Butterfly Adventures: Saving Spoons

As most know, I was diagnosed with Lupus in the fall of 1999; and as many have guessed this disease attacked my body for quite a few years before rearing its ugly head. I don't find myself talking about this disease much with those who are close to me. The truth is, it is just part of my life and at most times it is a small part of my life. In the past nine years I have been busy raising my girls, coping with no job and blending a new family. In that time, I dappled in the Lupus Foundation believing I was called to help others affected with Lupus and at the same time continue to have my hand in the medical field. I found myself discouraged with the lack of empowerment others had with their own health. I pulled away when I feared the constant discussions about Lupus made it bigger in my life or possibly increased my symptoms. So for years I speak little of my disease and talk in general terms about Lupus. Perhaps, I feel led to remind myself and my family about this disease because October in Lupus Awareness Month or maybe it is just because I am in another flare up.

Lupus is a tricky disease. The good antibodies in my system over produce and start attacking each other. Inflammation builds up and with no antibodies to stop it; the inflammation can take over the body. I am fortunate; my flare ups are mild to moderate. At first it starts as fevers, swollen glands, and achiness. My fingers, hands and wrist swell up. I feel like I am coming down with the flu. Then the symptoms increase and I can only describe it like a hangover. It is painful to smell or see light. My joints are not only painful but they feel like lead. My body gets exhausted to the extreme that I can feel tears in the back of my eyes when I move. Lying down I feel like it has passed, but no matter how much I sleep or how much I rest, each time I get up it starts again. Lupus has inflamed nerves in my right leg and the optic nerve in both eyes. My leg aches as though it is falling asleep, but to touch it is feels numb. When the cold comes in it burns. My eyes become dry and no amount of drops can relieve them. At times the sun feels like needle pricks in my eyes. I use a gel before bed and gel drops during the day to soothe the dryness. This is what I feel now. And because I am sitting here and typing this I will most likely spend the rest of the evening with my wrist wrapped to prevent the swelling. The medication I take to control Lupus is a combination of medication for transplant patients and an anti-malaria medication. Someday God will tell us why they work. I take medication for the pain and inflammation, medication to sleep, medication to build my bones after Lupus destroyed the bone density and then I take medication for the reflux caused by the other medications. On a bad day I deal with the symptoms from morning until afternoon. Usually by 4 or 5 I feel some relief and fool myself that I can do something. Then comes night time and I know that once I go to sleep I will wake up and do it all over again.

I once heard a story where a woman described Lupus with spoons. She gave her friend 12 spoons for the day and then had her friend tell her what she does in the course of the day and removed a spoon for each activity. One for getting up, one for a shower, one for eating breakfast or two for skipping breakfast because you can't take your meds, then another to get to work. Before the day starts you only have eight spoons left and each choice costs you. The goal is to end the day with one spoon so you can spend time with your family. This means the dishes don't always get done. And the vacuuming waits for once a week or the wash piles up for a few days. Unfortunately, I don't always end the day with one spoon. I often end it in bed. I never had a good answer when someone stopped over and I was in bed or on the couch or when someone called and I was just getting up after 12 o'clock. The question always was, "Are you sick, or Do you feel well"? With Lupus I usually fell sick and no, I don't really feel OK. Now I know the answer. I am saving my spoons.

Lupus has not only affected my body, it has affected my life. Lupus reminds me that God is in control. With each pain, I am talking to Jesus to get rid of it. With each symptom I am talking with Jesus to control it. I am in constant reminder that without Him I would not be working or maybe even walking. God has shown me through Lupus that He is the only provider. Even on disability, my family never went without. I remember days, pleading with our Father for healing even though I knew He was taking care of everything in my life and all I needed to do was go to bed. Little did I know, He was teaching me how to save my spoons.

I have noticed in my young years that we all have a disease; I just know the name of mine. We all have something that brings us to the cross. For some, it is stress or even fear; each are as real and as damaging as Lupus. Each breaks down your body's defenses and without God each will destroy you. Each manifest symptoms that sometimes need medical treatment and other times need psychological treatment. Stress deceives us into thinking we have to handle it on our own and by the time we seek out God we feel lost and alone. Fear inhibits us from walking in faith and overcomes us with worry instead of joy. We have had our share of reasons to be stressed and fearful. We live in a time where our country is at war with itself about whether or not we are at war. We live in the moment that the government is going to bail out the very same companies that bankrupt our neighborhood businesses. Our economy is failing, or is it? Are we losing money? Was it our money to lose in the first place? Stress and Fear consume those around me and I hear daily about the stock market and retirement funds. Not that I am not concerned, but I wonder, what if they had Lupus? What if they spent each day knowing God is in control and He will work it out. After all it is His money. He allows us to have it and use it wisely. What if they spent each day knowing they only have 12 or sometimes 8 spoons for the day and each time they stress and worry one gets taken away. Would they still waste their spoons on stress and fear or would they save it for important things, for their family.