LUPUS - the disease of a 1,000 faces

Lyn Ayre 60th Birthday



Friday May 18th is 'band together for Lupus awareness' day. We are all asked to 'Put on the Purple' to show our support for those who suffer with Lupus.

I've done some writing over the years and I share that with you here.

So, It’s Lupus

1998

They say it’s a very mild case.

Well, maybe so … if you’re not living it.

So what if I have a nosebleed everyday during a flare.

So what if my hair comes out in gobs.

Oh, not so you can tell, yet. But I can see it in the wastebasket.

And so what if, yesterday, I could barely get off the couch, as I was so exhausted.

So what if my eye is attacked and I am in jeopardy of losing my sight. So what!

I’m a photographer, a writer, an artist, and a singer. It is attacking my vocal chords.

So what if my joints ache so badly that it makes me flinch and cry.

So what if I get this weird rash on my face if I’m out in the sun.

And so what if purple bruises appear in various unhurt spots on my body for no reason.

It’s just a mild case… no major organ involvement.

My blood, my eyes, my skin, my joints.

My liver may becoming toxic due to the drugs I have to take.

Flares and remissions.

I am grateful for the remissions.

But I really do feel like shit during a flare.

I do think about others who have a much worse case than I do.

I pray for them.

I pray for myself, too.

But don’t worry. It’s not going to kill me.

It’s just a mild case.

Lupus, the disease of a thousand faces

© 12Jan2006 Lyn E. Ayre

For years, I’d suffered from stiff and aching joints and muscles. I’d get a red rash on my hands, face, and upper chest if I was exposed to the sun for too long. I would wake up in the morning with one or more purple bruises. They could be small or large and in some interesting spots; most typically the inside of my forearms and biceps, upper inside of my thigh, or the inside of my ankle or wrists. During a flare, I would lose handfuls of hair. I might run a fever of 101-102 degrees Fahrenheit, have bleeding gums, or a continual headache. The symptoms would come and go at will and vary each time. I’d get tiny red and purple marks on my abdomen and the inside of my arms. My memory was sometimes short. I’d may feel exhausted and stay in bed or on the couch all day. Sometimes I would also experience scleritis, which is an inflammation of the white area of the eyeball.

According to my rheumatologist, I had enough positive results to make a diagnosis for Lupus. It is a process of eliminating other possible diseases and syndromes. I’ve since forgiven every doctor that has ever sent me away without a determination or diagnosis. It has to be as confusing for doctors as it is for patients.

Lupus is called the disease of a thousand faces. We all present differently. It usually begins slowly with new symptoms appearing over a period of several weeks, months or, at times, years. In general, as one symptom appears it tends to stay while, in turn, new symptoms develop. Because the symptoms may be hard to see or describe and tend to come and go suddenly, it may take time before the person becomes aware that something is wrong.

A little twist to my story is that I also have phospholipid antibodies, anticardiolipin antibodies, and lupus anticoagulant in my blood so I was at risk for miscarriages. Cardiolipin antibodies are associated with a tendency toward blood clotting. If this had been known when I was pregnant, I could have been given blood-thinning medications (aspirin with or without heparin) during my pregnancies to prevent the miscarriages.

Until I was diagnosed with ‘Antiphospholipid Disorder’ a few years ago, I’d always blamed myself for losing my four babies. I carried a lot of guilt and shame about this. With the diagnosis of Lupus, came self-forgiveness and understanding.

I’d been so ill for a very long time. For about a month, I had been praying for God’s healing grace to enter me and restore me to health and mental clarity. As each day passed, I became more and more willing to change my thinking and let go of old outworn ideas, and belief systems that no longer served me well. I felt a change begin to occur in me.

It was around that time that I was introduced to Usui Reiki – a Japanese, light-touch wellness modality. A major component of Reiki is self-healing. I began daily self-healing and improved enough that I did not need my walking sticks, or to use a wheel chair in shopping malls and hospitals, and I sold my electric scooter. The exhaustion that used to plague me gradually lifted. The other symptoms abated, too.

Some days, I would forget to take my meds and still feel okay. With my Doctor’s blessing, I gradually went off all my meds. This is what happened for me and I’m not advocating that any of you, dear readers, do anything against your doctor’s plan for you. I had become so completely willing to heal that I did the self-healing technique almost every day. Over the last three and a half years, I’ve probably missed a dozen days. Willingness is certainly one of the keys needed in healing; persistence is another.

I was recently asked a question. “So, are you saying you are cured of Lupus?” My response is simple. “No, I am not cured. The symptoms sometimes bother me from time to time. I do say I am healed, though, because the symptoms don’t bother me often. When I was sick, I was just getting worse and worse with no lessening in between. I was on some pretty heavy-duty medication with potentially devastating side-affects. I lost my job. My vision was in jeopary as were my vocal chords. I was in a tremendous amount of pain. Now I feel well. I have energy from morning to night and I’m improving every day. I am back into life. I feel whole again.” This, is my story.

In 2010, I was found to have over two dozen Lupus Lesions in my brain; these are areas of inflammation. Life goes on, one day at a time. I work, I live every minute, I love like there’s no tomorrow. I forgive and bless. I accept and appreciate. My life must have value to have meaning, so I create, I thrive, I learn, I grow, I share, I teach.

I am well.

Please 'Put on the Purple' on Friday May 18th to show you care about what happens to people with Lupus, the disease of a thousand faces. Thank you.

Love Lyn

And if you feel so inclined to contribute to the research for the cure, here’s the link:

http://www.lupus.org/