Crazy Life

Hello all!!!
I know I have not made a post in a couple of months but I have been BUSY! Many things have been happening and have happened!
   Earlier this year I interned for the American Diabetes Association (ADA). It was an AMAZING experience! I was able to work on the Tour De Cure which happened in June. I actually made a really good friend, Essence who also interned with me. I learned a lot from it and I am so thankful that I was able to do work for ADA.

 

 Also in June I turned the BIG 20!! FINALLY not a teenager anymore (haha). Still an awkward age but happy to say that I am officially an adult. For some reason I do feel way older than my age...

 

 In the summer I worked two jobs which was fun and tiring! I worked and still work at Hallmark (almost 4 years with them..) and then I was a nanny for a 9 year old diabetic boy. He is such a joy to be around and I LOVE that family! It is an awesome feeling knowing that his mom can trust me and know that I can really take care of him and know what to do when he is either low or high. He is like my little brother and even though we did get a little annoyed with each other (when our blood sugars were both high) it was an amazing and fun summer with him! :)

 

  I also went to diabetes camp this year! I was with the 10 year old girls and two of them I had for the third time! That was a fun and TIRING week for sure. Sleepless and long nights but so worth it!

   Now since school has started I am now in my third year in college at UC. I only have 3 more semesters and then I graduate! This semester I am getting the chance to intern at the Juvenile Diabetes Research Foundation (JDRF). I am more than excited to do some work for them! I am beyond blessed that I am getting all these opportunities before I graduate. I really can't wait to see where life will take me after these 3 semesters.  

   I also have been working with my really good friend, Hadley George, on our Teen With Diabetes Gala which is happening on November 15 at the Cincinnati Zoo! It has been such an amazing experience helping and planning for an event. I am so glad that Hadley came to me about this and I am so happy that everything is coming together! (For more information contact me or Hadley)

 
 So over all this year has been great and I really can't wait to see what else will happen this year! I hope that you all are doing well and that everything is going good!

~Stay Strong~
Evelyn

June 1, 2012

On this day two years ago, something life changing happened to me. Something that I will have to deal with for the rest of my life. I never thought anything so serious would ever happen to me. I was sent to the hospital because something was not right. On that day I was diagnosed with type one diabetes. Right after I graduated from high school and only a couple of days before my 18^th birthday I was going through this. When they told me that I was a diabetic I didn’t want to believe them. I didn’t have any feelings from this because I was just so in shock. I didn’t even cry. The moment in the room was just so silent that my mom didn’t even know what to say. So many things were coming up in my head. I just never wanted it to happen to me. Throughout these two years I have figured out who my true friends are. Some I lost and some I gained. My boyfriend even stayed with me through this. He came right to the hospital when he could and was there when I got out. To this day he still is with me and he takes care of me all the time. I am so beyond blessed to have a man like him who is willing to care for me. Now my friends…my truest friends texted me while I was at Children’s. And even to this day they are still my best friends ever. My newest friends I have only known for a year, and they are the most supportive people ever. When I first met them I did tell them about my diabetes. They didn’t care and they didn’t judge. They make sure that I am always feeling alright and I am so beyond blessed to have them. Now my family…They would do anything for me. They have stood by my side since day one and they continue to stay by my side. They are my biggest supporters and I truly do have the best family ever. This disease has made me into a strong person than ever before. It has changed my life for the best. It has made me figure out what I want to do with my life. This bad and terrible disease has actually made my life happy. Things happen for a reason and I really think that this did happen for a reason.

~Stay Strong~

Evelyn

"What is it like being a type 1 diabetic?"

So I saw this status that my friend Justine Perkins wrote and I thought that I would share it with everyone.

"What is it like being a type 1 diabetic? Imagine living a life where you have this huge weight on your back all the time. Its like you never really get to live. You are always in a state of fear because you never know what could happen. You don't know if your blood sugar will manage through the night. You don't know if you'll wake up. You feel like a burden to others because they have to look out for you. You go through crazy mood swings based on your blood sugar. Its a huge emotional roller coaster. Its life where you have to depend on a bottle of insulin to survive. Its a restraint. You cant always do what your friends do. You feel like no one understands you. Its a major responsibility, you have to grow up faster and learn to take care of yourself. People don't always realize that its a disease and it could kill you. But hopefully its not a lifelong battle. I hope they find a cure. And hopefully one day we won't have to explain how hard life with diabetes is but instead, what life without type 1 diabetes is like."

Being a diabetic is a 24/7 job. We worry constantly and I don't know about you, but I stress about it a lot. What if we don't check our blood sugar before bed? What could happen to us? There is that feeling of feeling alone and feeling like you are a burden to others. You need to tell people when you are around them just so that they know if something happens to you, but there is still that feeling that if you tell them then they are going to worry about you the whole time they are with you. I told my friends right away because my mood swings are crazy. When I am low I act crazier than usual. Then when I am high I get mad at the littlest things. I didn't want them to think there was something weird about me. Something that Justine said was "It's life where you have to depend on a bottle of insulin to survive". This statement is so true. We depend on insulin for everything we do. No matter what we will always need that bottle of insulin. I hope one day we wont have to depend on that bottle of insulin. Hoping for that day soon.

~Stay Strong~
Evelyn

                          

How do you feel when you're low?

So recently I have noticed that when I am low, lets say 61, I will drink something like juice or eat smarties and for some reason a couple minutes after I will treat a low feel lower. I’ll check again and I will be even lower, let’s say 55. I know you have to wait 15 minutes after you eat something to check again and then if you didn’t go up you have to treat it again. Well for some reason I will have no active insulin from my pump and it will take forever for my blood sugar to even hit 100. With this I feel so annoyed with diabetes right now. The feeling for being low is the worst feeling. When I am low I feel annoyed, impatient, frustrated, hopeless, tired, and many other things. It’s only when I am low or even high when I feel the most frustrated with my body. Sometimes I can’t even control my mood or my actions. I even look drunk when I am low because I really just feel out of it. There are times when I am low and I feel alone because no one around me can really understand how I am actually feeling at that right moment. Sometimes I just have to step out of the room of where I am and treat myself and just try to relax which can be hard to do when I feel different half the time. I was just wondering how you guys felt when you were low…. Do you feel the same way I feel or different? Just curious on how people can feel their lows.

~Stay Strong~

Evelyn

 

Guest Post: Meet Justine Perkins, who has type one diabetes!

Hi. My name is Justine and I have Type 1 diabetes. Having Type 1 means that my pancreas does not produce insulin needed to balance my blood sugar. So I have to give it insulin. Some type 1's take shots and some are on a pump like me.

Here is a quick example of what i do before each meal:

First, I check my blood sugar with a blood glucose monitor. Normal blood sugar range is between 70-120. 378 is too high, so I must correct for my blood sugar reading and carbs that I am about to eat for dinner. When my dinner is ready I take insulin thru my insulin pump. I have to count EVERY carb. Wash hands, Check Blood sugar, Calculate carbs, Take insulin, Then I eat. I do this for every meal. One of the things I dont like about diabetes is when my blood sugar goes too low. It scares me because bad things can happen if I go too low. There are a few different ways that I can prevent this. When I'm out and about I ALWAYS carry my purse with me. Yes, its a big pain with being a teenager because I always have a bag on my hip. My purse will always have my meter, a simple carb (fast acting such as skittles), insulin, extra pump supplies, extra testing strips and emergency supplies. Another way that I prevent lows is blood sugar checks throughout the night. I check at 12am, 3am, and 6am. I always get tired of checking during the night because i dont get a good nights rest. But if Im low, I will get a regular soda that equals 15 carbs, or skittles. If im too high, i give myself insulin though my pump. 160 is just about right to go to sleep knowing I wont drop unless I have been doing exercise. Besides having to manage my diabetes i am a normal teenager. I exercise, hang out with friends, etc but I have extra stuff i have to do. It gets annyoing because treated like you are "special" because you have to check your blood sugar, count carbs, etc. Some of my friends dont understand. When i will check my blood sugar they will always freak out. But im starting to get use to it. My family doesnt understand the difference between type 1 and type 2. They think that if I watch my diet and exercise all the time my diabetes will be "cured". But type 1 isnt cureable. Diabetes will NEVER stop me from doing anything I want. I wanted to be a Paramedic in the Army but I will be a Paramedic at the fire department. Life will be harder with diabetes but I can handle it. If anyone ever need a friend to talk to, feel free to email me: perkins.justine@gmail.com.  "Never Lose Hope."

Don't Give Up!

As you may know type one diabetes is really a huge thing to take care of. Everyday 24/7 we are constantly checking our blood sugars and giving ourselves insulin. It can be a very easy job since we do go through it every day but I know that there days where it can be a very hard job. Recently someone who is very close to me has stopped taking care of herself. It is so frustrating to see her go through this because you would think it could be easy to do. The more I have thought about it the more I kind of understand where she is coming from. When you are the only one around with type one diabetes you really don’t want to just get your kit out and check your blood sugar. You really don’t want to have to worry about it when other people are around so that they won’t have to stare at you or ask so many questions. Sometimes because of thinking about what others think of you, you decide to kind of hide what you have. The more I thought about that the more I was thinking that you shouldn’t care about what you have because it’s something that you have to deal with. You should make this terrible disease into something good in your life (try to at least!!). Make it about you being strong. When you look strong and feel confident about it people will look at you and think that you are. Don’t give up about taking care of yourself because you are strong, you are independent, you are the best person that you can be. Don’t quit and keep it up! You got this!

~Stay strong~

Evelyn

'If there was a cure right now, would you want it?"

Here is a question that I always get asked and I want to see how you would answer it. The question is “If there was a cure right now, would you want it?” Obviously we would all want this cure so that we would not have to go on dealing with this every day. I would love to have a cure so that I wouldn’t have to deal with my blood sugar during the day. I could eat and drink without giving myself any insulin. Then I got thinking…Diabetes has made me who I am today. It has made me independent, strong, unselfish, and many other things. It has made me to think that I got this for a reason. It has made me thankful for the life I have. It makes me see life in a different way because I honestly I didn’t think about others when I didn’t have it. I just thought that everyone who had it was just making up stories and just wanting me to feel sorry for them. Now that I have this I now realize that no, they weren’t making up those stories that they were telling me. They don’t want me to feel sorry for them; they want me to support them. I was just being selfish and not thinking about others. Now since anything can go wrong with me, to worry about if my blood sugar will go low and then I would go into a coma, or whatever I think about everyone, I think about what people go through every day. They could be suffering or dealing with a disease and I don’t want to judge them and not care about them. So my answer is this: yes I would like a cure, but if there was a cure right now I don’t think I would be ready for it.  

~Stay Strong~
Evelyn

Having a disability

"Disability simply refers to something that influences how people treat you and their assumptions. It's not the individual, it's the product of their environment."

My mom posted this quote in a status over Facebook and it really got me thinking. With my disability I have been judged in many ways. When I say that I have this disability to people they kind of look at me like I am different. Yes I am different but you can not tell if I am different. I am like everyone else but my pancreas does not work. People think I can not have sugar, chocolate, or any sweets. Just because I have this disability that people make fun of and say diabetics are "fat", I can have anything I want. I did not get this disability because I ate so much sugar. No one should assume it is because of my weight or from eating so much food. I am not even sure why I ended up with this but it isn't because of my weight. You should not judge me or anyone with this disability or a different disability. I can not help that I ended up getting this. Diabetes does not define who I am. I am me. I am not this disability. I am a regular college student that goes through so much like an average college student. No one should treat me any different because of this. Just because I have this thing attached to me that looks like a pager does not mean I can not do the things that other people do. Don't judge someone by what they look like or what they have. We all have something going on with this and there is no reason to judge or assume anything of anyone. I have this disability, but this disability does not have me. 

~Stay Strong~

Evelyn 

The Diabetic Monster

So for anyone who just "liked" this page for The Diabetes Monster I just wanted to let you know what this is about! This is something where you can just vent to other diabetics. It's something that you can meet knew people from anywhere and everywhere! Even if your are not a diabetic and you "liked" this page and/or reading this, this is a way that you can try to understand how we feel. This is a way that you can show us support. Diabetes is a monster to us. It tries to destroy us in every way but we are all strong enough to fight this monster! Anyway! I will be blogging, tweeting, and facebooking through The Diabetes Monster so we can all get connected and be there for each other! So stay tuned! :)
~Stay Strong~
Evelyn

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.

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.

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.

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.

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 2^nd appointment and 3 month follow up on July 2^nd 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.