(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: