Day 100: Look Mom ~ No Mask!

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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!!!

IMG_1110I 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 🙂

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Crushing mussel shells on my daily beach walk – it’s a highlight of my day fo sho.

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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 “Day 100: Look Mom ~ No Mask!

  1. hey joselyn…sending our love and congrats to you and yours….such terrific news…..el patio is just around the corner……cant wait! enjoy it all…..
    p.s. dana is still working hard on getting those donations and is looking forward
    to running for her dad and you…….and doing it with mych!

    Like

  2. Joselyn, I’m Sondra Millard’s sister and she has shared your blog with me. You are one courageous young lady. I know how long you’ve been married as you were married on my 50th birthday, 1985..June 29th. I know your parents so say Hi to them and God Bless you in your recovery. It appears you have suffered more than one should endure. Joy Beck

    Like

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