Welcome to my blog!

You know, I have never done this blogging thing.  However, because of recent life circumstances, I thought this might be the best time to start.  Why, you ask?

Well, I have always enjoyed writing, for starters.  I remember my desire to be the first six year old to publish a book.  No joke.  However, that dream was not realized, and I went on to a different career path.  I went to graduate school and became a clinical social worker, and worked as a therapist with children and adolescents.  And I LOVE what I do on a day-to-day basis.  Still, there was always the nagging thought that I wanted to write- the belief that I have things that I want to say and that I am pretty darn good at putting my thoughts into written words.

Well, fast forward to June 2013.  My wonderful husband got an amazing job offer that would take us back to the town where I grew up.  I was excited to move back to the place where my parents and brother live, but I was sad to say goodbye to my friends and my wonderful job as an outpatient kids therapist with wonderful coworkers.  My last day was at the end of July, and since then, I have been looking for a job in my new/old town.  I really began mulling over the idea of doing more writing while I wait in that special purgatory where you send out multiple resumes (daily) and are waiting for social services agencies to call you back (and let me tell you, they are notoriously slow).

Now, I’m sure you’re wondering how you wound up on a blog about PKU and here I am musing about my career choices.  GETTING THERE!  I promise!  I just tend to be long winded 😉

I also have classical phenylketonuria, or PKU.  PKU is a metabolic disorder in which my body cannot metabolize phenylalanine, an amino acid in protein, properly.  When phenylalanine builds up in the body, it can cause brain damage, seizures and retardation (I will get into the specifics of how PKU works in a later post).  I was extremely fortunate that my PKU was diagnosed through newborn screening, and I have remained on the special PKU diet for my entire life.

However, there are still numerous challenges that adults with PKU face daily.  I continue to follow a low protein diet daily, as well as drink a special formula, which contains all of the amino acids except for phenylalanine, as well as vitamins and minerals that are missing from my diet because I don’t eat meat, dairy, legumes or anything high in protein.  I am in the first generation of PKU patients that are on their diet “for life”.  We are figuring out how to navigate relationships with family and friends, work, and romantic relationships while maintaining this PKU lifestyle and trying to stay healthy.

That’s where this blog comes in.  I would like to utilize this blog as a place to discuss my concerns with staying healthy on the PKU diet, as well as creating a space for PKU adults (as well as the parents of PKU kiddos) to connect and to learn from one another.

With that being said, I invite you to stop by once in a while- you might see something you like!



2 thoughts on “Welcome to my blog!

  1. I am excited to meet another PKU er , who is enthusiastic about leading a healthy PKU healthy lifestyle and writing about the challenges of ballenciing it with the rest of your life. Although , I am not of the same generation of PKU ers as you are, I think your blog will be a great asset to the PKU community. We need to have a place to communicate and learn about the day to day life of how it is as PKU ers grow up and venture into the wold. I am Kay Emerson , I am 56 and I was diagnosed with Classic PKU . I was put on the diet just after I was born until 10 years old. Returned as an adult.
    (Classical too boot ! I am too!)

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