A Rare Call

I recently received a message from a woman who found me through a Google search, which pointed her to this blog.  Her sister has been diagnosed with eosinophilic fasciitis (Shulman’s Syndrome) AND aplastic anemia.  Those are the same extremely rare diseases that I was diagnosed with a few years ago.  I would venture to guess that we are two of an insanely small number of individuals that are members of the EF/AA club.  Perhaps the sole members.

shadow-play-916036_960_720I messaged this woman back with my phone number and urged her sister to call me, if she wanted.  Soon after, I received a call from my new friend, who is currently being treated for both diseases in the hospital.  Chills surged through my body as she described her paths, treatments and experiences. It was as though she was describing mine.  All the pain, pills, infusions, injections, biopsies, blood tests.   It has not yet been determined if she will receive a bone marrow transplant, but her docs are considering the pros and cons.  She is lovely and strong, but understandably scared.  We connected on many levels, and I hope I helped her to believe there are so many reasons for hope, just as she helped me realize how far I’ve come.

We shared laughter and tears, and truly cemented a special bond.  I know we will continue our conversations and grow our friendship as she proceeds along her path to a full recovery.  I’ve been thinking of her constantly and hope my readers will join me in sending all their best wishes and prayers to my rare and special friend!

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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).

63 thoughts on “A Rare Call

  1. What a blessing for you both…..we will continue our prayers for you Jos and add her to our list!!! ❤️Kristi

    ……I fight to find a cure for Cystic Fibrosis…..

    >

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    1. Joselyn:
      You have received a miracle. Now, you can help others who are so bewildered
      and scared!
      My love, you were allowed to live because you have the strength and character to help others….
      God bless you, my very dear Sweetheart, Joselyn Ann
      P.S. I have been typing the Family Tree and there are MILLERS all over the place.

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  2. I couldn’t imagine a better “mentor” for this new friend. Surely you have already helped and inspired her in more ways than you could imagine. Wishing you both well.

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  3. Hi Jos.
    Please send her all the love and encouragement from me.
    How blessed she is to have found you!!
    All
    My love,
    Bart

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  4. I would venture a guess that it feels really good to her that she’s not alone in this special battle. Thank God she found you Joselyn. And you her. I will be thinking good thoughts for her.

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  5. Jos, I got chills reading this. I’m sure you will be a great help to her. Your road was so tumultuous. Perhaps sharing your experiences will help her through this.
    XOXOXOXOXOXOXOXOXOXOXOXOXO

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  6. It’s amazing how God uses our experiences to help others in the same situation. The Scriptures tells us , “God has a plan for each of our lives and it is for our good” You are an angel unaware. Emilie had many of the same kind of calls. It makes one feel good when we are able to lighten other’s load in life… Bob

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  7. This is when you get to share the love in the best way possible, which is healing for you and a Godsend to her! Always praying for you, my friend and now for the two of you~

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    1. Helen – Yes, it was interesting to hear of her symptoms and the treatments she’s undergone. Strikingly similar to mine. She is wonderful and strong, and I know she’ll come through this!

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  8. As horribly unlucky your new friend is to have been diagnosed with this rare disease, she is so lucky to have you as her mentor!! You are such a special person Jos! I will keep you both in my prayers!

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  9. Is this why we suffer… so we can comfort others with the compassion and love we have learned? I believe so…thank you Jos for being available to pass your love on to others.

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    1. Lynn – You have passed your love on to me in so many wonderful ways. I know you’ve been through a lot of nasty stuff, and that’s made you strong and compassionate for others who have suffered or are suffering! Thanks for your continued support, dear friend and caving buddy! XO

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  10. I truly believe this is why we are given trials in our lives…. to make us stronger and help others from our past experiences! I’m sure you were and will continue to be a huge comfort and blessing to her as she fights through her trial. Bless you my friend and I will keep her in my prayers for sure!

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    1. Thanks, Keri – I believe the same. There were several supporters I had/have that went through some similar experiences, and they were invaluable to me. I hope I can help share the burden my new friend has been given. Thanks for your kind words and prayers! Love and miss you! XO

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  11. Your new friend has the most amazing mentor and you will guide her through it all! You are incredible my dear friend! Xoxo

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  12. Cool stuff. Your new friend will need your love and understanding. God bless both of you. Amazing and inspiring.

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  13. Jos, wow, this post takes me back many years when you were wondering what the fuk is going on w me?!! What do I have? What are these ailments caused from? You called and asked if Dan knew about SS. And then you found out much much more and the double whammy of AA. One would have been dire enough. Doesn’t that seem like forever ago? And then the long arduous path that followed….that has landed you right here and now. Hooray! That you could now be a Guide, when there was none, no one for you, is an amazing blessing. Combined w your will, humor, tenaciousness and lets face it, good fortune…and your blog is how she found you! Amazing Universe. Amazing Woman. Pay it Forward mama. Love you xoo

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    1. Love YOU, Val! Your beautiful words have touched me! This has really given me a valuable reminder of how lucky I am! Thanks to all the fantastic supporters and friends who came forward, like you! I hope I can be a valuable guide to her! Thank you for the wonderful message! XO

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  14. what a special bond you have developed. t’s a miracle that she found you. your courage and strength will be her inspiration to fight and overcome this dreadful life threatening disease. i will keep her in my heart and my prayers.

    love, mom

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      1. Hi Daryl! Thanks for checking in. Wow! SEVEN! She is surrounded by love! I hope you can share with her all of the support she’s received from this post!!! My friends and family are sending their love and prayers!

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      2. Jos, I read to her, this afternoon, your beautiful post which was filled with kindness, hope and genuine friendship. At the time, there were many comments but not nearly as much as tonight. These diseases are so rare, I hope that she will find some support in the path that you have blazed! Thank you! I am so happy that the two of you connected.

        Daryl

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    1. Yes 7. Males make the best donars supposedly. Thank you all for caring, I’m very very panicky right now. Having a hard time believing I’ll be whole again as the day worn on. Weekends are the hardest.

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      1. Dear Peggy – Please know that you are surrounded by love and prayers that will help guide you. You will get through the fear and transform it into trust and faith in God, your doctors, nurses, family and friends. You are going to be fine! ❤

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  15. How can we help but wish your new friend the best, and be so incredibly happy for her that she found you as a part of this difficult journey. If there is a time we can somehow communicate directly to her our love and hope and prayers, let us know. In the meantime, you are that channel of communication and all these things go to her through you and we send them up to the universe to shore her up.

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  16. Thanks for accepting me into this rare club. I need all the support I can get right now.Thanks for your kind words. So hard to feel hope now, and I find I have to be cheerful in the face of others as negativity scares them. Going to be rough until some real progress gets going. Keep on with the fun!

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    1. Peggy!

      My dear new friend! You are surrounded by support 🙂 You are not alone in this, as you can see from all the love and prayers sent your way. I am here for you in any way you need. Please call on me anytime. You WILL get through this, and progress is just around the corner! XO

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  17. Joselyn,

    Your words here have touched me, and I am sure many others as well. May all of the Universe’s Resources and Powers bring healing forth for you and your special friend.

    You are often in my thoughts and prayers for a full recovery. You are an example of great courage in the wake of great challenge. You are indeed rare in so many ways.

    Godspeed,

    Ralph

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  18. God had you there to help and encourage her, and you too! I look forward to reading in your blog…I can only read so much right now, hurts my eyes. I asked dr about seeing optomitrist and she said my vision may change and wouldn’t want me to have to buy a second pair of glasses….glad for the warning.

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    1. Thank you, Kathy! I understand the eye thing. My eyes went through many phases of Graft vs Host, cataracts, allergies, surgeries, pain, vision problems, severe dry eye, and major inflammation. Just take each phase as it comes, and you’ll get through it 🙂 Totally worth it to be well! Best wishes to you and your recovery!

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  19. I am currently in remission from aplastic anemia. It was a trying, grueling experience. I am still traumatized by it all. This disease, any disease. It changes you. My heart swells when I meet people who have this. No one understands more than a person going through the same thing. I shared my story on my blog, and I’m sure you’ll find our experiences very relatable. Wishing you the very best.

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