Life without lupus
As many of you know, my husband was diagnosed with systemic lupus in August 2005 after years of weird blood readings and symptoms. On Tuesday, we go for his third treatment out of six. I'm pretty euphemistic with the word treatment, but what I mean is low-dose chemo to bring his immune system down enough so it isn't attacking healthy tissue. It's basically five hours of sitting there with an IV in his arm. I like spending the time with him. I just wish it were elsewhere.
M's diagnosis made me feel helpless. I'm a "fixer," a control freak, and I want my world to be ordered and neat. His illness changed all that. There are many things in this life we can't control, and our health is ultimately one of them. It's corny, trite and been said a million times before, but losing your health, or watching someone you love more than life struggle with his, makes you appreciate what's important. What's important is him. Us. The love we've shared for the past six-plus years. The life we're going to build together. The children we will have. It's made me appreciate stuff like being able to lie in bed with him on a lazy Sunday, just snuggling and listening to the radio. It's put a whole new spin on our nature rides, as we call them, when we wind through western Massachusetts. Every moment with him is precious. I'm grateful, thankful and humbled by the fact that my husband is still here with me, and that this disease is treatable. Twenty years ago, people died from lupus.
As for the title of this post, I've become a sort of quasi-activist for lupus research. In October, I did the Lupus Walk in Boston with M and my mother-in-law and raised almost $1,000. At that walk, I bought an orange rubber bracelet emblazoned with the title of this post. It never leaves my wrist. And it won't until there's a cure. It's a wish, a hope, that will hopefully someday become a reality. For now, I'm hoping his treatment puts us into a good, long remission.
I want my life with my husband back. And I want us to go on. To make a family. To further our careers. To enjoy our friends and family. Hell, to enjoy life. We both work our asses off. I want to pull every good moment out of every day, with him beside me.
Thanks for listening
M's diagnosis made me feel helpless. I'm a "fixer," a control freak, and I want my world to be ordered and neat. His illness changed all that. There are many things in this life we can't control, and our health is ultimately one of them. It's corny, trite and been said a million times before, but losing your health, or watching someone you love more than life struggle with his, makes you appreciate what's important. What's important is him. Us. The love we've shared for the past six-plus years. The life we're going to build together. The children we will have. It's made me appreciate stuff like being able to lie in bed with him on a lazy Sunday, just snuggling and listening to the radio. It's put a whole new spin on our nature rides, as we call them, when we wind through western Massachusetts. Every moment with him is precious. I'm grateful, thankful and humbled by the fact that my husband is still here with me, and that this disease is treatable. Twenty years ago, people died from lupus.
As for the title of this post, I've become a sort of quasi-activist for lupus research. In October, I did the Lupus Walk in Boston with M and my mother-in-law and raised almost $1,000. At that walk, I bought an orange rubber bracelet emblazoned with the title of this post. It never leaves my wrist. And it won't until there's a cure. It's a wish, a hope, that will hopefully someday become a reality. For now, I'm hoping his treatment puts us into a good, long remission.
I want my life with my husband back. And I want us to go on. To make a family. To further our careers. To enjoy our friends and family. Hell, to enjoy life. We both work our asses off. I want to pull every good moment out of every day, with him beside me.
Thanks for listening
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