I am having one of those days! A day that says, how much more can we do? How can I keep up? One of those days where the right foot just keeps in front of the left to keep from completely breaking down.
I am a mother to 3 wonderful children. My middle child has CF. He is 18 years old. Most of his life, everything has been a challenge. His doctor even states how he likes to challenge medical science and keep him on his toes.
A little history. Cory is 18. He was diagnosed at 4 weeks old. He had lung problems and failure to thrive from the beginning.
Lately, I feel like I can't keep up. A year ago Cory cultured Burkholderia Cepacia. The "nasty" bug has now become completely resistant to all antibiotics. Shortly after culturing, we saw a pretty rapid decline in his pft's. He was always able to stay around 80-90%. A little over a year later we are lucky to stay in the 60%. We tend to treat it using 3-5 antibiotic combinations.
He got pretty sick his last year in high school. He ended up not completing high school(many reasons from moving to his health and the combination of the 2). Cory also has ABPA, CFRD, Chronic Sinus problems, and now he is having kidney problems.
I spend many days juggling doctor visits of 6 different doctors, insurance, medications and all the other stuff that goes along with CF. I am also a single mother and work 2 jobs to make ends meet. And did I forget to mention that I also have an ex-husband that no longer helps out with Cory or even has any communication with him. He does keep him covered with insurance but like to play mind games(like not adding Cory to the new prescription coverage so he is now without prescription coverage for the month of January and we have a prescription bill of $8,000).
I love my child. I go to bed at night and just cry, watching his struggle to want to be a "normal" 18 year old. Not an 18 year old that is surrounded by medication, medical equipment, peeing blood, in constant pain from either the kidneys or his joints, that sleeps most of his day, or needs to rest after a simple task like a shower. In the same breath I also fear on how I am going to keep up. Trying to get him to all the doctors and dealing with all the issues, it seems like I am constantly taking time from work(which I can't afford to do). I can feel the complete feeling of being overstressed. And if that isn't enough, I still have my other children. Trying to make life as normal as possible for them. In the end I am losing it.
I think I just needed to vent. Thanks
I am a mother to 3 wonderful children. My middle child has CF. He is 18 years old. Most of his life, everything has been a challenge. His doctor even states how he likes to challenge medical science and keep him on his toes.
A little history. Cory is 18. He was diagnosed at 4 weeks old. He had lung problems and failure to thrive from the beginning.
Lately, I feel like I can't keep up. A year ago Cory cultured Burkholderia Cepacia. The "nasty" bug has now become completely resistant to all antibiotics. Shortly after culturing, we saw a pretty rapid decline in his pft's. He was always able to stay around 80-90%. A little over a year later we are lucky to stay in the 60%. We tend to treat it using 3-5 antibiotic combinations.
He got pretty sick his last year in high school. He ended up not completing high school(many reasons from moving to his health and the combination of the 2). Cory also has ABPA, CFRD, Chronic Sinus problems, and now he is having kidney problems.
I spend many days juggling doctor visits of 6 different doctors, insurance, medications and all the other stuff that goes along with CF. I am also a single mother and work 2 jobs to make ends meet. And did I forget to mention that I also have an ex-husband that no longer helps out with Cory or even has any communication with him. He does keep him covered with insurance but like to play mind games(like not adding Cory to the new prescription coverage so he is now without prescription coverage for the month of January and we have a prescription bill of $8,000).
I love my child. I go to bed at night and just cry, watching his struggle to want to be a "normal" 18 year old. Not an 18 year old that is surrounded by medication, medical equipment, peeing blood, in constant pain from either the kidneys or his joints, that sleeps most of his day, or needs to rest after a simple task like a shower. In the same breath I also fear on how I am going to keep up. Trying to get him to all the doctors and dealing with all the issues, it seems like I am constantly taking time from work(which I can't afford to do). I can feel the complete feeling of being overstressed. And if that isn't enough, I still have my other children. Trying to make life as normal as possible for them. In the end I am losing it.
I think I just needed to vent. Thanks