Another day at Joslin

Last week I had an appointment at Joslin.  These appointments are so much less stressful when I schedule them during my vacation, even though I don't particularly enjoy hanging out at Joslin during my vacation.  I went in to have the nurse test my BG and get more to test my A1C.  I used the disposable lancet on my thumb so that I could not only have enough blood for the BG test, but also to have enough to drop in the vial.  She wanted to scrape it off my thumb, but I still remember the days of needing to drop my blood onto the test strip, so I was all set.  The nurse was amazed by this.

At the moment, I don't have an endo, but it's something that I've been talking about.  It's something that I find comforting.  Saying "Dr. ________ is my endo.  If something is wrong please call Dr. _______."  But right now I have a Nurse Practitioner who I love.  I go in and sit down with her, and we discuss if I've had any more crazy spikes.  I tell her about how I didn't bottom out, so I consider that a success even though I don't like the ^400 part of it.  We talk about my A1C, which is 8.1.  At my last appointment in November, my A1C was 8.2.  I was hoping for a bigger drop, but I'll take any drop.  And so will my NP.  Our focus now is getting rid of the crazy spikes, and then hopefully the A1C can level out and come down.

When I went to my PCP about six months ago, I had an awful lab experience.  I know that getting these tests are an important, preventative measure to take, but I hate them so much.  When I was a kid, I was that screaming child you can hear behind the curtain.  There was the time when I got "stabbed" 5 times before taking my blood was successful.  And then we met Claire.  She was this little old French lady, and she knew what she was doing.  The stress was still there for me, but less than with the other phlebotomists.  (And I totally spelled that right on the first try!)  I would ask for her every time I went, and I got her too.  And then the worst diabetes day of my life (at that point) happened, "Claire doesn't work here anymore."  She retired.  There has never been another Claire for me, but she definitely had a positive impact on my life.  Last week was the first time I got blood taken at Joslin, and this phlebotomist was really nice.  I told her how people always have a difficult time taking my blood, and she was just very calm and relaxing about it.  She talked to me the whole time and before I knew it, I was done.  I don't know when I'll find the results, but I think I'll request that Joslin take my labs from now on. (Is this possible?)

"Standing your ground is progress when you're battling a hurricane." David Weinbaum

Vacation

I am on real-life, work vacation this week, so I'm going to take a blog vacation too.  

Enjoy the view while I'm gone.

Stage of Life

I've written over at Stage of Life again.  This time it's all about friendship: the differences, the similarities, and everything in between.  Head on over and enjoy :)

Guest Post: A Younger View

Today's post is from my cousin Karolyn.  The best day of my life was her baptism because she became my god-sister.  This was a big deal to a seven year-old only child.  When we were younger, I couldn't understand her.  I mean, how could you not love to ski?  But then all of a sudden she loved it.  And I don't know if that is when we became close, or if it was before then, but all I know is that now, we're close.  Now, I don't know what I would do without her. 

As my beautiful sister, Kate, said, diabetes wasn't a sickness in our family. All the cousins grew up with it and I was so little and hating skiing that I appreciated the 10 o'clock breaks, the lunch breaks, and if they could convince me to get back out there, the afternoon breaks where Briley had to test and I could happily munch on a bread bowl of clam chowder without the clams or cinnamon buns. Honestly, my understanding was that every family took breaks like that or someone in the family did what Briley did on those breaks. My mom, grandparents, aunts and uncles never let on that what Briley was dealing with was a sickness, and you'd never know it by looking at her. She, Kate, Megan, Michael and I would ski and swim like there was never a problem. As I've grown up I've obviously realized the severity of diabetes and how much it affects Briley's life, but she really never seems to let it get her down. Her accomplishments and array of activities absolutely amaze me, from her triathlons to her ski racing to synchronized swimming to nannying. She really is one of my greatest inspirations because despite having diabetes, she does so many amazing things and her family couldn't be more proud of her. I find myself reading her blog and thinking, "Damn, she's kicking ass these days," despite how much she's dealing with. She's my cousin, my God sister, and my friend and I love her to pieces. Thanks for the breaks from skiing when I was little, the love, friendship, and support as I've grown older, and for being an inspiration for all of us; it means more than you may realize.

Toolkit

When I walked in the door the other night, I had a package from my insurance company.  (Secretly, I wanted them to have read my mind and have it be a Dexcom.)  But I digress.  

My insurance packet

This is my new diabetes toolkit.  I have kept it in the bag I bring to work to read during naptime (even though that's usually when I catch up on blogs, write my own blog, be a twitter addict all while cleaning up after the kids and potentially cooking their dinner).  I didn't look at it until yesterday.  The only thing I noticed before that was that there was a pedometer.  I thought this was kind of cool.  I walk a lot at work, so I was thinking of getting one, but there are more important things in life for me to spend my money on.  (I digress, again.)  Today as I was waiting to pick up Girl Genius, I started reading the letter that was included in the folder.  I read this sentence and I started laughing.  I grabbed my phone and tweeted it (clearly) and then I tried to read the rest of the paper.  Now I know that I'm still a "new" insurance person; both understanding and a member, but this still makes me laugh.  I got some pretty great responses and they all made me laugh.  But beyond that first sentence, everything I've seen is pretty sweet.  I took about 6,000 steps yesterday (which included walking the wrong way to the Frog Pond with Girl Genius).  I got a new log book (with not nearly enough space for me to record all my BGs for every day), but it has different tid-bits of information for every week.  There is information on keeping my feet healthy, which includes a magnet so you can put it in a place where it won't get lost.  And last, but not least the Healthwise Handbook.  

How long do you think it's going to take me to read this?

Coffee Meetup

Last week I had the pleasure of taking the DOC outside of the screen of my computer.  I got to meet Allison for coffee.  It was just the two of us, but it was a great first DOC meetup for me.  We talked about sensitivity, scar tissue, diabetes & heart problems (and just heart disease in general), what larger DOC meetups are like, and then "real life" things, like apartments & jobs.  It was quick, since it was while Girl Genius was in school.  But it felt great.  To meet someone new, and to meet someone that I already consider I know.  Thank you Allison :)

Thank you

My post yesterday had nothing to do with Valentine's Day.  I didn't know how the blog world would embrace the holiday, so I didn't.  There was everything from I Love You's to shout-outs to friends to the all amazing plea to a pancreas.

I spent the day focusing on holding a small hand.  We walked around town talking about the importance of Valentine's Day because it's a day to tell those important to you that they are important.  We talked about her friends, and family, and stuffed animals.  We talked about the things we love, like skiing, and why we love everything in our life.  We talked about ways to be nice to people.  And even when I told her she didn't need to hold my hand anymore, she still reached up and held it (and then proceeded to tickle it).  

I realized that I didn't do exactly what I was suggesting she do.  I've made my amends with my real life people, but I haven't made those amends with the DOC. When I read other blogs, and I talk to you on twitter, it's a space for me to open up, to deal with the craziness that is diabetes.  To help survive.  So yesterday, of all days, I should've said thank you.  But since I missed that, I will say it today.  Thank you.  

Diabetes Success

When my week started like this, and ended the same way, it was time to write down, print & fax my numbers over to Joslin.  That was on a Friday, and I wasn't able to talk to my nurse until Wednesday or Thursday.  She had me change my overnight basal, my sensitivity factor and some advice.  She suggested that I seem to be extra sensitive to insulin when my blood sugar is super high.  Over 400 is how I'm interpreting super high for right now.  So she suggested that if I get that high again, to not take a full bolus. So on Friday when I was 485, I plugged it into my pump and before I sent it on it's way, I decreased it by 10 percent.  I was a little skeptical about this, but, it worked!  When I got home from work, I felt low and was hanging out between 65-75, so I had two juice boxes.  But that is the lowest I ever went!  There were no BGs in the thirties.  There was no bottoming out.  There was no scary low.  It just was a baby low, and my BG even leveled out enough to go out for a beer.  Friday's correction was a diabetes success!

Guest Post: D-Day

Today's post is from my mother.  I'm not sure how to introduce the woman who has been there for me, for, forever.  She is the one that called the doctor day after day; that figured out my calories; that figured out where the best diabetes place in the school was for me; that made diabetes not be a big deal.  She did it all, without a constant support group like the DOC.  Here is her story of my D-Day.  

Well, since you’ve had diabetes over 20 years, I could write a book.  But for this entry I will start at the beginning.  It was Fourth of July week-end and you were very lethargic and cranky.  Initially daddy and I thought we needed to be stricter with you, as you were an only child, we thought all the whining was because you were, well, a spoiled three year old.  I brought you to the doctor’s office and was told to bring you immediately to the hospital. There you stayed for 5 days.  The long stay was so that Dad and I could learn how to take care of you.  As there is no history of diabetes in either of our families this was all new to us.  Once you received some insulin, you bounced back to your usual fun loving self.  By the next day when Grammy and Grampa Dea came to visit, you were riding a tricycle around the corridors of Elliot Hospital, smiling and waving.  That insulin was like a happy pill for you. 

Every night either Daddy or I stayed in the room with you.  Of course when it was me, your hair was pulled back in braids and you wore a cute little outfit.  When daddy stayed, there you sat for breakfast with his baseball hat on, hair sticking out all over the place.  Your outfit would be such a surprise.  I guess he thought it better to pick a shirt, shorts, socks etc from different piles, not the ones that matched.  I think you two conspired against me just to see my reaction.

I remember several key things from that hospital stay.  Daddy and I reacted the same way to your diagnosis.  We both wanted to learn everything we needed to know to take care of you.  The insulin ratios, how to use a needle, mix regular and NPH insulins, how to rotate your sites, the diet of starches, vegetables, dairy, meat, vegetables, etc.  No carbohydrate counting back then.  14 goldfish equaled 1 starch.  A meat serving is the size of my palm.  But most importantly your pediatrician told us to not feel sorry for you.  He told us not to dwell on how or why you had diabetes, but to move forward.  He told us you would be able to do anything with your life as long as you respected diabetes and took care of yourself.  In our hearts, daddy and I wish you did not have diabetes, but if not you, then who?   No one of course, so therefore, we have lived with diabetes too.  We look at your diagnosis as we were driving on one road, and had to take a right. 

While you were in the hospital, Uncle Brian and Uncle Dan, came over to help daddy clean the house and mow the lawn.  While they worked around the house, daddy took stock of our kitchen cabinets and went to the grocery store.  What was I thinking?!!!!   O how he loves those little cans of peas!  Our entire extended family stepped up and helped us in so many ways.  Your grandparents, aunts, uncles, and friends.  They all visited and sent you so many balloons that you were handing them out to other children in the hospital.

Diabetes is just one part of who you are.  Everybody has something, and diabetes is yours.  Mine is that I have a child with diabetes.  And everyday I am thankful for that little girl with blue eyes and thick brown hair who also has to test her blood and take insulin every day.  It has been my pleasure to care for you since that day so long ago.

DSMA February Blog Carnival, Part Two

The most awesome thing I've done in spite of diabetes is ...
In January 2009, I was on the phone with Rebel when she told me that she was going to try to qualify for the Global Heroes race.  "You should do it too."  And I agreed.  The deadline for the application was April 1.  I didn't have much time to start training (it started the next day).  I looked up a training log online and started my work (I would link it for you, but I don't remember which one it was.)  I liked this training log because it wasn't about how fast you were going, just that you were doing it.  It was a 7 day per week program, but included a day of rest, and a day of stretching.  It also included days of other exercise, based on how long you did it.  To complete these days, I would head down to cross-country ski or to the hotel between where I was living and school and do laps at the pool.  I was dedicated.  And even though I'm not a runner, I did it.  The log scheduled ten weeks, and I had 9.5 between the day I decided to do it and my race, which was 10.5 miles.  On one of those weeks, I got sick.  It wasn't the flu, but it knocked me out, that's for sure.  I can remember driving to school early, running a 5 mile loop, and then sitting in class for an hour (extra fidgety since I hadn't showered yet - I had changed though).  Still though, there was a lot of anxiety.  But c'mon, who doesn't want the chance to win a $1000 to give to a diabetes group in your name?  I was determined to do this.  I went to my parents house a few weeks before the race and ran an 8 mile loop.  My mother drove by at one point, and I only walked when I was sucking down a juice box (or tabs or something, I don't remember the specifics).  But I finally felt empowered that I could run this race.  My father was nervous and didn't think I could do it; not because I couldn't, but because we don't train the same way.  And if he was the one that was training, he couldn't have done it the way I did.  I didn't care how long it took, all I needed to do was finish, and then tell the Global Heroes how medical technology helped me, and why I'm an awesome person.  (Not in so many words, but basically).  My dad, his friend & I drove down to Connecticut and I ran.  And ran and ran and ran.  And if you're thinking that 8th mile must've been hard.  You're wrong.  The third mile was the hardest.  And this race had so many hills it wasn't even funny.  I knew that this was something that I wouldn't be doing very often in my life, so I gave my father my camera to document and prove that I did it.

Finish Line

So that backpack.  The camelbak portion was filled with half gatorade and half water.  I was on a 30% basal (if not lower) for 3-4 hours.  I also had my meter, a bottle of tabs, juice boxes, peanut butter crackers, and maybe plain water?  All I know is that beyond anything I didn't want to stop and open it.  There were two women in front of me, and they nicknamed me pinky.  And they told my father: "Pinky never stops running, how does she do it?"  And I didn't need to stop and open my backpack.  The best thing about this day is that I don't remember what my diabetes did that day.

I didn't do this in spite of diabetes.  I did this because of diabetes and for diabetes.  In the process I lost 30 pounds (they're all back), I gained confidence & I realized that even though it seemed crazy, I did it! I didn't win the chance to run in Twin Cities, and I believe it's because I don't have a great ability to write about how awesome I am.  I've never been one to think "I deserve ____ because ____."   But I did this for the chance to help others, and I'm hoping to run a race like this again.

This post is my February entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/introducing-the-dsma-blog-carnival/

DSMA February Blog Carnival, Part One

National Zoo in D.C. 6 years old

The most awesome thing I've done in spite of diabetes is ...
go to preschool
learn to play tennis
go skiing
go to Kindergarten
ballet, jazz, tap (x 10 years)
go to elementary school
be a Brownie
start T-ball
play softball (x 10 years)
go camping
start playing the piano
go to Diabetes camp
go to middle school
start playing the clarinet
have a solo in the Christmas concert
start running cross-country
field trip to Disney without Mom as a chaperone (x2)
take swing-dancing lessons
Washington D.C. field trip
start high school
run cross-country (x4 years)
ski team (x4 years)
tennis team (x4 years)
family ski trip to Colorado
winter track (x1 year)
Tour de Cure
get the pump (03.16.02)
get my driver's license
C.I.T. at Camp Carefree
Chris Evert Tennis Academy
NH Scholastic Athlete Award
graduate high school
start college at Salve Regina University
take classes at UNH-Manchester
re-start college at Plymouth State University
tennis team (x4 years)
work at St. Paul's Children's Learning Center
counselor at Camp Carefree
work with kindergarteners doing Summer Learning
work as a summer nanny
work 3 jobs one summer
Spring Break in Puerto Rico
work at Waterville Valley Ski Area Childcare
work taking care of ski instructors' children
work in Oregon for two summers
run 10.5 mile race
Child Life Intern
graduate college
apply for a crazy amount of jobs
volunteer coach synchronized swimming
start synchronized swimming
working as a full-time nanny
move to Boston in a big girl apartment!
travel to Utah for work (and ski, and see one of my best childhood friends)
celebrate 21 years at Pops! Goes the Fourth (I've been planning this since my 16th D-Day)
take a vacation to Oregon
...to be continued...

(How can I pick just one thing when I've had diabetes for 21.5 years, and been alive for 25 years?)

"You got yourself this far-you just got to keep going." Dan Ward

This post is my February entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2011/introducing-the-dsma-blog-carnival/

Plummet on the Bike

I went back to the gym last week.  Finally.  And since it's been a while, I decided to ease back into it and use the bike.  I got on a fancy bike with a screen that simulates a road, and it was really cool.  After about 15 minutes, I felt a little weird, but decided to keep going until my loop was done.  After 4 miles, I felt really weird.  And my loop was done, so I cleaned off the machine and went for my meter in the locker room.  That trusty little pink machine blinked a nice bright 34 mg/dL back at me.  I opened my little gluco-shot and poured it down.  It doesn't feel like it works, but I don't know if it does or not.  Since I was 574 before going in, it was all I had with me, and it was my last strip.  I don't like to be in the shower while I'm low, so I got dressed and went out to my car.  I was in the parking garage texting people: I'm in my car stabbing juice boxes with pens and eating Valentines hearts.  The juice box in there didn't have a straw so stabbing it was my only option.  Since I didn't have another test strip, I just kept digging in to my bag of Valentine's hearts.  I didn't feel low at 34, so I was nervous to drive.  I think I ate those hearts for about 20 minutes when I started my car and drove down the road to Target for some juice.  Do you know that at 8PM at night, everyone either wants to be awake forever (caffeine) or they think they're overweight (diet).  All I wanted was a single bottle of juice.  It was not to be found.  Instead I ended up with gummy peaches and gatorade.  Can you guess which I chose to consume  before driving again?  I'll give you a hint: the gatorade is still in my car.  I get back to my apartment (and get a parking space!!), and I get my new bottle of strips and I'm 167.  And all is right with the world...

Or so I thought until I wanted to go to bed and I was over 400.  I stayed up another hour, was back in the 300s, and THEN I went to bed.

My Take on CWD

During bath time at work last Thursday, this song started playing and it made me think of the PoCWD/PWD "discussion" on CWD.  I was in a giggly mood, so I was laughing as I read it.  So here is my take:

Having diabetes makes us different.  It's not a bad different, it's just different.  And not everyone understands.  But there are people out there who do understand, and it makes all the difference.  As many people have said, diabetes is what separates us.  And whether you're the person with diabetes, or the caregiver, we need to stand together.  No matter what, it sucks.  As a former kid with diabetes, I appreciate the natural advocates we get.  And as a former kid with diabetes, I want people to think about what it's like being an adult.  It's harder, but on the same hand I would be having an even harder time if the care was still the same from when I was a kid.  Fight for a cure.  Fight for betterment.  Fight for prevention.  But fight together.

"Tonight when you lay your head on your pillow, forget how far you still have to go.  Look instead at how far you've already come." Bob Moawad

Guest Post: Candy to You

Today's post is from my cousin Kate.  Cousin isn't the right term either, and neither is our technical relation: second cousins.  Being an only child, Kate (and her sister Karolyn) are the closest people I have to sisters.  We spent summers together at their pool and winters together on the mountain.  We both started skiing at three years old, but we couldn't be more different.  She loved horses and was scared of dogs.  I love dogs and was scared of horses.  I went to school for Early Childhood Education and she's going to school for Business, but that's probably why our mother's wish that a little of us would rub off on each other. 

I was shopping at Wal-Mart the other day and wandered into the pharmacy area.  I looked over and saw Glucose Tabs.  Oh, the memories.  Growing up, I guess I never realized that someone with diabetes was sick.  No one in our family ever made it seem that way.  Most of my experience with having a family member with diabetes (my awesome big cousin) was during ski season.  Since Briley had to test, we would stop for one morning break, a lunch, and an afternoon break throughout the day.  Since we had been skiing since we were about 3 years old, it became a routine.  It was never a break for Briley, it was just what we did (and most of the time I think it became more of a break for me and my clam chowder with no clams).  I don't think I ever remember looking at her any different than anyone in the family, which brings me back to Glucose Tabs.  Now that I am older, I know that they are used in the event that a diabetic's sugar is low (under 100 somewhere).  Back then, it was Briley getting candy.  I knew that it was because she needed it, but from time to time she would sneak me one  so that I didn't feel left out.  Oh yes, that was us being rebellious ten & twelve year olds.  I guess my point is that everything became sort of normal.  I used to help her get all of her supplies out when she was ready to test.  We would hope that it would be around 100 and even take guesses to see who could get closest.  When it was time for her insulin, I would watch patiently so that we could go on our merry way and find something fun to do. As I got older, I even asked questions about how much she needed and why.  It was never something that bothered me though.  She was always just my big cousin.  I know that to Briley, it is obviously a large part of her life, but I think that our family made it as normal as we could, or at least we tried.  Now Briley has a pump, but there are still morning breaks, lunches, and afternoon breaks even though they are  no longer necessary.  When I see Glucose Tabs in Wal-Mart, I do not think of my sick older cousin, but instead the sweet taste that I got as a treat when our parents weren't looking.  When Briley asked me to write something for her blog, I think I had so much trouble coming up with something because it was never something that interfered with our relationship or the time we spent together.  She is not my older cousin with diabetes, and I rarely would ever describe her as such.  She is just my cousin, and I love her, diabetes or not.

Did I mention I started crying when I read this?

Swimming & DSMA

In case 

you live

under a rock,

there has been

a lot of snow

this winter

and I love it.

But the time has come where I am sick of it interrupting my life.  I love the snow, I love how the kids like to go outside and lay in it and make beds, I love skiing, I want to go cross-country skiing this weekend, and I'm just a general lover of the snow.  I am also a lover of synchronized swimming every other Wednesday.  And while it doesn't always lower my BG, I whole-heartedly believe that swimming on Wednesdays is a great physical benefit for my diabetes and my body.  I also believe that it is good for my overall health getting to see one of my best friends.  All these storms this year seem to have come on Wednesdays.  I wouldn't know this, except that I've had to skip swimming since the beginning of January.  I feel like by the time I get to go again I'm going to sink to the bottom of the pool (I realize this won't happen, but geez it's been a long time!)  I see the forecasts and I get sad.  My bags have been packed in my car and it's sad taking the unused bag back out.  But then I remember that it's Wednesday and I realize that I'll get to participate in the DSMA chat.  And while dsma might not do anything for the physical aspect of my diabetes, I know that it helps my psychological aspect of diabetes.  There's something about talking with other people with diabetes that really helps me.  And it's something that I do look forward to.  The dsma community is huge; so much bigger than my swimming community.  I love being a part of it, but I miss my swimming community.  

Hope

I've been going through strips like a crazy person lately, and I went to re-stock.  I also needed to re-stock on tabs and I decided to get some of the little drinky-glucose things too.  Then I wait to talk to the pharmacist to get my test strips.

"One Touch Ultra please"
"All we have is 100"
"Okay"
"Don't you have insurance?"
"Yea, but it only covers strips for a meter that's much less accurate, and I've been having trouble lately, so I'm not going to risk anything"
"Wow, I'm sorry"

It doesn't make it any easier.  It doesn't make it any better.  Shelling out $140 for strips & tabs is never going to be "easy."  But having someone behind the counter say I'm sorry, well, it gives me hope.  Hope that there are enough people out there hearing it that it could change.  With enough sincerity, the world can be better.

Stage of Life

I've finally written my first blog post over at Stage of Life!  It's taken me a while.  I find it much harder to write about life, than I do about diabetes.  But what could be easier to write about this month than snow?  So here is some information about how I survived one storm.  

Glucagon

I've never needed glucagon.  I take pride in this.  I probably could have used it a few times in my life (when my forehead slammed on the desk in third grade, when I blacked out with my friends in high school - I didn't drink in high school, so this was the effect of a low), but I've never received it.  And yesterday my friend started talking to me about how she has never used it either, but how she's had some serious lows before.  Talking to my friend, remembering Jacquie's post, and reading Sarah's post, we feel like we are ticking time bombs.  I've gone 21 years without it.  I know where it is in my apartment, but would I be able to tell someone where it is if I needed it?  Would I be here, able to access it?  What would be the reason why I needed it?  How would I handle it?  What would happen after?  This weekend was scary.  It has me thinking about the reality of glucagon more seriously.  I am not prepared for this, but are we ever?