so, despite me generally feeling better i have been getting headaches quite frequently over the past few weeks.  i’ve just been chalking it up to the heat/being tired, or the steroids, but i realized tonight that it’s been going on for way too long.  three weeks probably. i am happy that i will be seeing my doctors next week.  headaches scare me, they were one of the first ways in which my body was trying to tell me something was awry last summer. you know , when the docs told me i had ocular migraines and anxiety instead of catching that little problem with my ticker that had it beating at only 15%!  these are a different type of headache, but they are there so all the same concerning.  tonight i have had one since 6 pm, it’s gotten worse and worse, and nothing makes it go away. actually it’s been there all day and worsened with time. i can’t even get comfortable to sleep.  talk about cranky!

since i am awake, i thought i would share with you something that really stuck with me from my reading today.  i guess i can’t stop thinking about it because i identify so much with so many of the stories in the book.  it’s like reading my experience with a couple of details changed.  only with eye opening statistics —even for me, someone affected by this autoimmune epidemic that considers herself educated on the topic. anyway, this is a little excerpt from one woman’s story:

“To look at Kathleen, however, you would never guess what she has been through or what she faces each morning at the start of her day.  Like many people who suffer from autoimmune diseases, Kathleen’s symptoms remain largely invisible.  And as was the case with cancer several decades ago, those who have the disease tend not to talk about it. ‘People don’t see what lies behind the scenes in most autoimmune diseases’, she says ‘Because we go through ups and downs, you might see us on a good day, between several flares, when we seem to be perfectly fine.  You don’t know that we’ve just spent six weeks in hell.’  Few can imagine, she adds that behind her bedroom door even on one of those good days, Kathleen has to take twenty-two medications about an hour before she tries to get up, just so she can handle the pain when her feet hit the floor.  ‘By the time you run into me at the grocery store at two o’clock in the afternoon and say hello to me, I’m ready to nod and say ‘Oh, I’m fine, how are you?’  Kathleen worries, she says, that because autoimmune disease so often remains hidden from public view, she and other women like her will continue to be stigmatized as malingerers.”

I can hardly make it through the book because I keep putting it down and shooting off emails to make my project happen! I was so inspired before I read it, and now my drive is just insane. More about that soon… we just gotta get some details ironed out.  It’s going to be great.

Back to trying to find a position in which to be comfortable in my own body…

Until tomorrow!

L

sweet dreams