me that I really shouldn't be hear for another 50 years. Eventually, I got to know the whole staff and I became a fixture in the office.

I also became a fixture in the E.R. and with the paramedics up until last year. You see, I developed a secondary condition that required lots of pacemaker tweeking. Finally, I am at a place that is stable and my heart has its old song back.

Through all of this I was blessed with a husband that is strong and compassionate. Sometimes he and my daughter get "ripped off" because I don't feel well. For the most part I can rise to the occasion and join in as long as I take all the necessary precautions. I usually am not out in nature between the hours of 11:00am - 4:00pm in the summer. I do make exceptions only after a bucket of sunscreen, long pants, long sleeves and a hat have been properly secured.

So you can see, I long for the fall and winter months. When I can be comfortable in all my clothing, the sun is not as strong and I can go outside without as much preparation or worry. I am not in denial but Lupus is part of me and I don't give in to it unless it is absolutely necessary.

My life is beautifully different from everyone I know and thats fine with me.