In all of the events of the past few weeks it totally escaped me that I’ve now kept this blog for more than a year! Wow! It doesn’t seem that long.
When I first started the blog, I intended it to be more of a mix of my own thoughts with HPS-related topics thrown in as well. I’ve long wanted to write a book about the HPS Network, the history of the syndrome and our journey to the cure. It seemed a good place to “take notes” of all the many little things that happen along the way, and what it takes to advocate in the medical world and get research and treatments.
But a year into the blog, and it seems to have morphed yet again. I don’t have time to write the book right now. I’m too busy trying to get the cure. Grin! And, the story isn’t finished yet. Maybe when we get FDA approval for Pirfenidone to treat HPS there will be a development worthy of an ending (although that won’t be the end of the story either.)
Something else, however, has happened with the blog along the way. I average 30 to 50 readers a day. Hardly earth shaking, but most of those are other people with Hermansky-Pudlak Syndrome.
Having a rare disease can sometimes leave you questioning your own sanity. We experience symptoms that often go undiagnosed, untreated or unappreciated by our doctors and families. We have a thought process, an experience, so different than that of many of the people around us that often we keep it to ourselves. We stew in our own juices, sort of speak, and sometimes think that we’re the only ones with these thoughts and emotions running through us. We’re striving to somehow be heard and understood. Over the course of this year I’ve had a number of e-mails or posts from people saying, “I’ve had that happen to me,” or “That’s how I feel too.” For me, those are treasures.
I treasure them because they’re messages from people I dearly love. I treasure them because it reminds me that we’re not all in this alone. We’ve got each other. There are actually other people that understand. It’s comforting to know there are others out there that can relate.
I’ve also had the occasional e-mail, (always from someone removed from the HPS world) chastising me for sharing so many intimate details of my life and my health. Somehow they’ve stumbled on these pages and they still don’t get it. It’s for those e-mails that God created the delete key. Who cares. If I got a thousand of those e-mails, I’d still be transparent for the sake of a single HPS’er that says they’ve benefited from knowing someone else struggles with bowel issues, or horrible periods, or bad breathing days.
I don’t know how this blog will morph in the future. It’s a constant work in progress. But I’ve thoroughly enjoyed keeping it, and been blessed so many times over by those who have read it.
When I first started the blog, I intended it to be more of a mix of my own thoughts with HPS-related topics thrown in as well. I’ve long wanted to write a book about the HPS Network, the history of the syndrome and our journey to the cure. It seemed a good place to “take notes” of all the many little things that happen along the way, and what it takes to advocate in the medical world and get research and treatments.
But a year into the blog, and it seems to have morphed yet again. I don’t have time to write the book right now. I’m too busy trying to get the cure. Grin! And, the story isn’t finished yet. Maybe when we get FDA approval for Pirfenidone to treat HPS there will be a development worthy of an ending (although that won’t be the end of the story either.)
Something else, however, has happened with the blog along the way. I average 30 to 50 readers a day. Hardly earth shaking, but most of those are other people with Hermansky-Pudlak Syndrome.
Having a rare disease can sometimes leave you questioning your own sanity. We experience symptoms that often go undiagnosed, untreated or unappreciated by our doctors and families. We have a thought process, an experience, so different than that of many of the people around us that often we keep it to ourselves. We stew in our own juices, sort of speak, and sometimes think that we’re the only ones with these thoughts and emotions running through us. We’re striving to somehow be heard and understood. Over the course of this year I’ve had a number of e-mails or posts from people saying, “I’ve had that happen to me,” or “That’s how I feel too.” For me, those are treasures.
I treasure them because they’re messages from people I dearly love. I treasure them because it reminds me that we’re not all in this alone. We’ve got each other. There are actually other people that understand. It’s comforting to know there are others out there that can relate.
I’ve also had the occasional e-mail, (always from someone removed from the HPS world) chastising me for sharing so many intimate details of my life and my health. Somehow they’ve stumbled on these pages and they still don’t get it. It’s for those e-mails that God created the delete key. Who cares. If I got a thousand of those e-mails, I’d still be transparent for the sake of a single HPS’er that says they’ve benefited from knowing someone else struggles with bowel issues, or horrible periods, or bad breathing days.
I don’t know how this blog will morph in the future. It’s a constant work in progress. But I’ve thoroughly enjoyed keeping it, and been blessed so many times over by those who have read it.
Comments
We've never met another affected person in real life, but have had the internet to connect and hopefully before my daughter reaches adulthood, she'll be able to meet another.