Saturday, May 18, 2013

Dream Diabetes Device Wildcard

Today's assigned topic is Diabetes Art - Saturday 5/18.  Because of my parents being in town at the last minute I did not have time to come up with something.  So I picked the wild card topic of Dream Diabetes Device.

I hate carrying around tons of stuff.  I hate having to have a large purse for my meter, syringes, back up pump supplies, insulin, glucagon, low treatments (usually Level Gel), then inhaler, epi pen, etc.  Then you have the house/car keys, wallet, cell phone, etc.  It adds up and gets heavy.

My dream device would be an all in one.  An insulin pump/CGM/glucometer/smart phone.  It would be an "artificial Pancreas" pump so I didn't have to carry around the glucagon kit.  The CGM sensor and infusion set would be one site combined together that sticks well, does not leave a rash, etc.  This would be no larger than any current iPhone or android smart phone. 

I would like to see it in both iPhone and Android OS so it attacks users of both phone lines.  I would like to see it available on all cell phone carriers, at a reasonable cell plan with data.  All insurance companies must cover it at 100% and those with out insurance there needs to be patient assistance programs to have sponsors buy the person their pump device.

I would like this to have the option for children to text the parents their bg's and other info needed.  There will be an option to send the data from the device to the endo office for review.  Oh and this will work perfectly!

The way medical technology is going, I do thing this kind of device in the future may be possible.  Lets cross our fingers that someone will be reading all these "Dream Diabetes Device" blog posts and take our ideas and develop a product.

Freaky Friday - Friday 5/17

Friday's Topic was Freaky Friday, yes I know it is Saturday.  I spent the day in Hershey with my parents who are in town visiting.  We left bright and early and I did not get home till about 10 pm. Long Day!  Today we are headed off to Amish land so they can see some places there.  They wanted to eat at Shady Maple and then go to some Amish stores to get some baked goods.

If I could trade Diabetes for any other chronic medical condition, I am honestly quiet not sure what I would pick.  Everything has its good and bad sides.  I know many people who will say when finding out I have T1D "at least its not cancer".  But then I met a girl who had cancer.  She was 14. She was my roomate at Childrens hospital when I was a patient there about 8 or so years ago.  We got to talking and she asked what I was in the hospital for.  I told her I had diabetes and was just diagnosed with asthma.  I was in the ICU for a bit then the ICP (step down) and now on the regular floor and went thru what was happening.  Explained how the steroids to keep me breathing put me into DKA and how the two were not working well together. 

This brave little girl went to tell me about her leukemia.  She told me how she has been in and out of the hospital since she was about 4 getting treatments.  Then I said I was sorry she was sick.  The little girl said to me something well don't be sorry because I am chronically sick too and she could have more issues than just cancer and was thankful it was just cancer.  She went on to tell me how she meet all these cool celebrities, new friends she made in the hospital, positive experiences she has had because she had cancer.  This really stuck in my head.

I always did the what if I had this instead of Diabetes stuff.  After talking to this young girl she completely changed my attitude.  I no longer want to trade T1D for another illness.  I am thankful I just have diabetes as much as it sucks at some times.  This little girl made me realize no matter what disease you had you will always find the downsides of it and instead to pick out the good.  So now I look at all the positive Diabetes has brought me and I roll with the punches  as they come along.

If I could do one thing I would like to take all the diseases away from all these young children and I will roll thru them myself.  Even if I could just do that for one day.  Having every possible disease for a day and every child with them being disease free would make me happier than me trading diabetes for another illness.

People like this young girl that I was roomates with in the hospital and DOC members have changed my opinions on others with chronic medical conditions.  Before I got "sick" I though people made these things up for attention, people caused themselves to be fat, diabetes was your fault, etc.  But having roomates who were ill and the DOC and my own personal medical experiences has helped me grow and realize that these problems are not your fault.  I look at people with chronic medical issues, over weight, etc as strong people.  They may be weak health wise, but to keep trucking along and keep at it I give them a lot of credit.

Thursday, May 16, 2013

Accomplishments Big and Small -Thursday 5/16

Accomplishments Big and Small -Thursday 5/16

I was diagnosed with Diabetes in 2002.  My first large accomplishment was going on an insulin pump and CGM in 2007.  But the biggest accomplishment I have so far is since pumping my A1c's have dropped greatly (pre pump was in the 11's) and since 2008ish All a1c'a have been 6.0 or under!  My average is 5.6%.  I can safely do this with out many lows or highs.  I keep tight controls on my CGM, basal test often when I notice trends and adjust rates, and correct anything under 90 or anything over 120.  Not everyone can accomplish such tight control, but it is a blessing that I can do so as it has greatly helped my complications staying at bay.  I have gastroparesis so the dual and square wave bolus feature is a life saver.  Also keeping my blood glucose as close to 100 as possible keeps my neurpathy well controlled with out needed medications. It is a lot of work, but it pays off well.

Sorry this is so short and sweet.  At the last minute (less than a weeks notice) my parents decided to drive down today and stay for the weekend as my Mom had today and tomorrow and the weekend off work (not often she gets 4 days in a row off).  So I spent the evening with them, and will be spending the weekend with them.  Love having family around.

Wednesday, May 15, 2013

Memories - Wednesday 5/15

Today's topic for Diabetes blog week is Memories.

I don't want to discuss bad memories of diabetes.  I try not to dwell on those.  Yes they are important to who I am, but I much rather talk about the good memories.

My best friend / "twin sister" Jody I meet online in a diabetic message board forum.  We meet in the spring of 2004.  Just last night we were chatting adn I cannot believe next year it will be 10 years since we met.  She is truly my best friend, sister, our parents joke and say we were twins separated at birth.

Jody and I share many things in common besides T1D.  We are the same age (6 months apart, she Jan, me July of the same year.  We have a similar childhood history of things that happened.  We have similar likes and dislikes.  It is so funny how much in common we share.

Even though I don't see Jody often or go days to weeks with out talking, we pick up right where we left off like there was no missed time.  We are there for each other for the good and bad times.  We are comfortable confiding our deepest secretes in each other.  And 9 years later we are no different.  We both had trouble making and keeping "real life, local" friends.  But for some unknown reason we were meant to find each other and have one of the strongest relationships I think friends can have.

Now the hugest problem is she lives in England, I live in the United States.  We cannot physically see each other as often as we wish.  But we both had the opportunity to go to each-others countries and visit with each other.  Which is super awesome.  How many can say their best friend lives in another country and have the opportunity to visit.  Now it is expensive to visit so we cannot do it as often as we wish, but we try to see each other in person every 2 years, if not sooner.  (a two week vacation costs a good $2k USD). 

I am super thrilled because Jody is coming to NYC with her sister and friend and I will spend a weekend up there with her.  This means the world to me. 

I am very thankful for diabetes and the memories it has created.  In addition to Jody, because of diabetes I have met some wicked awesome people, not only in this country, but world wide.

Tuesday, May 14, 2013

We, The Undersigned - Tuesday 5/14

We, The Undersigned - Tuesday 5/14

Today, day 2 of blog week, the topic is creating your own petition.  This is a good question to consider.  There are so many things I would love to petition to change about Diabetes.
We, the undersigned, petition the United States Government for free diabetic health care to all diabetics.  No one person should be denied medical care for a lifelong disease.  Diabetes is extremely expensive.  With the downhill economy, more and more diabetics are left without health insurance and funding to meet their medical needs.  Many families face life-threatening situations because they cannot afford their or their child’s insulin.  Choices like buying a vial of insulin vs. putting food on the table are being forced daily.
Lets look at the typical diabetic’s cost for one month on MDI (multiple daily injections).  A diabetic on MDI would need at least one vial of rapid insulin and one vial of long-acting insulin per month.  Each vial retails for about $150.  Insulin syringes retail for about $25 a box of 100 count.  Test strips average $1 per strip.  So diabetics on MDI need at least 4 shots a day (1 long acting, 3 rapid with meals) if their blood glucose levels are in their range (not needing a correction for a high.  They would need to test a minimum of 4-6 times a day…lets average this and say 5 tests.
                Cost of Insulin:  1 vial Long acting @ $150 + 1 vial rapid @ $150 = $300
    Long Acting Insulin (Levemir/Lantus):  1 shot per day x 30 days = 30 shots
                Rapid Insulin (Novolog/Humalog/Apidra): 3 shots per day x 30 days =90 shots
                Total Minimum Shots:  30 + 90 = 120
Insulin syringes come in bags of 10 with 10 needles in each bag.  A box of 100 syringes contains 10 bags of syringes.
                For 120 shots, 1 box and 2 bags (of 10 count) syringes would be needed.
                Cost of each syringe:  $25/100= $0.25
                Total cost of each syringe:  120 x $0.25 = $30
Test strips come in boxes of 25 count, 50 count, and 100 count.  The higher quantity the box you get the cheaper the strips are, but on average it is $1 a strip.
                Testing:  5 times a day x 30 days = 150
                Total cost of test strips:  $1 x 150 = $150
Total cost of Diabetes supplies for 1 month on MDI
                $300 + $30 + $150 = $480
This is the minimum cost for diabetes supplies in one month.  How many people do you know that have an extra $480 a month lying around? Not many.
Other factors that will increase the cost:
                Being on an insulin pump
                Being on a CGM
                Needing more than 4 shots per day (which is most on MDI)
                Needing to test more than 5 times per day
                Having to see a doctor
                Needing Blood work done
                And more!
It is very sad and unfortunate how many people are denied health insurance or medical care because of their inability to pay.  I know there are emtala laws stating in emergency situations you are allowed to be treated regardless of ability to pay, but so many won’t go get help because they do not want to be faced with the high bills emergency rooms and hospitals run.  Regular doctors’ offices do not have to follow these emtala laws.  But if all diabetics were allowed to have regular health care and access to their needed supplies, they would not be facing these situations.  I have many friends, and myself included, who have gone into medical debt.  No one should be in debt over a medical bill.

Monday, May 13, 2013

Share and Don’t Share #DBlog Week Day 1

Since my spring semester has wrapped up at college I decided to take the challenge and participate in blog week.  Today’s topic is  Share and Don’t Share- #DBlog Week Day 1.
Most often we are lucky if our 3 month checkup endo appointment is 30 minutes.  Many only get 15 minutes.  I recently moved 6 hours away from home and only had 1 endo appointment which was a good half hour long, but also my first patient appointment.  I go for my 2nd appointment and 3 month follow up on July 2nd so I will see how much time I get.
What bothers me the most is that I pay a $40 copay to see a specialist, in my last appointment was a NP, and in the past I was lucky if I had 15 minutes with the NP or doctor after waiting over an hour in the waiting room.  If they see 4 people an hour back to back for these 15 minutes, they are making $160 an hour!  This in my opinion is highway robbery.  No of course copays vary among insurance companies and their plans.  I really feel badly for those without insurance though as how do they afford these valuable appointments. 
Now what I wish I had more time to share about all the good things D led me to.  Like all the cool people I have met in day to day life, online, at D camps/conferences/events/etc.  How these people have help molded and encouraged me to be the person I am today.  My best friend (who our parents jokingly say we are twin sisters separated at birth) I am so grateful for her…she lives in England, me in the US.  I have many world-wide friends.  There is just a common language us D families share.
I would like more time to learn more advance skills.  I am very anal with my D management.  I do not like to go below 90 and over 150, I like it best when I hover around 100.  I want to learn more how to make my cgm as useful as it can possibly be.  I want to learn to make the best out of my pump.  I want to improve and have the best control possible.  Sadly there is not enough time for this education (or maybe it isn’t available everywhere) in our 15-30 minute checkups.
I would like to be able to share my daily challenges with my D team.  I want to learn tools to overcome them.  Like how to manage buffets with gastroparesis, how to handle family parties where the food isn’t what I normally eat, etc.  There are so many more advanced skills others have than me that I want to learn.  But there is no time for the D team to teach them.
Since most D teams do not have the time to cover these things I have turned to other D families, the DOC, and other long term D friends and have developed my own tricks and tools.  I would love to share these with my D team.  Sadly there is just not enough time.  Most endo offices are over loaded with patients.  There is such a huge need, and not enough endo’s and cde’s to cover the high demand.  I think pediatric endocrinology is affected the most, but over all we are lacking doctors who want to specialize in Diabetes.  People do not get the time they deserve, some people cannot even afford to have access to a D team.  This is something that should not be happening, but sadly it is.

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.