Wellness Wednesday: Reflections on Diabetes

Wednesday, July 23, 2014

This is not a normal "Wellness Wednesday" entry.  This one is about me.  And so many others.

It's hard for me to really describe type-one diabetes.  I guess it's always been something that I've sought to minimize in my friendships and conversations with others.  Because of that, I haven't really developed the vocabulary to really describe what it's like to live with it.  When I sat down to think about it for this post, I had to allow myself to be conscious of certain realities that I generally try to ignore.  I put my head in my hands and I cried.  I tried to let myself imagine what it would be like to have the disease cured in my lifetime.  I stopped myself.





Some of the things I considered when I thought about the disease included my future.  In particular I considered the following:

  • Almost all type-one diabetics will develop complications as an inevitable result of having extra sugar running around in the blood.  The leading complications are cardiovascular arrest, blindness, kidney failure, and neuropathy leading to foot/leg amputation.
  • After 18 years of the disease, I some neuropathy in my feet although it is not currently a dangerous level.  The blood vessels in my ankles have problems and I do cannot flex my ankles properly.
  • 1 in 20 otherwise healthy, well-controlled type-one diabetics under the age of 40 will die suddenly in their sleep from unknown causes.  This "dead-in-bed syndrome" is suspected to be associated with a delayed drop in bloodsugar, possibly due to exercise. 
  • I will die from this, which is kind of miserable since I've been trying to beat it longer than I can remember.  It reminds me of running in the heat just for as long as you can keep going, but knowing that you won't ever get out of it unless there's a miracle. 

I thought about the present:
  • Every now and then, I have stable, perfect bloodsugars for my entire run and I run more than twice my normal amount.  I feel amazing.  Is this how everyone else feels all the time?
  • My insulin pump was alarming in the middle of a conversation with a senior attorney today at work.  I awkwardly asked him if I could have a moment.  He said, "sure" but didn't leave my office.  I couldn't figure out how to explain it, so I turned around in my chair and reached into my bra for my insulin pump before he finally got it.  I have had so many experiences where I've had to reach into my bra for my pump at horrible times and I do not have a good solution for this.  I have no idea what people think.
Insulin pump on wedding day

  • I feel like I spent my life fighting with insurance companies and primary care physicians and referrals and drug companies.  At no point in my adult life have I ever fully checked this stuff off my to-do for even a day.
  • My bloodsugar is constantly on my mind and I'm constantly evaluating it no matter what I'm doing.  Should I try to take insulin before the appellate lunch?  What if I miscalculate and it takes them awhile to serve?  I'm dropping.  Oh god, I'm dropping, what if the judge walks in and asks me something difficult?  What do I even have in this office drawer?  Where's the nearest Sprite machine?  I'm dropping, will I make it through oral argument?  Is my bloodsugar going to spike when I give that presentation and cause my pump to alarm?  Ugh.
  • Every time I exercise, I either spike or drop.  I risk dying in bed the following night.
  • I wake up with low bloodsugar every single morning.  The only thing harder than getting out of bed in the morning is getting out of bed with low bloodsugar.
  • A lot of people think that this is my fault.  
  • Almost everyone seems to know someone who died young from diabetes and they always feel the need to tell me about it.  This is one situation where reality just doesn't help.
  • I can feel my bloodsugar shifting.  I feel my heart start pounding.  I feel myself start to get sick.
  • I don't eat pizza anymore.  I miss it occasionally. 
  • My stomach is full of needles and tape.  Right now, the tape really isn't working, everything stings.
My stomach today. 
  • It's not cancer.
  • It's not AIDS.
  • It's not cystic fibrosis.
  • It actually isn't the worst thing.
  • Without a cure, I'll still never be free.
  • I'm not really sure that anyone absolutely should care.  It is selfish of me to make this my cause. I have this disease.  I benefit from the research.  It is selfish.  And yet, I do it anyway.  I want a cure so badly.  Part of me really thinks I might get one someday.  I think about what that day would be like.  The day that it ends.  It's an understatement to say it would be the best day of my life.  I don't want to die without seeing that day happen.  It's the invention/improvement I've been hoping for my entire life.  
I think about the past:
  • I hate thinking about the kids.  This is a kid-disease and in a lot of ways it robs these kids of their childhood.  When I hear parents of newly diagnosed kids fighting for a cure, their goal is to have the cure in time for their child to experience some facet of a normal childhood.  Honestly, that goal is naive.  But, it would be my goal if I were a parent.
  • My memory of the day I was diagnosed is very clipped.  I remember it was the day of the Valentine's party at school.  I didn't eat any of my candy because I had this plan to save it and eat it slowly day by day so that I had enough to last all year.  I was starting to walk home from school when my mother intercepted me and reminded me that I had a doctor appointment.  I parted ways with my friends and got into the car.  I don't remember much from the doctor except that my mother was very scared.  She took me the hospital.  On the way she said that the doctor said there was a 99.9% chance I had this disease but that she was sure it was a mistake and I was in the .01% that didn't.  I asked her if I would die if I had the disease and she said not to worry because I didn't.  After labs at the hospital, she decided I did have the disease.  I remember standing in the elevator as we rode down to hospital admissions feeling like I was going to drop through the floor of the elevator.  My mother advised that my father was on his way from work and he would handle things.  That day might be the only day I ever saw my father cry.
  • "It's not your fault," my parents told me, "it's our fault for giving you bad genes."  Except, I wouldn't be here if you had given your child good genes.
  • I hate thinking about the parents of the kids even more than the kids.

This disease is overwhelming and I can't do big things, just little ones.  That's really all any of us can do.  A and I are making our little thing riding in Tour de Cure.  See his tour page here/add another little small thing onto our little small thing.

2 comments :

  1. I absolutely get it, and I just want to reach through my screen and give you a huge hug.

    ReplyDelete