More Platelets, a Pair of …oscopies and Move In Day

Due to the constant flow of requests for a glimpse of my esophagus, I am now thrilled to be able to provide you with this, a glimpse of my esophagus for your viewing pleasure.

I met with Dr. M2 (gastroenterologist) to talk about having an upper endoscopy and a colonoscopy to try to solve the internal bleeding mystery.  I really liked her and she urgently fit me into her schedule.  She was very concerned because IHNFP (I Have No F-ing Platelets), so she confirmed the need to have another platelet transfusion immediately prior to the procedures.  All of my docs have warned me not to handle anything sharp, always to wear shoes, and not to injure myself, due to the dangers of having some serious bleeding issues due to my almost non-existant platelets.  I always ask them if I have to put my knife juggling act on hold.  She liked my funny joke and I welcomed her to my team.  S!IDHED  (Sh*t! I Don’t Have Enough Doctors)

It’s probably safe to say that I was the only one on the planet to have a platelet transfusion (#8), followed by an upper endoscopy, followed by a colonoscopy, followed by moving my son into his college apartment yesterday.  My advice to anyone considering doing the same:  Try to avoid finishing  your colonoscopy prep while transfusing!  Even though the IV pump can be unplugged and your unit of platelets can be wheeled down the hall to the little girls’ room, still pumping into your vein on battery power, it is NOT a comfortable situation.  Those of you who have prepped for a colonoscopy know what I’m talking about 🙂

Dr. M2 gave me special permission to drive up to Los Angeles right after my procedures to be a part of Rex’s move in day.  She took 3 biopsies of my stomach and 3 of my esophagus (small ulcers, probably caused by the Prednisone), but she let me go as long as I promised not to lift anything and just sit on Rex’s bed while the boys put the room together.  I highly doubt the boys could have figured it all out without my gentle (barking) suggestions (orders) 🙂

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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).

31 thoughts on “More Platelets, a Pair of …oscopies and Move In Day

  1. Jos, you continue to amaze us all with your positive attitude, charm and wit. Yes, you may very be the only one in the history of ever with a day like yesterday. Keep it up, we’re all here with open arms. And btw, you need to write a book after the blog. Sending much love.
    xoxo
    Court and the girls

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  2. Hi Jos,
    Have they ruled out Ulcerative Colitis (auto-immune)? This is what I was in a 5 yr battle with – bleeding ulcers in my large intestine…. It sounds like you have other issues, too – but some of your symptoms sound like mine.
    I suggested the Egerer clan (and friends) all give blood in your name – would that help you? Hang in there –
    Kristin

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    1. Hi Cousin! So glad you got through your battle – sounds like it was a tough one! My team is thinking that my internal bleeding issues are a result of the high dose of Prednisone that I’m on, and not something like UC. My biopsy results will be back in a few days… Thanks so much for the offer to organize an Egerer blood drive! At this point, it’s mostly platelets that I’m getting, and those are tricky to donate to a specific patient. (They only last a few days and it takes multiple donors to make up 1 unit.) I am usually told I need one within hours. Thanks for your love and support, Kristin! XO

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  3. Thank you for including us on your blog….yes, life is a journey and without a great sense of humor it becomes an arid wasteland. You have given us a floral bouquet! We are in town until mid-September and I go to Hoag for daily Lymphedema clinic…please let us be your hands and feet if you need ANYTHING! Much love to an awesome woman.
    Lynn and Cary

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  4. Thank you for including us on your blog…yes, life is a journey and without a sense of humor it is an arid wasteland. You have given us a floral bouquet! We are here until mid-September and daily I go to Hoag for a Lymphedema clinic. Please allow us to be your hands and feet if there is ANYTHING we can do.
    Much love and God’s blessings.
    Lynn and Cary

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  5. Jos-
    I’m happy to read and quite amazed that you still have a humor while going through all your treatments. Stay brave! We are thinking about you.
    Lisa & Ryan

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  6. Jos, that is one good looking esophagus! Jackson had to have an endoscopy & colonoscopy a few years ago(he was diagnosed with IBS at 11) and Craig also had it done. The prep is definitely the worst part! Hang in there!

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  7. Jos…
    just finished reading your entire blog…very courageous…if there is anything we can do, we are only a phone call away.

    ron & patty

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  8. Hi Jos,

    You are really amazing! To keep a sense of humor through all of this seems impossible but you are managing to do it. Thanks for putting up this blog. We are all thinking about you constantly and this is a great way to keep up with what is going on with you.
    So glad Rex got all moved in to his new apt. and you could be there. Wilson is thrilled to have him at USC. As I mentioned before please do not hesitate to ask if Tom or I can be of any help up at school or at home.
    xo, Beth

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  9. The picture really brought it clearly to me Jos 🙂 silly. You can have as many of my platlets as you want. They are pretty stealthy at this point.
    Humor is the ONLY way to keep the blood flowing to the heart the way you need it. Glad you are keeping up the “exercise”. I’m sending you lots of the good stuff from my heart to yours. …..strength and courage in the set as well. I’m going to follow your posts so I can keep sending my heart to yours.
    Suz

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  10. Jos,
    Thanks for starting this blog so we can keep up with you. I am glad to see your great attitude is still in tact as are your expressive skills at making light of a most difficult situation. We are all out here thinking about you and hoping for a speedy recovery. I don’t know what in the hell you were doing moving Rex in. I am pretty sure you didn’t just sit on the bed. Follow doctors orders my dear even though I know it is hard for you.
    Love, Uncle Lynn

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  11. Jos, you’ve always been an inspiration to me of living a full life, and Shulman’s isn’t stopping you now! You’re incredibly brave and I’m immensely impressed with how well you’re handling the IPPBSSDDSE (Incessant Poking, Prodding Blood Stealing, Surgeries, Drugs, Doctors and Side Effects). I know you have great support over there and the best MDs to kick Shulman’s’ ass! We’re thinking about you and sending our best from China!

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  12. Joselyn,
    Your energy and spirits will be a great help to you, and it sounds like you have a great team of docs too! As always, your sense of humor shines through. We are just minutes away from Hoag if there is anything you ever need !! We are thinking about you.
    FEEL BETTER!
    Terri and Blake

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  13. Hey Joselyn, wow, I heard of your first biopsy and thought you were a-ok! I can relate to the scary part of not having a diagnosis…bottom line sounds like you can beat this and get back to business as usual. Poor Meagan had the prednisone horse pill as well, and we thought pms was bad???? Hang in there, keep your focus right where it is and we’ll be seeing pictures of you handing out toothbrushes and moving Rex back home for summer before you know it. Lots of Love, Melinda : )

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  14. Dear Joselyn,
    I understand when your bank of platelets begins to run dry and the drain it puts on your energy. I only required 2 transfusions before they began to procreate once again so I’m overwhelmed that you have had 9 trips to the blood bank. When the body’s immune system is working double overtime you do it well by entertaining it with the wit of the mind. They are far more effective when they are working in harmony! I know that your mind is also reminding your body how much you have to live for. Our prayer are working for you!

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  15. Joselyn, Love the humor!! You are a truly amazing woman! You can not keep a good woman down but two oscopies and a move in to SC!! Keep laughing and fighting. Your docs must be amazed with you. Please have Todd call on us for anything we can do. Our prayers are with you. Take good care.

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  16. You are amazing! To be able to have such a great sense of humor with everything you are going through! What a role model!!! Keep up the good spirits!

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  17. Though unwanted and most certainly painful to endure, this journey is a sobering reminder to many of us to be thankful everyday we open our eyes and move forward. Your strength and poise is life affirming and I thank you for showing the courage to share candidly and with humility the details of this wicked misfortune. If there is anything Team Churm can do–large or small–call, text or send by courier pigeon your request. Praying daily for a speedy return to simpler, healthier days.

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  18. Dear Joselyn, Thanks for sharing your blog. You’re so strong and I know your positive attitude and strength will get you through this. Please know you’re in my thoughts and prayers! xo Maureen

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  19. Hi Jos,
    Wow! I think we have discovered yet another talent you have. I am amazed by your ability to convey this journey including all of the medical facts and pics with such humor and grace. Actually I am not surprised given your incredible spirit. I know this will not keep you down for long! You are in our thoughts and prayers and hope you know we are here for you should you need anything.
    XO, Sommer

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  20. Hi Jos:
    What an ordeal you have been through, dear little Niece! We know things are going to get better. We just wish they would hurry up. This has been going on far too long. We want you back to your adorable self, Jos. We think of you every day, and we would do anything to make this go away. Let us know if we can do anything for you. We love you dearly.

    Love, Aunt Wendy and Uncle John

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  21. Dear dear Jos~ You are amazing. You are constantly in my thoughts and prayers and I can’t wait until you beat this thing and feel like your old self! You are such an inspirational fighter. Love you, Kathleen

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  22. Joselyn,

    You are seriously the biggest super trooper I have ever known in my ENTIRE life!! Your attitude is just the greatest. My fam and I are a call away if you ever need anything. We love you to pieces! FIGHT ON, FIGHT ON, FIGHT ON.

    Love,

    Alli and the Hillgren clan.

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  23. Dear Joselyn,
    Your mom just called me, and I have just read your blog. You are truly amazing, which you always have been, and I am just sure that you will overcome this with your “Fight on” spirit. Of course, I am so sorry that you are having to go through so much, and am so impressed that you have continued to do the things that are so important to you, like not missing Rex’s move-in.
    Yes, your esophagus is flawlessly beautiful just like the rest of you…didn’t expect anything less!
    My aunt received such wonderful care at City of Hope for Lymphoma, and lived following it for at least 15 years (from 70 to 85 years of age), that I now donate to them.
    I love you dearly, and David and I have you in our constant prayers.

    My love always,
    Carole

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