When everything feels like it’s falling apart

October 2013 – We trash the car and decide to rely on public transportation and the kindness of coworkers to get around while we save for a new car – avoid debt and earn environmentalist brownie points at the same time.  I also get seated on a 6 month long jury duty which takes me away from work 2 days a week.

New Year’s Eve – M’s immigration paperwork has problems – looks like we’ll have to move to Germany where Insulin pumps are not considered necessary, CSMs are nearly never prescribed, and I barely have an elementary grasp of the language.

January 2 – Dex transmitter battery is out of juice (I should be glad it lasted this long – it’s only supposed to last 6 mo and I’ve had it over a year).  And now no Dex (!)  I’ve ordered a new one, and my insurance will pay, but I’m still waiting on a signature from my Endo.

January 4 – We’ve been noticing that the Hedgehog isn’t using his hind legs as well as usual and one of his eyes is looking red and bulgy. We take him to the vet (goodbye $150 and the cost of a Zipcar rental) and receive a prognosis akin to “there’s nothing we can do that doesn’t cost a fortune and cause him more pain that he’s in now.”  We bring him home with some eye drops and a phone number to call if he takes a turn for the worse.

January 6 – While at jury duty, I receive a goodbye email from my favorite coworker.  Then I receive 2 more.  By the end of the day a third of Company X has been laid off.  Not me, thankfully, but I have to take a 20% pay cut until things turn around (and, frankly, that doesn’t look likely).  To top it off, my carpool was part of the lay-off and now my commute to work is now 1.5 hr each way rather than 25 min (because of the lovely decision we made regarding the car back in October).  We went through something similar about 6 mo ago but it felt less dire that time. Oh, the joys of working for a start-up company.

January 8 – We notice that the apartment is a bit cold and start to question when the last time we felt the radiators kick on.

January 9 – There’s a letter taped to the door of the apartment saying that the boiler is broken and they don’t anticipate heat being restored before Wed – Fri of next week.  Our options are to be cold as we attempt to heat the apartment by oven or fork out money we don’t have to stay in a hotel (see Jan 6, above).  Our lovely landlord isn’t helping at all (and we’ve neglected to buy renters insurance to cover these sorts of costs).

If the last two weeks were intended to set the tone for the coming year, I vote we skip 2014 altogether and embark on 2015 instead.  Who’s in?

New Year, New Adventures, and a Request

I don’t usually do New Year’s resolutions; I’ve found that I am more successful at making changes in my life when I initially realize something needs to change, rather than waiting for an arbitrarily later time.  Plus, this year, I need to contain most of my resolve for a potential major life change.  For M and I, it is becoming increasingly likely that we’ll need to make a move to Germany in 2014.

You see, 5 years ago I fell in love with a German.  M and I moved together from Indiana to Boston and it’s always been understood that when M’s work visa expires, we’d move to Germany for awhile. (Or forever… Don’t tell my mother…)  That time is coming in September.  Since neither of us is fully ready to move right now (I like my job, moving is expensive and my school loans are barely paid off, our current proximity to Joslin is ideal while we contemplate our future family, etc), we’re working on obtaining a new visa or a green card for M but we’re planning for what is probably the inevitable.

I’ve made some effort to learn German but am still have an underwhelming grasp of the German language.  M has decided that the remedy for this is for him to speak to me only in German from now on. This should be interesting.

More importantly (or maybe just equally important), I’ve been reading up on life in Germany for an American expat with diabetes.  Unfortunately, that info is not altogether easy to come by.  I can rely on M for info about the German social health care system, and the internet has plenty of resources for both diabetics and expats, but what it seems to be lacking is a mixing of the two.

What I’ve learned is that an insulin pump is not the standard of care in Germany and insurance coverage for one needs to be fought for on an individual basis.  CGMs are basically never covered and would certainly need to be paid for out of pocket.  My poor German language skills are certainly going to make it tricky to find a job (luckily English is widely spoken in science so I might be in luck…) so we are unlikely to be able to afford such extravagant things initially and I haven’t been on MDI in 12 years!  This is a slightly terrifying prospect and some first-hand info would be greatly appreciated. (Please help!!)

Clearly diabetes in Germany can’t be all bad.  There’s the MySugr app (Ok, it’s from Austria but they speak German so I’m counting it), Mein Diabetes Blog, many, manydiabetes online resources, etc.

Which brings me to the request.  I’m asking you, the DOC, to please comment below with your links, advice, first-hand accounts dealing with insurance in Germany, or any information at all about being a diabetic expat in any EU country; we are willing to move anywhere where we can find jobs and D covered.  I’m looking for things like insurance for foreigners, any policies regarding diabetics and driving,  access to  and cost  of insulin pumps and CGMS, etc.  I plan to do the same and turn this page into a hub full of info for any diabetic looking to make a move to the EU.

Thanks for your help!

Cupcakes for the WIN!

Here in Boston, a group of us diabetics have been getting together over dinner, drinks, and sometimes cupcakes. These gatherings are loads of fun; we keep it informal and unscripted and we tend to laugh a lot and eat a lot.

Last week, the plan was to get together at a local cupcake bakery to indulge, then find a place to eat said cupcakes and hang out.  On the day of, I emailed M the address of the place to see if he’d be willing to drop me – I never would have made it in time if I have to drive home during rush hour then take public transportation – and jokingly this is how he responded:

Seriously, diabetic meeting at a cupcake store?

I will drive by and take a picture for the fail-blog…..

My first response to this email was to roll my eyes and chuckle – I can certainly see the irony.  But then I got to thinking: Is a group of diabetics eating at a cupcake shop really a FAIL, or is it actually more of a WIN? 

Here is my logic.  A FAIL would imply that we were acting under some false assumption that what we are doing is ok.  I would, however argue that it is not a false assumption.  With modern medical technology, a diabetic is equipped with the tools necessary to essentially function like a pancreas.  We also have the knowledge to correctly dose for the cupcake, and in some cases the will power to eat only half, or avoid the frosting.    To me this sounds like a WIN.

What do you think?

Taking Diabetes to Work

I started my new job at Company X last week. I have my very own cubical equipped with my very own computer, phone, and stapler; my very own fume hood equipped with a fancy new Schlenk line, vacuum pump, and shiny stir plates and lab jacks (I am a R&D chemist, btw); a slew of friendly and helpful coworkers; and a comfortable paycheck and benefits package (can you say “Yay! for dental insurance!”). Needless to say I am happy.

However, with a new job comes the need to introduce my diabetes to a new environment and new people. Something that I’m never sure exactly how to approach. Do I let people find out organically and not tell anyone unless it “comes up” or do I “disclose” my diabetes to my boss and few select coworkers as I get to know people? And how will my diabetes react to my new schedule?

The latter has turned out to be the easy part. Relatively speaking. During my first 3 days of work I was low constantly so I reduced just about every rate and ratio by about 10%. Sine then D has been behaving and I think that over time I will have to stepwise adjust my rates back to pseudo pre-job numbers as I develop a routine and begin to settle in.

The tricky part is figuring out how to introduce D to new people. In the past I have tended toward the organic option, making more effort to keep my diabetes under wraps than developing an at-work D-support system. But, I also have never been as conscientious about my diabetes as I am now. But I still don’t feel completely comfortable beginning the disclosure conversation.

My immediate supervisor, JK, already knows – it came out as we were heading off to lunch on Day 1 and he was telling me about his recent vegan conversion (since D is also a bit a bout food choices, it fit right in). His response was typical. “Oh, that’s interesting. My [insert distant relative here] died just last week from diabetes. She didn’t even know she had it before she was rushed to the hospital with a blood sugar of 900.” Yeah, mine isn’t like that. I explained to him that I have type one, had it since I was six. I wear an insulin pump and am otherwise completely healthy. That his distant relative is the exception, not the rule.

Then he stepped into the role of supervisor and asked me if there was anything he needed to know. I told him that I keep my diabetes well monitored but I could let him know the signs of low blood sugars and the appropriate emergency response, but really all I need is that he’s aware so that in case of an unrelated emergency he can make inform anyone else who needs to know. There. D-introduction done. Right?

The next day, the was training me on some piece of equipment when my BG began to trend low and Dex felt the need to inform me. Loudly. So I pulle doff my glove, reached into my pocket to silence Dex and put on a new glove. When I looked up, JK looked concerned and asked if everything is ok. I blushed and simply said “yep – everything’s fine” and the training continued.

Now I think that maybe I need to sit him down and give a breif tutorial about my different bionic parts, the noises they make, and the implications of those noises. The last thing I want is to be sitting in a meeting, have Dex go off, and have everyone think that I’m reaching in my pocket to return a text or something. I’d rather the explanation be preemptive.

But I don’t know how to begin that conversation. Despite my new found comfort with D, I’m still uncomfortable talking about it with people unfamiliar with D.

Then there’s the conversation I had with another coworker who was interested in seeing pictures of my hedgehog, which I have on my phone. She pointed to my pocket and said, “Do you have your phone with you?” As if she thought that even though I said I left my phone at my desk, I had something clearly cell-phone like in my pocket so I must’ve been mistaken. I told her that I did not in fact have my phone with me but would definitely show her later. I could have said a million other things. I could have told her what was in my pocket, showed her even. I could have brought her into the loop but I choked. And D remains under wraps.

I’m thinking of being really bold and beginning to wear my pump and Dex outside of my pockets at work. The idea behind this is two-fold. First, it would make life in the lab a bit easier. I would have better access to these devices and would be less likely to accidentally contaminate something by having to reach into my pocket to see them. Second, although people still wouldn’t necessarily know what they are, it would be more obvious what they aren’t and maybe these conversations would come more organically.

I’d be very interested in hearing how other people have approached introducing D at work. Please comment if you have any stories or insight.

Die-abetes vs. Live-abetes

First a little update:  As of 7/21 I was reunited with Dexcom and had planned to write a long Ode-to-Dexcom post but, alas, life had other plans.  Dex and I are living together quite happily now and I have forgiven him for his crazy, suicidal escapades.

In other news, I continue to be bad at updating this blog.

And to the point: How awful is it to have a disease with “die” in the name?  Seriously, who came up with that bright idea?  Especially since diabetes doesn’t have to be a death sentence.  In fact, this day and age, with all of the modern technology available, it should really be called live-abetes.

Normally I think of the word diabetes as just another word; only one that applies to me more than most.  But in just the right context I really HATE that word.  I hate having a disease looming over my every thought and action.  I hate having to think about every bit of food or tiny bit of exercise.  I hate having my pocket space constantly taken by my pump and CGM and leaving nowhere to put my cell phone.

But being a diabetic just isn’t that bad.  I may be hooked up to multiple pieces of medical equipment, but I always have the time.  And I may have to go to the doctor on a regular basis, but at least I understand what it means to be “healthy” and I don’t fear the doctor’s office the way many of my non-D friends seem to.  And, although it isn’t always my favorite topic to talk about, I have been able to connect to people that I may never otherwise have known (which is a big deal when you move to a new city where school no longer exists as kindling to start friendships).  D sucks but I can certainly live with it.