Diabetes And Job Hunting

In nearly every book or website I read after diagnosis there was a section on disclosing your diabetes to your employer, current or prospective.  Should you or shouldn't you? How do you go about it?  I never paid it much mind because I didn't see myself as a job seeker anytime soon.  However, in the last couple of weeks I have put myself onto the job market and had my first interview a couple of weeks ago.  In the week leading into it I found myself thinking about how I would handle the diabetes aspect of it.  I am not afraid to bring up my diabetes but I'm also not one to just throw it into everyday conversation.  I had more or less decided that it wasn't something I would be talking about in the interview but it was bound to come up early on in the job , should I get it, and I would talk about then.  Basically, just let it come up naturally.  That's not quite how it went then.  About halfway through the interview I was asked what was something I knew more about than the average person.  Without a hitch I blurted out "diabetes."  After which I had to choose a product related to diabetes to sell to the interviewer.  I chose to sell them a Dexcom CGM.  Which was easy to rave about but I had to resist the urge to lift up my shirt and show them the sensor.  And I could not show them the receiver because I forgot it at home as I was trying to rush out the door.  So there it was, all out on the table.  I'm sure the topic isn't going to come about that way in most new jobs, but it also didn't seem to phase the two people delivering the interview either.  I would hope that most employers these days are able to see past something like this and realize that although we are people with diabetes, there is much more to us than that.

How The Other Half Lives (Guest Post)

This post was written by my wife, Shanda.  I think it provides a great glimpse into how diabetes effects the loved ones of those who have it.  It took me over two years to really start to think about what my diabetes meant to her and my kids, not just what it does to my life.

When Craig was first diagnosed with type 2 diabetes it was a shock. He had pretty much diagnosed himself before we got the official test done, but as a WebMD hypochondriac myself, in my mind I shrugged it off as "there's no way" and "he's overreacting". Then the official word came. And everything changed. I was devastated for him and for his love of sugary drinks and ice cream. But mostly, I was terrified. I was terrified of how he would react to the news. I was terrified I would lose him. I was terrified of the possibility of the genes being passed on to our kids. And as I began to read about the disease I became even more terrified of the risk of complications. But I knew I had to be there for him and be strong for him so I made the decision to stop reading about it all. Whatever COULD happen, I didn't want to know. Because I knew I would break down too and that wouldn't help. But that wasn't a good call to make either.
As I stopped reading about the complications I also stopped learning about the disease itself and about the ways he needed to manage it. And by doing that I started to lose him in a different way. He thought I wasn't interested and that I wasn't supporting him in the ways he needed. And although I didn't realize it at the time, this added to problems that already existed in our marriage.
For a year we got by, doing the best we could (well, him doing the best HE could) to change his diet, find a medication that would work, and get frustrated and emotional when things weren't improving the way they should be. And then when he switched doctors we found out it wasn't actually type 2 diabetes. It was type 1. And everything changed. Again.
Now he had to factor insulin into his daily life. I was nervous. I began to read about it again. I read about the scary night time lows. I read a blog post from somebody about an extreme night time low episode he had where he was hallucinating and became violent toward his wife. And it was scary all over again. I thought about what I would do in such a situation. And now more than just worrying about my husbands health and safety, I thought about my safety and the safety of our kids. I don't think I told him about these fears because I didn't want to make him feel bad or worry about us too. He didn't need that. But those fears were there in my mind.
He had to learn a new way to manage things. He had to learn to navigate the use of insulin and how it affected him at different times of the day, or with different foods he ate. He had to learn to navigate highs and lows and which numbers needed treatment right away and which ones could just be watched for a while. And I had to learn to navigate the mood swings that accompanied the highs and lows, a skill that I'm still not very good at. Our kids watch the things he goes through everyday. Checking his blood sugar, inserting a new cgm unit, giving himself injections... And while our daughter is too young to talk about it, our son is so smart and so intuitive and has been interested from the very beginning. He talks about blood sugar ("Mom, is it blood sugar? Or sugar blood?"), he very unselfishly eats candy so that daddy isn't tempted, he asks questions, he wants to learn, and he knows daddy is doing what he needs to do to keep himself healthy. And I'm proud of our husband for setting that good example for our kids, and for showing them that he's doing what he can to be around for them for a very long time. One night our son was pretending to read a book about sharks and he said the shark needed to check his blood sugar after he ate. And while it was very cute and endearing, it was also a little bit sad.  Five year olds shouldn't have to know or think about these things. And when I think about the little ones diagnosed with type 1 at such a young age, and have to go through these things themselves, it makes me so sad and it makes me scared again for our own kids.
Craig said something in his previous post that is definitely true. As hard as I try to understand what he's going through, I will never truly know. And I think in a way this drives a bit of a wedge between us. Sometimes I feel like he is pushing me away because he thinks I just can't understand what he's going through so why try to explain and confide in me. And maybe, in a way, I push him away sometimes by not getting it and not understanding why he can't just do certain things. Whatever really happens, I know there are a lot of times that we both feel hurt and alone. And while I know that all marriages are hard and take a lot of work, I think what we go through takes even more work. And even more support and more understanding. And although there have been times that I wasn't sure we would make it through, I keep fighting because I love him and I promised to be here. And I hope he keeps fighting for us too. And I hope he fights for himself and his health just as much.
So I guess I have a request for everyone living with diabetes... I think it's true that diabetes is a very personal illness. The way you manage it and treat it, the way you feel about it, the way it affects every minute of your life... All depends on you. Everyone is different. Everyone handles it different. But it also affects everyone IN your life. So while I agree whole heartedly that you need to do what works for you, I also urge you to think about the people that love you. Let them in. Let them be there. Let them care about you and worry about you. It will help you both in the long run. Because while you are hurting or stressed out about dealing with it, it also hurts the people who care about you to see you hurt alone. Having support makes so much difference, no matter what you go through in life.

The Other Half

Often times I get pretty caught up in the way living with diabetes makes ME feel.  It is this all consuming thing that is never far from my mind and effects nearly every decision that I make.  It can be incredibly frustrating to have no one around who can relate to the situations this disease puts me in.  I have mood swings frequently, sometimes because of fluctuating blood sugars, sometimes for God knows why.  I get down in the dumps, sometimes out of nowhere, and can't offer much of an explanation why.  And when these things come about I can be hard on the Pretty Lady In My Life because she just can't quite understand what I'm going through.  But, I read something yesterday that has resonated through my head ever since.  What is it like for those people who have to watch a loved one deal with diabetes and want so badly to understand but not be able to.  It is hard for me to watch my children be sick and not be able to fully understand or explain what is going on. I am sure this pales in comparison to having to watch someone you love go through constant ups and downs only to get upset when you do things to try to understand what they are going through.  I think far too often in terms of "me" with my diabetes.  Why can't they offer Me a little sympathy?  Why don't they understand how hard some days are for ME?  They will never get what I am going through.  I have spent the last day or so trying to look at the other side of the coin.  What is it like for my loved ones to take this ride with me and not be able to fully relate or understand.  My children are still to young to understand.  They just see Daddy poke himself to check for sugar and give medicine to keep him well.  The one I feel most bad about is the Pretty Lady.  She is the one who tried to be there, does her best to understand, digs to try to find answers behind my moods, but gets few thanks, and often a lot of attitude in return.  When we said "in sickness and in health" neither of us had any inkling of what was coming.  I would understand if she saw me as damaged goods and did not want to endure whatever is to come.  But she doesn't.  She loves every part of me and tried to get it, even while I stubbornly sulk over the fact that she never will.

Dead Dexcom

Last night before going to bed I got a low battery alert on my Dexcom.  So, when I crawled into bed I plugged it into the USB cord on my bed like I always do and drifted off into dreamland.  I had polished off a few remaining Christmas sweets earlier that night and was a little high but had taken a correction bolus before bed. All through the night I was awakened by Dexcom alarms.  Each time I would assume it was me still being high, glance at the screen through blurry eyes and go back to sleep because things were trending down toward normal and I didn't want to deal with a midnight low.  It wasn't until this morning that I realized what those alarms really were.  After waking up with two tiny humans crawling all over the bed I drearily rolled over to check my by status.  I was surprised to see a low battery warning on the screen.  I assumed it had come unplugged at some point when I was checking it during the night so I tried to plug it back in but something did not seem right.

Upon further investigation I saw the USB port had been pushed up inside the Dexcom receiver and was freely wiggling aroun inside.  I tried unsuccessfully to pull it back to where it should be a few times before giving up and throwng it on the bed in disgust (I'm not a morning person, especially after a night of constantly interrupted sleep).  I stewed in my frustration for a few minutes while I tried to decide how I was either going to afford a new receiver or adjust back to life without a CGM.  The Pretty Lady in My Life kept her cool and found online that this had happened to a few other people and Dexcom had replace theirs under warranty.  I was relieved but not looking to spending time on the phone fighting with customer service representatives (It's that whole not a morning person thing again).  I called the customer service number on Dexcoms website, ready to have to answer a million questions and try to justify why this should be covered by the warranty but I was wrong.

I followed the phone tree to technical support, was on hold for maybe 30 seconds and was greeted by a customer service rep (whose name I wish I could remember).  I explained my situation and she asked for the serial number from my unit and confirmed that it was still under warranty.  She asked if the unit had been dropped or exposed to water and made sure address was correct.  Next she told me the new receiver would be sent out today with overnight shipping but probably wouldn't be here until Thursday because of New Years.  I was in shock.  No long hold times?  No twenty questions?  No attempts to get out of covering the replacement?  The whole process took less than 5 minutes.  She even threw in a free sensor because I would have to change mine prior to the 7 days when the new receiver arrived.  Hands down the best experience I've had dealing with a customer service from any company, for any issue.  Good job, Dexcom.  You are doing it right.

Insurance perils

            I have been unsatisfied (that’s putting it lightly), with my insurance company for several years now.  Basically, as long as I’ve had it.  First, it was because I hated paying so much into it that I would never get back.  When it was just The Pretty Lady and I we had no chance of meeting our deductible.  Even now with two kids, one with asthma, and myself with a chronic disease we barely have a chance of meeting our deductible.  This year was the exception because of added expenses after my diagnosis being changed to Type 1 which meant extra doctors visits and tests and more expensive medicine, my son being hospitalized for the second time in 6 months, and my daughter having surgery to put tubes in her ears.  On top of that we took advantage of having our deductible met and I took the plunge to get a CGM (best investment ever, if only the insurance company understood the money this would save down the road), and my daughter had her tonsils removed.  Not only did we meet our deductible, we hit our out of pocket maximum.  Despite that, and the fact that we met our deductible last year, I was still sitting on over $5000 dollars in doctors’ bills.   So, this is my gripe; in the last 2 years I have racked up in excess of $5000 of bills, not including co-pays on insulin, test strips, oral medications, CGM sensors, and inhalers, paid over $7000 in premiums, and haven’t really seen a pay increase at work because the rise in premiums has negated it every year I’ve been in my current job, yet I don’t really feel like I’ve gotten $12,000 worth of service out of them.  And this week I came across what was essentially the straw breaking the camels back on another blog.  And thank the stars that I did find out now instead of the first time I tried to fill a prescription in January because bad things may have happened.

            My insurance originally used Medco for our pharmacy benefits, which merged or was swallowed up by (I forget which) Express Scripts a few years back.  Initially that was of little or no impact to my coverage until this happened.  Express Scripts has announced that they will have a list “excluded drugs” that they will not cover because “clinical data shows there are other products effective in the marketplace.”  I realize that insurance companies are for-profit entities and they answer to shareholders, have to make a profit, etc.  I also understand that pharmaceutical companies have increased the cost of medications and that most of the ones on the exclusion list are more expensive.  I get that the profits of the insurance company take a hit if I fill a prescription costs $200 and pay a $30 co-pay as opposed to filling a $100 prescription with the same co-pay (I’m bad at math, but not that bad).  This move hits me twofold.  I use Apidra as my rapid acting insulin to bolus for mealtimes and treat high blood sugars.  I use an Accu-Chek meter and test strips to monitor my blood sugar and calibrate my CGM.  My son uses Advair as a controller medicine for his asthma.  All three are now on Express Scripts exclusion list.  They recommend Humalog as the equivalent for Apidra.  Although the times it takes for the two different drugs differ, as do the peak times, I am sure I can adjust to this and still manage my blood sugar just fine.  There is a bigger problem with my son’s inhaled steroid.  He was recently switched to Advair by his pulmonologist because Symbicort was not effective at keeping his asthma under control.  The Advair, however, has been great.  He has had no attacks and no need for his rescue inhaler since changing over. There are 2 suggested alternatives to Advair on the Express Scripts list.  And if you guessed that one of them is Symbicort, then you my friend are correct.  There is one other alternative as well, but if it does not work either we will be stuck paying full retail price for this drug.  Express Scripts pays an outside group to analyze the drugs in each group and determine what ones are comparable and do the same thing.  That group apparently has determined that Symbicort and Advair are effectively the same drug.  They are used to treat the same condition and same symptoms, but my son is proof that they are not the same drug and both have different benefits for different people.  If that is true in his case, I have to believe that the same is true for many other people on the other 47 drugs that are excluded from coverage.  Which according to the articles I read, factors out to 2.6% of Express Scripts customers.  Which seems measly, but it’s still 780,000 people.

 

            Perhaps my anger is misdirected and should be directed at the drug companies themselves for their outrageous prices.  But I feel like if I am paying $3500 a year in premiums for “coverage” then I should be getting a little more in return.  Instead, I am paying more and getting less every year.

 

http://www.pharmalive.com/why-express-scripts-tossed-48-drugs-off-its-formulary-miller-explains

Pic-a-day 13- Awareness

My Dexcom CGM keeps me constantly aware of where my blood sugar is, when I am going low, and how the food I eat effects it.  I feel a certain amount of guilt when I have eaten something I know I shouldn't have and hear that familiar tone.

Pic-a-day 12: Work

For the life of me I could not think of a picture to post for work.  But I will say that, although I am often frustrated and not passionate about the job I have, I am thankful for it.  The job itself can be high stress but it is secure and allows me to do what I need to take care of my family, take time when I need it, and manage my diabetes, even when that means sitting down in the middle of my shift to eat a Snickers