Good Diabetes Things from the course of the month

I'm going to start with my favorite of my Six.  This day made me feel so good, and so empowered to have this disease.  I felt normal; I felt that there were things I never put into words, but when others did, I thought, "yes!"  So here is my favorite of mine:
"I don't make a big deal about my diabetes.  I fight tooth and nail every day not to because I want to be treated like a normal person.  I don't want people telling me that I can only eat certain things, or that I can't participate in activities, or to use it as an excuse in a way that I am acting.  But it is a big deal, because it can affect everything.  The one day every year that I make a big deal about it is July 4.  And while I don't want people making a big deal about it every day, I want you to make a HUGE deal about it July 4.  Celebrating every anniversary has always been a big deal in my family because every year it is an accomplishment.  If it has been a bad year, then it means we survived and we're on to the next one.  If it was a good year, it is time to celebrate and give ourselves a pat on the back.  And hope for the same things in the coming year.  Every year is big; because every day is big."  


I was sitting in the waiting area of Girl Genius's gymnastics when I heard this conversation between a mother and daughter.  I was alert because I heard "my" pump beep, but nothing was showing up.  
"Well this is my sensor."
"How come you have diabetes?"
"I don't know.  Some people do and some people don't.  That's just the way it is."




This was a bunch of people's facebook statuses:

"Its Diabetes Awareness Month. It isn't pink or sexy, it doesn't involve boobs, football players or cute t-shirts. Its about being grateful when you or your loved one wakes up in the morning. Its about 3am blood sugar checks, needles, low blood sugars and the smell of insulin on your hands after changing a pump site, or filling a syringe. Thats a Diabetics LIFE. Repost if you love or loved someone with diabetes."

This was a facebook post on my page from Rebel (and not really good, but definitely funny):
voice mail from student health: "Hi melissa I wanted to let you know that the results of your blood test (from electrolyes and iron for running) have come back and it's urgent that you call me because your blood glucose was 200 and could be a sign of type 1 diabetes." please call me back !!! ... left 2 messages in a row.

I called and first thing i said was I know I have diabetes... and its in my chart. 0.o

This was a text message conversation:

Me: I don't know if you know this, but I have diabetes and I had a really bad low in the middle of the night and it made me a zombie this morning, so I need to get everything together tonight and then I'll go up in the morning.

new person: yea, I saw that Briley, I def know what you mean I have some friends who diabetics and I know what they go through.  I have some family members who are diabetics too so I understand completely!  thats ok you will still have fun tonight either way

Me: I'm glad you understand

NP: oh god yea i def understand for sure so never feel like you can't talk about it to me im all open to it and i def know how you feel!  i was actually going to tell you that at some point and be like never be shy to tell me that if u want to talk about it, im wicked open like that!

Me: That makes me feel a lot better, because I've definitely gotten some jerk comments before

NP: seriously?  well you know what then whoever said those comment to you are complete &*#$*&$ and have no idea!  friggen jerks out there i'll tell ya

Me: Yea...I feel like there is so much more I could say about it, but I'm going to keep it concise with a plain thank you.

NP: I def understand, believe me a thankyou is fine but never feel like you can't say more about it to me, i completely understand know where your coming from so no worries!


I was at an open house for a friend and her brothers because they were all in town at the same time.  It was like childhood all over again, except that no one recognized me.
Woman: And how is your diabetes doing?
Me: Oh, it's good (At this point I was a little irritated about the mention of it.)
Woman: You know, I always admired you for having diabetes.  I know you make it look easy, but you never complained and I'm sure it's much harder than we think and you just need to know that I've admired you from the time you were diagnosed.
Me: Thank you.  (What else can you say to a woman who you don't know very well, but you just want to jump up and hug?!)

Hypoglycemic Unawareness

Lately I've apparently been suffering from hypoglycemic unawareness.  When I was a kid, I definitely suffered from it, and there came a time when I didn't anymore.  It wasn't apparent, but all of a sudden there was a realization that I would feel low, I would test, be low, and have the chance to take care of it.  I wouldn't be low when I tested just because it was time to test. Previous to last week, I would feel low, test, and be somewhere in the 60's.  And as much as I don't like being low, 60's certainly isn't a bad low.  But last week, I would test because it was time to test, or I'd start to feel a little low, and I'd be in the 40's.  One night I woke up at 4:30 AM, was 41, grabbed two juice boxes and sucked them down, then rolled back over and went back to sleep.  But really?  41?!  That's a scary number.  (And I don't generally consider middle of the night hypoglycemia unawareness.)  And last Wednesday while I was trying to get Boy & Girl Genius packed and ready for the airport, I was in the 40's again.  I got out a glass, got some orange juice and Girl Genius talked my ear off.  She wants to know why I don't have to cut it with water.  And then in the middle of drinking it, I get a brain freeze.  And I semi-snap.  "Girl Genius, I will pay attention to you, but first I need to finish my juice."  


But where do I go from here?  As a child, this was the only thing that I had to worry about.  I had my mother to worry about everything else.  I needed to work on feeling low, and then all of a sudden it happened.  But how do I do it now?  I already know what it feels like.  I'm alert to how my body feels now.  I've been the best diabetic I've ever been since I started this blog.  How do I start feeling low again?  I test nearly 15 times per day, and yet I'm still missing these lows.  Is there anyone else who has experienced this before?  How do I go back to catching them when I'm barely low?  

So Much to be Thankful For

I woke up far too early, but I was excited to see my cousins.  My parents and I bundled up and headed to the pub to meet the rest of the family for breakfast.  I got to see my grandparents, three uncles, an aunt and four cousins that I wouldn't have been able to see otherwise.  (And there's also something to be said for Bailey's at 8AM.)  From there, we went to the Turkey Day football game.  It was pretty cold & windy, but we got to see more good friends and spend more time with my grandfather.  At halftime, Dad & I left because Mom's side of the family was at our house and it was time to start the festivities at home.  We laughed, we watched the Pats, we enjoyed all of our beverages and appetizers, and we set the table so we could watch the game during dinner.  (I drank apple pie martinis all afternoon, and every hour I bolused for 10g over the whole hour, and let me tell you, it worked!) 

Grammy made her potatoes, and mom followed her list, and we sat down to eat right as halftime ended.  There was delicious turkey, green beans, stuffing, rolls, twice baked potatoes, cranberry sauce, squash, gravy and I'm sure I'm missing some things.  We ate and those boys on the TV kept getting better and better, so we stayed and finished watching the game in there.  When the game was over, we cleaned up, and moved back in front of the wood stove.  After a while, we got out some pies, and my mom, aunt, and grandmother started singing.  The rest of us waited...Mom & my aunt took my grandmother back home, and the rest of us stayed and watched a movie.  Everyone else fell asleep at one point or another, but I managed to stay awake the whole day.  Around 8:00, we got out all the food again and had round two.  And from there we watched more football and movies, and we all went upstairs quite early to sleep.  And we woke up this morning and braved the roads to get to Tilton for Black Friday.  


I had a fabulous day with my family, with lots of boluses, lots of testing, and lots of "wow, I'm doing awesome!" today.  I hope that everyone else feels just as wonderful as I do today.  

Happy Thanksgiving

I am thankful for my family.  I know that this sounds generic, but especially this year.  It has been an all over the place year, and it starts with my parents.  When I started my first full time job, they were both there the morning I left.  When I moved in, I didn't have to do much because they were there.  When I was in the hospital, they were both there every day.   When my grandfather passed away, well, they were there to help me then too, even though mom was dealing with her own grief too.  On my birthday, which was probably one of the toughest days to get through for me, they made it a good day.  These are the big things, but every single day, they are there to support me.  I am thankful for the rest of my family too.  Where to start?  Well, there's the grandparents, the aunts, the uncles, the cousins, the cousins once removed, the second cousins and the family friends who might as well be family.  I got to enjoy seven full months of this year with my grandfather this year.  I got to tell him about Boy & Girl Genius, and their funny stories.  I may be devastated to have lost my first family member this year, but I got 24 years with four grandparents. That's pretty damn sweet!  I am thankful to all my aunts, being there for support and my uncles to bring laughs.  Not that the uncles wouldn't support me, it's just that the aunts are better at it.  I got more support this year from them, through private emails and cards on the hard days, and congratulations on the good days.  My cousins are there for support, like most people have siblings.  I love them for all their quirks, support, laughs and uniqueness.  I don't know where I'd be today if it weren't for them (even though most of them are younger than me).  And family friends, well, they've been there since the beginning too.  Back when I was tired all the time from working and commuting way too far, they were there to love me and bring me back to life for Monday morning.  And now that I am living super close to work and loving every minute of that, I still make the time for them, and them for me, and always leave with a smile on my face. 

I am thankful for my friends.  They are my backbone, my support, my shoulder to cry on, my group to laugh with, they are my everything.   When I didn't want to commute from NH to Boston every day, I lived with my roommate and her parents.  I have reconnected with old friends this year, which I couldn't be more grateful for.  I have made new friends as well, and who can't help but love new friends!  When it seemed life was being filled with death, they were there to help me live my life to the fullest.  I am thankful that I have friends on both sides of the country, and that I was able to see all of them this year.  I  didn't think that would be possible, and it's the best gift I could've given myself.  When life seems to knock me down, these are the people who always know how to pick me back up.  

I am thankful for my job.  Granted there are days when my bed is comfortable and I don't actually want to get up, but I look forward to seeing Boy & Girl Genius every day.  I know that every day there will be someone to hold my hand, give me a hug and making me laugh.  This week I was astonished when Boy Genius was talking about the differences between carbon monoxide and carbon dioxide (he's seven).  Other subjects we have talked about include manual transmissions, weather patterns, and building a remote control, battery operated car.  And then I get to be Tinkerbell hugging stuffed animals with Girl Genius.  Sure, there are days when I walk through the door and look at my roommate and say "give me a drink!"  But they are few and far between.  Mom & Dad Genius are also very supportive.  When I was in the hospital, they almost brought the kids to visit me, but Boy Genius was sick too.  They brought me to Utah, where I got to ski incredible powder, and that helped me reconnect with an old friend who lives there.  When my grandfather passed away, they found places for the kids to go so I didn't need to be at work.  They are some of the nicest people I've ever met.  I thank God every day for the opportunity to work with this family.  

I hope everyone has a fabulous holiday, filled with people you love, food too bountiful, lots of laughs, and everything else you want.  HAPPY THANKSGIVING!

Thanksgiving

Tomorrow is Thanksgiving, and tomorrow you will get to see what I'm thankful for.  Now you get to hear about my holiday life as a diabetic. 


**Cue in stories, because I don't actually remember this.**  
I was four years old, and besides my birthday, I had never celebrated a holiday with diabetes.  (And by I, I actually mean we.)  On major holidays, my parents and I weren't the only ones with diabetes, the grandparents and cousins all had it too.  And back then, there was a strict diet, with a strict time table as well.  For those of you who never had the caloric diet, please don't feel bad.  It made me stronger and healthier and I still try to follow the basics of it.  That Thanksgiving was with my father's side of the family, and my mother and grandmother had figured out the time, just for me.  I am an only child, and even though there were a lot less cousins in 1989, family affairs were still loud and didn't start until all were present.  But that needed to change.  And everyone was told this.  The time rolled around when I needed to eat, and the chronically late uncle still wasn't there. So the rest of sat down and ate.  We said grace, we ate our turkey, stuffing and other good foods and we got loud.  And then Uncle Dan walked in the door.  And although I don't remember, I can picture "Mom!!" And her reply was something along the lines of "We told you it was different this year!  You should've listened."  And by no means am I dissing my uncle, but like I said, he is chronically late.  (His daughter is now the same way, so when I want to see her, I tell her to show up a half hour earlier than I actually want to see her.)
It's my original support group.  They were there at the beginning, and they'll be there forever. 


And how will this affect me tomorrow?  For thirteen years, I couldn't overeat on Thanksgiving.  But then I would see everyone else, unable to move, unbuttoning their pants and I thought, "you did this, why?"  Even after nine Thanksgivings where I can eat whatever I want.  My body doesn't allow overeating; at the end of the day, I'll feel good.  Tomorrow, I'll enjoy apple pie martinis with my mother, and we'll sit by the wood stove reminiscing about past Thanksgivings, I'll enjoy the turkey, stuffing, pies, and all the other delicious food.  I will get to eat it all, because I'll eat a lunch and a dinner, and I will feel fabulous.  It may not be the way most people experience this holiday, but it is the way me and my diabetes have celebrated it for 21 years.  Why change now?

Diabetes Feelings that aren't Diabetes

I was driving home from work yesterday, and I was on the phone with my mother complaining about the way my body felt.  "Mom, I feel low, but I'm 247!  I feel like I should be able to fix this feeling with juice, but juice will just make it worse!  UGH!"  You get the idea. "You know, Briley, that your body will feel ways that aren't related to diabetes.  You are a person just like the rest of us."


OK Mom, you got me.  But I have this feeling, that I've been taught to fix for 21 years.  This weak feeling in my body?  I drink juice and it goes away.  I'm thirsty?  I drink water, take a shot and it goes away.  Other symptoms for me include glassy eyes (clearly I can't notice this symptom), runny nose, and shaky.  But now I feel this way, and I'm prepared to make it go away, and it's not diabetes related.  Now what do I do?  I am not prepared for this.  I've been trained to focus on the way my body feels as it relates to diabetes.  So now that it's not, that also means it's not fixable.  And I must say, I'm not a fan.

Middle of the Night Low

For all of you out there with CGM's, I  hate you on the mornings after this.  Just, fyi.  


I haven't been sleeping well lately, but I have no idea why.  (Probably because the other side of my bed is currently a storage area for my clothes) but I'm trying everything, except putting my phone away for an hour before I go to sleep.  Most of my friends don't live in the city; they've been around for forever and I have a hard time meeting new people so my phone is my lifeline and every time I hear a little "ding-a-ling" with that small green light, I get freaken excited.  So turning the phone off isn't an option for me.  Last Thursday I was actually tired.  I started to get goofy, I think I actually molded to my bed and it's quite possible I fell asleep while trying to send a text.  


I know that Friday I don't have to go into work in the morning, so when I wake up and my room is pitch black, but I feel like I've slept forever and I have trouble rolling over, I know that something is wrong.  I grab my meter, but end up with a book (literally).  So I turn on my light and test and at 2:56 in the morning I see a glorious 54 staring me back in the face.  So I roll back over.  And then I realize the light is on, and then I remember I'm low.  So I grab my bottle of tabs.  And there are two in there.  *%#@! So I grab a cup from a low previous in the week and I fumble to the kitchen, turning on the light and getting my juice.  Either my roommate and her boyfriend ate whatever was taking up all the room in the bottom of the fridge, or she cleaned it, making my job trying to get juice while I'm low much easier.  So I pour a full cup and I take six gulps.  Because as I'm taking the first sip, I remember reading that Kerri measures her juice in sips.  And I remember that the diabetes educator told me on Wednesday that under 50 basically you need 30g of sugar rather than 15g.  I feel like I'm in the 30s, so I take 6 sips and then I refill my cup.  This is a little cup, so put my juice away and head back to my room.  I stop every so often to take more sips.  I finish my juice and I start texting Rebel.  Sometimes those 3,000 miles and 3 hour time difference come in handy.  In the course of 4 texts, we manage to talk about lows, work, camp and boys.  Yea, it's 3AM, what do you expect?  She asked me a few other questions, but by that time, I was back asleep.  All in all, I was awake for 20 minutes, but I didn't retest.  All you good diabetics out there, I know this is wrong, but I don't ever fall asleep when I'm low, so the fact that I was able to fall back asleep was a good sign.  


When the rooster on my phone started yelling at me at 7:30 Friday morning, I wanted to rip my ears out. It felt like 5 minutes ago I had been curled up trying to fall back asleep.  And I had been ambitious for Friday morning, hahahahahahaha nothing happened.  I sat in my room, wrapped up in comfortable sweatshirt, fleece blankets and TV reruns.  Until it was time for a shower, and then music helped me.  Of course, Friday morning, my BGs were great. Friday afternoon, not so much.  

First Day at Joslin

This week I had my first ever appointment at Joslin.  It started a little stressful because of my lack of paying attention to the time and my dislike for the Longwood area.  I get inside and I got directed to the Beetham Eye Institute, where I thought I would be getting my eyes dilated, but that wasn't part of my plan that day.  Instead I went upstairs where I met a very nice woman who helped me check in, and I received a folder with a whole bunch of information.  I started with the Joslin Vision Network where they took pictures of my eyes.  I have never had this done before. The woman showed me different parts of my eye, but since I did a research project on macular degeneration in college, I kinda knew what I was looking at.  I found it a little eery though knowing I was looking at my own eyes.  We talked about the specific parts of the eye, me needing a dilated eye exam, and then I went back to the waiting room.   I emailed & texted friends until I  got called in by a nurse who took my pump and meter to download it, and take a quick sample to test my A1C.  Back to the waiting room.  The nurse came back and handed me my pump.  My site is currently in my leg, so I was a little hesitant to reconnect in the middle of the waiting room, but I'm at Joslin, so, what the hell!  I reconnect, go back to my phone and wait for the nurse practitioner.  I want to give them some sort of nickname, but I feel it either is too obvious or doesn't do her justice.  So I will just call her my nurse practitioner.  We start talking, but how do you put 21 years of diabetes history in just a few sentences?  So we talked about my diagnosis, but that was a lot of  "I think this is how it happened...", and how long I have been on the pump (March 16, 2002), and if I've ever been hospitalized for DKA (yes, twice).  We went over my pump and meter printouts, and my A1C.  Since I test about 15 times a day, a sensor probably wouldn't help me, except overnight.  Good thing since I'm not ready to fight with insurance yet.  My A1C is higher than my BGs portray, so we're focusing on the overnight.  Although I'm not excited about waking up in the middle of the night for a while.  But if it helps me get my A1C down, I'm all for it.  And considering my last official A1C was way higher, 8.2 is definitely something to start to be proud of.  For your information, this is not where I want to be, but the downward slide is something I'm planning on continuing.  We changed my sensitivity factor, talked about my shin splints and I got a new meter to match the test strips my insurance actually covers.  After I got my prescriptions from her, and when to see her again, I went back into the waiting room to wait for the Diabetes Educator.  At this point, my stomach was screaming.  I was so nervous that I hadn't really eaten anything all day.  But I go back to my phone and I finally open the folder and I find out that there are two surveys that I am supposed to fill out.  I start filling them out and I get kind of frustrated with them because well some days my answers might be a one and somedays they might be a five.  (That one had a lot of questions about frustrations about living with diabetes.)  And then the diabetes educator comes out and calls my name, so I gather all my things, including my log book (which no one actually looked at) (and is a binder) and walk back with her.  It was a little later than my scheduled time, and I'm a patient that technically doesn't mind, but the nanny taking care of Girl Genius has already called me, so I'm a little bit nervous about that.  (I checked the message and there was no emergency.)  So we go back and we just start talking.  We talk about how long I've had diabetes, where I got taken care of before Joslin (I will always love you Dartmouth), how I treat a low, and what to do on a sick day, and all those sorts of fun things.  She also asks me what I talked about with the nurse practitioner.  We go over my surveys a little bit and I speak about how I made comments on mine because diabetes can't be characterized by one number.  This diabetes educator was a fast paced woman who treated me like an adult!!  Yes, I'm 25 years old, but during my college years I wasn't so confident about diabetes (and with good reason), so now I'm here and this woman is looking at me like a peer.  We talk about the information I know and how to use it.  Both the educator and nurse seemed surprised that the doctors and nurses were knowledgeable from Dartmouth.  She asks me if I wanted to attend classes, and I too hastily said "NO!"  and she laughed, but with good reason.  Classes aren't aimed to people who are already knowledgeable.  And I am knowledgeable about diabetes; I always have been.  It's just a difference of knowing the information and correctly applying it to my life.  In that whirlwind visit, I got a "blue book" (which I should have looked at by now, but haven't), talked about overnight testing, and agreed to come back in one month.  The other thing we talked about is my weight.  I am not where I want to be, but I'm also not too big.  She asked if I gained weight since I've been on my pump. "Well, Diabetes Educator, I got it when I was sixteen.  So yes, but I don't think the pump is the reason why."  We both laughed at this, because my pediatric (pediatric = favorite ever!) endo had talked to me about this.  And my fluctuation in weight over the years has really never been related to the pump.  It's just life.  


I feel like the end of this post is a little whirlwind, and little all over the place, but that is how the meeting went, so I'm going to leave it.  I feel empowered now.  I feel in control.  I feel great, and  when my day started I didn't think that is how I would feel.  


  

It Was That Kind of Day

Yesterday I had my very first appointment at Joslin.  I've been hearing wonderful things about Joslin for as long as I can remember.  Me though, I'm not a fan of new doctor appointments.  I'm not a fan of new anything actually.  It makes me nervous; I get all flustered; it's just not a good feeling for me.  I didn't have to work yesterday morning and Boy & Girl Genius were both set up for playdates in the afternoon.  But all of a sudden, my appointment is in two hours and I'm still sitting in my pajamas on the couch.  Luckily, the drive there is very easy from my apartment, so I was able to park my car in a garage.  Although, for those of you out there with minivans, you are not compact.  And I realize that your children don't actually have to open their doors to get out of the car, but those of us with compact cars, we do, and it's very hard to get in and out of our cars.  I start walking, and luckily there's a giant banner announcing where Joslin actually is. I walk past it though at first, but I manage to make it inside, where I was able to get to where I needed to be. Everyone there was quite nice, and I'll talk more about that later when my brain is actually functioning.  But after I was all done, I answered the four missed calls I had from a fellow nanny who was taking care of Girl Genius for me, and I was finally able to pick Girl Genius up at 5:00.  I don't usually have to drive at 5:00 since my day usually ends at 6:00, but we got stuck in rush hour traffic.  So a drive that should take 15 minutes, took us 40 minutes when I was finally able to pick up Boy Genius.  Ten minutes later, Dad Genius walked in the door and I was on my way to NH for synchronized swimming.  I got to see all the girls (especially the ones I used to coach), we practiced figures, and ran through each of our routines twice.  On the drive home, it was really windy and I saw the back of an 18-wheeler almost blow into the car in front of me.  There some sort of large carcass in the middle of the highway, and it was down to one lane because they were painting lines.  I got back to my apartment at the nice time of 10:30 and molded into the couch before peeling myself away to my bed.  


I definitely want to say more about my actual Joslin experience and to compare with others, but it was the first time I felt like I got treated like an adult, so it was a good experience, but like I said, that deserves to be written about with a functioning brain.  

Strength

When my diabetes got attacked, I was already having a pretty tough day. And things are good in my life. Probably because I'm an eternal optimist, but I could use a little bit more support lately, and then I watched the CMA's and I saw this:

  

I've been listening to it over and over and over, and already Girl Genius knows some of the words.  Then a few days ago I was in the car with her, and before driving her to school, I tested.  From the backseat I hear,

"Briley, how much blood sugars do you have?"

"121"

"Is that good?"

"Yes, it's almost perfect for me."

"Oh good!"

It is amazing to me how such simple questions, with pure curiosity, can make me feel so much better.  Now if an adult asked me that question I would answer it with 15 times a day, but a 4 year-old's incorrect grammar just make it all that much better.  

Running Low

I am the type to get bored with one type of exercise very easily, so I try to do all sorts of different things.  I like tennis, but unfortunately that requires another person and a gym with tennis courts (neither of which are available to me right now).  So instead, I try to run at least one day per week, swim laps one day per week, and do some other cardio at the gym one day per week (generally either the elliptical or the bike - depending on the BG beforehand).

What's a Shin Splint?

One day last week I went for a run.  Just 2.3 miles, but all of a sudden I got this crazy shin splint in my left leg.  When I started running earlier this fall, I had awful shin splints one day, and when I got back I was in the low 40s.  Definitely scary, especially since I didn't feel low while I was running.  So last week I'm going along, and past the halfway point, when I start to get a shin splint in my left leg.  It comes on pretty strong and then just holds steady.  I'm already on a temp basal, I started my run with a BG near 200, but I suspend my pump anyways.  It's not like I can stop a run like I can at the gym.  I've noticed this feeling before, and since I don't run with a meter, it's an educated guess.  I keep on running, nearly tripping over the bumpy sidewalk, but I grab my pump from my waistband and I suspend.  I get back to my apartment about a half mile later (I think) and I test and I'm in the 60s.  Not only a quick drop, but my suspicions in the way to feel low while running are confirmed.  


My mother has always been outspoken about how each person with diabetes has different low symptoms.  My experience with a certain medical professional, is they only care about the ones we all share, but aren't our individual ones important too?  But back to running, is there anyone else who has ever gotten this symptom (even if not as specific as just the left leg)?  Or is there anyone else who gets another type of symptom, especially while exercising, that is just as specific?  It's something that has gotten the wheels in my brain turning, and I'm hoping to find more information.  

It's the Only Thing I've Wanted for "Forever"

Since I don't remember life before diabetes, I've had diabetes for "forever."  My guess is that others who were diagnosed at a young age might also feel this way.  So what could a three year old want that a twenty-five year old wants too?  Nothing more than a CURE!  Well, now maybe I can even be a part of it.  And you can too.  (I am in the bottom of the C, and half of my picture is cut off.)


I think I've heard of this before, but I never really payed attention to it.  But I can no longer ignore something as cool as the Diabetes Research Institute.  I haven't learned everything there is to know yet, but have any of us, really?  But now I get these awesome email updates that not only tell me others' stories about why they want a cure, but also research information.  Day by day, I learn more and more.  You can too.  It's satisfying, empowering and boosting, so what are you waiting for?!

Hug a Diabetic

I got invited to a Facebook event, which I quickly replied yes to.  It's National Hug-a-Diabetic Day.  And yes, I want a damn hug!  Yesterday was consequently one of those days where I just wanted to collapse and let someone else take care of my diabetes, but that's why we have this "hug us" day.  (But that's not why I'm writing this.)  For those days.  The tough days.  The bad days.  The super awesome wicked good days.  Whether we need support or congratulations, it would be nice to get a hug for doing all of this work, all the time.  We've got this whole month of awareness and then one day to say, "hi, please give me a hug.  I've got this thing I live with every day, and sometimes it sucks, so I could use a hug."


Next year though, let's not have it on Veteran's Day.  Those men & women deserve all of our support.  Current members of our military CHOSE to do this, for US.  They fight and protect us, and even get sent to natural disaster areas.  We may not have had a choice, but they do.  And I also know that there are veterans who did not have a choice, and I think they deserve our respect even more.  They get one day, and we get one month.  Next year, let's have Veteran's Day not be the day that we ask for hugs.  

Attack

Two days ago my diabetes got attacked.  In the conversation of an unrelated topic, all of a sudden I heard, "You have diabetes.  You have an autoimmune disease so you are weak."  Since I'm a nanny, I'm a big fan of not interrupting people.  I broke that rule: "Do not EVER talk to me about my diabetes again.  You think I don't know I have diabetes?  The testing and bolusing are a constant reminder, and while I'm living my life I don't need you looking down on me."


I may have over-reacted.  But this is a person who I have tried to teach about diabetes (especially as it relates to me) over the course of the five years I have known them, and they clearly have not taken as much in as I thought.  And it isn't that I don't want them to talk to me about diabetes, but I certainly don't ever want to be attacked again.  


Is there anyone else out there who has had a similar experience?  Especially with someone who you thought knew about diabetes?




*On a side note, Happy Veterans Day to all, especially to the Veterans*

Dia-buddy Weekend

We got to NYC on Friday night, and Rebel says, "Are you THE Meghan?!"  And the answer is yes.  My parents, Meghan and I went to NYC Friday night to join Rebel who flew there during the day on Friday so she could run the NYC marathon on Sunday.  Here is what we did on Saturday:

Times Square Saturday morning

Registering & standing in front of 26.2 mile map

Here's the moments where you know we have diabetes

:) for good control

view of Lady Liberty from the top of Empire State Building

view of the Chrysler Building from the Empire State Building

Can you find the one not used to cold weather?

When we went into the Empire State Building, we had to go through security (just like the airport).  So we all unhooked, took off our pumps, and then as soon as we told them we had pumps, we were allowed to walk around.  We hooked back up and went on our way.  We went on the Sky Ride, then to the Observation Deck, went to Starbucks, walked back towards Times Square, went to M&Ms World, then back to the hotel (all taking about four hours).  I went into the bathroom and discovered I never successfully hooked back up.  Before my gingerbread latte at Starbucks, I was 217, and bolused.  While higher than I would like (or have guessed), not an alarming number.  I tested frantically, and I was 276.  I expected it would be ^400.  Although 276 is higher than I want, also not bad for getting zero insulin for four hours. 

M&Ms World

Carbo-loading dinner

 On Sunday, she got up bright and early (even earlier because her phone didn't automatically change the time), and my parents brought her to the NY Public Library where she boarded a bus for Staten Island and the start of the race.  She knew we would be at the mile 16 area, where we saw her.  That Barton Center jersey looked great, and I wish I could show you, but she was running so fast (and I was jumping up and down at first), that I never got a picture of her running.  I was so excited, and so proud.  **Side note: her CGM was supposed to arrive at the hotel and never did, so part of her planning around her diabetes care through the marathon was changed last minute.  It would have bothered me, it didn't even phase her.** We walked over to Central Park, and found a great spot, but she had already run by.  We got word that she had finished! And over an hour and a half later, we finally met her on Central Park West.  We were looking, looking, getting excited, and I hear "Broccoli" from behind me.  I think I may have scared her with my screams of excitement.  Think about it.  There were 45,000 runners, and she started in the last group, but finished in the 7,000s.  I am thoroughly impressed, and I hope you are too!

She advertised the whole 26.2 miles

Post Marathon Pedi-cab ride

Six Things I Want YOU to Know About Diabetes

1. Just like it takes a community to raise a child, it takes a community to take care of and support a person with Diabetes.
I wrote about independence; I am still serious about not wanting to do this by myself.  Technically, first and foremost should probably be my doctor.  But first and foremost are the friends I have with diabetes.  Diabetes is so much more than a broken pancreas, and on the bad days my friends are there to listen, support me, and possibly give advice.  My friends without diabetes are also supportive, and help me be just another person.  And of course there is my family who has been there since day 1.  It's the little things, like my cousins wearing blue last week, or having Fruit Pizza as a birthday cake, or helping me test my BG as a kid, or my uncle not having favors at his wedding, but instead donations were made in my name to the American Diabetes Association.  And of course there is Mom & Dad.  Words cannot describe what they have done & will do for me.  All these people make it possible to live with diabetes, and live fully.  Then of course there is the endocrinologist and that support system who is there to make sure I am up to date with my diabetes information, that I am taking care of myself for the long-term, and there to answer my questions when I have exhausted all other options. When I was little, there was the diabetes educator and the nutritionist.  Every year they helped us figure out a good diabetes schedule that worked for me around the school lunch schedule.  (Especially in eighth grade when I had lunch at 10:30 AM.)  There is the customer service reps at Minimed who help me when I have an alarm I'm not used to, or a broken pump.  There is my gym, the lady at the bar with a pump, the diabetes cookbooks (which I just get angry at because I feel they're trying to tell me what to eat), and last but not least, online support groups (which I'm definitely new to).  I decided to jump in with both feet, and I am whole-heartedly enjoying this decision.  Thank you to all who are making this a wonderful experience.


2.  Just because I act like it's no big deal, it IS a big deal.
I don't make a big deal about my diabetes.  I fight tooth and nail every day not to because I want to be treated like a normal person.  I don't want people telling me that I can only eat certain things, or that I can't participate in activities, or to use it as an excuse in a way that I am acting.  But it is a big deal, because it can affect everything.  The one day every year that I make a big deal about it is July 4.  And while I don't want people making a big deal about it every day, I want you to make a HUGE deal about it July 4.  Celebrating every anniversary has always been a big deal in my family because every year it is an accomplishment.  If it has been a bad year, then it means we survived and we're on to the next one.  If it was a good year, it is time to celebrate and give ourselves a pat on the back.  And hope for the same things in the coming year.  Every year is big; because every day is big.


3. Just because my A1C isn't perfect, doesn't mean I'm not working my ass off to get it there.
But first let me tell you, there have been times when I wasn't working my ass off.  It's hard to work hard for diabetes.  I test a lot.  I try to test every time before I drive. I try to keep track of my numbers and find patterns.  Once a month, I test in the middle of the night for a week.  I try to eat a healthy diet. I try to exercise as much as possible.  I use temporary basals when I exercise to prevent lows.  I like to be prepared and carry a humalog pen in my purse.  I have a bottle of tabs next to my bed, in my glove compartment, and at work.  These are general things that I have to do, and seem little in comparison to the testing and bolusing that goes on day after day.  It's hard, it really is.  And just because something worked one day, it doesn't mean that it's going to work the next day.  There is the difference between simple carbs and complex.  And complex carbs can affect my BGs differently as well, especially if accompanied by protein.  It's hard to remember how every single food I consume individually affects me.  There is a lot to keep track off, and yes, I work my ass off.  It doesn't always work out, but every day I have to try.  If it does work, I'm going to be pretty damn happy.  I work hard every single day.  I try every single day.  But that doesn't mean that it's going to work.  Don't judge, especially based on one number.


4.  There is a definitive Before & After.
My first memory is in the hospital.  I remember Aunt Shaunna walking me around the hospital in my red wagon.  I know that my Aunt Cathy gave me a teddy bear dressed as a doctor who I named Dr. Cindy after my mother.  I remember standing in the pantry (in all it's glorious greenness) not being allowed to take a sip of my father's Coke.
There are stories that I know about and ask my mother for more information.  Like the Christmas Party where all the kids locked themselves in my room.  We don't have new locks, we have fancy, intricate keys (that match the look of a 100 year old house) and we were too young to figure out how to then unlock the door (and the "older" kids had just gone downstairs to get food).  Dad had to get the ladder out, climb up to my window and break the window to get in.  And the simple question that I asked, "Mom how old was I when we locked ourselves in my room?"  "Well, I know you didn't have diabetes, so three."  I found a picture of me at an Independence Day parade, and asked the question, "Could this have been the day?"  "Well this guy behind you has a Coors, so we're in Colorado for Uncle Peter's wedding.  Plus, you were a brat that day so I wasn't taking your picture."  It's amazing to me how one day can determine a memory, an emotion, and so much more, like the rest of my life.


5.  If you're busy and don't have time for diabetes, too bad; it's still there.
I've had this lovely friend for 21 years: without a vacation.  Around the fourteen year mark, I was fed up.  I suppose it had been building, but no one really knew.  Camp Carefree was the closest thing to a vacation I ever had, and I had it every summer for two weeks from 1994-2002.  I was prepared to go back in 2003, and ready too.  But it wasn't in the cards for me that year and I was devastated.  It wouldn't have been the same; it would have been my first summer as a counselor (I would've been giving kids their diabetes vacation, not getting my own).  I fought tooth & nail to get back that summer, and so did my mother.  Instead I started volunteering at the local elementary school with their summer program.  In August, I left for college and tried out for the tennis team.  I returned home a few days later, only to return again for classes.  I had a few friends from high school there (this was not the reason I chose the school), but that was it.  I wanted to be a good college student, but my shyness took control.  In that time, my diabetes control also went downhill.  I had the pump, so I was always getting insulin, and that's pretty much how I took care of it.  I had been taking care of it my entire life, so ignoring it for a little while would be okay, right?  Absolutely wrong.  Shortly before Thanksgiving in 2003, I was admitted to the ER in Newport, then sent to Providence since there were no endocrinologists in Newport.  At the time of admittance, my BG was 789, and the nurse gave me regular ginger ale.  I was in the ICU, then a regular medical floor.  And then I went back to school.  As I was leaving the hospital a week later, I was ready to be a good patient.  I was turning my life around; but I wasn't ready for that.  As soon as I got back, I reverted to similar habits.  Although, I was in constant contact with my endocrinologist.  I kept living and moving and going, but my diabetes has never been the same.  I tried really hard.  But it is hard.  To be prepared for everything, always.  To tell people you don't know very well that you've got to stop and test, when you're worried about fitting in.  I've been working on it, but college & diabetes: I just didn't know how to do them both.  I exercised off and on to help me.  I always ate pretty healthy.  It was just the logs and the keeping track of patterns.  Now that I'm in the real adult world, I knew I needed to change things.  Unfortunately, it took another trip to the ER in March, and I got back into running.  But the summer, and friends, and hearing about so many children with diabetes with other health issues, and I've gotten back into it.  I started testing.  Testing more means it's easier to find patterns. And when it's easier to find patterns, it's easier to stay in tighter control.  But it wasn't easy.  Now that I'm in the habit of testing, it still isn't easy.  It never will be easy.  I like to think that I've taken my life vacation and I'll be able to go on for the rest of my life as a "good diabetic," but who knows.  It's only been a few months and sometimes I still think it would be easier to go back, but I know I wouldn't feel as good as I do in this moment of my life.  And maybe when I want a vacation in the future, I can look back here and see the trouble it caused.


6.  It is the best thing that has ever happened to me.
There are days when I sing this from the rooftops, and days when I remind myself that I was singing it from the rooftops.  But it is absolutely true.  I learned as a young child what affects my body (and probably others' too, they just don't have to monitor themselves), such as the change in seasons, or time changes.  My parents brought me to a support group at the hospital once a month where I was able to meet other children with diabetes.  I met a great friend too, and she lived in my town.  We became friends in first grade, and went to school together until eighth grade, and camp together for 10 years.  We went together that first summer, not knowing what it would be like, not knowing who else would be there, not even knowing if we'd like it.  We LOVED it.  We met our best friends.  I've spoken before about my friends from camp, well here is where I met them.  How can I not be thankful to the one thing that introduced me to my best friends?  When I needed to find something outside of NH, I found a diabetes camp in Oregon where I went for two summers.  I found more dia-buddies out there.  The best, most supportive friends in my life came from the pure fact that I have diabetes.  It is, and always will be the best thing that has ever happened to me.  Sometimes I just need to be reminded of it.


Here are my six things.  If you want to know what other diabetic's six things are, go here!

Big Blue Test

I'm not usually one to watch viral videos, but this one was part of every advocacy place I went.  I watched it and I loved every minute of it.  I posted it on facebook (I don't usually post links there), I emailed it to my family, I watched it many times.  I didn't watch it for the fact of "maybe if I watch it more, then more children will get the insulin they need," (although, that would rock) but I see myself in so many parts of this video.  I am now an adult with diabetes, but I was a child with diabetes too.  The thought that there were children out there who didn't have access to insulin never crossed my mind then, but it's here now.  So I'm pleading with you, let's help these children.  Diabetes is hard enough when you have access to everything, never mind if you don't.  Let's help make their lives better.  Do it for you; Do it for me; Do it for them; Do it for your mother, father, son, daughter; I don't care who you do it for, just do it.

Sisters

I was drawing a blank, but it's National Diabetes Month so how could I not have anything to write about.  There has to be something, but yesterday was a boring diabetes day.  It's not that yesterday was a good diabetes day, but it's been up and down, up and down so I'm correcting & bolusing following this pattern.  Pretty boring stuff.  

I've glanced at the Diabetes Sisters before, and I'm interested in them, but my interest hasn't been piqued quite yet.  Since today is Orange Will (I am not participating because I am trying to wear blue every single day this month), I thought that I would focus on these sisters and see what they have to offer me.   I decided to sign up for the Sistermatch program.  I am not sure where this will take me, or who it will set me up with, or how many times I'll talk to them, or if it will continue even longer, but I look forward to what this will bring me over the next six weeks.

Dr. Cheerleader

I had a nice post started.  Informative, but asking questions.  Addressing my feelings and relating them to my ultimate decision.  Long story short: I saw a new PCP yesterday and she was very nice.  I like her.  One of the office workers; I LOVE.  A few of her quotes while trying to get me an appointment with an endo

I hate hate hate getting blood taken

• "No she's not a diet & exercise kind.  She's a Type 1!"
• And to me: "This lady must be new, she's a moron & a jacka**"

During my appointment I got a flu shot (go me!) and I got blood taken (I felt like a piece of meat), and I'm now feeling the repurcussions of that decision.  My bad feeling of the lab is pushing me towards finding a new PCP, but I have a whole year to do that, so for now, I will enjoy Dr. Cheerleader and all she can do for me. 

"I just want you to know I'm always here." - Diabetes

During the every day mundane tasks, diabetes is still there.  I found that out today the hard way.  I have been on a roller coaster for the past few days, so the times I've been testing throughout the day has also been on a rise.  Today I started kinda high, almost low, then bounced back up, and kept going.  As I bolused on the way back from getting Girl Genius, I got the "oh so fun" No Delivery alarm.  I was on the rise and definitely needed my bolus.  I grabbed my pen, attached the needle and primed it.  As I pulled up to a red light, I yanked up my sweatpants and got my pen all set up.  This light is notoriously long, so I wasn't worried, I put the needle in, and the light turns green.  I plunge the pen faster than I ever have before, all while taking my foot off the brake and trying to step on the gas, and steer.  I get around the corner, and I take the pen out, shake my pant leg back down and continue on my way.  By the time I get back to the Genius household, my BG is coming down.  It may not have been the smartest or safest way to get what I needed.  But it worked, and I got the outcome I wanted.  After picking up Boy Genius from school, I changed my site and the rest of the day has been "fine."


By "fine," I mean that I found out that Diabetes Awareness Month actually means: Have fun on this roller coaster ride!

A Seriously Intense (Diabetes) Day

When I went to bed on Friday night, I was 75, so I trekked downstairs and grabbed some juice.  At my parents house there are these small orange cups that are the perfect size for a low BG correction.  On Saturday, I woke up, and I already felt stressed out.  That lovely meter confirmed it: 329.  I knew that it would be a tough day to get through, but I didn't think the stress would start before I even got out of bed.  I rolled out of bed and got in the shower.  I had waited for my bolus to finish before jumping in, so post shower I was 286.  I get dressed, do my hair, eat breakfast and then change my outfit.  My mother didn't approve (and I can't blame her) because my pants were much shorter than I remembered, so they looked rediculous with the shoes that I brought.  But maybe Grampa did that for me since my grandmother layed out his clothes for him every single day they were married of sixty-three years?  We get ready to leave to go pick up Grammy and I'm 225.  We get in the car and we're not even on the second road and I start crying.  I mean, haven't I cried enough, I thought I would be sorta okay on Saturday.  (There was the day/week he died, the day of the memorial service & our birthday has passed) It's mom piping up saying "Please tell me someone remembered to bring my father."

Those tears were a river down my face.  I knew that it was just going to be a long diabetes day.  I told myself I wasn't going to worry about it anymore and just survive the day.  We picked up my grandmother, who is seemingly okay.  I now am sitting in the front with Dad and Grammy is chit-chatting away, which is good since it sorta takes my mind off of what we're going to do.  We get into N. Andover, and we stop at the grocery store to pick up a bouquet of flowers.  I test again, 200.  Actually, now that I've prepared myself for an awful diabetes day, 200 wasn't so bad.  Mom gets the flowers and we're on our way.  As we're driving the final minutes to the cemetary, this song came on the radio and I fought those tears tooth & nail.

We got to the cemetery and met Aunt Cathy, Uncle Jack, Andrew & Ashton.  I see the Dea family plot for the first time in my life (as far as I can remember).  We get out of the car, get the flowers, and on the far side of the large family stone is a cooler.  Aunt Cathy passes out shot glasses and fills them with Jim Beam and we all take a shot for Grampa.  Jim Beam was his drink of choice (or Bloody Mary's) and Grampa, I love you, but holy crap, how did you drink that?! And Grammy had about 3.  "We" shared stories and memories and oh dear, those tears just let loose again, when Aunt Cathy looked over at me, looked at Grampa's space between his father & brother and said "Dad, you'd be so proud of me, I didn't even cry!"  And then she started crying too.  Everyone spoke, everyone shared memories, everyone said, "I love you."  Except for me.  I knew that if I spoke, words would not form.  I may not be as calm as Grampa, but we are connected in a way I can't explain except for 09/12.  We took his flag from the Veterans and staked the flowers in front of his site, and left to head off to lunch.

 I tested in the car, and I expected to be back over 300, but I was 179.  We drove around N. Andover for a little while, to the house where Grampa grew up and then back downtown to the bar we were going to eat at (it opened at 11:30, so it was our only option).  While I wanted to share in toasting Grampa again with a Bloody Mary, I don't like Bloody Mary's so I opted for an Irish Coffee.  (Grampa, I think I'm going to have one every September 12 from now on, okay?  I wanted to honor you with one of your drinks, but I can't stomach those!)  We all ate our lunch and departed ways.  It was so good to see everyone, and it was good to share memories.  I shared stories about Girl Genius & Boy Genius because I knew I wouldn't cry if I talked about them.  When we got back in the car to drive back to NH, I had to focus on thinking about things beside family, because I knew those tears would start flowing again.  The stress of it all hit me too, and I was exhausted.  I think Grammy may have fallen asleep for a little bit, and when we got to Bedford, we went downstairs with Grammy to give her a few checks and things, and then we headed on our way.  I could not think of a better place for Grammy to live, but I just wanted to put my feet up, and her apartment is not that type of place.  When we got back in the car I was 253.  At this point, nothing was going to surprise me.

Dad stopped at Dunkins for Mom & I, and that helped, but I really just wanted a nap.  I tried to escape many times to my room, but that wood stove was going, so I tried downstairs instead.  No such luck.  I made a delicious treat to bring to Amanda's, and I helped Mom do the dishes and I got "yelled" at for sitting at the computer and other things.  I took the time to play my music and straighten my hair, and before getting ready to go the neighbor's Halloween party, I was 320.  Again, I wasn't surprised. there was stress, tiredness, and tears.  I bolused then put together a ski bunny costume to wear to the garage party.  I ate delicious food and I saw a really cute bunny, an excited Dorothy, a creepy cat, and I sat with a game & liquor store.

Paige and her parents got there, and soon after Paige & I left.  I changed into my Venus costume and off we headed to Amanda's.  On the way there, I was 158.  I'm not quite sure how that happened, but I was focused on costumes & other Halloween fun, so I kind of forgot about the morning.  I asked Paige to join me, but in the middle of the afternoon, I texted her to see if she wouldn't mind being the DD.  Even sober, I wasn't really in any condition to drive.  I felt guilty asking, but she is one of the friends who knew what I was doing on Saturday morning, and she has been quite possibly the most supportive friend in the past year, so of course she didn't mind.  We got to Amanda's where it was insanely decorated, including a fog machine.  Considering they asked everyone to bring a Halloween dish, there was a lot of food as well, so about two hours later I was 238.  Not too bad considering the rest of the day.  I bolused for a little of the correction and continued on my way.  Before leaving, I tested again, and I felt great!  That 333 certainly showed me though.  Another half bolus and I was on my way.  Leaving good friends and tough day behind.