I am so extremely fortunate to be able to run my IV so fast. Makes it much more manageable. :-)
Wednesday, December 19, 2012
Tuesday, December 18, 2012
The Weight
I am naturally a fixer, a people pleaser, and someone who just wants to see other people happy.
That's the worst part of living with PIDD for me. It's not about what I feel or how I think about the dreams I've lost or the life I never had, at least not most of the time. The thing that bothers me more often is seeing those I love suffer. I watch them from afar, wishing there was something, anything, I could do... It is a big deal for me to be able to acknowledge that and try to let some of it go.
Letting it go is not easy for me. A dear friend is in a hospital right now where she should not be, where she should never have been in the first place. Due to what I feel is medical malpractice, she was left with minimal IVIG replacement and no one investigated. None of her doctors were bothered until she contracted several strains of mycobacteria. She will have permanent damage from this infection. IF she survives it. Sure that sounds morbid, but that's where things are right now. My friend's life is on the edge of a knife. She just spent 18 days in a hospital. She was released and re-admitted for severe GI tract problems within 36 hours. This makes me so angry. So unspeakably livid. WHY did none of her doctors investigate protein wasting when she could not hold on to her IG product? WHY?!??!?! Various forms of enteropathy are extremely common among CVID patients. Meanwhile, she's been symptomatic for months (sporadically, but STILL).
So now she's in a hospital fighting to figure out what's going on. Fighting to remain stable. Fighting for her life. Again. It's really not fair to her. There's really nothing I can do to help her. I would rather see her in a large medical center. I would rather see her getting evacuated to the National Institutes of Health. Why don't her doctors see the severity of her case? She shields me from it, but I can tell and I'm hundreds of miles away. Why must their professional hubris stand in the way? Why why WHYYYYYY!??!?!?!
I need to believe in a Christmas miracle. Pray for her. She deserves better.
That's the worst part of living with PIDD for me. It's not about what I feel or how I think about the dreams I've lost or the life I never had, at least not most of the time. The thing that bothers me more often is seeing those I love suffer. I watch them from afar, wishing there was something, anything, I could do... It is a big deal for me to be able to acknowledge that and try to let some of it go.
Letting it go is not easy for me. A dear friend is in a hospital right now where she should not be, where she should never have been in the first place. Due to what I feel is medical malpractice, she was left with minimal IVIG replacement and no one investigated. None of her doctors were bothered until she contracted several strains of mycobacteria. She will have permanent damage from this infection. IF she survives it. Sure that sounds morbid, but that's where things are right now. My friend's life is on the edge of a knife. She just spent 18 days in a hospital. She was released and re-admitted for severe GI tract problems within 36 hours. This makes me so angry. So unspeakably livid. WHY did none of her doctors investigate protein wasting when she could not hold on to her IG product? WHY?!??!?! Various forms of enteropathy are extremely common among CVID patients. Meanwhile, she's been symptomatic for months (sporadically, but STILL).
So now she's in a hospital fighting to figure out what's going on. Fighting to remain stable. Fighting for her life. Again. It's really not fair to her. There's really nothing I can do to help her. I would rather see her in a large medical center. I would rather see her getting evacuated to the National Institutes of Health. Why don't her doctors see the severity of her case? She shields me from it, but I can tell and I'm hundreds of miles away. Why must their professional hubris stand in the way? Why why WHYYYYYY!??!?!?!
I need to believe in a Christmas miracle. Pray for her. She deserves better.
Friday, December 14, 2012
An Ode to Nasonex and Symbicort
Sorry I've been neglectful, but life has been... intense.
Today's blog post is about my love for my winter regimen. I always forget how much better I feel when I do them once the weather gets cold and dry... I sleep better. I feel more energized. It's amazing.
So this song goes out to Nasonex and Symbicort. My life really would suck without you.
Today's blog post is about my love for my winter regimen. I always forget how much better I feel when I do them once the weather gets cold and dry... I sleep better. I feel more energized. It's amazing.
So this song goes out to Nasonex and Symbicort. My life really would suck without you.
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