Wednesday, December 26, 2012

Thankful for parts of Diabetes, Yes I am!

I know I have not been blogging lately.  I’m deeply sorry.  I have been very busy with real life.  I went to visit a friend in PA and caught the puke/poop bug, and was sick for a few days.  I am also moving down to PA so been busy packing on top of the normal daily activities.

I wanted to share with you all something that actually makes me thankful for diabetes.  It is my BFF Jody. I met her in 2004ish on a diabetes forum Diabetes Daily.  We chatted on their message boards and chat room for a few years.  We became very close good friends.  In fact so close we consider ourselves twins.  We have a lot of similarities.  She is a few days shy of 6 months older than me, we were diagnosed around the same time, have similar interests.  It is quite funny.  The saddest thing is we live an ocean apart, me on the east coast of the US she in England.  So it’s very hard to keep in touch as there is a 5-6 hour time difference depending on the time of year.  And mailing letters and packages and phone calls are expensive.

In 2009 she got the opportunity to come over to the US and visit me here in Boston.  She came over with her cousin and her cousins 2 kids who were 3 months and 2.5 at the time.  We had a ball.  We went to Vermont Teddy Bear Factory, Ben & Jerry’s, NYC, all sorts of places in Boston.  She even experienced Chuck-E-Cheese one rainy day. 

June 2011 I had the chance of a life time and got to go to Scarborough England to visit her.  I had the time of my life.  I stayed there for 3 weeks.  We saw everything in Scarborough…I even got to go to her Endo appointment.  We took train rides to York for the day and met up with another D girl, and we took the train to London for 5 days.  I love London I cannot wait to go back and visit there.  In addition to the train we took the bus to some Sea side towns, and her dad drove us to some cool places like the Moors National Park and a Tea House.  It is so beautiful over there.  And I just have to say living over there is so different than here in the US.  They use a ton of public transportation, and it gave me a whole new approach to public transit.  I now love using buses and trains here in the states to get around.  We also walked almost everywhere.  Something we here in the states hardly do.  We don’t think twice about jumping in the car to go to the corner store.  There if we couldn’t use the town busses we walked.  We walked everywhere, to the grocery store, her hospital appts, her cousin’s house, the grocery store.  If we wanted to go somewhere we had to walk.

I know diabetes can be very frustrating at times.  But because of diabetes I have made several great friends worldwide--from the Philippines, to Malaysia, TO Australia, to all parts of Europe, to Canada, to all over the US.  When I get down about diabetes I like to think of all these friends I have gained and the opportunities I had because I have diabetes. 

I have to give a quick shout out to some of the great ladies I have met.  Jody, Lucy, and Carrie in England, Joni in MN, Hannah in Malaysia, Lloyd in SD, Jess in Nova Scotia, Alexis and Megan in Las Vegas, and there are many many more.

Tuesday, November 20, 2012

Visit from the Diabetes Monster

            Last night I had a visit from the Diabetes Monster.  He decided he wanted to have a sleep over and spent the night with me. Here is a brief recap of my unwelcome sleepover.

            BEEP! BEEP! BEEP!  I am rudely awoken out of a dead sleep by Tigger (my dexcom receiver).  Low BG alert.  Says I am under 55.  I grab Roo (my meter) and test my bg.  54! Great, exactly what I had plans to do at 1am!!! NOT!

            I crawl out of bed.  Stumble half asleep across my bedroom to my mini fridge.  Yes I have a mini fridge in my bedroom.  But it’s not the fridge you would expect a 27 year old college student to have.  It is stocked full of juice boxes, water bottles, and insulin. 

            I open the door and grab a juice box.  Not just any juice box but a Capri Sun.  Those have been my juice of choice lately.  Now in the dark with a low of 54 and trying to get the straw in that hole is not easy at all…I need to rethink this when I go shopping for more juice.  It was a bit like pin the tail on the donkey game.  Don’t believe me, go into a dark room, spin around a few times and try to get the straw in that little hole without piercing the other side of the juice pouch!  (You all will be very proud, after a few tries I successfully got the straw in without piercing the other side of the pouch.)

            Fifteen minutes go by and I test again 122.  Great I am back off to sleep.

            BEEP! BEEP! BEEP! It is now around 3 am.  Tigger once again is rudely awakening me to say I am low.  This time he says I am 69.  I test on my meter and it reads I am 87.  So thinking I may be dropping I drink another juice.  This time I turn on the lights so it isn’t eventful enough to describe the walk to the fridge and back.  I go back to sleep.

            BEEP! BEEP! BEEP! Now it is 4:30 am.  Tigger for the third time tonight is awakening me.  But this time he is telling me I am high, reading that I am 257.  I bring out Roo and test, 234.  Ok a little high.  I follow the tubing attached to my body to find Piglet (pump).  I bolus and once again, go back to sleep.

            BEEP! BEEP! BEEP!  It’s 5:50 am and Tigger for the fourth time in one night awaking me.  At this point I was about ready to chuck him out the window and let him sleep outside where ever he landed.  I looked and I was alerting low with a BG of 83.  I tested at 78.  Having my third juice box of the night.  Now I am wide awake lying in bed.

            You may wonder what I was thinking about.  I was thinking of all you D Mom’s and D Dad’s out there.  I was thinking how every night this is you, you up taking care of your child with diabetes.  I am an adult with diabetes.  I have to take care of myself when these events arise.  But I can just say I greatly appreciate all you D Parents out there and what you go thru on a nightly basis so your little one can sleep.

            I get up finally around 6:30, eat breakfast and jump on the computer.  Hoping my day would get a bit better, maybe able to catch a nap latter.  Ha-ha, yeah right. 

BEEP! BEEP! BEEP! Low alert, it is 2 hours after eating and my bg is 74.  I guess the D Monster wants to spend the day with me today!


Sunday, November 18, 2012


            Hi everyone!  I’m so thrilled to be working with the Diabetes Monster.  It will be some fun times for sure.  Some of you may know me, but many don’t.  Let me briefly share my story with you.

            I am Kristen.  Close friends sometimes call me Kris…my DOC is considered close friends.  I am 27 years old.  I have type 1 diabetes.  I wear a MM Revel 723 and a Dexcom Seven+ (hoping to switch to the G4 in January when warranty is up).  I live outside Boston, MA.  I have a strong love for advocating for diabetes and am currently taking online classes for accounting thru my local community college.

            I was incorrectly diagnosed type 2.  The doctor I was seeing was horrible.  I do not remember many details as I was so opposed to him.  I do clearly remember one Sunday afternoon when my blood glucose (BG) was “HI” on my meter meaning greater than 600 mg/dl.  I had ketones.  My mom phoned him on call.  His exact words were “Well she isn’t following her diet; I don’t know what to tell you.”  She was so upset, as was I.  No matter what I ate or sometimes didn’t eat, my BG would rise.  Come January 2004 I had lost over 60 lbs and I was very ill.  

For over 6 months my doctors kept telling me I just had mono.  I was always tired.  I could never drink enough.  I never felt full.  I had clear symptoms of hyperglycemia.
            In college I met a girl who had type 1.  She hooked me up with her Endo at Children’s Hospital Boston.  What a blessing this was.  January 22, 2004 I was correctly diagnosed as a Type 1 diabetic.  I was started on insulin and immediately began to feel better.  At that time my A1c was 14.9%!

            Things over the next few years were going quite well.  In 2007 I had asked my endo to try a insulin pump.  In September of 2007 I started pumping with a Pacific Blue Deltic Cozmo pump.  I loved it.  I was able to get much greater control over my BG levels, my A1c dropped below 8%!  The following year I started using the FreeStyle Navigator CGM.

            Since 2008/2009 I have been using a CGM (currently dexom).  Since pumping with the cgm I have been able to keep all my A1c’s under 7%, most in the 5% range without many lows or highs.  It is very hard work however.

            I have neuropathy and gastroparesis because of diabetes.  I strongly believe this could have been avoided if my first few years were properly managed.  But I deal with it and live my life to the fullest.  Yes I have had a few bumps in the road with diabetes, but I do not let diabetes stop me.  Yeah I will be honest it sucks, but I accommodate and make it work for me so I can be who I want to be.

            I am looking forward to blogging my experiences and talking about “hot” topics.

Happy Blogging!

Sunday, March 25, 2012


Studies show that after about 6 months of diabetes, the initial depression and shock
wear off. However, after the 6th or 7th year, depression strikes back in teen girls more
than in boys. I know this is true for myself, but what do you think? Do you see
depression more apparent? Or has the depression never left?

Saturday, March 3, 2012

Diabetes is often considered an "invisible" disease.  I may look just fine on the outside, but inside my body is in a fight with itself.  Someone shared this story with me and I thought it was very fitting and a great way to explain what goes on in a person who has an "invisible" disease.  The lady sharing the story has Lupus but you can replace it with your particular disease.

The Spoon Theory
by Christine Miserandino

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.