I never realized how extensive a process it is to get my life back in balance.
CF has slowly crept into every pocket of my mind and overwhelmed my world.
I woke up today and decided, with a firm affirmation, that that was not alright.
Then, with renewed spirit and morning hair, I turned on an old Feist song that had brightened my mood so many times in the past, and I ate a bowl of cereal.
Decidedly, lung diseases are best shown their place by consuming mass quantities (three bowls!!!) of Honey Bunches of Oats (with pecan bunches).
And with every mark I make in my road atlas, and every note I write to myself about what to pack for the trip, CF slowly fades into the background, a faint protest of 'Don't ignore me!' and 'Insecurity is your friend!' becoming mere squeaks of my mechanical pencil as I erase and rewrite the route of choice from Wyoming to Colorado.
This summer is a metamorphosis. I'm not a sick girl. I'm a girl on a mission to get my little blue car to the west coast and back.
No lung problems or bad attitudes allowed in this clubhouse.
Monday, May 23, 2011
Monday, May 2, 2011
a slow process;;
It's taken me awhile to get back on my feet. If I'm honest with myself, I'm still struggling, though just barely, comparatively.
For two weeks post hospital stay, I was in a daze. I would start to cry for no reason, I was constantly finding myself agitated or upset over something that normally wouldn't cause me to bat an eyelash, I was snippy and snarky and anxious.
But at the point that I was discharged, I'd had over two weeks of consistent, substantial hemoptysis [hi-mop-tuh-sis –noun: the expectoration of blood or bloody mucus] and two procedures. One, fairly routine bronchoscopy followed by a less routine pulmonary embolization, a fascinating procedure that allows interventional radiologists to enter the femoral artery in the groin and travel up and through the descending aorta into the bronchial artery to cauterize malformed, bleeding blood vessels in my lung. Technology never ceases to amaze..
That said, in the hours after the procedure, I felt, for the first time in years, that I couldn't do CF anymore. I hit an invisible, anesthesia induced wall, and as I was lying on my right side, coughing up blood YET AGAIN, a small part of me broke. I tried to control the sensation, but I couldn't see past the bed, the sweat covered pillow and blankets, the catheters, the chest pain, the blood that would. not. stop. How can I get through a lung transplant if I can't even get through this? What is the point, really? I'm never going to sit up again. I'll never stop coughing up blood. I might as well just lay here and cry.
And as a team of anesthesiologists and floor residents flooded my room, I just broke down and cried. My nurse started moving my belongings into the bathroom, and clearing out excess furniture from around my bed, and placed a new ventilator/bag at my bedside, while three doctors had me sign consent to intubate if necessary, and floor residents asked to see the cup of blood and my mom sat by my bed holding my hand as I thought to myself - I really can't do this anymore.
I was, in that moment in time, done.
It's hard to see past times like that. Once those tiny thoughts and insecurities and doubts flood your brain, they're hard to work through. Even after I was discharged, fifteen days later, I was afraid that any coughing would induce another bleed. I was afraid of sleeping, and if I rolled onto my right side I would just cry. Easy as that.
I've been home for a little over three weeks, and I'm starting to feel like myself again. I'm on the mend.. But it's a slow process, and I find myself projecting to what the next procedure may be like, down the line. Or how I'll get through the next admission, or, eventually, a lung transplant.
I also struggle with explaining this to my friends, loved ones, doctors, etc. It's easy for me to feel what I'm feeling, and understand what I'd like people to comprehend and how I'd like them to react, and offer support, but it's hard to express that. How do I say to someone, 'Sorry, you're not being as supportive as I'd like, please get your head out of your ass and help me,' without offending?
But that's a rant for another day.
The point is, the point I've been getting to, slowly, is that I'm recovering.
And that I could still use support.
CF can be so much larger than myself at times, and it takes a HELL of a lot of work to keep my life in balance..
For two weeks post hospital stay, I was in a daze. I would start to cry for no reason, I was constantly finding myself agitated or upset over something that normally wouldn't cause me to bat an eyelash, I was snippy and snarky and anxious.
But at the point that I was discharged, I'd had over two weeks of consistent, substantial hemoptysis [hi-mop-tuh-sis –noun: the expectoration of blood or bloody mucus] and two procedures. One, fairly routine bronchoscopy followed by a less routine pulmonary embolization, a fascinating procedure that allows interventional radiologists to enter the femoral artery in the groin and travel up and through the descending aorta into the bronchial artery to cauterize malformed, bleeding blood vessels in my lung. Technology never ceases to amaze..
That said, in the hours after the procedure, I felt, for the first time in years, that I couldn't do CF anymore. I hit an invisible, anesthesia induced wall, and as I was lying on my right side, coughing up blood YET AGAIN, a small part of me broke. I tried to control the sensation, but I couldn't see past the bed, the sweat covered pillow and blankets, the catheters, the chest pain, the blood that would. not. stop. How can I get through a lung transplant if I can't even get through this? What is the point, really? I'm never going to sit up again. I'll never stop coughing up blood. I might as well just lay here and cry.
And as a team of anesthesiologists and floor residents flooded my room, I just broke down and cried. My nurse started moving my belongings into the bathroom, and clearing out excess furniture from around my bed, and placed a new ventilator/bag at my bedside, while three doctors had me sign consent to intubate if necessary, and floor residents asked to see the cup of blood and my mom sat by my bed holding my hand as I thought to myself - I really can't do this anymore.
I was, in that moment in time, done.
It's hard to see past times like that. Once those tiny thoughts and insecurities and doubts flood your brain, they're hard to work through. Even after I was discharged, fifteen days later, I was afraid that any coughing would induce another bleed. I was afraid of sleeping, and if I rolled onto my right side I would just cry. Easy as that.
I've been home for a little over three weeks, and I'm starting to feel like myself again. I'm on the mend.. But it's a slow process, and I find myself projecting to what the next procedure may be like, down the line. Or how I'll get through the next admission, or, eventually, a lung transplant.
I also struggle with explaining this to my friends, loved ones, doctors, etc. It's easy for me to feel what I'm feeling, and understand what I'd like people to comprehend and how I'd like them to react, and offer support, but it's hard to express that. How do I say to someone, 'Sorry, you're not being as supportive as I'd like, please get your head out of your ass and help me,' without offending?
But that's a rant for another day.
The point is, the point I've been getting to, slowly, is that I'm recovering.
And that I could still use support.
CF can be so much larger than myself at times, and it takes a HELL of a lot of work to keep my life in balance..
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