Friday, March 15, 2013

Life with Diabetes is Exhausting

I know I have not been blogging as often as you and I both would like.  I been extremely busy with school work.  I finally have something I just wanted to share with you all. 

I love to talk about Diabetes.  I try hard to make sure everyone I come across is made aware on something new about Diabetes they did not know or had misinformation on.  I wrote a personal expository essay on how exhausting Diabetes is.  I hope you all like it.

I could have wrote for ages, but I need this to be short and sweet to meet the requirements of my instructor.  I started with 16 pages, and slowly cut it down over the past month to 3 pages! I hope it does what I intended it to do.  I do not have my final grade back yet so not sure if it accomplished what I wanted.  I did meet with my teacher about this paper in the drafting stages and she did say she was very interested and never read a paper like this before.



Life with Diabetes is Exhausting
            Many people consider medication and medical technology as cures, not a treatment. Type One Diabetes is an autoimmune disease where the body attacks the cells in the pancreas, which produces insulin, a hormone that helps a body change sugars into fuel. Without its own insulin production, a person with Type One Diabetes needs insulin, through an insulin pump, which is not a cure for Type One Diabetes. Diabetes is a disease that demands more of our money and energy.
Life with diabetes is not made peaceful or normal with insulin treatment. Living with Type One Diabetes, I require insulin 24 hours a day seven days a week until the day I die. I preprogram my pump to provide a fixed rate delivered every hour. This method, basal insulin is persistent delivery all day and remarkably similar to how a normal working pancreas functions. When my blood glucose is high, or I eat, I would need a bolus. To determine how much my body needs for insulin, I need to check my blood glucose several times a day. I check my blood glucose upon waking up, before every meal, two hours after every meal, every two hours if I have not eaten recently, before starting the car to drive, and if I think my blood glucose may be high or low. Without testing, I do not know what my blood glucose level is. This can be extremely dangerous, and life threatening as I can have too much or too little insulin. In addition to blood testing, every three months, I need to have a blood test called an A1C, a 90-day average of blood glucose, and I have to see my endocrinologist, my diabetes nurse educator, and my nutritionist. The team downloads my insulin pump and meter readings to review and makes suggestions for adjustments in my insulin dose ratios. This can become difficult because of your body’s needs for insulin changes with daily life, aging, weight gain/loss, stress, and illness.
Insulin and supplies are expensive. I cannot reuse insulin or its supplies. The brand of insulin I use, Apidra, averages $150 a vial. I use four vials a month. My insulin pump costs $6,000-7,000 depending on where purchased. Then the infusion sets (like an IV, but instead of in your vein, it is in your fat) are $120 for a box of 10. The reservoirs (what holds the insulin) for my pump are $10 for a box of 10. I use 15 infusion sets and reservoirs per month. Blood glucose meters range from $20 to $100 per meter. Testing strips average $1 per test strip and I use 400 test strips per month. My continuous glucose monitor costs $1,200 to get the system, and the cost for four sensors is $400. One sensor lasts seven days. Insurance for me covers these costs at 80%, but I still spend $200-400 a month.
Diabetes research funding is limited. New technologies are continually released in the diabetes field. There are many pharmaceutical and durable medical supply companies involved with diabetes. These companies are constantly researching how to make a stronger item, like blood glucose monitors and insulin pumps. In my days of using an insulin pump, on average every year at least, another product comes out, or a business releases an updated version of their product. Instead of making better products, which have little new differences, I feel more money should be put into research for a cure.
With a cure for diabetes, many jobs will be lost. Diabetes is an epidemic, and because of that there are a lot of jobs in the diabetes market. Doctors, nurses, insurance companies, pharmaceutical companies, and pharmacies, to name a few, are affected if there is a cure. Curing diabetes will cut jobs and money brought into these areas as people with diabetes will no longer need their services.
Life with diabetes is particularly tiresome. It is remarkably easy for me to get overwhelmed and just want to give up. Even though diabetes is part of my life and I may seem like it does not interfere, it is a lot of work to keep myself healthy. Besides worrying about testing, insulin dosing, and doctor appointments, I also have to worry about where the money will come from to buy the supplies I need. Instead of improving medical technology, attention should be on finding a cure for diabetes.

Tuesday, February 26, 2013

Cloud Nine

I am so floating high up on cloud 9.

I woke up this am wishing I just could go back to bed.  6 am just comes too fast.  I did not want to go to school, I wanted to sleep.  I resisted the urge, got up, and off I went.  I catch the 6:39 am bus to go to school. 

Fast forward a few hours and I'm on my way home.  I come home and Jan (roommate/friend) tells me she saved the paper as there was an article on Juvenile Diabetes she thought I would be interested in.  I was excited. 

I look at the paper.  It is the front page of the living section.  It is about a mom who has a T1D daughter on the pump and cgm.  The front picture showed her Dexcom G4 (yes I'm very jealous as I'm still using the Seven +) and a picture of her sister testing her blood glucose.  The article was about their family and how the mom has a FB group for  locals  and even runs a T1D support group at the local hospital.  In the article was information on the FB group, when the support group meetings are held, and an e-mail to contact the mom.

Right away I requested to join the group on FB and I e-mailed the mom.  I cannot tell anyone how much this made my day.  Most of you know I was living in the Boston area and recently moved to Pennsylvania.  I was going to local support groups and events, mostly an insulin pumpers group.  I was so sad to leave that all behind.  I cannot wait to attend these meetings and get to know my local D peeps. 

Now my day has been made.  It is perfect.  Some may think of this a a small thing, but its the little things that make the world so great. 

For those interested in the online version of the article you may check it out here.

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!

~Kris

Sunday, November 18, 2012

Introduction




            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!
Kris