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How Do You Explain Diabetes to a 4 Year Old?

Last week when I was home, one of the most important things that I wanted to do was spend time with my 4 “nieces” and also my niece.  Let me explain that in detail quickly.  My “nieces” are actually my cousins, but my aunt was more like a sister to me because of our closeness in age so her 4 daughters have always called me uncle.  My actual niece is almost 6 months and she is my brother’s daughter.  Ok, that is clarified.  My “nieces” are 10, 8 and the twins are 4.  The 10 year old knows that I have diabetes, but doesn’t totally get it (but I’m 25 and I don’t either).  The 8 year old knows I have something, but not really sure, she used to just say that “Uncle Chris is sick.”

Well one day that I was there I took my pump out to bolus and one of the twins saw it and she said, “what is that?”  So I thought, should I say, “it’s an insulin pump” or should I say something that it is medication for me. I decided to tell her that it was an insulin pump for my diabetes and that it keeps me healthy.  I didn’t know exactly how to explain it that it would make sense.  I thought about coming up with a way to use a Disney movie or something that she liked to have it make more sense for her, but the question never came back up again while I was home.

How do you explain it?  I know there are mothers out there that read the blog, and fathers as well.  How are you able to explain diabetes to small children, especially your children that are not diabetic.

Thank you in advance.

High Blood Sugars at the Hockey Game

Last night I went to the Florida Panthers vs. Washington Capitals hockey game. It was embarrassing to be a Panthers fan last night because they got their butts handed to them, to speak in nice terms. My account rep had upgraded my seats for me for that game so we were sitting in the Lexus Club level where the food options are a lot larger than at the regular concession booths. This isn’t sounding good for somebody with type 1 diabetes who just had food court Chinese food about 2 hours prior to the game. Can you see where this is leading?

Amanda was hungry, so I told her to get whatever she wanted and I would just finish what she didn’t eat because I wasn’t really hungry. I tested my blood sugar before she ate and I was at 307. High, yes, but I wear an insulin pump, I can correct that easily. I take a correction bolus and wait about 5 minutes before I do my little insulin check. About 10-12 times a day I will rub the infusion set and then smell my fingers for insulin. Amanda tells me that I need to be less obvious when I do it, because I look really weird, which I agree, I probably do.

When I felt the infusion set, it was soaked, so I knew I was going to smell that disgusting smell of insulin, and I did! In a normal situation I would have freaked out and been worried that my sugar is going to stay high. Normally, I would just bolus like 25 units knowing that not all of it was going to get absorbed. Luckily, I had inserted an infusion set on my backside a few nights ago, but since my sugar was high at the time I put a second one in on my stomach. When my sugar is high, infusion sets on the butt don’t work. So I didn’t take that one out, so I was able to hook up the tubing to that.

Now the hardest part is trying to figure out how much insulin my body actually did absorb. I bolused at about 90% and when I went to bed I was at 195 and woke up at 156.

Now for a quick update on my cough and ear thing that I have had going on forever, it seems like. My ear is still clogged, the nasal spray I was prescribed doesn’t work and when I try to clear them myself, it just makes them more clogged. I am going to try the Neti Pot again tonight and see what that does for me. I have an appointment on Monday, so we will see how that goes.

Refilling a Reservoir at Work

Yesterday I had to refill my insulin cartridge at work and it made me think about a couple of things.  First, what reaction am I going to get from people who walk by? Why do I have two vials of insulin in my laptop bag and both have 2 refills left in them?  Why is this thing so damn loud when it is priming?

Well here were my answers to all of those questions.

Reaction from People

First and foremost, I don’t  really  care what their reaction is to it.  I am doing something that I need to do in order to survive, so get over it.  Do I look at you weird when you breathe or when you drink water or when you eat?  No, didn’t think so, so keep on walking.  But I do find it funny what most people say.  The most common phrase I hear is, “What are you shooting up or something?”  Some people mean it in a sense of am I shooting up insulin, but I think we all know what most others are referring to, obviously a joke.  I usually say, “Well, I’m already high, so I need to shoot up some more.”  That is when the other person doesn’t get the insulin and high blood sugar reference and thinks that I am just making a drug comment back to them.

What kind of reaction do you get?

Two Vials of Insulin

When it comes to insulin, I try to have only one open vial at a time, but that tends to not happen very often.  The reason is usually that I open one and put it in my laptop bag because that thing goes with me to work, home, and travel.  That way the insulin will be with me at all times.  Then there is usually one on my desk at home, maybe it’s empty and I forgot to throw it away, so when I see it, I think that I just finished one and go and open another one.  As soon as I used it to refill the reservoir, I throw it in my laptop bag and now I have two opened in the same location.

Do any of you do this as well, or am I just being a bad diabetic?

Loud Priming

The last part of what was going through my head was why this insulin pump is so damn loud when it is priming.  It beeps so many times, and it is extremely loud, so when my co-workers are working, they hear it beeping and then all the questions start.  Normally I don’t mind the questions, but when I am busy and trying to get work done so I can get home and start working on some other clients work, I’m not usually in the mood to lecture on diabetes.

Do you all refill right at your desk or do you go to restrooms or cars, or somewhere else to take care of it?

Just a Blah Sunday Morning

This Sunday morning has not had the greatest start to it so far.  For one, I had a high blood sugar all night long.  Partially my fault, and partially because a bad site.  I changed the site this morning and my sugars are still a little high, but slowly coming down.  I hate eating when I have a high and am trying to correct it, but I had just woken up and there was sausage and gravy over biscuits waiting for me downstairs, so I just had to.  The weather outside is not very nice, not bad, just not nice.  It is cloudy and just looks, blah.  I shouldn’t complain though because it is about 75 here today.

To add to that I have this annoying cough that won’t go away.  I’ve had it for about 2 days, but now it is at it’s worst.  Amanda has been sick with a little cold, so I think I am picking that up as well.  I’m hoping it calms down a little for dinner tonight.  It is Amanda’s grandmother’s birthday so the whole family is heading to a local pizza joint for dinner.  Today is also another big day in my sports world, no not the Pro Bowl.  Florida Panthers best player, David Booth makes his return today after being injured with head injuries since October.  The worst part is that the game is home, I have tickets, and I am skipping it for the family dinner.

Speaking about sports, last night my alumni Florida Atlantic University played a women’s / men’s doubleheader in basketball against their rival Florida International University.  This is a big game in itself, but even bigger last night.  Former Piston’s star, Isiah Thomas is now their head coach, so of course the FAU fans were getting on him big time about his little mishap while being the Knicks coach.  FAU kicked butt and won.

One final thing, I watched the Julie & Julia movie last night, it was ok.  I liked the part of the movie when she was blogging, but the France junk I didn’t like.

Well, my coffee is out, so I need a refill and I need to get back to work.  Had a few proposals get denied, so time to get working on some new ones.

Hey JDRF & BD – This is What I Want in an Insulin Pump

All this press about all these new technologies and studies and companies joining up with non-profits to do this and to do that, and blah blah blah.  At first when I read the post by Amy from Diabetes Mine about JDRF and BD joining forces, it instantly just reminded me of the post I just had last week about why there will never be a cure! Next, it made me think, well what exactly is it that I want from an insulin pump or what do I want to have in order to manage my diabetes.  This is not like a Jetson’s post.  I am trying to keep this stuff logical and something that can happen in the near future.

Easy to Use

The very first thing that I want is for the device to be very easy to use.  Now that all pumps have built in carb counting and insulin suggestions, it makes life so much easier.  I love that they calculate how much active insulin there is.  Not too many buttons, just 2 or 3 at max to do what I need to do.

Convenient

What I mean by this is that I want to be able to use my iPhone to link with my pump.  My iPhone is my life, literally.  I work from it, I communicate with family, Amanda has one also so we have apps that easily keep us in touch and on the same page with each others calendars etc.  I want to be able to just pull out my phone at the dinner table or at a restaurant and hit a few buttons and then bam, there goes the insulin.  I would like to also just have to use my phone as a meter, not just anyphone, because I know there are phones out there, but the iPhone.

Tubeless

I still use a Medtronic Paradigm, so I have never even used the tubeless / wireless OmniPod yet.  The number reason that I don’t is because I use about 120 some units of insulin a day.  That only holds 200, so I would be changing the pod every day and a half.  I would a pod to be able to carry, let’s say, 600 units of insulin.  I basically only want to change reservoirs and infusion sets, or pods just once a week.  It’s less work I have to do and less garbage and sharps containers I go through.  Charge the same price, it doesn’t matter.

CGM Built-In

I want the CGM and the pod or infusion set to the be the same insertion.  I don’t want to have to wear two separate things.  Very clear on that.

Well, that is what I want in my insulin pump.  I know some of these things exist, but not all in the same pump.  So, when JDRF is giving their millions to these companies, I hope they have spoken with diabetics themselves on what we want, not just what they want to create and think will make life easier.

What do you want?

Diabetes Inventory Day – Time to Count

Today it is diabetes inventory day.  How often do you do this?  I usually do it once every 3 or 4 months just to see how much I have and how much I will need to re-order.  Typically, I have a lot more infusion sets than I do reservoirs because I don’t change my site everytime I fill a new reservoir.  This is mainly just due to laziness.  Sometimes it is because I just can’t do it.  I may be driving and filling a new reservoir, or at work, or somewhere that I just don’t feel comfortable or have the opportunity to change the infusion set.  When I get a 90 day supply of my pump supplies the reservoirs are usually gone in those 90 days, but the infusion sets usually last about 5-6 months so I always have enough infusions.  Do you re-use your reservoirs at all?  I do from time to time just so I don’t run out.  Right now I don’t have insurance (looking into picking up Cobra), so I doubt I will be buying supplies any time soon.

I plan on counting everything diabetes related that I have.  Test strips, lancets, syringes, pen needles, infusion sets, reservoirs, sensors, IV prep pads, IV dressings, alcohol swabs, and anything else that I have in my diabetes cabinet.  I am hoping that I have enough of everything to last me at least 90 days because most companies will give you insurance after 90 days of employment.  It’s ironic that I worked for a company that helped uninsured people and now I am one of those uninsured.  My main concern is being able to get insulin.  I really need to work on exercising and eating less so that I use less insulin, especially until I am insured again.

I have no excuses anymore for not going to the gym.  I don’t have a job right now, so I have all the time in the world to go, but I am constantly doing things on the internet now.  These are productive things, so I’m not just sitting online all day looking at Twitter, I am trying to get things accomplished and do work on my clients sites.  That’s also one reason that I have decided to do the diabetes inventory later today because I have the time to count each and everything that I own.

I’ll give all the numbers tomorrow.

DRI 2.0 Connecting the Community – My 2 Cents

dblogI was excited for a while to attend the Diabetes Research Institute’s 2.0.  This conference shows me that the people working towards a goal are finally listening to us web diabetes bloggers.  The list of attendees was amazing.  Just to name a few, Kerri Sparling, Manny Hernandez, Allison Blass, Scott Strumello, Gina Capone, and Sara Knicks.  This was just a one day conference and I unfortunately not be at all places at once but here is my recap of the event.

The day started off great.  The free coffee was spectacular.  Morning started off with finally meeting Manny.  What a great guy he is.  Just as nice and genuine in person as he always has been online.  We briefly discussed how awesome it is that the DRI is connecting with the diabetes community and not just speaking with doctors and researchers.  Manny Hernandez_Chris StockerManny was also very helpful in giving me some key insight about Cobra and certain people that I should speak to in order to get some better information about it.  I told him that with not working at the diabetes company anymore, it felt weird to be at a conference as an attendee and not behind the booth working it, I actually liked it better.

After the breakfast, or lack there of in my opinion, we were herded off into the next room to hear the lectures and updates from three of the top researchers in the world.  To introduce the three speakers was Dr. Nemery, she is a south Florida pediatric endo that is one of the best out there.  She finished her introduction by saying, ” my goal as a pediatric endo is to not have to treat my patients with insulin.”  Well said.  The first speaker was Camillo Ricordi.  It was very difficult to understand his accent, plus he spoke to us like we were also scientists and doctors, so it was tough to understand what he was talking about.  The main thing that I understood from his lecture is that insulin producing cells generated from human embryonic cells protect mice from diabetes.  That sounds like a good start to me.Ask the Researchers_DRI

Next up was Luca Inverardi.  Once again, this lecture was just as difficult to understand.  I believe that the DRI videotaped every session and plans on putting it up on their website or having the videos e-mailed to the attendees, I will find out and you all know.  The last speaker before the next session was Antonello Pileggi.  Now, by the time he started to talk, I think the whole crowd was becoming hungry, very hungry.  It was becoming difficult for me to concentrate because my stomach was taking over my brain.  The next session was the most informative in my mind.  “Ask the Researchers”

One of the first questions asked was asked in a “dummy” type of way, which was better for the people in attendence.  A lot of the research that is done can be classified into two parts, there are the “attacker” cells that cause diabetes and then the “victim” cells that get killed which causes diabetes.  The question asked why all the research is done figuring out how to help the victim cells, but why isn’t research being done to stop the attacker cells?  The scientists discussed that there is research going on in that area, but it doesn’t look as successful as the research being done on the victim cells.  Dr. Jay Skyler is one of the worlds most respectable doctors / researchers of diabetes.  Someone had asked a question on why there is such an epidemic of diabetes now and although there were a lot of answers Dr. Skyler describe it as there being a lot of cases of Type 1 plus type 2, an overweight child with type 1 which makes them become even less insulin sensitive and causes type 1 at a faster rate.  I am not sure how this next statement relates to diabetes, but he talked about how foreign countries feed their young feces in order to expose them to germs at early ages.

The next question was the mFood from DRIost important to me because I had heard so many different numbers and percentages.  “What are the chances that a child of a type 1 will also have diabetes?”  Well here is the breakdown.  If the father has diabetes, then there is a 6% chance, if the mother has diabetes then 3% and then if both parents do, it is 15%.  The reason that the 3% difference is there between men and women is due to unexpected abortions.  The final question was asked about an artificial pancreas.  Although an artificial pancreas can become a great tool in management, it is not a cure.  There is one main reason why.  In type 1 diabetics, when we eat the insulin that we then bolus with, or the artificial pancreas releases will never catch up to the food.  Meaning that 2 hours after you eat, your blood sugar may look normal, but in between those 2 hours your blood sugar has spiked which is still causing high blood sugar numbers.  In order to fix this, you must be able to anticipate the food that you are going to eat.  With an insulin pump or MDI even, you can do this.  You can count your carbs before eating and bolus, 10-15 even 20 minutes before the food touches your mouth.  Which, when lunch time came at the conference, we didn’t know what was for lunch until it was right in front of our face so there were 4 diabetics at my table all wondering when and how much to bolus, not a good move on part of The Signature Grand.

The final part of the conference, well for me at least because I had to leave at 2 p.m. to get somewhere that I had plans for a long time to be at, was about connecting the community and involved a panel with Jeff Hitchcock (Children with Diabetes), Manny, Scott Strumello, Kerri, and Ellen Ullman also with Children with Diabetes.  There were a few questions thatConnecting the Community Panel were prepared for them about how the diabetes OC has helped them, why they started, and advice tips from them.  A few quotes and answers that I really liked from each of them are listed below:

Scott – Diabetes is too much about glycemic control and not about the other feelings that go along with it.

Kerri – There was only bad things about diabetes, there just had to be more to it than that.

Jeff – We all seem to be invisible so this gave us a voice.

Ellen – As a parent, it gives you a chance to vent because you don’t want to do it in front of your kids.

I hope that this was somewhat helpful.  You can check out the other’s blogs as well because I am sure they will have some updates also.

Have a great Monday.

Is Diabetes a Disability?

Here’s a question for you: Is diabetes a disability?  This question came up while I was reading an article in the October issue of Diabetes Forecast.  There is an article titled, “Cracking the Case.”  Long story short, Jeff Kapche was denied a position at the FBI because of his diabetes.  He filed suit against them stating that they didn’t hire him because of his diabetes.  The FBI said that his diabetes is not a disability because he manages his diabetes well.  The court favored Kapche.  The case is still is heading back to the Federal Court of Appeals for another review.

There is no easy answer to this question, it may seem like there is, but there isn’t.  Let’s look at it from all sides.

Diabetes IS a disability

When you have diabetes(type 1) there are certain things that you must do in order to live a healthy life.  You must check your blood sugar, take insulin whether it is from an insulin pump or syringe, be able to have access to glucose in case of an emergency and many more things that we don’t have to get into at this time.  This can definitely hinder your processes of doing normal day to day or daily job tasks.  If you are working an extremely physical job then your blood sugar is more likely to drop faster, so this is where diabetes can be considered a disability.

Diabetes IS NOT a Disability

Even with all of the things that you need to do in order to properly manage your diabetes, they do not have to hinder your daily life or your day to day tasks.  If you are doing the things that you need to be doing, then you can control your diabetes which does not allow it to become a disability.  Whether you are wearing an insulin pump or taking multiple day injections (MDI), you can control your levels.

My 2 Cents

Here’s my 2 cents.  Diabetes is in no way a disability.  I live a normal life, I just so happen to be diabetic.  In the 6 years that I have had diabetes there has not been one single time that I have had to say, “no I can’t do that because I have diabetes.”  I eat ice cream cake for birthdays, I ride roller coasters that go upside down(Manta @SeaWorld)Manta_SeaWorld while wearing a pump hooked to my hip, I test my blood sugar at the table, at the desk, in the bathroom, at work, at the dinner table, I do everything someone without diabetes does, but more!  I don’t see diabetes in any way being a disability.  With proper management, you can control it.  A disability to me is something that you can’t control.

I think using diabetes as a disability is a scape goat for a lawsuit. Sure, there may be a reason that you don’t get a job because of diabetes, but that is a discrimination, primarily based upon ignorance and the cost of your health to the company hiring you.  So, if you are going to file a suit against somebody for discriminating against your diabetes it should be because you are defending that it isn’t a disability and that you are able to do the job just the same as someone without diabetes.  Instead, the guy in this article is fighting the FBI and saying that he was denied the job because he DOES have a disability and the FBI is claiming that his diabetes is not a disability.

This irritates me.  To think that the ADA is doing a 2 1/2 page article in their magazine talking about how diabetes is a disability.  What kind of negative thinking is that?  Not the kind that I want to think about.  How about they write articles about how it’s not a disability, but people’s pure ignorance to think that we can’t do something just because we have diabetes.  I don’t know.  But what I do know is that I’m not going to have an organization that is supposed to be furthering advocacy for the disease I live with, start to take steps backwards.

If you want to accept diabetes as a disability, then be my guest.  That’s your life decision.  But I’m not going to let this damn thing hold me down!

I would love to hear ya’ll feedback.

MMM….Insulin

MMM….Insulin.  That’s what I said to myself today around 10:00 a.m. when a co-worker came up to my desk and said, there’s a package downstairs for you.  I was starting to get extremely nervous because about 20 minutes before that, my pump beeped and said “Low Reservoir” and I was completely out of insulin.  I am supposed to get a phone call when my insulin is shipped, but I never received a phone call, so I was really worried because it was Friday and I knew it wouldn’t be delivered on the weekend.  I finally received that call about 3 hours after the insulin was delivered, what good was that?

Once that new shipment of insulin came I took out 1 vial to let it settle to room temperature because I knew I would need to re-fill it soon.  I think we all know that cold insulin does not feel good at all.  I can remember the first time I took cold insulin, it was through an insulin pen, it burned like crazy.  I felt like somebody took a lighter and just put it up to my skin.  Never did that ever again. Now, into the problem that I have with my insulin company.

I have never seen a company so…ridiculous…for a lack of words.  It is the mail order company that my insurance requires me to use for my mail order services.  Last Friday I filled out the order form and faxed it in and faxed in the prescription that my doctor had just written out for me.  Not good enough for them because the prescription has to come directly from the doctor.  So, I called the doctor’s office and they then faxed it over to them.  Nope, still not good enough.  I have to fill out the order form myself, with my insurance information, billing, shipping, all the good stuff.  Then I have to fax that form to my doctor, who then has to fill out the prescription on that piece of paper, so it can’t be a separate prescription, it has to be hand-written onto that sheet.  Then finally my doctor’s office can fax it over.  So this took up until Monday to finally complete.  Then once they receive it, it takes 24-48 hours to enter the order into the system (I don’t know how it can take that long).  Once the order is in the system it takes 3-5 business to process the order (once again, no idea how it takes that long), but oh don’t worry they ship it overnight for free.  Well you freakin should for taking a damn week to process it!

Well, as you see here, my insulin is in my possession, finally, and I am very happy to see it here.  Time to now put it into the fridge and let it stay there until I need it.  Luckily I won’t have to go through this in December when I re-order because the prescription will be on file.

Well, it’s 8:00 p.m. Friday night, I need to go.  Good news today, my LLC finally went through, official company name is “CSI Marketing Solutions, LLC”

Top 5 Diabetes Things to Remember When Attending Conferences

I do attend a lot of conferences and do a lot of traveling so I was thinking about the checklist that I go through and how it has helped me with all of my traveling that I do.  Here is my top 5 things to do to prepare for a conference, Diabetes style.

1. Make a List

The first thing is to just grab a pen and paper and just start writing down every single thing that comes to your mind that you may need in the next few days or weeks.  Just look around the room and write it down.  Picture Steve Carrell’s character in “Anchorman” when he starts naming everything in the room that he loves.  “I love lamp”.  Everything that you see, write it down.  It’s a brainstorming session.  You can then go back later and make a decision on what things you actually need and which you won’t need at all.  Don’t organize, don’t worry about duplicates.  Obviously, you need your socks and undies, but I always start my list by sitting in front of my “diabetes cabinet” and just tart writing everything down.

2. Scrub the List

The next step is to scrub the list and go through the things that you actually need and get rid of the things that you don’t need.  Once again, I start with the diabetes stuff, “all I need is my pump and my wallet”.  That is my motto when I travel.  If you are only traveling for one day, you probably don’t 5 pairs of pants and shorts.  But you will require 4-5 infusion sets, reservoirs and about 2 vials of insulin.  Pack wisely because of the high costs of traveling with luggage now, so don’t put too much stuff in the suitcase.

3. Carry On Your Supplies

I take my laptop bag with me along with a second drawstring bag.  It makes it easier when Amanda is with me because, she can carry the second bag in her big ole’ carry-on bag.  However, most of the time I fly alone.  I make sure that I have enough supplies to last me double the time of the trip, so the quantity of supplies will vary.  So the bag consists of infusion sets, reservoirs, inserters, IV prep, insulin, 2 meters, strips, lancets, IV dressings and any other little things I may use to manage my diabetes.  I usually get my bag pulled off to the side for a quick search about 75% of the time, I am used to it by now.  It is well worth the additional 5 minutes instead of it being in my checked luggage and having it lost in transit and being without supplies for a week.

4. Prepare for Emergencies Before You Get There

Contact the hotel, conference center and company putting on the conference before hand to find out information on what kind of food or juices that they may be having.  I always contact the hotel before hand and let them know that I need a fridge in my room so I can put my orange juice in there.  Also, ask if the hotel has a deli or snack area to go pick up some juice if you run out.testing at Renaissance Orlando

Next, speak with the actual conference center where the event will be.  Find out where any snack bars or vending machines are in case you need to get up for some juice.  If you are the type of person that is afraid to tell people about your diabetes, then this isn’t for you.  Simply tell them beforehand that you are diabetic and explain what you may need and they should be able to make accommodations or tell you where these things are.  Finally, most conferences have already planned out what they are planning serving for lunch or dinner so send a quick e-mail to the staff putting the event on and they may be able to give you some sort of idea of what is going to be served. This is great to know, so you know if you need to fill up another reservoir before you go into the session or bring an extra insulin pen with you.  It also helps with knowing approximately how many carbs are in what you.  (Unless you have an IPhone, there is an app for that.  Rumor has it, there’s an app that runs your whole life).

5. Test, Test, Test, Test

Just like anything else that you are doing in life, it is absolutely important for you to test your sugar constantly.  I tend to test myself in between sessions so that way I can prepare for a low at that time.  I hate to miss information at a conference, because I paid for the damn thing I want to be there the whole time.  If I have a low in the middle then there goes some information that I am going to miss.  Also, don’t be scared to pull out your meter in front of people.  It actually is a good networking tool.  It sparks conversations for me and then that is just another person that I was able to meet at the conference.  In a way, it is an ice-breaker for me.

I hope this was helpful for all of you.  I am sure that you all have your own method of planning for attending a conference, so I would like to hear some of your other ideas and planning methods.

Have a great day ya’ll.