Lupus Hospital Vacation

Lupus surprised me with the gift of an all-expense paid mini-vacation to a hospital in an undisclosed location.  Lupus said she was, “Sick and tired of hearing my brain constantly complain via chronic headaches and migraines, blah, blah, blah.”  I’ll admit I agreed that a lupus hospital vacation was needed because my head was under way too much pressure lately and needed to let off some steam while I got some rest.  (Good luck resting in a hospital with nurses waking you every 2 hours to poke and prod you with temperature sticks under the tongue, needles to draw blood, or meds to shove down your throat.)

*****WARNING***** You are about to see my face…


lupus hospital test


Little did I know that my lupus hospital vacation would entail drilling a hole into my skull (literally), screwing a bolt into said hole so the doctors could monitor my head pressure, and attaching more wires to the bolt and my body than when I set up my stereo and home entertainment system.  As I laid in the hospital bed, I felt like someone from the Matrix, all hooked up to multiple monitors while being closely observed.




The bolt sticking out of my skull and the wires made me feel like the long lost 3rd cousin, twice removed from the Great Grandfather of Frankenstein.

lupus hospital test

(Picture of my head. The bolt was under the bandage.)

A lovely combination of glue and packing tape was used to cover the bolt.  All that sticky stuff was pasted directly onto my hair.  (Thanks doc!)  It’s going to take me a month to get all of the glue out of my hair. 


lupus hospital tests

(Picture from my perspective) 




The stickers and wires attached to my body made the landscape of my skin look like a colorful spider web.






The reason for all of the vacation fun, was because I have a CSF  (cerebrospinal fluid) leak.  I have mentioned my leak in passing before.  I feel the time has come knocking on my skull to share all that I have endured with my CSF leak.  Up until now it has been easier to focus my writing on lupus because that seems to be more of a peripheral antagonist to the story of my life.  Whereas, this CSF leak has weaseled its way into the leading role among the ensemble of my chronic diseases.

I’m back home now.  Woohoo!  As I recover from my “vacation”, I need to recharge my energy, restore my motivation, and permit myself to do nothing while my body is healing.  Doing nothing is ironically hard.  I said above that I have endured a lot with my CSF leak, using the past tense of “endured”, insinuating this leak is now historical to my lifecycle.  But, alas my CSF story has more to come.  I’m too tired now to share the juicy details.  But I promise to do so soon.

For now, I rest and ruminate on other ways to release some pressure that do not involve skull drilling and wires.  A thought occurred to me when I got home.  Should I be worried that the doctors did not plug the hole in my skull with anything?

lupus ride

(Freedom ride from the hospital, back to home)

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