I really can’t believe it’s been 100 days since my transplant! I still wake up at night, thinking I hear that damn vitals machine approaching. I’ve been virtually cut off from the outside world for 7 months – no restaurants, no visitors, no leaving the house except to go see a doctor or check into the City of Hope Hospital. My strict sterile bubble is about to f-ing burst!
My blood counts were down slightly this week, but Dr. Fantastic is still optimistic about my prognosis, and he has given me some new, less restrictive rules to live by (with caution) 🙂 I can now eat almost anything I want (no East L.A. taco street vendor undercooked exotic meats that have been sitting around for a month unrefrigerated – bummer!). I can now have limited visits with VERY HEALTHY friends. We can bring our plants back into the house. I can drive. I don’t have to sanitize/sterilize my towels after each use. I can even have a glass of wine or a beer!!! Did you comprende that? Wine and beer!!!
I have also dropped a couple of meds recently, with more to be dropped soon, IF my counts come back up. I no longer take the nastiest pill of all: Prednisone. It’s true what they say: PAB (Prednisone’s A Bitch) I was on 60mg of this sh*t for many, many months, and was just tapered down to 5mg, and now 0mg. Yipee! I’m hoping the brutal side effects will soon go away, too, like my chipmunk cheeks, my beard and mustache, and the prevention of the healing of my hematoma on my leg. Don’t ever forget HAFATS. (Hematomas Are Fugly And They Suck) It is clear that another one of Prednisone’s side effects is not subsiding, and that is the swearing like a f-ing sailor. I’m afraid that’s here to stay. My dad even gave me my very own f bomb! He’s so proud 🙂
I’m feeling like I have more energy now, so I’m working on some sewing projects, taking back the reins of Global Grins, the non-profit Todd and I started a couple of years ago where we deliver toothbrushes around the world www.globalgrins.org, and I’m running about 25 miles a day (jk on that last one – my numb leg has me on the I.R. for a while.)
Thanks again to all of you who have reached out to me in so many ways!!! I could never ever ever ever have made it to this milestone without all the fantastic support of my awesome family and friends, my super duper caregiver, Todd, and of course, my life saving hero, Leason F. Pomeroy IV! With everyone’s help, I feel like I’m nun-chucking Aplastic Anemia and Mr. Shulman in the nuts 🙂
Crushing mussel shells on my daily beach walk – it’s a highlight of my day fo sho.
JOSELYN'S BRAWL 
You look fantastic with a beard and mustache!!!! Congratulations on day 100!!!
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you look amazing! so pleased its all going in the right direction x
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Wow! You have given new meaning to GLOBAL GRINS! Happy Day 100!
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Wowowowowow! Congrats jos! Enjoy the baby steps of your freedom! So excited for all y’all! Xoxoxo krissy
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Congratulations! You are truly amazing…Enjoy that first sip of wine!!!
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I think you should market those F-bombs!
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GGGGRRREEEEAAATTTTTTT Sunday morning news!!!!! (my personal fav is that clever F bomb from your daddy!!…hilarious!! I SO want one!!)………..
Really glad your email arrived right now, cuz, we are headed to our little beach church and can tell the “strangers” (not strange…but, peeps you don’t know…:) there who have been diligently praying for you!! They’re gonna LOVE hearing this news!! Send MORE good news soon!! We are SO incredibly happy for you and yours, Jos! You are a rocking stud-muffin…….
XOXO…….K and D
IPad – Kristi DeCinces
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No more prednisone and you can now have wine and beer?! What could be any better?! Sounds like it’s time for a celebration! (with only very healthy friends and family!) Although I know you will miss that buffalo hump, you are finally on your way to a full recovery. Take that, Mr. Shulman! Way to go, champ! XO
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Congratulations, Joselyn, on reaching
Day 100! You are an angel in this world!
I’m going to beat you to the mussels tho.
I collect them (whole), spray them gold and hot glue them (along with other shells) on my Christmas garland!!
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OH JOS! I don’t think I could have woken up to better news! I have goose bumps from head to toe! I don’t think I have ever met a better trooper! Your strength, your wit and your determination are beyond words! We can’t wait to to play!!! Keep it up! You are the best!
xoxo
Nancy
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Amazing! This is incredible news 🙂 So happy for you J-Rock. You are pure inspiration. I wish you continued success. Have an amazing Sunday 🙂
Nothing but Love
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You ROCK girl !!!!
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Halle fricking lujah!! I agree with Amina!! YOU ROCK…… and continue to inspire all. Thrilled for you and your family!!
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This is such great news! Congrats on Day 100!!! So happy to see you with a smile on your face…things are moving in the right direction. So excited for your new baby steps to freedom from the bubble and meds…you must be thrilled!!!
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Joselyn! You’re breaking out!!!!! I’m so happy for you!!! Please let me know if you ned ANYTHING and I’ll bring it girl!! Jeef has my # you can text me and I’m on it! Your old school Tustin crew. : *
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Yippee!!!! So happy for you!!!! Love and hugs from the whole McCutcheon crew!!!
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Yahooooo! Feliz ciento dias!! Fantastic picture of you. You are like a bubble fugitive. Escape From The Bubble….it is your flick to star in. We are all so happy for and inspired by you. We had your 100 days on the calendar and Elias asked if you got to do a 100 days of school party. I told him it was even better. Just post a list of the foods you are craving and they will arrive. Way to stay strong!!! xo, The Singers
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100 days…a milestone indeed and so happy you are here! Beer and wine….hope you’ll be having one of those tonight! Restaurants, no mask, plants back in the house, foof restrictions lifted…you are going to be on fire!
So happy for you on this miraculous day in your new life with your miracle man Leason’s bone marrow! Fight on sister!
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100 bottles of beer on the wall…Now you can take one down, maybe not pass it around yet but hey it’s the little things!!
You crush it girl!
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…your “joie de vivre” is unparalleled, an amazing gift to all of us. Thank you Jos for sharing … keep crushing those shells…Happy Sunday….happy week……Silvia
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Wow! That is the best news ever! I can’t believe how far that you have come! We will continue to pray and hope to see you driving down the hill soon. Yeah! Love you and xoxo…Dick and Gretchen
Sent from my iPhone
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What great news. There are thousands of smiling faces today!! Enjoy this special day – you have earned and deserve it!!
Mike & Jean
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HAPPY DAY 100! What a trooper you have been….to say the very least! Thrilled you are now on “this side” of your recovery and SO STRONG! Enjoy all the freedom! You look beautiful and on the road back to the AWESOME JOS we all know and love. Have an amazing day! 🙂 xoxo The Davis Family
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FANTASTIC NEWS !!!!!! Can’t wait to hug……..
Jeri and Danny XO
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Jos! We are so happy for you and can’t wait to visit. We love and miss you so much.
Lisa & Ryan
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Joselyn, Jeff Morris here…you always bring a smile to my face…..geez you are so damn funny….congratulations and hallelujah!! The mask is OFF..we can now see that beautiful smiling face again…thank you for always brightening my day and hundreds of others…..Bless you….and your incredible Spirit!!
_____
From: Joselyn’s Brawl with Shulman’s Syndrome [mailto:comment-reply@wordpress.com] Sent: Sunday, March 24, 2013 8:35 AM To: dnjmorris@cox.net Subject: [New post] Day 100: Look Mom ~ No Mask!
joselynmiller posted: ” I really can’t believe it’s been 100 days since my transplant! I still wake up at night, thinking I hear that damn vitals machine approaching. I’ve been virtually cut off from the outside world for 7 months – no restaurants, no visitors, no leaving “
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Hurray!
Your smile is radiant!
A very happy congratulations on marking Day 100
Alison
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So happy for you, I can’t find the words!
It must feel just wonderful to be ‘out and about’!! ENJOY, ENJOY, ENJOY!
Keeping up the prayers and so excited to share with my church your remarkable news!!!!
You are an amazing inspiration, Jos! And I agree with Alison…your smile says it all! Just radiant..
.
Love Linda…and always your special angel, Ryan xoxo
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Congrats Joselyn, xoxox The Palmer Fam
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Joselyn,
This is Ellen Kirk, Jim’s wife (ask Todd, he’ll remember me). So glad, very, very glad to see you hit the 100 day milestone and to see your smiling face at the beach in Laguna. It is a real joy to me to see you celebrate. Love to you, Todd and your daughter- they were a big help to me up at City of Hope.
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Ellen – We were heartbroken to hear about Jim. All of the Millers send their love. Todd says if there is anything at all he can do for you, just let us know. He thinks you should go on Jeopardy ~ he thinks you should wear your black Converse high tops and win it all! You’re the best player he’s ever seen 🙂
Love and hugs, Joselyn
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Happy Happy 100 Day Celebration!!! To You and your awesome Family!! It’ cocktail time!, CHeers forever!!!
Xooo Patty
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Jos – We are so happy to hear of your progress and new privileges. HOORAY one hundred times!!!!! Hugs from the Brions
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Dear Jos … The Ammermans send their love to the Millers and are THRILLED to celebrate this long awaited JOYOUS news with you! xoxo
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Grate news !!! Congratulations Joselyn!!
Oh happy day! Bye, bye meds…bye,bye mask…and [soon] bye,bye Uggs…
Hello wine…hello friends…. and [soon} style’n new shoes.!
Hugs,
Diane
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Congratulations Joselyn and Todd. Happy 100 days. Fantastic news.
Love you guys the Stevens Family
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Joselyn, Congratulations! You look fantastic on the beach. We love the F-bomb!
Love, Linda & Tony Ellis
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Soooooooo happy to hear such wonderful news!!!
Global Grins all around!
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Amazing, happy day! As you get better each and every day, the memory of the pain of this fight will diminish. But the new found appreciation for your health, your loved ones, your freedom to enjoy your days will continue to grow. Those of us who know and love you feel so much lighter knowing you are on your way…
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO
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Just loving you, Pi Phi Pineapple baby little Brother of yours. Saw the Karen and Sharon last night at Letty Basslers big 5-0. You were so with us in spirit.
Just loving you. xoxoxox. Cavin
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I am so happy Jos we all feel such a huge weight lifted and are rejoicing with you, for you and holding you close to our heart’s. What a journey you have conquered ,you did it with courage, integrity, grace and strength..I honor and salute the incredible warrior woman that you are. Can’t wait for April 6 to really celebrate !!!
[ Glad for spell check i wrote celibate haha} Love you so much!!!! Jennifer , Chanel, Trent, Weston, Savannah’ Mae……
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MASKLESS!!! This is the day we have all been waiting for! You and Todd must be thrilled your lives are approaching normality after all you have been through. Have Todd get out that bottle of wine and we will send more – this calls for celebration. We can’t express how happy we are for you both and look forward to the day we can celebrate together. Love Lynn & Carolee
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Congratulations! You have been in my heart and prayers – to many more years of health and happiness 🙂
Love, Tory Veje MacDonald
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Joselyn, Happy days are here again! You look BEAUTIFUL.
We look forward to the day we can celebrate with you. Thank you for taking us all on this incredible journey with you. You are amazing. Hugs, K&B
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Happy 100 Jos! We are all so proud of you and the fighter you are. Keep it up and let us all know when you are ready for a family reunion!
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Joselyn – Blessings to you and your family. I am praying for your continued strength. I’ve had my own set of problems this last year, so I was not following this or FB until now. My solution to the mask fashion issue is to tell everyone you are a Jain: “Jainism places a special emphasis on ahimsa (“non-injury”) to all living beings. The concern for life is extended to all creatures, even minute microbes that are not visible. The Jain ideal is a mendicant ascetic who takes extreme measures to avoid injuring all creatures. Monks and nuns are sometimes seen with muslin cloths over their mouths to keep out flying insects, and they are enjoined to use small brooms to gently sweep away living creatures from their path, so as to not accidentally crush them”. … yeah well so much for the mussels, accidents happen! Peace be with you.
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Thanks, Lisa! Interesting concept 🙂 BTW, the mussels I crush are only the shells, there are no animals in them… I would never crush live mussels 🙂 XO
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Jos,
Congrats on day 100! We are so glad you are doing better. Life is good. Keep on going!
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Hurray Joselyn! You look beautiful! Keep up the good work. Love your F bomb……….Lots of love from Helen and Jed
Sent from my iPad
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Hi Joselyn, This is such Fantastic news! 100 days… yeah! Thank you for being such a reality check to those that of us might have the inclination to actually complain about anything in our lives, you are living proof of what a beautiful spirit can do to touch so many lives…Blessings, Blessings, Blessings….:)
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It’s been so lovely to see you around the neighborhood lately, around your walking time… Just so normal. And that’s got to feel pretty darn good. Baby steps. It sounds like you are definitely picking up speed! Lots of love!
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Day 100 and counting! Congratulations on conquering an even bigger mountain than the Everest Base Camp trek! You were an inspiration then to me and my class, and now to me and the world of Friends of Jos!
Much love,
Mary, Chris and Julie
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