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

 

Posted by

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. @#$%^ * &()!_#$$%%%$$$$$$$$
    You have been so on my mind and I was thinking how much I miss your updates but how great it is that you haven’t any news – I take full credit for the jinx!!!!
    Sending lots of love and prayers.
    You realize this is a lousy way to keep your mom from going to Good Friday services 😀
    Kelly and I will light a candle for you and know that you will be home in time for your Easter goodies.
    Shingles – you have no idea who you messed with!
    Go JOS!
    xoxo
    erin

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  2. oh gosh josh! i had shingles and it’s a biatch but am sure you’ll tough it out or should i say fuck it out and will be up and at em’ in no time. sending love and light-
    mj

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  3. Jos, I hope you get better real quick and return to the comfort of your home. It was so good seeing you last week! I can’t believe things turned so quickly. Sending lots of love and prayers for a speedy recovery so you can get back to being you.

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  4. Never ever lose your sense of humor and god’s speed in getting rid of them blasted shingles ! Our thoughts are always with you.

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  5. Jos, NOT AGAIN. The hospital probably loves having you there to brighten their day with all your funny outlooks. Not the usual patient I’m sure. Stay strong. thinking of you. barbara Date: Tue, 22 Mar 2016 06:02:56 +0000 To: bkneeshaw@ca.rr.com

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  6. Oh Jos, so glad to hear you found out what it was and so sorry you have to be back at City of Hope. We are all praying for a quick recovery so you can resume your adventurous lifestyle. You constantly inspire us!!
    Love you!
    💗Marilyn

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  7. Hey Jos, No Sh&$)(t on the gift of each and every moment in every hour of every day! Thanks for your love and encouragement and here’s right back at’cha! Love, Carolee

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  8. We are so sorry to hear you are back in the C of H with Shingles of all things. At least you know what you have and will be back to your healthy self soon! Love you.
    Helen & Jed

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  9. ….a nurse in a haz mat costume and a secret Chinese food menu! Wow, City of Hope has it all…who knew! Sending you healing wishes to to the strongest, FTFO kinda gal I know! Xoxo, jae

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  10. Jos, You are the best example I know of where “reality is stranger than fiction”. Who can make this stuff up? So sorry to hear yet another bizarre tale. I know you will conquer this with the same fervor, incredible attitude and sense of humor as those in the past. Always thinking of you. Lynn

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  11. Joslyn, praying for you…for a quick and complete recovery and for small bit of shananagans while in COH…let them know you are there.

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  12. Sorry to hear about all of this Joselyn, but it sounds like you will once again be back to good health with the wonderful care you are receiving! Enjoy the Chinese food… “spilling the mung beans” Ha! You are hilarious, brave and inspiring.

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  13. I don’t know how you do it Joselyn, but you manage to make your speed bumps in life motivational. Please take care, and thank you for reminding me that everyday is a gift.

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  14. Oh Jos I am so sorry to hear you are back in the hospital, but glad to know you have a diagnosis and hopefully the meds will kick the sh** out of it quickly. You are such an inspiration. You handle every curve life throws you with grace and humor. Thinking about you and sending big HUGS and LOVE your way.
    xxo,

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  15. Yikes Jos! Why does this remind me of when you were pregnant and you got those awful rashes. Kind of reminiscent in a way… like something has been reeking havoc for a long time. So very odd… Praying for you. K

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  16. Oh my gosh, this is unbelievable. I’m so glad that it is what it is…I guess, right? I have been thinking of you non-stop, praying that it wasn’t serious. Not that this doesn’t sound serious. You are amazing Joselyn. Pretty much everyone’s hero. J Sending you tons of love, prayers and best wishes!!

    XO Leslie

    Leslie Figge Chatillon

    Figge Photography

    250 Newport Center Drive

    Suite 104

    Newport Beach, CA 92660

    Phone: 949-644-6933

    Fax: 949-644-4379

    http://www.figgestudio.com

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  17. Dear, dear Joselyn. Your photo with the bat mud is so adorable and happy, can’t think of a witty comment. You are a reminder to all of us to appreciate every day with JOY. You are, by far, the bravest woman I know,or don’t know, even historically! Most of the photos of your travels since you have been able to travel again scare the shit out of me! And now, dammit, you have to be back there for a while. Rest well, and dream of your next adventures with your kind, equally adventurous Todd. With loving thoughts always, all the Delines.

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  18. Oh bummer, but so glad it’s treatable! Hang in there! ❤️ Love your sense of humor and outlook on life. It’s beautiful.

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  19. Wow, Jos! So sorry that you’re back in the hospital….even if it is with your incredible wit and cheery outlook! I’m thankful it’s a well known, more common ailment, which prayerfully, will be under control….then be healed, soon!
    Covering you in prayer…for some REST, too.
    Blessings of healing & peace, Jos.
    Love you, Linda & angel Ry 🙂

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  20. Hello there Jos, What a tough development this is. I just returned from the Galapagos to read this in full. (You been there yet?-definite bucket list) As always your amazing attitude transcends your described situation which is 80% of the battle as you know so well. So you had a doc who “used to be a surgeon”. I hope and pray that we can say that, once and for all, “you used to be a patient” and knowing you, it won’t be long now. Time to press nurse Todd back into service. Bats*it massages, OMG!! Come home, we miss you.

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  21. Well, I would consider this good news;) So glad you got a quick diagnoses
    and are getting treatment. Wishing you a speedy recovery. Love ya, Wendy and Fam

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  22. You are such a gift. I am so lucky to have had the privilege to care for you the last two days. Instead of giving you medication it felt like I should have done a spin class with you or a Pilates class followed by a coffee and some conversation. You feel like an old friend, only young and cute of course. Thank you for being amazing and positive with this temporary event . Wishing you and your amazing family much Love Happiness and Joy always . Lisa the nurse from the planet City of Hope…

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  23. I’m sure you have served your time and should be able to enjoy life!! You will…
    You are much more daring than I will ever be!! I hope the bat mud was exquisite!
    Your always in my prayers and I know you’ll be home soon! Take care of yourself!!

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  24. Jos,
    Sounds like the best of bad news! You are such an inspiration and gift to us all. Thank you for reminding us not to take life for granted. We will be praying for you! XO, Sommer

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  25. Jos, I’m so sorry you are having to go thru this …again! Be strong, take your shots, heal up, and get outta there!!!

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  26. Joselyn, Sending big hugs and prayers your way, wishing you a speedy recovery. Sounds like you are on the mend- and in ” Joselyn Fashion” making the best of a tough situation. You are amazing- such an inspiration to all who know you. My heart skips a beat every time I see your blog pop up in my email- first worry, then totally engaged in your stories, humor and wit. Get well soon! We look forward to hearing about your next ” bucket list” adventure. Stay away from nasty bat mud – yikes!
    Xo K&B

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  27. You are one Brave fighting girl. You always get me to slow down and read your words. I thank you for that. I do however think you need a pair of my darling Italian chic mules. I have 6 colors. Check them out on line and tell me what color and size you are and I can drop them off at your house. Hell if you have to do all this crazy shit, you might as well look chic as always. Fifivenezia.com. We also have Fuchsia and Grey. I leave for Mexico on Saturday but I have time to get them to you.

    Hang in there.
    xo Kim Fox Sorenson

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  28. If you keep talking about all the Love Knocks you’ve been getting at City of Hope you are going to make Todd jealous. 🙂

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  29. Joselyn:
    I won’t bore you with my always hovering “other shoe dropping” thing that you develop as a 7th sense after, well, you know. I am grateful that yours is just a bat dropping thing that you absorbed from one of your once in a lifetime experiences that most of us only dream about but you seem to do as a natural life expectancy. No pressure here, but you do live out the fantasies of so many of us, so hang in, keep posting, sleep and recover please. Wish I had the balls you have. But my “baby” is going on SAS next semester so maybe I’ll meet up with her in one of those destinations that you have probably already visited and post my own adventure. Seriously, you got this. And so many people who support you.
    Gina Sammis

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  30. Joselyn once again, can I say you are one tough cookie… With humor and optimism you remind us all, to be grateful for each day on this planet! Wishing you a speedy recovery and lots of love and blessings…🙏🏻🌸😘💕

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  31. Hello Jos: We are so sorry to hear about your latest ailment, but consider this just another bump in the road for you. You have had so many, and we know you will conquer this one just like the others. Our hearts go out to you, Jos. You have been through more than any person should ever have to go through, yet you remain so positive. You are an inspiration to us all. You are such an amazing person, Jos, and we all love you for that. We hope this latest bout ends quickly and you are back to feeling your old self again. Take care, and always remember all the people who care about you.

    Love you tons,

    Love, Uncle John and Aunt Went

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  32. OH Jos! I can’t believe you are going through this! So not fair! You have been on my mind so much lately. I am sending all my prayers, good thoughts and love to you!!! Stay strong honey!

    Like

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