Have you ever had one of those moments where you look back
at your life and you realize that hundreds/thousands of individual events have
all come together to form your life the way it is now? I’ve had these moments throughout my life,
and I realize how blessed I am for the way things have turned out so
far. I was thinking about how blessed I
am with my PFTs and my life right now, and I was thinking about how it would
all be different if certain events had never happened.
First, I was entirely blessed that my dad finished his
nursing degree right at the time I was born.
He knew the medical terminology, knew various medical issues that were
hot topics in the medical community, and he was able to do the feeding tubes I
needed without problem. In addition, he
pushed to find a CF center that was not jumping on antibiotics every time a
child got sick. He felt that resistance
would be a future issue, and he wanted to let my immune system fight what it
could on its own. Wow, am I grateful for
that. At this point in my life, I’m
resistant to a few antibiotics, but thankfully not too many. Because of this push, I have been at
University of Chicago since I was born.
I had one of the best pediatric doctors in the world, Dr. Lester, and
she was wonderful.
Tying in with the above, I am so fortunate that I live close
to Chicago. I can’t imagine how
different it had been if I had grown up in a state that didn’t have the massive
teaching centers that Chicago offers.
Chicago has numerous teaching centers and I think the standard of care
provided at University of Chicago is incredible. Had I been in a state without
an established and well-known CF clinic, then my life might be totally
different right now. I have been blessed
with an amazing, caring team of doctors who are entirely focused on my
health. In 2008, I had sinus surgery and
cultured both MRSA and P.A. in my sinus cavities. I was told that they had numerous doctors together
discussing my case to figure out the best way to treat me. When it comes to my health, I won’t lie to
you, I love being talked about J.
As stated initially, my dad’s career choice was a blessing
in my life. I also, however, was blessed
to have the parents I do. My parents
treated me like a normal child from day one. CF was not a disease I was going
to die from. They encouraged me to be just like every other kid. When I was little, I was outside running,
biking, rollerblading, and swimming from sun up to sun down. I came in for lunch and water breaks, but I
was allowed to be a kid. I wonder how it
would have been different if my parents hadn’t let me get all that wonderful
exercise throughout my childhood. I also wonder, if I had been born in today’s
day and age, would I have been playing video games instead of playing outside?
I was also born at the right time. When I came into this world, CF was advancing
and research was being completed. I was
fortunate enough to start on pulmozyme when I was very young, and I was lucky
that the vest came out when I was 8 or 9.
I was one of the first people to have it and it helped tremendously as I
was getting too big to lay on my parents legs while they beat on me. I have seen so many medications come into the
CF pipeline, and the way CF is treated has completely changed. I am so blessed
to have seen all of these medical advancements, and I can not wait to see the
other advancements still to come (like the vertex drug that I am very excited
about).
Even heading to the college I did and meeting my now-husband
has greatly impacted my CF life. I am so
grateful that he has such a caring heart, and a dedication to helping me fight
this disease. He works to provide us
with income and insurance. He makes me compliant with my treatments, and he
puts my health first all of the time. He
happened to get a job close to both of our families, and still close to
Chicago. Had he chosen a job somewhere else, I would be at a different CF
center. Had he not graduated a year
early, he may not have gotten a teaching job, and we may not have been blessed
with the wonderful insurance we have now.
I feel like I can never thank him enough for his continuous work and
dedication to ensure my health. He is a blessing, hands down.
Needless to say, I have been extremely blessed in my
life. This blog could go on and on, but
these are some of the top things I think about on a regular basis. If even one
of these factors had changed in my life, I don’t know that my lung function
would nearly be as high as it is. I am so grateful for my parents, my CF center,
and my husband. They are all incredible allies against this disease, and they
have helped me more than I will ever be able to realize/thank them for.
Perhaps because I'm reading all of this months after you've written it, I get to put it all together instead of catching up piece by piece, and as such have noticed the numerous times you've mentioned feeling out of place or "different" as a kid/teenager. So I thought I'd point out that while reading this Did remind me of the handful of times I saw you wearing that vest, in the (literally) hundreds of times you've crossed my mind during the years that we lost touch, never once was that the thought that entered my head. Always in my memory you were healthy and happy and stubborn as hell. :) And as always, a wonderful friend and companion. I wish I'd been able to tell you then not to be too self-conscious. You being "sick" or "different" (in any other than a good way) was always the furthest thing from my mind. Love you. :)
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