Tummy Sticks

I’ve been going along, living each day, thanks to my amazing brother, family and friends.  Back in the saddle of life kinda thing.  I was literally just thinking that I was getting into a rut, even taking my miracle life for granted.

– Enter Saturday morning –

My face was puffier, more inflamed and fuglier than usual.  Nothing to panic about (I’ve had these symptoms on and off since well, I was gonna write my transplant but I’m going with my high school days).  However, I was on guard for other symptoms.  Those appeared in the form of a rad blistery rash all over my bod.  Up to City of Hope I went for what I thought would be a quickie visit.  Maybe a new ointment to add to my arsenal, then I’d be on my way.  Southbound 605.

Not exactly how it went down.

Because it was the weekend, I saw an on-call doc.  He reviewed my history, took one gander at me and decided to take some biopsies of my blisters.  My nurse declared my veins were nice (not a compliment), and opted for the extra wide needle and tube.  Joyous insertion!

Donning surgical garb, the doc came at my neck with a scalpel.  When I reared back with a terrified look, he responded with, “Don’t worry, I used to be a surgeon.”  What happened that he’s no longer able to practice surgery?  Narcolepsy diagnosis?  Sudden arm tic?  Once the jars and slides were filled, he told me to pack up, because I had earned a free stay in the  Helford Hospital Wing to figure out what I had (or what had me) and to blast the hell out of it.

Soooooo, here we go again with the myriad reasons sleep is a distant dream in the hospital.

  • Hospital-issue gown that may be on trend for spring, but sports so many ties, snaps and extra yards of plastic fabric that you nearly suffocate in the sweaty twisted heap you become at 3am
  • Fluorescent lights just outside the door that have no problem penetrating your room’s curtains
  • Unplugging your IV tree, then wheeling to the potty to pee again and again and again from the super sized fluid bags pumping through your veins
  • Tick tocking clock you wanna rip outta the f-ing wall
  • Meds that jack you up

Requesting meds to jack me down.

 

I got my diagnosis this morning:  Diseminated Varicella Zoster, a form of Shingles that erupts over the entire body, as opposed to the usual confined area.  Not sure how I picked up this little lovely, but Todd and I were recently in Asia, where we for some reason, decided to rub bat cave mud on our faces…. #batshitpox ?

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Enter a caption

Because this virus is contagious and I’m surrounded by immune compromised patients, I’m in an isolation room (again), and my cute nurse looks like she would be more at home in a lunar rover than a hospital room.  Everyone who enters my negative pressure room dons the haz mat costume.

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Earth to Nurse Lisa…

 

Smelling, hearing, tasting, seeing and feeling my surroundings has taken me right back to my original stays in the clink.  It’s been over 3 years, but it seems like 3 months.  Deja Groundhog.  This experience is the same wonderful City of Hope, with a few improvements.  One of my favorite elements of this stay was not available to me when I was here previously, due to the fact that I had virtually no platelets before.  To ward off blood clots, patients with enough platelets are given an injection of blood thinner called Lovenox each and every night.  The fun part is that this nightly delight goes in the abdomen.  I have affectionately  started referring to these shots as Tummy Sticks.  As the needle is plunged into my pudgy paunch, I get a huge smile on my face, picturing Vince Vaughn trying desperately to negotiate his way out of an unwanted game of tummy sticks.

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Playing Tummy Sticks

I also have been enjoying the secret Chinese menu.  Who knew?  While spending 90 nights here in 2012/2013, I had no idea this existed.  Thank you to my absolutely amazing nurse, Lisa, for spilling the mung beans.

So, I’ll be here until all of my blisters have scabbed over and I’ve finished my entire dose of IV Acyclovir.  We are keeping a close eye on my organs and eyes to make sure the infection doesn’t wreak any havoc.  Just a little bump in the road that has provided me with the precious reminder that I am the luckiest person in the universe, and I need to never forget that every day is a gift!

Thanks to everyone who has worried about me and sent love, good thoughts and prayers!  XO

 

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I am a survivor of two extremely rare diseases, thanks to over 100 blood transfusions and ultimately, a bone marrow transplant. My blog, joselynsbrawl.com, chronicles my adventures through medical offices, operating rooms, clinics, transfusion centers, hospital transplant floors, victory celebrations, and finally my bucket list items – all with a humorous and sometimes profane twist. My goal is to inspire others not to give up on life or anything else, and to understand that it’s actually possible to enjoy any experience, even battling a life-threatening illness (or two).

56 thoughts on “Tummy Sticks

  1. Oh Sweetie, Of all these incredible journey’s you’ve taken & this one turns to Bats-it!!! Shingles can TEST your spirit, sanity & patience but I know one again the power of your inner strength will carry you through!!! Sending love across the miles to you & Nurse Todd!

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  2. Jos!! Thank you for sharing your comically optimistic, sweet, vulnerable, beautiful self. You are truly an inspiration and I am so grateful to witness your strength, tenacity and determination.
    Big hugs and love from Colorado!!

    Like

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