XLH and Me

I am a 50-something-year-old southern woman living with XLH, a metabolic bone disorder. I think of it as a disorder. Some medical types refer to it as a disease. My partner refers to it as a “medical situation.” I like that.

I am not disabled; however, some folks with XLH are disabled or become disabled as they age with XLH. So, that is why I do touch on the themes of disability in this blog.

I have primarily started this blog to support my fellow XLH-ers out there in the world. However, if you do not have XLH, you may enjoy reading it, since some of the themes I write about are universal–aging, for example, and dealing with healthcare, etc. I write about my own personal experiences and I do not offer medical advice. I’m one of those artistic-creative types of people, not one of those scientific-medical types who are more qualified to give out medical advice.

Go to www.xlhnetwork.org  for more information on XLH.

6 Responses to “XLH and Me”

  1. Kelli Thomas November 16, 2012 at 11:55 am #

    Hi
    My name is Kelli Thomas and I have XLH also. Very interested in knowing what DR you use if any. Bio says you are in the south! I’m in KY.

    • banjogrrldiaries November 16, 2012 at 4:50 pm #

      My endocrinologist is Dr. Thomas Weber at Duke Hospital in Durham, NC. After the initial consultation, he corresponded with my family doctor on treatment, so that I wouldn’t have to drive back and forth to see him for ongoing treatment. He just wants to see me once a year and if/when my family doctor has questions, she consults with him.

      I hope this helps!

  2. Christena January 2, 2014 at 2:55 pm #

    would like plans for the limberjack thank u

    • banjogrrldiaries January 2, 2014 at 3:24 pm #

      I have tried to send you the plans, using the email address that is set up for your wordpress account and have received an error message that the address is not correct. Perhaps you will need to update your email address and resend your comment.

  3. Karen Lewis July 9, 2014 at 3:05 pm #

    Thank you so much for your writing.

    As a 34 year old single woman living at the more painful end of the XLH spectrum, I just discovered your blog through XLH Network and it has made me smile at least 10 times today… I needed that.

    • banjogrrldiaries July 9, 2014 at 3:16 pm #

      Thank you for reading my blog and I’m so glad it has made you smile! Sometimes, it’s the humor and irony of life and my experiences that help me get through tough moments and through the pain (and the emotions that come with it). I appreciate your comments! Take care.

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