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by Ken Moose

This article was written in response to a letter to The Lupus Chronicle from a woman who's husband had been diagnosed with lupus. She was looking for advise and wondering if there were other such rare animals as her husband out there.

I am a man. I have Lupus. They finally found out what my problem was about 8 years ago. I was a construction worker all my life. I worked in the rain enough times, and said all the right things to all the right people enough times, that I became Manager of Construction of a large Company.

How did lupus affect me? It attacked my liver, my kidneys, and my joints, produced extreme pain, and worst of all, caused a complete loss of strength. I could not put my socks on. I could not pick my legs up to get in a car. I could not pick up a coffee pot. I also thought I was losing my mind (in a way I was). Lupus causes what we call a "fog". I would put car keys in the fridge. I would feed the dog twice, or not at all. I would go to another room for a very important reason, only to not know how, when, or why I came to be there. Even now these things still happen to me.

Having certified that I am a "Lupie", maybe I can be of assistance to spouses of Lupus men. (This applies to spouses of Lupus women also.) First let me give you some "do's and don'ts."

There is no way you understand what pain and mental anguish your husband is going through. He can not tell you, nor does he really want to. He is not exaggerating his inabilities or his pain. He is not looking for sympathy. Sympathy is what you look for when you have had two back surgeries and a hemroidectomy. Believe me, I would gladly suffer through all these threefold than go through what lupus caused.

More than anything he is looking for understanding. From you, from his doctor, and from the unknown. So what is your roll? Help him when he asks. Leave him alone when he expresses that desire. Never, never, say "let me do it", or "do you want me to do it". Never ask him "what in the world are you doing?" when you find him asleep on the commode. Never show your exasperation. Believe me, he has enough exasperation for the both of you. And most important, when he snaps your head off, or says something mean and spiteful, remember that it is not you, but the unseen wolf he is mad at. Even though he may not tell you, he needs and loves you more now than you can possibly imagine.

Now for the patient, there is good news and bad news. The bad news is there is no cure. There are two "good news". There is remission and there are medicines that help you live with the lupus. I have just completed two of the most wonderful years of my life. I was in remission. Now I am back living from pain to pain to pain.

You can live with Lupus. An important thing for me was to set a goal and do it. My first goal was to mow the yard. I did. It took me 2 days to finish what I once did in 2 hours, but that was OK. Another important thing is knowing when to stop. Right now, today, my wife and I will be doing something like building fence, or working with the cows. I will say " I have to stop now." and I do. It's easier to recover from exertion than from overexertion. Another important thing for me is a deep faith in God. But, what may be more important is a sense of humor. You need to be able to laugh at yourself when you do something ridiculous.

Look at the bright side. Lupus gave me an deep appreciation and unsatisfiable hunger for one the greatest, most enjoyable, things on the face of the earth. Hershey Nuggets.

I have the following laminated on a card that I carry in my wallet. When the wolf starts howling more than I think I can stand, I read it.

"WHEN WE WALK TO THE EDGE OF ALL THE LIGHT WE HAVE, AND WE TAKE A STEP INTO THE DARKNESS OF THE UNKNOWN, WE MUST BELIEVE ONE OF TWO THINGS WILL HAPPEN. THERE WILL BE SOMETHING SOLID FOR US TO STAND ON, OR WE WILL BE TAUGHT HOW TO FLY."

I have been taught how to fly.