There Once Was a Girl from Nantucket

There once was a girl from Nantucket …

Oh wait, scratch that – I think we all know where that’s headed 🙂

Ah hem…

images-1There once was a chick from Laguna

Got the sniffles once in a blue moona.

One morning she woke

And without any provoke,

Her muscles felt they’d been hit by a harpoona.

 

UnknownWhat was this new pain

That never seemed to wane?

A mystery to all her docs

This was no simple case of pox.

Perhaps something exotic from the Ukraine?

 

IMG_0784Let’s biopsy her quad!

Hell yes!  Let’s make it real flawed!

A diagnosis they were seeking

But after surgery, she’s freaking!

Hematoma and numbness – OMG!

 

imagesResults returned – Shulman’s Syndrome – oh drat!

Eosinophilic Fasciitis – who’s ever heard of that?

A rare disorder to be sure

What’s the prognosis?  Is there a cure?

Prednisone was her weapon in combat.

 

Unknown-1Weeks went by as she took tons of Pred

But instead of improving, her blood counts fled.

Another biopsy of her bone marrow

Through a needle that was NOT narrow!

Answers came back, the kind you dread.

 

Unknown-2Severe Aplastic Anemia – serious this time

Clearly, it was going to be an uphill climb.

She was moved to City of Hope –

More prepared to grapple with her scope.

Her marrow had failed and was not worth a dime.

 

images-2Blood transfusions and new drugs every few days

Attempted to turn things around, enter a better phase.

But, alas, deeper and deeper she sank,

And let’s be frank,

There were no celebratory sashays.

 

IMG_0971_2IMG_0189Bone marrow transplant – that’s what she needed

No way in hell she’d allow life to be ceded!

She checked into room 6-0-1-1

Her family made sure she was not short on fun.

Games, activities, surprises FAR exceeded!

 

0-8A week of chemo, and she was ready to go

December 14’s here – on with the show!

Brother, Leason gave the ultimate gift

His marrow matched; she was no longer adrift

He’ll always be her life saving hero!

 

IMG_1074While waiting for blood counts to be on the rise,

Todd showed up daily with surprise after surprise.

One day it was a shaved head to match her own,

The next it was a ‘J’ tat in her fave purple tone!

Each visit was styled from shoes to neckties!

 

images-3After a few weeks, it started to happen

Her blood counts went up and all were clappen.

After a 6-week stay, they sent her home

A sh*t ton of pills, sucky diet, and she could not roam.

All about beanies, Breaking Bad, and lots of nappen.

 

Unknown-3Little by little, they gave her more rein

Beach walks, visitors, baths and chow mein!

A few hairs sprouted, things were looking up

Then Graft vs. Host set in – a real hiccup.

Rejection issues, more drugs, and more pain.

 

Red Rover, Red Rover ~ please let this face rash be over!

Still working through it, this recent mess

Hoping these symptoms would just f-ing regress

Rashes, cough, and sores on gums and lips

Be gone all of you – it hurts to eat chips.

GvH blows and adds to the stress!

 

IMG_0168So much to be thankful for in this beautiful life of hers

Family and friends have pulled her through

She is very aware that things could be much worse

She’s learned what’s important and more importantly, what’s not

So f the rhyming for this verse 🙂

I want to thank everyone who is still supporting me!  Everyday I hear from many of you, and it lifts me!  I’m trying to keep my mind off the Graft vs. Host Disease by going on fun outings with my mom, meeting up with friends, going out to dinner with Todd, working on artsy fartsy projects, and keeping up with Rex’s adventures on Semester at Sea (just saw an Instagram of him flying in a contraption (hang glider? parasail?) over a beach on Crete with his tongue hanging out like a basset hound).  This week I’m meeting with Dr. Fantastic to get his opinion of my GvH condition and to get AFBT – Another F-ing Blood Test.

Screen shot 2013-07-12 at 7.51.42 AM_2
X Man Flying Over Crete
IMG_1447
My Latest Project
jaes bday 6
Celebrating Jae’s 50th Birthday and our 28th Anniversary
IMG_1412_2
Mom and I Visiting the O. C. Museum of Art. Loved This Sculpture!

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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).

55 thoughts on “There Once Was a Girl from Nantucket

  1. …what an unbelievable journey…you can make your circumstances seem like the most hilarious “I love Lucy” episode…thank you for sharing yourself with the world…I am blessed to call you friend! Xox

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  2. Stunning way to start Monday. Shakes the cobwebs and should remind all that complaining about shaving, cold cereal for breakfast and traffic on the 55 is beyond the pale to what you’ve faced, endured and have conquered. My ant hill of concerns is nothing to the Everest of challenges you have faced with a level of frustration and pain none of us will ever understand. Your courage is my jet fuel. Thank you and continue the great fight.

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  3. Great way to keep us all up to date. You are amazing! So much to be thankful for with such a great attitude. Hello to your mother for me. I see her spirit in you!
    Karen

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  4. ah joselyn……was hoping by now the graft vs host would be a thing of the past. so sorry you are still feeling so shitty. happy to see you out and about and will continue to pray for you to soon be well and pain free! sending our love……..

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  5. Thank you. Just when I think things are shitty, I open my email and see your latest post and I realize my life is great. Perspective is everything and you are teaching us this everyday…xo

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  6. Hey – 2 steps forward – 1 step back. You have come so far. Keep the faith – you have amazing support from a loving family and true friends. You are in the thoughts and prayers of thousands of people!!

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  7. Love the pictures Jos! Thanks for the update and I love your hair! You look gorgeous as always. We are praying for you and love you! Xoxo Gretchen and Dick

    Sent from my iPhone

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  8. I heard Jos was sick.
    Nope, she’s just kicking it!
    Leason’s butt is in pain,
    Yet his butt is Jos’ gain!

    Best Wishes, Luke

    Like

  9. You are amazing, Jos! Fighting this with such courage, humor, wit, CREATIVITY and gratitude. Reminds us all to keep our own perspectives in check … you are amazing! (Repeated that part, sorta poetic. 🙂

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  10. you’re outlook and attitude are so inspiring! You are so creative and talented…cant wait to see what you do next! Glad to see you out and about with friends and family 🙂

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  11. So glad that you are doing better. I cannot tell you how much I think of you and your family! Ryan is home from Peru and asked about you. Love the photos and your blog. You are an inspiration! So glad that you can finally get out with friends and have a little bit of normal back in your life.

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  12. Is the dog statue a fountain? 😉
    Lemon juicea. Or ??
    Love the lymeric! I wish you were coming on the Fall voyage! We could check out Dubin together! Lymerics galore!

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  13. Dearest Jos .. I just have to say it again – YOU LOOK SO DOG GONE (or in your own words .. F*#?ing) ADORABLE with your new blonde do! Love the pic of you and your mom – so sweet! Hugs, Love and a dash of Prayer .. xoxo Les

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  14. There once was a girl named Joselyn,
    Beautiful, kind-hearted, adventuresome.
    Life threw her a curve,
    She didn’t deserve,
    But she’s showed us all that her courage is unfalterin’.

    Like

  15. Hi Jos, it was great seeing you and Todd a few weeks ago. Thomas thinks Todd is the bomb! Which he is, except for the yellow blazer.

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  16. Joselyn, This is so creative and insightful. I always like reading your blog because you have just a tremendous ATTITUDE! I talked with Todd last week and he said you were going to compile a book to help others-what a great idea. We are only wishing the best for you.

    Michael Cargile | Senior Vice President
    Voit Real Estate Services
    2020 Main Street, Suite 100 | Irvine, CA 92614
    T (949) 263-5338 | F (949) 261-9092
    mcargile@voitco.com | http://www.voitco.com
    License #00491668

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  17. So there clearly is no end to your talents – world-class patient, designer, museum aficionado, hilarious kick-ass writer, and now, we all know it – a poet!!! Prayers and pixie dust are being sent your way to rid you of graft v host for good! Much love to you all.

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  18. Jos, you continue to amaze us with your strength and humor!! You continue to fight the GOOD fight and will keep on fighting! No other choice. You have much to live for and much more to give, so be the Superhero that you are and Keep on Fighting!! We send our love and support! Cookie and family.

    On Mon, Jul 15, 2013 at 7:46 AM, Joselyn’s Brawl with Shulman’s Syndrome &

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  19. Jos, you continue to amaze us with your strength and humor!! You continue to fight the GOOD fight and will keep on fighting! No other choice. You have much to live for and much more to give, so be the Superhero that you are and Keep on Fighting!! We send our love and support! Cookie and family.

    Like

  20. ……..thinking of you and sending mega doses of sunshine, healing and love……..one foot in front of the other (really, that’s for ALL of us!)……..keep those spirits UP with all your fun things…….and know that those that love and care about you are always surrounding you!! xo

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  21. My goodness has 28 years gone by since we celebrated at your wedding! You, Todd, and the rest of your wonderful family have gone thru enough! Happy recovery is all that is left. We wish all of you the very best………….Love from Helen and Jed

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  22. Just lovin’ you and always amazed by your “attitude of gratitude” towards family and friends!
    Hope to see you…have been in Ohio but return to the neighbourhood on Wednesday.

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  23. I just wrote you a long comment and then had to log in to Word Press – and got redirected and lost my comment in the process. Uggghh!!! 😦 I will resend my verbose message another night but just know I am thinking about you!! xo M.

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  24. So proud of you Joselyn! Your journey has been a learning experience for all of us. Your disposition is amazing!! I LOVE the dress. Thinking about you all the time. Cheering for you and wishing you well!! ❤ Love, The Bridgfords.

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  25. OMG the Fabric from South Africa on the bottom of the dress!!!!! Can I come over and you wear the dress and ill hold the bag and we can do more arts and crafts?!?!

    Cant wait to see you soon Jos!!
    xxLove Mebus

    Like

  26. Wow ! And you’re a poet too! Who knew?
    Very very great blog with a happy ending- the best kind! So glad for you and your family! You will always have a place in my prayers but now I can say thank you for your ever-improving health! Love to you!
    Julie and Patti and Pete

    Like

  27. Joselyn,
    Your creativity is astounding! Love the rhyming a la Dr. Seuss!
    You are so right. When life gets difficult you realize what’s really important; simple pleasures, family & relationships. Hang in there & keep fighting!

    Like

  28. Oh, Jos…it seems impossible that you have been ‘dealing’ with all this as long as you have. My heart goes out to you….and again, as I keep sharing, you are a mighty inspiration! On the days I feel the ‘missing’ is just too great, I read one of your posts and laugh and cry and know that I can do it!! Thanks for sharing your tremendous courage, whit and amazing talents; aka: poet extraordinaire, for one!
    My love and prayers remain right there with you….and our special angel, Ry, I just know is using all of his ‘pull’, too! xoxoxo

    Like

  29. Blessings Jos. An amazing poem. Of coure I am eagerly waiting for the “Nantucket” version! It is so easy to love you. Your georgeous. Don’t ever change.

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  30. Jos – you are unbelievable! Were you this creative before you started taking all of those drugs? Yes, I think you were! I also know you have always had a great sense of humor! Your writing needs to be published. Your journey has been a nightmare, but your attitude is a dream! I am so happy you are getting out and about. Thanks for sharing and keep us all updated on your progress! Your courage has been an inspiration to all of us!
    xoxo

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  31. Oh Jos- You are such an inspiration! Please continue with your amazing attitude and fabulous rhyming! I imagine you’ve got a book well on its way… Keep up the good work old friend!
    xoxo, K

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  32. Oh my hell!! Can I say f*@% me here??? I can’t believe I found this today. I saw my 11th dr today and he introduced me to EF. Will confirm next week with biopsy but he is fairly certain I have EF. I am amazed at what you have gone through Joselyn! I thought having MS the past 11 yrs was bad, but this is not quite what I had in mind for retirement. You are an inspiration though Joselyn and I will continue to read you throughout my journey. THANK YOU for sharing!!!

    Like

    1. Denise! Wow! EF is such a rare diagnosis ~ if you are told that’s what you have, I will be happy to answer any questions you might have. My EF symptoms of inflexible, tight muscles improved greatly with Prednisone (60mg/day) after a few weeks. My biopsy had complications that I’m sure you will not have to deal with 🙂 Are you blood counts normal? Let me know if you’d rather communicate via email. I wish you the very best! Joselyn

      Like

      1. Oh Jos what a darling you are for responding!!! Yes if you want to do email that’s great, debarker@hotmail.com. This shit is un f^@%#&ng believable, eh? For many yrs I have had massive fascia hardness through rt torso and rt ankle/leg. We have chalked it up to the MS. (Have had a great myiofascial(sic) massage therapist’s) Now the “orange-peel” hard, painful skin travelling up my arm. I have not had solu-medrol IV in 5ish yrs and have not had to have any other pred due to MS. Ortho surgeon I saw yest (Cleveland Clinic/FL) said he saw this once before and did a biopsy when he was @ Walter Reed. He is fairly certain I have EF. He is 11th doc I have seen! Having more labs tomorrow. So far they have been “fairly” normal. What worries me is I have non-Hodgkins in my family & had melanoma 2 yrs ago and a lousy immune system due to the MS. My MRI shows enlarged lymph in rt elbow just above fascia swelling. xray & CT show swelling. So, for now it’s a waiting game. I am good abt not worrying too much until I need to 🙂
        Happy Thursday sweetie!!! The sun’s up in my world!!!

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  33. There is a tough chick from Laguna Beach,
    to take her down would be quite a reach.
    She tells the tale of the tough battle she has fought,
    look at how many visits her wonderful blog has caught.
    She tells her story with such humor and grace,
    that each entry puts a smile on every reader’s face.
    I am so lucky to call her my friend,
    Her strength and resolve will not bend.

    XOXOXOXOXO

    Like

  34. Jos, I love your writing and now poetry too. I can’t believe this has been going on for over a year now. I remember seeing your mom in the parking lot of the Longfin last year before our trip and talking about you. This must seem like a nightmare that you just can’t wake up from. But, with your attitude, fortitude and a little brotherly help, you have survived. I hope these pesky rejection issues will clear up shortly and you will be able to have your favorite foods and do all of the things you enjoy. I am glad you have rekindled your fashion talents and are designing again. You are an inspiration to us all.

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  35. Hey Nantucket Girl! Looking forward to many fun adventures in the near future! Life is to enjoy and girlfriend we are going to do that! TTF and love you lots!
    jae
    PS- June 29 rocks amazing people are born and married on that day!

    Like

  36. Hi Joselyn,

    Thank you for you blog. You are an inspiration! In July 2012, I started to get sick and my family doctor could not determined the cause. In February, I was referred to a rheumatologist. After a biopsy of my foreman I was diagnosed with EF. Like Denise, I happened to come across your blog while researching EF. Keep up the fight!!

    Like

      1. Most of my blood work is coming back fine except for my iron still remains low. My Doctor is weening me off of prednisone, I find it hard coming off the last 10mg. I feel like my symptoms are coming back but I heard it could be withdrawal from the prednisone. Somedays, I feel good and then there are days I feel like blah. Thanks for asking. I hope you are doing well!

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      2. I’m glad to hear that your blood work is so good! My iron was low for a while, too. Nice to be coming off pred 🙂 What are your symptoms that seem to be returning? I hope they disappear and you feel better soon, Marsha! I am doing pretty well. I have a little Graft vs. Host Disease, but it’s pretty mild. I can handle it 🙂

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      3. I am sure you can! Your a fighter!

        Just the swelling, I find it mostly in my hands and the bottoms of my feet, mornings are rough just getting out of bed. And, then there is the tiredness. I am thinking my iron being low contributes to my tiredness.

        I find it when I lower my dose of prednisone I feel the symptoms the most but then they subside after several days. I started at 40 mg and now I am at 8 mg now. My Rhumeatologist wants me to go as far as 6 mg until I see him again. I just wish there was more information on EF.

        My thoughts are with you! Hope you feel better soon!

        Marsha

        Like

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