Been about a month
Time to write. About happy stuff.
The nurse is doing my alpha-1 infusions now. My hands don't look like I've been in a boxing match anymore. She'll be here tomorrow. Having gone without the antitrypsin for weeks, and now having gotten regular treatments for a while, I have to say I think the infusions help. That's a good thing. More energy = happier self.
My siblings have been getting tested for alpha-1 deficiency. With the results coming in it appears that our parents were both MZ. That's the best and the worst put together. :) It is interesting finding out. I've been keeping a blog (not faithfully) about what I'm learning and how I'm feeling. I am really glad to see my nieces and nephews taking interest. My own children are aware of this miserable genetic anomaly. Finally getting more people in the family to be aware. We have a huge family. About 100 descendents of my parents so far, and more on the way. I really hope that my experience helps them.
Life is good, and I am happy.
The nurse is doing my alpha-1 infusions now. My hands don't look like I've been in a boxing match anymore. She'll be here tomorrow. Having gone without the antitrypsin for weeks, and now having gotten regular treatments for a while, I have to say I think the infusions help. That's a good thing. More energy = happier self.
My siblings have been getting tested for alpha-1 deficiency. With the results coming in it appears that our parents were both MZ. That's the best and the worst put together. :) It is interesting finding out. I've been keeping a blog (not faithfully) about what I'm learning and how I'm feeling. I am really glad to see my nieces and nephews taking interest. My own children are aware of this miserable genetic anomaly. Finally getting more people in the family to be aware. We have a huge family. About 100 descendents of my parents so far, and more on the way. I really hope that my experience helps them.
Life is good, and I am happy.
Replies
Dee, what a wonderful entry. I can understand Bob having problems finding the right spot to insert the needle. After an individual has been stuck so many times it is quite difficult to find new strong places to do an infusion. I know Bob is chestfallen because he can\'t help as he used to.
But what your doing in making your family aware is wonderful. It takes real courage to do it, especially with a group that large. And I am glad the kids (even the adult ones) are taking a greater interest in the disease and the potential impact.
Keep writing your blog I love it. Take care -- Bill
It\'s good your family is taking this seriously & getting tested. Hope the results are negative for most of them.