This blog has come about out of the necessity to be understood; to try and illustrate, through words, the reality my daughter Nadine and I live. This is not an up beat blog. No cheerful stiff upper lip encouragement, or hopeful dangling carrots here.
This blog is a chronicle of our journey through the hellish fire that is our lives. In writing this I wish to both illuminate and educate, as well as make available the latest in medical research and therapies. No, I do not have the answers, nor the cure, but I do have extensive experience with not only being chronically ill myself, but raising a chronically ill child at the same time, mostly on my own.
Will this blog be depressing? Yes and no. There will be humor, hopefully lots of it. For one thing I do know is that this kind of suffering can kill you, or you can learn to laugh, and seek out the joy that can be found, or made, all around. My daughter and I, well, we choose the laughter, and sometimes, we even get to have real joy.
I guess I should inform you that this is not a blog simply about Ehlers-Danlos Hypermobility Type, but also about the multiple systemic diseases and conditions that go along with it. Here I will also talk about the other genetic conditions that have plagued my family for generations, and have left the female side of my Italian family suffering in the dark, alone, without ever knowing why.
I call this Walking Through The Fire because that is what it has been like these past 60+ years living with this inheritance. The cruel nature of this cluster of diseases is that we did not find out that it was genetic until 2008. It is not clear cut, nor does it follow a set pattern. It simply looks like you have several, or as in our case, lots of what seem to be "run of the mill" common, well known diseases. They are not. Finding that fact out has taken me 45 years of dogged research, experimentation, therapies, and tests. Mostly done or pursued by myself: in libraries, doctor's offices, and then finally, on the internet. I now have a team of doctors, therapist, and at least three geneticist who are either working directly with my daughter and I, or are assisting and advising us in our search for the answers on a medical and genetic level.
Now ... where to begin? .........
This blog is a chronicle of our journey through the hellish fire that is our lives. In writing this I wish to both illuminate and educate, as well as make available the latest in medical research and therapies. No, I do not have the answers, nor the cure, but I do have extensive experience with not only being chronically ill myself, but raising a chronically ill child at the same time, mostly on my own.
Will this blog be depressing? Yes and no. There will be humor, hopefully lots of it. For one thing I do know is that this kind of suffering can kill you, or you can learn to laugh, and seek out the joy that can be found, or made, all around. My daughter and I, well, we choose the laughter, and sometimes, we even get to have real joy.
I guess I should inform you that this is not a blog simply about Ehlers-Danlos Hypermobility Type, but also about the multiple systemic diseases and conditions that go along with it. Here I will also talk about the other genetic conditions that have plagued my family for generations, and have left the female side of my Italian family suffering in the dark, alone, without ever knowing why.
I call this Walking Through The Fire because that is what it has been like these past 60+ years living with this inheritance. The cruel nature of this cluster of diseases is that we did not find out that it was genetic until 2008. It is not clear cut, nor does it follow a set pattern. It simply looks like you have several, or as in our case, lots of what seem to be "run of the mill" common, well known diseases. They are not. Finding that fact out has taken me 45 years of dogged research, experimentation, therapies, and tests. Mostly done or pursued by myself: in libraries, doctor's offices, and then finally, on the internet. I now have a team of doctors, therapist, and at least three geneticist who are either working directly with my daughter and I, or are assisting and advising us in our search for the answers on a medical and genetic level.
Now ... where to begin? .........
Hey Lilith, I'm glad you have a forum to discuss these important issues. I'm sorry about the pain but glad you still laugh and find joy in life. It's nice to know that even though we endure terrible pain that we still find the strength to create and find joy! Fight on Warrior Sister!
ReplyDeleteLOL Thank you dear sister!
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