“It’s the End of the World as We Know It” is from one of my all time
favorite bands, R.E.M. When I was
diagnosed with Type 1 I had an R.E.M. CD in my car with that song and I was
playing it frequently. Every time the
song played I wound up in tears. I can’t
tell you how long it continued, I don’t remember. At least for a few weeks and probably longer,
and I never discussed it with anyone before now. I felt like it was the end of the world because I
was terrified about what my new disease meant and what was coming. There are plenty of things to be worried
about! It takes some time to come to
terms with them all. Sometimes I’m still
not sure I have, but I keep trying.
On the day my endocrinologist gave me that first shot of
insulin, I told the friend who was with me that it meant I would die
early. I held off on crying until after
we made it to the parking lot (victory!), but then I lost it. I didn’t know what diabetes meant but I was
pretty sure it involved a shorter lifespan.
The reality is that it might and it might not. The most recent information I’ve seen is that
Type 1 shortens the average life expectancy by 12
years. Ouch! Since I don’t know what my life expectancy
was before I was diagnosed, that isn’t quantifiable. I don’t know what I would have gotten, so I
don’t know what (x – 12) is. And since
it’s an average, it means plenty of people lose less than 12 years, others lose
more and some even gain time. When we
were in grad school, my roommate and I made bad statistics jokes. One was “skew the distribution in your
neighborhood,” a play on Mr. Rogers. I
don’t want to be average; I want to skew that distribution to the high side and
I’m doing what I can to get there. I’m
also hopeful that being diagnosed in my 40s means my odds are improved since
that means 30-40 years less damage from high and low blood sugars in my
body. We’ll see how things turn out, but
I’m planning to stick around for a long time.
At that same early endo visit, he told me I needed to start
taking a statin to lower my cholesterol.
I declined immediately and we debated the subject for a few minutes. I’ve done a lot of reading about cholesterol
and am comfortable with my test results and lack of family history. My doc agreed to let the issue go. But in the next sentence he tried to scare me
into changing my mind when he said “we’ll revisit it after you have a stroke or
heart attack.” We actually revisit the
subject every time I see him when he reminds me again that I should be eager to
start my statin regimen. It’s not
happening, but he’s going to keep trying to scare me into obedience.
The statin chat is my favorite example of managing diabetes
with fear. But then there are the other
fun things to worry about over time.
When I told my eye doctor about my diagnosis he happily shared that we
have some of the top retina specialists in the U.S. available right here in
Cleveland. Awesome! But…I’d really rather not need to see any of
them. Each time I see the endo he asks
if I’m checking my feet daily for injury.
Why my feet? Because any
unnoticed injury could be the one that ultimately leads to amputation of a toe
or a whole foot. Neuropathy from high
sugar could mean I wouldn’t notice that I stepped on a rusty nail. Circulation problems could lead to poor
healing or higher risk of infection, and then they could need to remove that
part of me. Not something I’m interested
in, thank you. And one more that I
forget about – when I was diagnosed with high blood pressure around the same
time as T1, I asked why I was prescribed the specific medication I was
given. The reason for that drug? It will help protect my kidneys from the
damage diabetes can cause. Oy vey.
My point here isn’t to scare anyone or to say that I expect to
leave this world prematurely, blind and 7-toed.
My point is to explain that so much of Type 1 is about fear and the
language of fear. Nobody’s ever going to
say I’m the most optimistic person they’ve ever met. No chance of that! I’m often the sarcastic
cynical in any crowd and all the possibilities of T1 scare me. Of course I worry about the long term
complications that could hit me down the road.
But I’m not good with living filled with fear and anxiety. I prefer to think that I’m fighting and I’m
winning instead of that I’m biding my time until I have the heart attack my
doctor believes I’ll assuredly drop dead from without his help. This is a chronic disease that can kill me
and everyone dies from something wearing a pile of scars from experiences good
and bad. There’s no guarantee that T1 is
going to get me and I’ll keep doing everything I can in the meantime so that
something else gets me when that day comes.
I’m planning to go out with my eyes and toes intact, thank you very
much. Living in fear is way too much
work. I’m living my life.
On the side of positive reinforcement there are 2
organizations I’m aware of that celebrate lives lived successfully with T1 and
both send medals to commemorate significant diagnosis anniversaries. Lilly
Diabetes awards medals at the 10, 25, 50 and 75 year marks. The Joslin Diabetes
Center also awards medals after 50 and 75 years of living with T1, and a
certificate after 25. Why are they
giving out awards for reaching T1 milestones?
Because it isn’t easy to do and because it was impossible to reach those
goals not so long ago. I’m not holding
out any hope for 75 years, but I’m aiming for those 50 year medals and can
guarantee I’ll submit my application each time I hit one of those marks.
The pictures from my first skydiving experience tell the whole story. I couldn't stop smiling before, during and after the trip of a lifetime. Living!
Great post Dana! I so admire your zest to live life to its fullest!
ReplyDeleteThank you, Susan!
DeleteI love reading these posts, Dana. What strikes me with the statin comments is that this one issue is global - doctors use fear to get our permission to medicate us. I love the fact that you do your research and then do what is best for *you.* I feel the same way, and always tell my clients that they *do* have the right to refuse medication. Sometimes we forget our rights in the doctor's office - I am proud to know someone who never does, and to call her a friend. Love, support and blessings!
ReplyDeleteChris
Thanks, Chris. I'm so glad you enjoy reading them! Advocating for yourself with doctors is a hard lesson to learn and sometimes even harder to practice. For all the bad that came out of the Avelox nightmare, learning to speak up for myself in that space is an enormous positive. Very cool to learn you try to teach that lesson yourself with clients, they're lucky to have you sending that message. It was really great talking last night, I look forward to seeing you next week. Love you.
ReplyDelete