Tuesday, July 24, 2012

Lupus? I Don’t Need No Stinkin’ Lupus! (But I Do Need A Small Favor)

(Please read this post to the end…)

Try as I might to ignore it, lupus seems to have another plan for me at the moment. 

I am having photosensitivity that is ridiculous.

I wanted to post a photo, but it’s kind of hard to see the red, blotchiness of my skin on my phone camera.

This is in part due to the fact that I hate sunscreen.  This is bad enough as a fair-skinned, redhead, but even worse for someone who has lupus.

I haven’t found a sunscreen that I like, and I suspect that I may be partially allergic to something in it.  If you have any recommendations in this regard, please let me know.  I think I have tried every drugstore brand that exists…

Then there is the fatigue, with a capital “F”.

I think part of the fatigue has been from basically having to start Humira all over again, but part of it is definitely lupus.

My rheumatologist has always said that fatigue is the hardest symptom to treat.  And when it’s the type of fatigue that caffeine doesn’t touch, and it doesn’t matter how much sleep you get, you are still tired, fatigue is definitely an insidious symptom. 

I guess this shouldn’t surprise me, because when I first got sick, even when my pain was down considerably thanks to steroids, I was still tired all the time.  It’s one of the first symptoms to come, and one of the last to go.

I have also had significant pain near my bottom right rib.  That’s the telltale sign for me that I’m flaring.

Granted, so far it hasn’t been a massive flare where I can’t get out of bed.  But it’s just enough to remind me that while the Humira is working on my arthritis, lupus is taking advantage of the opening.

And part of it may actually be from the Humira, as one of the side effects is a “lupus-like syndrome.”

This is something that has flummoxed me since my rheumatologist prescribed Humira for me.  I already have lupus.  Why would I want a “lupus-like syndrome” to go along with it?

And given the extreme heat and humidity we have been having, I feel lucky that I am not having a worse flare. 

Anyway, this laundry list is my way of confirming for myself that lupus is alive and well in my life.

I have a lot going on in the next month, traveling several places – Martha’s Vineyard by way of New York with my boyfriend and his family, Los Angeles to be in my friend’s wedding, and several trips to my parents’ to secure my bridesmaid’s dress.

I just hope that with all that I have going on, I will be able to keep this flare at bay.

I’ve got enough going on.  I don’t need no stinkin’ lupus.

But I do need a small favor.  If you would, could you please follow the link below and vote for me to receive a scholarship Mayo Clinic’s Social Media Summit?  I greatly appreciate your support in this:


  1. This is an awesome, super light sunscreen that feels almost like creamy water. It is expensive, but lasts a good while if you only use it on your face/chest.


  2. My partner has a skin sensitivity to the perfume they put in sunscreen so her doc recommended finding a sunscreen that caters folks with a sensitivity to scents. We haven't tried it yet but you might want to try to find one if you think it might help.

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  4. Hi Leslie, I came across your Mayo Clinic essay and am impressed by your determination. Keep advocating! I had a similar experience to you which led me to co-found FeelAlike.com, a health social network. We're currently selecting our next round of beta groups and are focusing on autoimmune conditions. We'd love it if you checked out the site and offered feedback. We've opened it temporarily to enrollment, but will be closing it again in the next month.

  5. As a fellow lupus redhead, I've also had a lot of trouble finding sunscreen that doesn't irritate my skin. I used to swear by neutrogena sunscreen, but I find that it gives me a rash now. I use this sunscreen (Eucerin spf 30) on my face and chest every day and it doesn't bother my skin: http://www.amazon.com/Eucerin-Daily-Protection-Moisturizing-Lotion/dp/B0001EL0FO (I like that it has both chemical and mineral sunscreens).
    My arms/shoulders/everything else are less demanding, so I use Aveeno spray sunscreen because it's much easier to apply. Also: scarves?