I have been diagnosed with Aplastic Anemia. This is possibly secondary to Lupus, or unrelated, but it is real and it sucks. It seems as though I have been sick forever, but apparently it has only been 8 years, since the boys were born. I guess my immune system crapped out after making two perfect, tiny humans. Totally worth it as I watch them play basketball, dance to a song, listen to them sing with the iPod in the car. Worth it, but completely unfair.
It started with fevers and faigue and a lot of unexplained bruising on my legs. That, followed by plummeting red and white blood cells and platelets - pretty much all the stuff in our blood and bone marrow, stopped functioning. Several bone maarrow biopsies confirmed the diagnosis, done while I was in the hospital in May for fever/nausea/vomiting. That particular hospitalization was initially for a yeast infection. And my liver wasn't working, which caused a whole host of issues... Edema in the lungs, making breathing impossible, requiring me to be put on a ventilator.
I don't know if you have read back from 2007, but I was on a vent for a short time - insignificant compared to this, and one of my greatest fears...ever having to be on a vent again. I had even put in my living will that I wouldn't go back on a vent. Ever. But when my chances of living are 0-10% without breathing assistance, and much more promising with....you give pause. You give pause and you begin to wonder what will happen to those perfectly wonderful 8 year old boys. You worry about leaving your husband to do everything. You cannot fathom never kissing him again, holding his hand, watching a storm blow in together. You cannot begin to think about missing your daughters lives...everything so finite. And no idea if there is an afterlife.
I am not a religious person. I have struggled for years with what I believe, but I am certain enough of anything to put bets on what happens when we die. So unless I know I know that I can see my family, watch them, feel them in some way, and still bring them strength and assistance of some kind when they need it most-I am not dying if I have any choice.
This is what I thought as the critical care doctor was explaining my options of vent vs no vent. I looked at Todd and through blurry, crying eyes, I remember saying I couldn't give up...that I couldn't turn down the vent...I was too scared to die and wanted to whatever needed to stay alive. And that...was that. I spent 10 days on the vent. It was a completely different yet equally horrible experience as in 2007.
I spent over 50 days in the hospital. Which, by today's standards is a lot. When I came off of the vent and was awake, I had no strength, no muscle tone, no ability to do anything for myself. I had a few weeks where I slowly improved and was transferred out of ICU, and then I hit a wall, or relapsed, or something not so great. I lost my ability to roll over, to get out of bed, to make it to the restroom or bedside commode. I was wearing adult pull-ups and even changing out of those took more energy than I had.
I remember losing crazy amounts of calories. There were times when I would wake up for vital signs, eat something /anything as quickly as possible before falling asleep or freezing out of the covers, and then would be asleep as quickly as I had woken. Then there were other times when I wasn't allowed to sleep for days. Nurses would be in every 20-30 minutes due to transfusions or other high-touch medicine, and I simply could not get a moment to sleep. Those nights would lead into long days of crying, headaches, and generalized shitty days. Luckily there were not too many of the really bad days. There were a lot of long, boring uneventful days, and those days filled much of time in the hospital.
I don't know if you have read back from 2007, but I was on a vent for a short time - insignificant compared to this, and one of my greatest fears...ever having to be on a vent again. I had even put in my living will that I wouldn't go back on a vent. Ever. But when my chances of living are 0-10% without breathing assistance, and much more promising with....you give pause. You give pause and you begin to wonder what will happen to those perfectly wonderful 8 year old boys. You worry about leaving your husband to do everything. You cannot fathom never kissing him again, holding his hand, watching a storm blow in together. You cannot begin to think about missing your daughters lives...everything so finite. And no idea if there is an afterlife.
I am not a religious person. I have struggled for years with what I believe, but I am certain enough of anything to put bets on what happens when we die. So unless I know I know that I can see my family, watch them, feel them in some way, and still bring them strength and assistance of some kind when they need it most-I am not dying if I have any choice.
This is what I thought as the critical care doctor was explaining my options of vent vs no vent. I looked at Todd and through blurry, crying eyes, I remember saying I couldn't give up...that I couldn't turn down the vent...I was too scared to die and wanted to whatever needed to stay alive. And that...was that. I spent 10 days on the vent. It was a completely different yet equally horrible experience as in 2007.
I spent over 50 days in the hospital. Which, by today's standards is a lot. When I came off of the vent and was awake, I had no strength, no muscle tone, no ability to do anything for myself. I had a few weeks where I slowly improved and was transferred out of ICU, and then I hit a wall, or relapsed, or something not so great. I lost my ability to roll over, to get out of bed, to make it to the restroom or bedside commode. I was wearing adult pull-ups and even changing out of those took more energy than I had.
I remember losing crazy amounts of calories. There were times when I would wake up for vital signs, eat something /anything as quickly as possible before falling asleep or freezing out of the covers, and then would be asleep as quickly as I had woken. Then there were other times when I wasn't allowed to sleep for days. Nurses would be in every 20-30 minutes due to transfusions or other high-touch medicine, and I simply could not get a moment to sleep. Those nights would lead into long days of crying, headaches, and generalized shitty days. Luckily there were not too many of the really bad days. There were a lot of long, boring uneventful days, and those days filled much of time in the hospital.
It was hard, but I came out the other side.
It's funny in some ways because I feel the same as before, but I have let melancholy slip in and the days feel overwhelming and yet completely boring to the core. When will I feel that I have a purpose again?