Friday, September 18, 2009

Fact of Life #5: Denial (No, not theirs, yours!)

People talk a lot about "denial" when they talk about diabetes... about how the PWD in their life doesn't take care of themselves, how they pretend the diabetes doesn't exist, how they do whatever they want around their disease... and so on, and so on. We've heard it - and talked about it, with friends, family, doctors - many times before.

But how many times have we actually stopped to look at the flip side of that... at the fact that we as spouses, partners, loved ones of the PWD may actually be living with a form of denial all our own?

I think it is true of anyone who lives with and loves a person with diabetes, that there are many moments of
wishing that the diabetes didn't exist or was gone magically (poof!) one day. For me it is a matter of wishing I could take it all away from my husband, so that he could go back to those carefree days where he wouldn't have to think about, worry about, or deal with those diabetes ups and downs on an hourly basis. Of course I don't share this feeling with him (until now, that is!), because unfortunately - as we all know - just wishing the diabetes was gone doesn't make it so... or make it productive, so I just push that notion back under the rug from whence it came.

But I wonder sometimes if that desire to have the diabetes "gone" creates a unique type of denial for me as a spouse ... something I would term the "No-Big-Deal-ness" that I find myself feeling or communicating to other people around my husband's diabetes.

As a spouse, I think that a certain level of "denial" of the disease is healthy ... in order to keep the diabetes in its place and not allow it to rule, or define, our lives. However, I've also come to realize that there are times that I find myself in that different kind of denial... the one where even though I recognize (of course) that the diabetes is there, that it is not going anywhere, that it is a fact of our lives, I still find myself thinking "it's not so bad ... and because it isn't bad now, it never will be. Ever, ever, ever."

I know I am one of the lucky ones - my husband has had type 1 now for 12 years, with no complications and only a handful of serious low episodes. He is very proactive in his care - wears a pump, checks his numbers many times a day, counts his carbs, sees his doctors and has his A1c checked regularly - and I am always awed and grateful for how well he does all of this.

In a way I think his good management of the diabetes has facilitated my unique form of denial ... not to put any blame on him of course (who wouldn't want a spouse who takes care of business?!), but I almost feel like the fact that his diabetes has remained largely "invisible" has allowed me to lull myself into that "no big deal" denial.

For others whose partner's may not be taking as good care with their diabetes, and may in fact be in denial of their own disease, it may be a realization that you too are somehow a "partner in crime", abetting your partner's denial with your own participation in, or encouragement of, things that are less than optimal for your loved one's daily management... that regular trip to the ice cream store? Getting upset with your partner with the disruption that checking blood sugars or treating the diabetes makes in your daily routine? Making it difficult for them, and for you?

Regardless of how we got here, I'm starting to think that this type of "no big deal" denial isn't a great place for us to be.

People have shared with me that one of the worst experiences for them as a spouse of someone with type 1, is finding themselves "unaware" and unprepared for a diabetes-related event. For some it has been the onset of a complication where there didn't used to be one - for others, the first call to the paramedics for a low that couldn't be reversed. And for others who have spouses who have lived with diabetes for many years, it is the worsening of an already existing complication to the point where it truly begins to become a part of their daily lives in a way that cannot be denied.

How do we prepare ourselves and open up the "can of worms" of feelings around our partner's diabetes that our current denial - our it's "no-big-deal-ness" - protects us from? How do we come to terms with our loved one's disease and give it a place in our lives... a place that respects it for what it is, yet empowers us to stay in control of our emotions and reactions to it?

Here is my take on it - I encourage you to comment and give me yours:
  1. Be realistic - Get the information you need to know what you're dealing with. Where is your partner's diabetes at? What challenges do they have right now? Learn as much as you can, both from your loved one as well as from others in your diabetes network, and let that frame what you think (and what you feel) about where the diabetes is and is likely to go in the near future. In this case, what you don't know can hurt you (and your partner), so now's the time to get real. It's the only way that you can be on the same page with your partner.

  2. Get angry or sad if you need to - Once you know what you're dealing with, it's natural to feel sad or angry or both if the information is not what you were hoping for. You may run the gamut of emotions - from fear, to loss, to anger at your partner, to relief if the news is better than you expected. Regardless of what it is, I think it is critical to really stop and feel the feelings you have around this. You may or may not choose to share them with your partner - however, it is important to find someone to talk about it with, to get it out in the open. Empower yourself by acknowledging and addressing your feelings head-on. Burying your head under the rug never helped anyone!

  3. Accept it - This is a biggie, and it takes time. The goal is to get to a place where you feel "okay" with the truth of your spouse's diabetes, and you know your role and are comfortable with it. You don't feel the need to downplay (or dramatize) the diabetes, but are realistic with where it is and where it is going. You recognize the possibilities (good and bad) in the future, and have thought about how they might affect you (and how you might respond). You've come to a place where the diabetes just is in your life, and you're okay with that.

  4. Partner Up and Move on - I think that more than just accepting our loved one's diabetes, we need to feel the ability to partner with them and move past it. This may mean figuring out a way to have the disease in your life, but not having it BE your life.... having those life strategies and "plan B's" that you can implement if things go south, and not being unalterably shocked or affected if diabetes-related events surprise you. It means having some resilience, together as a couple facing the disease and moving forward. Living well with the diabetes ... both of you.

Sunday, September 6, 2009

Fact of Life #4: Diabetes Never Takes a Vacation!

Well, we're back from a wonderful 3 week trip to Spain... Since my husband Tony is from Barcelona, we went over to visit family and to enjoy the Balearic Islands a little bit. For the most part, it was idyllic ... sun, the sea, warm air, salt, the food, the people... glorious. And it would have been completely glorious, that is, if diabetes hadn't decided to "bud in" once again, and remind us that - indeed - diabetes never takes a vacation.

But I'm getting ahead of myself... let me share with you all a wee bit of our vacation story, and see if any of you can relate. Firstly (and this was a big deal) it was our first time flying overseas with not just ONE child in tow, but with TWO ... our son is 6 and our daughter is 18 months... and for those of you with kids, you know how it does up the chaos/exhaustion a wee bit. Especially when you are juggling carry-on bags, toys/snacks, diapers, diabetes supplies and trying to keep your children entertained, your partner's numbers in check, and yourself sane for the 2-3 planes (and 2-3 security checkpoints) and 20+ hours of travel.

When we finally landed bleary-eyed in Barcelona, the first exciting thing that happened is that my husband Tony realized (with horror) that the toiletries bag he had packed in our carry-on bag that contained all of his carefully prepared insulin cartridges for his pump, as well as all of his vials of humalog/syringes, had vanished somewhere on one of the planes between San Diego and Barcelona. We immediately tried to work with Delta Airlines baggage services to figure out where it might be (not an easy task in Spain with two tired kids crying), and whether somebody had picked it up from where we guessed was underneath one of our seats (that's the last time we buy a black toiletries bag that gets camouflaged on the floor in the chaos of trying to get kids off the plane and make a tight connection!). It never did materialize... because who thinks to put a Delta tag on a toiletries bag that is supposed to be inside your carry-on??

So there we were, in Barcelona with no insulin for Tony other than what was in his current pump cartridge ... so we had about one day to get more. Luckily for us, Tony is a Spanish citizen and so was able to go to a medical clinic in Barcelona, see a doctor, and get a prescription for more insulin (thank god for socialized medicine!). But it still took a day out of the trip to make all this happen... I didn't mention that Tony's glasses were also in that toiletries case, so he had to decide whether he could wear his only pair of contacts 24/7, or get new glasses made. Chalk up another day for that.

But luckily, we had everything in place for our short trip over to the Balearic Island of Menorca (next to Mallorca, for those of you who know the islands). We were looking forward to a hassle-free time, keeping diabetes in its place... being more active, swimming, snorkeling, etc.... and it was like this, until the next exciting thing happened about 4 days into our stay: Tony's insulin pump stopped working! One day, boom!, 7pm on a Thursday evening, he didn't have any insulin delivery. So here we are, on an island in the Mediterranean, trying to figure out what to do, with a weekend approaching. We were also staying in a town where we didn't have a phone, and while there was a phone booth in the plaza, we still had to drive to the next town over to buy a calling card to be able to make calls to the U.S. Yes, things are more difficult over there... but most of the time you can roll with it! When it is urgent matters however, things seem a wee bit more, shall we say, trying. So after trying to figure out our game plan, we spent many hours on the phone first with Medtronic U.S. (who couldn't send us a new pump directly to the island due to Customs issues with durable medical devices), and then with Meditronic Spain in Madrid, where we were told it wasn't as simple as sending us a new pump, since the European equipment is different and the pump had to have a serial number that corresponded with Tony's doctor's original prescription for liability reasons. They also determined that the pump malfunctioned mostly likely due to the heat and humidity that we were experiencing in Spain (that I can agree with - there wasn't one minute that we didn't have that sheen of sweat on us). Okay, so there we were.

In the end we were able to get a new pump sent to us in the island by having Medtronic U.S. ship a new pump to the Madrid office of Medtronic internally (to limit the days it would sit in customs), who then shipped it on to us. All in all it took about 6 days ... In the meantime, Tony only had fast-acting Humalog with him, and for the first few days had to get up multiple times during the night (every 2 hours or so) to test his sugars and inject what he needed. We called his diabetes educator here in San Diego from a payphone, and we determined that if we could get ahold of some Lantus in Menorca, Tony could use that in combination with the Humalog until the pump arrived. With luck (and on our second try), we found a sympathetic pharmacist at one of the local pharmacies who sold us the Lantus without a prescription. We were so grateful - one thing was easy! - however, we had to buy the whole box of insulin pens (6 I think) so ended up paying 76euros for this (about $110 USD). But we whipped out our VISA card with glee! We were just so happy to have this one small victory.

Thankfully the new pump arrived unscathed and worked great. But the experience, and the amount of hours/days of our vacation lost to trying to deal with diabetes-related issues, remained in our heads. One of the reasons why I wanted to share this all with you, is that there were some significant "lessons learned" from this trip - even for us, who consider ourselves fairly well-travelled, diabetes-saavy, organized people! I hope some of you can benefit from what we learned - here they are:

Lessons Learned:

1. Never lose sight of the "important" stuff in transit: I couldn't believe that of all the things that we were juggling on the plane, the one thing that slipped our grasp was the most important (who cares about that portable DVD-player, really?!). Keep your eyes on the vital supplies - take inventory of them before you get caught in the crush of people trying to get off the plane - and if possible, store them in separate bags so that if one gets lost you still have a backup.

2. Make sure you have a back-up prescription from your doctor in the US for all vital stuff: It would have made life easier (and saved us half a day in doctor's appointments) if we had thought to bring a doctor's prescription from the U.S. for any required supplies (insulin - both Humalog and Lantus, test strips, syringes, etc.) whether we thought we'd need them or not.

3. Be organized! Before travelling create a "travel checklist" (that you can refer to any time you need to take a trip) to make sure you have all of the supplies you need with you, and then some. Always pack more than you think you'll need! Also, make sure you have all the important phone numbers with you (your doctor or diabetes educator in the US, their fax number, your pump tech support, etc.), and be prepared to make calls once you are at your destination (i.e., buy calling cards [multiple cards help, those minutes always run out faster than you think ... especially if you're waiting on hold], or rented cell phones, etc.)

4. Have a "Plan B" in case things go wrong and you need to go to your contingency plan: For us it was remembering how to give shots and use Lantus (hence the call to the diabetes educator), and figuring out how to bridge the gap until the new pump arrived. It would have been much less stressful if we had thought this through ahead of time and gotten all of the information we needed.

5. Know how your insurance works in whatever country you are going to: We had the luxury of being in a place where my husband had access to local healthcare. If we hadn't, it would have been much more difficult to go to the clinic. Make sure you know how you could access health services in any country you are visiting, and how your insurance would function if that was necessary. At minimum, know how to file a claim after the fact for any expenses you incur while travelling (like our $110 Lantus).

6. Know how the health / hospital system works in whatever country you are travelling to ... and remember, they are most likely very different from yours! A little bit of research in this area will save you a LOT of headache. Just doing your due diligence will help you in the event that you actually need to access the local healthcare - and it will help you know what to expect. Don't expect diabetes care to be the same as it is in the U.S. - in my experience, even in a country like Spain, diabetes mentality is a good 10-15 years behind the times.

7. Have the "in-country" phone numbers of any medical equipment you require: For us, it would have been smart for us to know the numbers of the Spanish office of Medtronic in Madrid, in case we needed them. Knowing what we know now about how customs work with medical equipment, I would definitely have those numbers handy in case you need to contact / work with people in the country you are in.

8. Find out what the overseas names are for products you use: For example, in Europe Humalog = Novorapid ... and it would have been good for us to know these things before we tried to talk with pharmacists and medical professionals about getting prescriptions for these.

9. Don't expect that airlines have a *clue* what a diabetes meal should consist of, so plan ahead for food on international flights: This one has just become a major pet peeve of mine! We thought ordering Tony "diabetic meals" for the international portion of the trip would be a good thing, but after the second meal where his breakfast tray consisted of a white bagel, whole sugar jam, a banana and orange juice, along with a note that read "this diabetic meal prepared especially for you by Delta Airlines" (I kid you not!!), we realized that we really are the only ones who know what/how a person with diabetes should eat... especially for a flight where you are sedentary for 10-18 hours. Bring your own food, you'll be glad you did!

10. Don't let it get to you!! Do what you need to do, but don't let diabetes mishaps define or ruin your vacation: This one is really true - yes, diabetes issues are awful when you are trying to have a good time on your trip, but they only interfere as much as you let them. I am extremely grateful that Tony kept his chin up and didn't let all of this get him (and us) down. He did what he needed to do, to the best of his ability. My reaction was to partner with him and support him as he made all of the phone calls, visited the pharmacies, and kept track of how his numbers were going ... I also made the conscious choice (there really was no choice to make) to stay positive and to cheer the good things that happened... the little wins that got us closer to getting him back on track. What were a few days lost on our trip, when it was his health and safety at stake? It sure put everything in perspective... and it all worked out. In the end.