Monday, May 9
PS 7/10 Sluggish. Headache. Ache all over. Sad lower back.
7:20am 2 boiled eggs, hot drink
I feel like you feel when your period is going to start in a few days.
10:30 App with Dr. K for official 2nd opinion from rheumatologist. I like her take on things the best so far. She confirms the diagnosis but tries to cheer me up. This will be more like you were in the room if you imagine her saying it in her great Indian accent:
“So, yes, you have lupus and that is maybe hard news. But, because you are sub-acute, we can think of it like you have a touch of lupus. You see what I mean? It’s more positive, so, we keep you alive, yes? Not so serious when we say it that way. So, let’s say you feel kind of crappy to really crappy most of the time. Ok? That’s Ok. Because it means you are not in hospital getting half your intestines removed, you see what I mean? You have it pretty good, sweetie, is what I’m saying, so don’t feel too bad. Just take your medications and get lots of sleep, stay out of the sun and don’t exert yourself.”
I would like a Tshirt with that slogan. Just a Touch of Lupus.
12:30pm DZ Akins for Matzo ball soup, water, rye toast
5pm palmful raw cashews, water
I totally have period brain and sadblah body feeling. Lower back pain and headache feel less like regular pain and more like intense hormone sadness.
I can’t tell you why, exactly, but I love this outlook. I was recently diagnosed with melanoma (while 32 weeks pregnant) and while I still cry every day and and facing some pretty major surgeries, looking at it like this is inspiring. Others DO have it worse! I think I’ll think of myself as having Just a Touch of Cancer. Thanks for sharing your story and struggles.
Having people tell me I could have it worse rarely makes me feel better. I’m cranky like that.
I know just what you mean, Sue. I know just what you mean. xo
Good luck and best wishes in your journey, Shannon.