Monday, September 13, 2010

Hey, That's Me!

So apparently it is "Invisible Chronic Illness Awareness Week" and I found this survey, so...here we go :)

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Type 1 Diabetes 
2. I was diagnosed with it in the year: 1989. 
3. But I had symptoms since: less than one week.  I had an appointment with my pediatrician a week or two before with a result of she's a perfectly healthy 3 year old.  
4. The biggest adjustment I’ve had to make is: then: I couldn't have sips of Dad's Coke.
5. Most people assume: that its a mistake since I'm not fat.  
6. The hardest part about mornings are: not sleeping through the alarm, just like someone without a chronic illness
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: my insulin pump.  It gives me life, it gives me freedom. 
9. The hardest part about nights are: waking up low, or trying to fall asleep while I'm low.
10. Each day I take __ pills & vitamins. (No comments, please) I take one mulitvitamin in the morning.  However, I wear an insulin pump and give myself at least 12 boluses per day. 
11. Regarding alternative treatments I: am thankful to have an insulin pump.  (I realize that this is not the intent of this question, but the eternal optimist in me answered this question.)
12. If I had to choose between an invisible illness or visible I would choose: I don't know.  I feel like when I introduce myself to people I always tells them I have diabetes, so I've never embraced the invisible aspect of this illness.  But if I didn't have a choice, I have no idea.  
13. Regarding working and career: what about it?
14. People would be surprised to know: that even after 21 years, I still want a vacation, am still ready to hand over my care to someone else and want to wildly be independent. 
15. The hardest thing to accept about my new reality has been: every moment affects the next. 
16. Something I never thought I could do with my illness that I did was: triathalon
17. The commercials about my illness: sometimes say “with our meter you no longer have to prick your finger for blood”.  What they don’t tell you is that you have to prick your arm instead. 
18. Something I really miss doing since I was diagnosed is: Spending the day with my grammy and best friend? (I was three, I have no idea how to answer this question)
19. It was really hard to have to give up: staying in the pediatric wing of the hospital.  I was a happy, healthy 3 year old who was in the hospital so her parents could learn how to take care of her.  I visited the geriatric unit all the time
20. A new hobby I have taken up since my diagnosis is: The only thing I still do that I did prior is breathe and ski and probably giggle.  
21. If I could have one day of feeling normal again I would: feel naked & wouldn't know what to do. 
22. My illness has taught me: a lot.  That's its okay to get upset and pissed off and that some people are never going to understand, and the person you think won't understand, gets it the best. 
23. Want to know a secret? One thing people say that gets under my skin is: You're not fat
24. But I love it when people: understand it, don't think I'm crazy, allow me to have my moments
25. My favorite motto, scripture, quote that gets me through tough times is: "Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way."
26. When someone is diagnosed I’d like to tell them: I give them a hug. 
27. Something that has surprised me about living with an illness is: that so many people have it worse.
28. The nicest thing someone did for me when I wasn’t feeling well was: be there for me 110%
29. I’m involved with Invisible Illness Week because: it affects more people than you'd think. 
30. The fact that you read this list makes me feel: I felt more profound when I started, but no matter what you take away from it, you take away something. 

Wednesday, September 08, 2010

Such a Pretty Face


"Being in a family is like living inside a tornado.  Sometimes you're spun around, sometimes you're spit outside the tornado all by yourself, and sometimes you're able to join hands with someone inside of it and wait the whole darn thing out."

"I don't know how else to handle it.  I work, I talk to people, I walk, I see you and Polly and Aunt Janet, but there are moments when I'm stark lonely.  Other moments when I think my loneliness will eat me alive.  And sometimes it's vaguely there, hanging around, waiting to go away, maybe on a trip somewhere, and often I'm not lonely at all and feel happy to be alive."

Monday, August 30, 2010

I'll figure out how to be the one left behind

I am sitting here in the JFK airport waiting for a flight still two hours away.  It feels like just yesterday I was taking this picture and yet here we are together going back to Oregon.  My summer has been enriched in a way I didn't know possible.  And while at times waking up at the ass crack of dawn was a pain, it was great to know there was always someone I could talk to.  I am still making plans for the fall and I think, "Rebel will be there" and then I remember that we're gone from Boston and she's not returning with me.  I've done this before, survived a year without OR friends, but I've always been the one that leaves, not the one that gets left.

Sunday, June 20, 2010

"Missing CrimeBusters, which is on the USA Network at 4:30 every day, thanks to the wonders of syndication.  Even though I know all 114 of the episodes by heart, watching them daily is as important to me as taking insulin would be to a diabetic.  My whole day is planned around it, and if I can't have my fix, I get shaky."

"She yelled at me for seventy-nine straight minutes, mostly about how violated she felt by my actions, and then she got even more angry because I couldn't really understand why something I did had upset her.  So she took ten of my CrimeBusters notebooks and ran them through her bill shredder page by page, and suddenly, her point was crystal clear.  I was so furious that, that night, I dumped the bin of shredded paper over her head while she was asleep."

"I have a joke:
Two muffins are in an oven.
One muffin says, "Wow, it's really hot in here."
The other one jumps and says, "Yikes! A talking muffin."

This is funny because
1. Muffins don't talk
2.  I am sane enough to know that.  In spite of what my mother and Oliver and practically every psychiatrist in Vermont seem to think, I have never struck up a conversation with a muffin in my entire life.
3.  That would just be plain corny.
4. You got that joke, too, right?

Thursday, March 18, 2010

Things I've Learned This Week

  • Doctors might go to school forever, but nurses keep hospitals going
  • Hospital gowns don't fit
  • A man definitely designed hospital gowns since there was a hole right over the chest
  • Nurses are the best advocates out there
  • having a team of doctors stand around a hospital bed is really intimidating
  • More nurses need to be administrators in hospitals, or at least planners.  Things would get done a lot more efficiently
  • Trying to get all the information out of a patient as you wake them up is not the greatest plan
  • having a support system makes a hospital stay that much easier
  • It's the little things in life that matter

Monday, March 08, 2010

I just got back from Snowbird, UT, working.  I laughed in my head because technically I could have said "I'm here on business."  Clearly, I never did, but that's alright.  This was a last minute trip, and I enjoyed every minute of it.  The trip was a once in a lifetime opportunity, and I feel like the luckiest person ever.  I got to ski every morning, and then I took care of Julia during nap time.  I have the greatest benefits in the world, and want to plan my own trip there.  

Back from heaven:

Sunday, February 14, 2010

A lot of things different

A lot of things have changed since the last time I wrote.  I started a new job and moved to a new state.  Both have been very exciting, and stressful too.

I started my job as a nanny, and I absolutely love it.  I take care of a 7 year old boy and a 3.5 year old girl and they are some of the greatest kids out there today.  Some days are pretty tough, but isn't it that way for everyone?  My days are filled with jokes and driving, dancing and music, woodworking and gymnastics, and lots of playdates in between.



I just moved; back in with my roommate from college and it is great.  We are a mile and a half from my work, which certainly makes my life easy, and we got the steal of the year for the apartment.  We still have a lot of hanging of things up to do, but besides that we are loving it.