Posted by: hockeygrl1 | April 6, 2011

Becoming a Vampire

For the first year of my battle with lupus, I was lucky. I didn’t seem to have a problem with sunlight. I was able to go out in the sun and do my gardening or walking without sunscreen or my big floppy hat. There was no sign of the butterfly rash on my face.

butterfly rashThat all changed in the second year of my illness. Now even if I’m out in the sun for short periods of time I get the rash the symptom that most people associate with lupus. The rash isn’t the worst thing that happens to me in the sunlight. I say I’m becoming a vampire because it feels like it sucks the life out of me. The fatigue increases, joints hurt worse, and theres the rash and possible sores.

I am learning to deal with it. There is a whole routine I have to do before I go out in the sun or even drive my car. This includes winter time even though I live in Minnesota. (I guess it’s a blessing that I live here; the suns rays are not as strong as in southern states.)

  • Apply sunscreen. This might seem easy; I bet most lupus patients do this, but are you doing it correctly. It needs to be at least SPF (sun protection factor) greater than or equal to 15, and one that blocks both UVA and UVB rays. Make sure you get your neck and behind your ears as well. You must apply it correctly as well. Most people apply it like moisturizer; that’s not enough. Just for your face you need 1 teaspoon. Remember to apply it 20 to 30 minutes before you are exposed to sunlight and reapply often. Coolibar has sunscreen that is a powder and not greasy for those that work and don’t want to look shiny. I have not tried it yet, but am ordering it soon.
  • Wear protective clothing. Coolibar (http://www.coolibar.com/) also has this. I have a hat and long sleeve shirt for Collibar. It does work. The clothing has a UPF of 50+ for the life of the garment. Even though you are covered, the materials are light weight so you will not feel hot. I feel the clothing is expensive on my limited budget (SSD) but was lucky to get my hat and shirt for free from my local Lupus Foundation.
  • Remember that there are other places you face ultraviolet light. Fluorescent light bulbs and photocopiers also emit ultraviolet light and we all know tanning beds can cause cancer, so they are also harmful to lupus patients. I wear sunscreen inside too.
  • Put sunscreen on before you drive any where. I frequently forget this and end up with a rash and fatigue sets in. I am going to have my doctor write a precription for tinted windows when I get a new car.
  • Some medications can cause photosensitivity. I have a few of these. Amitripyline, Sulfam/TMP DS, and methotrexate are 3 I’ve been on and my doctor did take me off methotrexate because she thought it was making it worse.
  • Even apply sunscreen on overcast days. As much as 80% of the suns rays can sneak through the clouds.
  • Try to avoid going out in the sunlight from the hours of 10-2. This is when the suns rays are the strongest.

These are just a few helpful things I’ve discovered on my journey. I don’t enjoy it. I love the warm feeling of sunlight on my skin and this vampire look of my white pale skin is not appealing to me at all. It does become hard to be an outdoor person, but I will do what I need to for my health.

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