3rd Transplanniversary, Pharmacandidates, Jared’s Pacific Plunge and a Misfit Tree

I can’t believe I’m writing this, but it’s been THREE years since my transplant!  Everything I’ve been able to do these past three years is

Because Leason!

I love my Bronor! (Bro + Donor)

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Celebrating our special day – December 14!
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Starting the celebration off right with a morning sunshine honey vanilla latte at Urth Caffe.
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A special surprise celebration dinner with Todd, Rex and Mychaela ended with this 3 treat

Dr. F has been reducing my meds over the past year, and as I took less and less immune suppressants, he watched me closely for any reactionary temper tantrums of my eyes, mouth, skin, etc. (signs of Graft vs. Host Disease). I am stoked to announce that I am now officially OFF all immune suppressants! A while back, I started stockpiling my empty med bottles. I’m gonna get my artsy fartsy sculpture groove on very soon.IMG_6413

Filtering through my empties, I compiled a list of all the various sh*t that’s run through my bod in the past 3 ½ years.  As a kickback to you for deciding to take time out from wrapping, shopping, lobbying, cooking, decorating, campaigning, and caroling to read my platform today, you have been elected, as my delegate, to cast your ballot in my new game, “Pharmacandidates“!  Hidden in the caucus below of my actual non-partisan meds are some that you could debate are not legit.  HINT:  look for the hanging chads!

Meds

So, my eyes continue to be my largest source of discomfort, especially all the little dark blobs that constantly float across my field of vision.  Floaters are tiny clumps of gel or cells inside the vitreous, the clear gel-like fluid that fills the inside of your eye ball.  What causes floaters?  Anyone?  Anyone?  It’s when – anyone?  It’s when this gel pulls away from – anyone?  It’s when this gel pulls away from the back wall of the eye, resulting in – anyone?  Resulting in a posterior vitreous detachment 🙂  This is common for people who:  have undergone cataract operations – yep, have had YAG laser eye surgery – yep, have had inflammation inside the eye – yep.  No surprise I have floaters.  No surprise that the name of these little f-ers begins with that ultra descriptive 6th and most favorite letter.

I’m 100% sure you don’t want to hear any further bitching and moaning regarding the floaters in my eyes.  Sorry, but I’m invoking rule 391.47A: keyboard power.   You need to understand my peculiar gnat-swatting behavior and/or my inability to recognize my closest friends when they are standing right in front of me.  You could call me a liar with pants aflame if I hash tagged #nofilter on my Grams, ’cause my view of the world looks through this:

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Last month at my City of Hope blood test and check up, I saw Louisa, my next door neighbor while we lived on the transplant floor.  She was in a wheel chair, because she does not have the strength to stand.  She has had all of her teeth removed, because they were so damaged from the meds.  Her hair has not grown back.  She has not driven since her transplant (four days after mine), because her vision is so poor.  Her lungs are so unhealthy, she’s now looking at a lung transplant.  Yes, she survived, but she’s having a very rough time.  My heart breaks for her and her family.  Please think good thoughts, and say a little prayer, if you are so inclined, for Louisa!

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Jared and his beard were celebrities at the Be The Match 5K

Jared finished Walking Across Amarrowca!  After 7 months of walking and swabbing, he finally arrived at the USA’s west coast 🙂  The day started with the Be The Match 5K in Long Beach, CA, where Jared, through a human tunnel of hundreds of supporters, finished his loooong trek by traversing the sand and jumping into the Pacific.

 

Surrounded by heroes - Jared, Leason and Rex
Surrounded by heroes – Jared, Leason and Rex

 

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After the Pacific Plunge

 

With my amazing friends who walked on the Amarrowca team: Debbie, Kathie, Beth and Mary!
With my amazing friends who walked on the Amarrowca team: Debbie, Kathie, Beth and Mary!

 

 

 

 

 

 

 

 

Click on the image below to watch a short segment which appeared on the news:

 

With my mom and Jared's mom, Debbie with the map we presented to Jared highlighting his coast to coast route.
With my mom and Jared’s mom, Debbie with the map we presented to Jared highlighting his coast to coast route.

I am so thankful to all that supported my team with donations and by walking with us!  After the event in Long Beach, Todd and I hosted a celebration of Jared’s accomplishment at our house in Laguna Beach.

The Path wine
The Path vino

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Cheers, Jared!
Cheers, Jared!

 

 

 

 

 

 

 

 

 

 

 

For the previous two years, we have had a living Christmas tree, and this year is no different.  This year, however, we requested the most misfit tree of all the trees available.  I wanted the tree no one else wanted.  The tree that, year after year,  is humiliated, watching all the other trees get chosen, schoolyard dodgeball style.  The tree that, despite its twisted trunk, deformed branches, grotesque shape, missing scent, resident spiders and sparse needles, survived.  Against the odds, this fighter is the centerpiece of our family’s holiday celebration.  Merry Christmas and Happy Holidays to you and yours!

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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).

47 thoughts on “3rd Transplanniversary, Pharmacandidates, Jared’s Pacific Plunge and a Misfit Tree

  1. Happy 3rd Birthday to you! You are a true fighter and so glad you’re doing so well. Love your misfit tree, it’s beautiful and has the same spirit you do my friend!
    Merry Christmas to you and Ho Ho F—ing Ho! Had to throw and F word in thre since it’s your favorite letter!
    XOXO, jae TTF

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  2. I celebrate the sprit that you have and your sense of humor. You are such an amazing person but then you have amazing parents that must have had a great influence on you…God Bless You and hope you have a healthy NEW YEAR.
    Merry Christmas…Joy Beck

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  3. You could sell all your unused medication and take Todd on an around the world cruise. What a miracle. We are all so blessed to have you and Emilie with us this Christmas. 🎄🎄🎄 Bob

    On Wed, Dec 23, 2015 at 11:33 AM, Joselyn’s Brawl with Shulman’s Syndrome &

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  4. Jos, The pictures are awesome. After all of the meds, transfusions, transplants, needles etc., you look GREAT! Jared looks healthy after such a long haul. I recognize him from our trip across Nevada when we saw him walking towards home on Highway 80. Have a wonderful Christmas and a New Year filled with adventure and crossing off more items on your bucket list. We are so lucky to have you back from this ordeal and we realize that others, like Louisa, are not as fortunate.
    Lynn and Carolee

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  5. Congrats from an EB neighbor and bone marrow transplant recipient at C of H 8 years ago. Keep going girl. You’re strong and that’s what it takes. No room for sissies here 😍😍. Prissy Eeds

    Sent from my iPhone

    >

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  6. Wow, Jos….once again, you do not disappoint! Your amazing attitude and JOY just speak like nothing else could about your appreciation of LIFE.
    I really feel blessed to have you in MY life~caring & sharing & exemplifying a grateful heart.
    Soooooo very HAPPY for you to be celebrating your 3rd anniversary!!!! HUGE CONGRATS to lovely you…and your amazing family, too!!!!

    Love,
    Linda….and always, angel Ryan ‘rawdawg’ Thomas 🙂

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  7. You are friggin HILAROUS ! I am so extremely happy that you are now able to lead a fairly normal life (except floaters). My heart and prayers go out to Louisa. Your amazingly positive attitude has probably helped you get to the place you are today. Merry Christmas to the whole Miller family ! Scott

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  8. Warm greatings and a big hug from Bermuda! You are a true inspiration, a beautiful woman with an amazing soul… I am wishing you and your love ones a Fantastic Christmas! xo Diana ( Barracuda Grill)

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  9. Fabulous post, as always. I just love your Christmas tree. Sad to say I didn’t get a living tree this year because the inventory was sparse because of the drought. In retrospect, I should have taken on a reject, just like you did! What can I say? You continue to inspire in all ways. Sending love and light to Louisa. Here’s hoping and praying that the worst is behind her. It’s not right that anyone should suffer like that. Perhaps her soul (like yours) is highly evolved and she has taken on what no average mortal could possibly endure. May you, Todd, Mychaela, Rex and all of your amazing family have a wonderful Christmas.

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    1. I hope your Christmas and New Year’s Day was fabulous, Mary! Your love and support has been huge for me. I appreciate everything, including joining the team and walking in Long Beach! Thank you so very much, dear friend! XO Love to you and your beautiful, expanding family!

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  10. So, so grateful for the amazing progress your body has made. Love you and your family so much and wish you all a very Merry Christmas. Praying for Louisa!🎄🙏

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  11. Joselyn,

    Merry Christmas and you are a miracle. Thanks for always sharing your heart with us! Have a beautiful Christmas with your amazing family! Love you!

    Gretchen

    Sent from my iPhone

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  12. Hi Jos, Happy 3rd! So glad Dr F has taken you off the immune suppressants. A great harbinger of good things now and to come. And Dr F is never wrong! Sorry to miss the event to celebrate Jared’s walk. Only a wedding could keep me away. Thanks for the update on Luisa. My thoughts, prayers and love are headed her way. Ho Ho Ho and Merry Christmas. You rock girl!!

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  13. Great to hear from you!!
    Wishing you Todd and family Merry Christmas and a very Healthy and Happy New Year.
    Miss seeing you and Todd!!

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  14. Jos, Happy 3rd Anniversary & Happy Holidays! You were absolutely given a gift, the gift of life, and I’m so glad to see you are making the most of it! Keep it up!

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  15. Jos , Happy 3rd Anniversary and Happy Holidays! You were given the gift of life and it is sooo good to see you are making the most of it! Keep it up!

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  16. Jos
    You are a true hero and survivor!!!!
    Loving that Christmas tree.
    So proud to have you as my sister in law.
    Super love you:)))

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  17. Hi Joselyn,
    I just read this! I’ve so enjoyed reading your Blog over the years. Not to say I’ve enjoyed reading about your struggles, pain and tribulations but how you’re managing and able to share every aspect of your journey so openly and with such humor. You are a very special human being! I’m so happy that you’re doing well! God bless you and your family.
    Happy 2016 💗
    Love,
    Kristin

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  18. Thank you for writing this blog and allowing us to check in on you. I am always inspired by your courage, positive attitude, and relentless will to survive and thrive. I thought my wife had a lot of meds between the lupus and rheumatoid arthritis, but your stash blows it away! After all you’ve been through it’s great to see pictures of you standing in the sun! (even with the mandatory ballcap and shades). Keep up the great work and i hope those floaters stop reproducing at some point so you can stop peering through the little effers.

    Like

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