W
welshwitch
Guest
I just had a dr. appointment yesterday--uneventful--which was great. PFTs looked great, I talked to my doctor, social worker, nurses, etc. I was in and out of there within 45 minutes.
It made me think back to, 6 years ago, I came to this forum, a scared, freaked out 25 year old I was just coming out of denial and realizing that CF was real. I had no idea how to take care of myself, no idea how to advocate for myself, and no real clue if I was going to get to proceed with my life like my peers. I was overwhelmed with some of the bad PR I had absorbed about CF over the years and was unable to shake the fear that I was going to die young.
I was, in a word, stuck.
Six years ago I would come to each doctor appointment, panicked, and nervous, afraid for the worst. I had no clue what constituted a hospital visit, how IVs worked. I was too afraid to engage with my disease, too scared to take a peek at what was in store for me.
You see, my problem was not physical, per se....it was the mental aspects of dealing with a "terminal" disease. I hid my disease from everyone. I was afraid to talk about it with my family. I felt like if I could pretend it wasn't there, it would go away.
Six years of healing, talking to the CF social worker, and coming on this site has made me think about it differently.
In the past six years, I have gone from not doing any treatments to doing pulmozyme once a day, and running 3 - 4 miles every day.
In the past six years, I have taken an active role in my body, and my health. I have done two half marathons, one century bike ride, and have actively started to avoid things like smoke and unhealthy food.
In the past six years, I have opened up to my social worker about how and why this disease scares me so much. That in turn has led me to have real conversations with my friends, family and boyfriend about this disease, and explain that it's a challenge, but not one that I am afraid to fight.
In the past six years, I have stopped panicking at the doctor. Moreover, I initiated a sinus surgery procedure all by myself that has shown me that I can be an advocate for myself in hospitals. Finally I engage with the doctors at my CF center, take full responsibility for my own medications and work full time so that I can have health insurance and don't have to depend on anyone but myself to do so.
In the past six years, I have begun to envision a healthy future, possible motherhood, marriage, home ownership and all the other good stuff you get to look forward to when you age.
The active role I have taken in my CF care has shown me that it is possible to handle CF as an adult. I feel like the medications are invaluable, but also taking an active role in becoming fit and healthy. I run because of airway clearance. I don't do it to look good, win races, or be a star. I do it for my health, so I can be a strong mother/spouse/employee/sister/daughter/friend. For me, it has become a NON NEGOTIABLE.
Thank you, CF community, for being with me on this journey. I still have a long way to go, but I am proud of where I am at this time.
It made me think back to, 6 years ago, I came to this forum, a scared, freaked out 25 year old I was just coming out of denial and realizing that CF was real. I had no idea how to take care of myself, no idea how to advocate for myself, and no real clue if I was going to get to proceed with my life like my peers. I was overwhelmed with some of the bad PR I had absorbed about CF over the years and was unable to shake the fear that I was going to die young.
I was, in a word, stuck.
Six years ago I would come to each doctor appointment, panicked, and nervous, afraid for the worst. I had no clue what constituted a hospital visit, how IVs worked. I was too afraid to engage with my disease, too scared to take a peek at what was in store for me.
You see, my problem was not physical, per se....it was the mental aspects of dealing with a "terminal" disease. I hid my disease from everyone. I was afraid to talk about it with my family. I felt like if I could pretend it wasn't there, it would go away.
Six years of healing, talking to the CF social worker, and coming on this site has made me think about it differently.
In the past six years, I have gone from not doing any treatments to doing pulmozyme once a day, and running 3 - 4 miles every day.
In the past six years, I have taken an active role in my body, and my health. I have done two half marathons, one century bike ride, and have actively started to avoid things like smoke and unhealthy food.
In the past six years, I have opened up to my social worker about how and why this disease scares me so much. That in turn has led me to have real conversations with my friends, family and boyfriend about this disease, and explain that it's a challenge, but not one that I am afraid to fight.
In the past six years, I have stopped panicking at the doctor. Moreover, I initiated a sinus surgery procedure all by myself that has shown me that I can be an advocate for myself in hospitals. Finally I engage with the doctors at my CF center, take full responsibility for my own medications and work full time so that I can have health insurance and don't have to depend on anyone but myself to do so.
In the past six years, I have begun to envision a healthy future, possible motherhood, marriage, home ownership and all the other good stuff you get to look forward to when you age.
The active role I have taken in my CF care has shown me that it is possible to handle CF as an adult. I feel like the medications are invaluable, but also taking an active role in becoming fit and healthy. I run because of airway clearance. I don't do it to look good, win races, or be a star. I do it for my health, so I can be a strong mother/spouse/employee/sister/daughter/friend. For me, it has become a NON NEGOTIABLE.
Thank you, CF community, for being with me on this journey. I still have a long way to go, but I am proud of where I am at this time.