About Me

      Welcome!!, My name is Lovee' (Pronounced Luh-vey). My father, Richard O. Johnson, Sr., who was very involved with the National Hemophilia Foundation and worked for The Hemophilia Association of New Jersey, told me he took a French class in college and that is how he came up with my name rhyming it with Renee'. He defined it as,"Love of the world".

      I am a 39 year-old wife and stay-at-home mother of 4 children (ages 16, 12 and 4 year old twins).  I have given myself the title, "Mommy CFO".  In my role as Mommy CFO, it is my job to keep my family on budget so everyone can stay happy, healthy and housed!  Please don’t refer to me as a Housewife though.  I make my husband wash his own clothes, so I can stay in total denial.


Blue Ridge Mountain, GA Family Vacation 2014

     Both of my sons have Severe Hemophilia A factor VIII deficiency, so we have to always be prepared for additional medical bills related to their medicine or unexpected hospitalizations.  Having two sons with a chronic disease can be stressful and it is a lot to keep on top of....did I mention my oldest daughter has asthma...yup a lot to keep on top of!  We are originally from New Jersey, but have migrated our family to South Carolina, in the suburbs of Charlotte, NC.

      I started my "Prophyholic" blog in 2011, after I had my second son.  I was having so many random thoughts about being a Hemophilia Mom and really no one to share them with.  (My Husband was tired of hearing me talk and I wanted him to think I had this all under control!)  With my oldest son I had my Father to help me through the rough years and answer all my questions, but he passed away in 2009.  When I first started this blog there was not a lot of Hemophilia Mother groups on Facebook, Instagram or Twitter as there are now!  

     I love communicating with all the "Hemo Moms" on social media and still keep this blog for my random thoughts...sometimes having nothing to do with hemophilia but just being a Women, Mother, Friend or Human.
      
     In March 2014, I took a part-time job with BioRx, a specialty pharmacy, as a Patient Advocate where I can extend my knowledge to other "Hemo Moms" making sure they have everything they need to care for their child with a bleeding disorder.

     Also, in 2014 I started being a volunteer blogger for Hemophilia Federation of America (HFA), "Infusing Love", A Mom's View blog, where I contribute a post quarterly with other great "Hemo Moms" sharing our experience!

        I know in the Hemophilia community you can sometimes feel alone, so I hope by reading my blog you know there is someone else dealing with the same issues.  Grammatically, I'm not the best writer ...but this is a judge free zone right?! :)

Thanks,
Lovee'

You can also contact me at prophyholic @ comporium.net, with any questions or private messages! 

Member of

Hemophilia of South Carolina
Hemophilia of North Carolina
Hemophilia Federation of America

6 comments:

  1. Hi Lovee,

    I just saw your Blog this morning for the first time. My wife and I are from Louisiana, but now live in South Charlotte. We have three children, Michael 10, Brandi 12, and Alex 18. Our boys have Severe Hemophilia A. I would love to connect with you as I agree. In the hemophilia community it often feels like we are alone. My boys never see other boys with hemophilia except at a meeting which is a hard place to make long term friends.

    I hope your family lives nearby and that we can meet.

    Thanks,
    Brad Nolan
    7004-806-0970

    ReplyDelete
    Replies
    1. Hi Brad, that would be great! My son is 10 to they are about the same age. Maybe we can meet for a family bowling night out.

      Delete
  2. Hi Lovee,

    I am also in Charlotte, well actually Matthews, NC. I think we were on a mutual call the other night. I am originally from New York, but have been living in Charlotte for about 6 years. I have 2 boys, Riley is 4 and does not have hemophilia and Noah is 2 years old with Moderate-Severe Hemophilia A. I stay home almost full time with them and often feel very isolated as I have only met people at meetings. Since Noah is in the toddler stage, life is very crazy right now and I really never know what is coming next with him! Maybe we can get together sometime!

    Gillian Schultz

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  3. Hi Lovee,

    I'm working on a device to train kids with hemophilia about the infusion process. We just finished our first prototype and are searching for user feedback to improve it. Would you be willing to provide us with some input? Since it is targeted towards kids, we would really value your opinion. Please let me know if you would like some more info on our current design.

    Thanks!

    ReplyDelete
  4. You're great! I also hemophiliacs. Hope we can be your friend!

    ReplyDelete
  5. Hi Lovee,
    Was you grandfather's name on your dad's side Ben?

    ReplyDelete

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