I have been hemming and hawing all day about what to write. Then I started ranting to Corey about how my boobs were itchy (I know, TMI) and I was so frustrated! Let’s face it, those of us with lupus who have boobs need boob shields!!!
Lupus is very sensitive to the sun. My lupus becomes very noticeable when touched by UV rays. That’s any UV rays. I could be in my apartment with all the blinds closed, wearing sunscreen and sun protective clothing (thank you to the company Sun Precautions) and still feel like the sun is bothering me. Yes. The sun is an entity and it does its best to bother me. That’s what it feels like. It’s all about me. It can drain me of all of my energy, thus making me feel crazy fatigued. It has been known to make me feel nauseous. It causes skin reactions like rashes (any redness I have on my skin is apparently caused from the sun according to my Rheumatologist) and sometimes a burning sensation. I have felt a lot of pain and aching in my joints too. My eyes are very sensitive to the sun and thus have a hard time taking in all the light and feel overwhelmed and overstimulated and then I can feel lightheaded. The sun also has this ridiculous ability to make me very hot! OK. OK. It can make us all feel hot. But I can’t do anything without feeling hot and I have since learned that that is multiple sclerosis heat fatigue and lupus photosensitivity (another word for sun sensitivity) and it’s so annoying! Oh and I almost forgot to mention that fluorescent lights can also affect me and make me start feeling “weird” as I call it–or basically I start feeling really bleh. You know. Bleh. Along with it happening just because, if I am already tired, stressed, or even hungry it can magnify the symptoms even more.
So you’d think I’d be happiest as a bat in a cave right? How about as a Vampire? Om, no. I like the sun. I never was a sunbather and I didn’t spend that much time in the sun but then I like to be outside and take in nature and one of my favorite meditations is looking at the sky and the clouds. Oh and I kept hearing that Vitamin D was so important for my health in general and given my chronic illnesses and that the best source of it was the sun.
Well great. I was truly heartbroken that I couldn’t/shouldn’t be in the sun that much when I found out I had lupus. Yes, wearing sunscreen all over, wearing special sun protective clothing, at least wearing longer sleeves and pants or capri pants (no shorts–hard in the summer sun let me tell you), wearing hats (special sun protective hats are best) and trying to stay out of the sun do help. Thank goodness I have all of these options available. But, let’s face it. I can’t get out of the sun. I live in Los Angeles, CA. I could live somewhere else but I am affected by all of the weather (I feel the rain coming, etc.) and so it wouldn’t matter. Something would still bother me physically. The sun just gets to be my enemy if I let it. And I mentally need to get outside and take walks, get some fresh air, live my life, be in a car, get out every once in awhile. You know. The stuff we humans do. There is just no escaping it. Besides, to make matters even more complicated, my MS loves the sun. So confusing!
One symptom I’ve noticed more of lately from the sun is itching. I can get very itchy especially since the sun is more intense as spring moves into summer. It takes nothing for the sun to affect me now. That being said, I tend to get itches I can’t really scratch. If I scratch them they get worse and almost start to burn. It’s basically a version of pain. So then I need to either put up with it and hope it passes, put some benadryl topical gel on the itch and hope that helps, go into darkness (doesn’t seem to matter sometimes, the itch still happens!), put on a special sun protective jacket (even though it’s ANOTHER layer and might overheat me and irritate my MS–ACK!), or I need to find a Boob Shield (at least) for goodness sakes!
I can’t help it. I’m telling it like it is. They stick out there further than anything and so then they get affected first apparently and then they’re itchy. That’s all I can come up with. Not too fun when you’re wearing a bra. But then if I’m not wearing a bra the loss of sun blockage affects me and that doesn’t help either! It’s a true conundrum!
So I’ve decided that I need to write an email to Sun Precautions (their clothes help immensely) and request that they start making boob shields with the same fabric. I don’t want to wear another layer (one of their jackets) or a long sleeve shirt of the same brand, I just want to cover my boobs. Is that too much to ask?
Anyway, that’s my rant. The sun is frustrating but it’s not my enemy as much anymore. Not only have we come to terms but it helps to have the protection I do have. I want to keep liking the sun. I don’t have any control over it. And it helps that the treatment I am receiving has greatly improved my ability to be in the sun more without getting AS uncomfortable. But boob shields would probably help a lot. Just putting it out there.
And now that you all know about my itchy boobs…I hope that is not all of you think of when you see me again.