50 Shades

Two years after my transplant and I was still dealing with some crap symptoms like bright red patches on my face and legs, the never-ending eye inflammation, wilted brain function and a nagging tummy shituation (if you know what I’m sayin’) that I’ve dealt with since the beginning.  I figured it was all due to the sucky cide effectz of my meds.  Then I was talking to my friend, Spencer, who told me about this miraculous blood test that measures your cells’ reactions to every type of food.  He said you learn which foods are good for you to eat, and which foods cause inflammation in your bod, which triggers your immune system to activate and wreak havoc.  So, I figured, what’s OMP – One More Poke?

I went in for the test and three weeks later met with Dr. S5, who presented me with the results and my new diet restrictions.  It’s bad.  It’s rad.  It’s sad.  It makes me mad, but I’m improving more than just a tad, so it also makes me glad.  You’re stoked there are no more rhymes to add.

Here’s just a short list of my no no’s:  gluten (no beer, bread, pasta, cereal, crackers, etc., unless I want to eat the gluten-free varieties, which suck), soy (in almost everything, especially Asian food, which I adore), strawberries, chocolate (no, dear God, not chocolate), grapes (no wine), green leaf lettuce, olives (including olive oil), black pepper (seriously), apples, melon, salmon, oregano, blueberries, squash, kale, and many, many more.  The one that really sent me over the bummer top was  mung beans!  I’m culinarily devastated about the mung beans.

menu
Wow! So many delicious choices! Well, let’s see… I think I’ll have the chicken.
IMG_3548
Feeling the zen with a tree pose in the labyrinth

I recently spent a long weekend at a slice of heaven near Tucson, Arizona with my girly friends, Karen and Sharon.  This place is  a destination spa, with yoga, meditation, ropes course, rock climbing, mountain biking, horseback riding, hiking, gym workouts, fitness classes, pool lounging, healthy eating, and endless seminars on creativity, cooking, coping, arts, and tons more.  It’s AWESOME!  Anywho, Karen and I signed up for a horse painting experience.  When we told peeps we were going to paint horses, we were asked, “oils or acrylics?”  We responded, “No, we’re going to paint a horse!”  “Oh, like a ceramic horse?”  “NO, We’re going to PAINT A HORSE!”  Blank stares.  The idea was to paint something you wanted to purge ~ something you were going to wash off the horse when you were ready, symbolizing washing it out of your life.  It was fantastic, apart from the horse mistaking your paintbrush for a fly and twitching his skin, effing up your work.  It didn’t matter ~ it added to the imperfect beauty of the exercise.  Cathartic beyond words!

With Rooster, my canvas and my friend
With Rooster, my canvas and my friend
I painted myself in a broken bone marrow jail with the beautiful outside world just beyond reach
Selfie with Rooster after his bath
Selfie with Rooster after his bath

So you saw that this place   offered mountain biking, right?  Well, I’m up for anything and everything these days (YOLT, baby!), so I signed up for a beginner mountain biking class.  I’ve done lots of biking (mostly road), but I don’t know the proper techniques of riding on dirt.  When I saw my fellow classmates, I thought, “Oh geez, this is going to be lame.  We’re probably gonna have training wheels.”  We started out riding in the freaking parking lot, learning how to brake and do such advanced moves as standing up out of the saddle.  Gnarly!  Pretty soon, the instructors thought we had grasped these skills and were ready to get out on the dirt.  About time, clowns!  We cruised around on some wide, flat trails then came to a group stop.  From this point forward, everything changed.  Our once cautionary, charming instructors were evil boss men.  We were taken on a super duper narrow single track lined with cacti on both sides.  Huge rocks that just barely missed your pedal, but only if your feet were completely level.  Giant logs sitting across the trail that we had to go up and over.  Tight turns.  Hills.  Pretty rad sh*t for a beginner class, no?   I felt like I was in Navy Seal training school.  Ladies were eating sh*t left and right.  They cried.  They said, “This is NOT fun.”  They quit.  They left the class.  Not me, I effing nailed it.  After about 20 minutes of the hard core sh*t, there were only a few of us remaining  and our commanding officers told us we had to conquer the “test loop.”   Successfully negotiating this insane obstacle course meant you could  graduate to the intermediate class.  My hands were slick with sweat and could barely grip the handlebars.  My turn came, and with all eyes on me, I took off.   Over a couple of 12″ logs, around and through the big rocks.  I was owning.   Then came the tightest curves you’ve ever laid eyes on, and as I was rounding the last one, I had to slow down so much that I could no longer keep my balance.  I fought like I’ve never fought before, but I just…

Intermediate class
Intermediate class

My left quad (a little north of my biopsy disaster) hit a rock.  Hard.  Then I rolled into a cactus, imbedding thorns into my skin and my cute Lulu Lemons.  I failed, I wanted to tell my instructors that they could suck it, but I kept my cool and quietly rode back in pain.  No intermediate class for me.  Boo F-ing Hoo.  Ever since my crash, I’ve had a dent in my left quad.  That particular leg has major issues.

Speaking of issues, my recent blood test was interesting.  I’ve had nearly 300 of them without incident, so I was due for some blood test excitement I guess.  Everything was proceeding as normal.  Check in, get armband, sit and wait, name called, plant ass in blood draw chair, phlebotomist approaches, triple check armband, request butterfly needle, choose winning arm, rub with alcohol, apply tourniquet, assemble tubing and vials, insert needle, scream to others, “Bring gauze!”  The tubing had a defect that sent my blood squirting all over the place!  Five blood peeps snapped into action and there was suddenly gauze everywhere, sopping up the red.  It was cleaned up and the vials were finally filled properly and I was on my way.  One of my tests was a measles titer, which will tell us if I received any measles antibodies from Leason.  I can’t get a measles vaccine (or any live vaccines) until I’m off my immune suppressants, so that would be some nice intel to have.

GOOD NEWS:

This silly blog that you have just wasted 10 minutes of your life reading has gone over 90,000 hits in 116 countries!

And more importantly, Dr. Fantastic has finally started my taper of Tacrolimus, and so far, I’m not showing any signs of Graft vs. Host.  I’m cruisin’ down the road to a full recovery.  50 Shades of YAY!

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).

60 thoughts on “50 Shades

  1. Each time I read one of your post it brings smiles to my face. I find a new energy and a new belief in I can do anything. JUST TRY. You inspire me everyday to be better, to live life and know I can. Thank you

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    1. Well I missed jumping out of a plane and glad to hear I missed the mountain bike class. If you couldn’t pass then I surely would have sucked the big one too. I will try most anything else so check with me next time! YOLT Jos…you’re doing it well and keep on truckin’ girlfriend!
      PS- flea market adventures and wine tasting are more my style and anytime you want to travel somewhere count me in!!

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  2. As ever, your fearlessness, your energy, your humor inspire us. How lucky we all are to have you to show us how to f*ing DO IT! You go girl; we are all behind you.
    P.S. Want to crash into the glaring reality of senior can’t-remember-itis — join me in a beginning tap class. “What comes next?”
    S3

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  3. Why when reading your blogs my life feels so unadventurous…except for the blood fountain, I’ll skip that one. You are one rad MF! Hoping you’ll be signing these words in BarnesNoble soon!

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  4. Very funny, as usual. Glad you survived your mountain bike experience – your body and spirit are truly amazing. Interesting diet too. I just read “The Autoimmune Solution” by Amy Myers, M.D. and she suggests eliminating a lot of the food on your list. Apparently 80% of our immune system is in our gut and an unhealthy gut from eating bad food can cause autoimmune diseases. It’s “food” for thought and I think you might enjoy the book. I can relate to your lack of choices in restaurants though…Ugh! It’s totally worth it though to feel better. Hope to see you soon.

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  5. You continue to bring a smile to my face with your sense of humor and addiction to living life to the fullest! Glad you girls had fun! TTF

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  6. First of all, Jos, I am SOOOOOOOOOOO pleased to hear you are on the road to complete recovery! As Ryan would say WOWSERS….well, he’d say ,Wowsers in my trousers’, but I’m not….LOL!!
    Could not be more excited for you!!

    Like everyone has mentioned your humor, spirit of adventure and attitude are just momumentally AWESOME!! I too, am inspired beyond words when I read your posts!!

    Praying for the speediest possible mending…..and sending much love and many giggles…xoxoxo

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  7. Here’s a new acronym (didn’t even think about that word until I read your blog) for you FFLMT.–Frigging Funny Lady of Miserable Tales. Loved the bone marrow jail on the side of a horse.

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  8. SO f*^$!ng HAPPY for you!!!! You are such a hoot my dear!
    One question though…..what if the chicken ate an olive pit when no one was looking while he was in the guillotine line????? hhhmmmmm????
    Happy trails my EF friend!

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  9. When we go through the storms of life we can either chose to be bitter or better. You have chosen to be better. Thanks for helping all of us want to chose that path!

    Love you,
    Marilyn

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    1. You have weathered a major storm and have chosen the better path, too, Marilyn! You are a huge inspiration to me! Your grace is a beautiful thing! Love to you, Kellie, John and James! XO

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  10. Thanks for sharing your latest news Joselyn, another masterful piece of blogging. That 10 minute read was so much better than the Oscar show on right now! Keep up the great healing work.

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  11. I recognize that Zen setting! Was at Miraval end of January. Did I just miss you? Love the mountain bike recap as had similar experience. Did you encounter Wyatt -the Yoda of cowboys? Love that place. We’ll have to compare notes about cardio drumming, life threatening challenge course and Ayureveda healing treatments. So glad to hear you are on the mend. Thanks for keeping all us fans posted. You are an inspiration!
    xo, Stacy

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    1. Hi Stacy – Yes, Miraval absolutely rocks! I did not try the life threatening challenge course, but I watched tons of ladies eat sh*t up there! I skipped the cardio drumming as well. I just knew I would disrupt the zen of that class with my condescending laughing. The Ayureveda oil stream is something I could get used to, however 🙂 Can’t wait to go back! Hope all is well with the Singers! XO

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  12. Okay, I’m feeling a bit like a lazy a** in terms of adventure and risk-taking fun … although living vicariously through you spares me the agony of cactus needles! You go, Joselyn!!

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  13. Spraying blood, off road biking, painting horses and ryming everything in site. That’s our Joselyn. I know you will find lots of stuff to eat. Cook Todd is alreadyon the case. Keep improving and never give up your beautiful and infectious “can do” atitude. Love, Bart

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  14. You rock Joselyn. Super woman indeed. So interesting about the food blood test! Would LOVE/HATE to get that test. Am off gluten since last March – ti’s not so bad once you find the good stuff! And bonus- no more crippling stomach aches. But some other foods are giving me problems – tomatoes for one. Are you sticking to the foods in the results? Interesting…. (Try Nate’s cookies! They’re sooper delish. )

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    1. Hi Jill – Yes, I’m sticking with the food restrictions, and it’s not so bad. Like you said, if you can find the good stuff, it’s so worth it! I’ve never eaten tomatoes. I have always hated them, ever since I was, like, four 🙂 Maybe you should join the Tomato Hater Club 🙂

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  15. Charge it!

    When I did an endo mt. biking in New Zealand my daughter told me it was because I was going “way too fast”. My kid tells me to slow down. Loved that.

    Keep that peddle to the metal attitude, girl!

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  16. Hi Jos! So funny as usual. I’m sorry to hear about the diet. You are going to be so sick of chicken! After a similar incident where I ripped a hole in my Lulu Lemons, I decided mountain biking wasn’t for me either! Hang in there!

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  17. Yikes, cactus attack and gluten gut all at once. You know Scott broke his collar bone doing that damn mountain biking, right? Ugh. BTW, the GF food is OK when you know which brands to buy. That’s the only bread we eat at home now, lol. I’ll coach you. Keep trekking, Warrior Queen!

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  18. Hey Jos, you are way beyond intermediate. If you aren’t a pro by now, nobody is. We are so happy you are able to ride bikes, climb mountains and paint horses, but that food thing is no bueno. Todd said I should get tested, but if they told me no wine, well I may as well hang it up. I’ve made it this far eating and drinking what I want and still feel good, so you may want to ease into the food and wine restrictions. Lynn and Carolee

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  19. Hi Joselyn! Vivian sent me the link to your blog and I’ll be working with your awesome friend Jared during his trek across country. 🙂 I am MORTIFIED by your do-not-eat-list but happy that you’re alive and kicking to complain about it! I can’t wait to read more

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